tag:theconversation.com,2011:/us/topics/palliative-care-3094/articlesPalliative care – The Conversation2024-03-24T11:54:07Ztag:theconversation.com,2011:article/2254302024-03-24T11:54:07Z2024-03-24T11:54:07ZIncurable but not hopeless: How hope shapes patients’ awareness of their advanced cancer prognosis<figure><img src="https://images.theconversation.com/files/583288/original/file-20240320-17-am5kz4.jpg?ixlib=rb-1.1.0&rect=52%2C0%2C4932%2C3325&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies and exploring realistic goals.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, <a href="https://doi.org/10.1007/s00520-007-0336-6">prioritize cure as their highest hope</a>. </p>
<p>Patients with incurable cancer <a href="https://doi.org/10.1007/s005200100290">wish to be informed</a> about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.</p>
<h2>Prognostic awareness</h2>
<p><a href="https://doi.org/10.1111/1467-8519.00330">Physicians are ethically obligated</a> to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. <a href="https://doi.org/10.1177/1359105313484782">When oncologists talk to patients about prognosis</a>, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years). </p>
<p>Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, <a href="https://doi.org/10.1177/10499091211014166">will say the treatment goal is cure</a>.</p>
<figure class="align-center ">
<img alt="A younger woman hugging a seated older woman from behind" src="https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583289/original/file-20240320-16-p8p6ey.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Hope is a recognized coping strategy in patients with cancer.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p><a href="https://doi.org/10.1177/0269216316663976">Previous research indicates</a> that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication. </p>
<p>But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be <a href="https://doi.org/10.1023/a:1008336415362">ineffective, misguided or even harmful</a>.</p>
<p>Patients with incurable cancer are more likely to receive <a href="https://doi.org/10.1001/jama.300.14.1665">end-of-life care concordant with their preferences</a> when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.</p>
<p>In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose <a href="https://doi.org/10.1200/jco.2010.32.4459">intravenous chemotherapy in the last two months of life</a>, which would have been futile and worsened the quality of their end-of-life care.</p>
<h2>How prognostic awareness is measured</h2>
<p>Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a <a href="https://doi.org/10.1093/jnci/djad267">recent publication in the <em>Journal of the National Cancer Institute</em></a>, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.</p>
<p>In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).</p>
<p>A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.</p>
<p>These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.</p>
<h2>The role of hope</h2>
<figure class="align-center ">
<img alt="Doctor holds patient's arm with IV" src="https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/583777/original/file-20240322-18-r7c1zi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Not all cancer treatments are intended to cure the disease.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Hope is a <a href="https://doi.org/10.1016/j.ejca.2008.02.031">recognized coping strategy</a> in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.</p>
<p>In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can <a href="https://doi.org/10.1177/1049909112445371">re-direct hope to new goals beyond cure</a>, such as hope for connection with others and enjoyment of daily pleasures. </p>
<p>Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.</p>
<h2>Incorporating patient hope into prognostic awareness</h2>
<p>We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a <a href="https://doi.org/10.1093/jnci/djad267">trinary concept</a>: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.</p>
<p>We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.</p>
<p>This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.</p><img src="https://counter.theconversation.com/content/225430/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Patients with incurable cancer want to be informed about their disease and its treatment, but must also maintain hope. This inner conflict can affect how they process information about their prognosis.Jean Mathews, Assistant Professor, Departments of Medicine and Oncology, Queen's University, OntarioMichael Brundage, Professor Emeritus of Oncology and Public Health Sciences, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2238632024-02-22T01:22:51Z2024-02-22T01:22:51ZVoluntary assisted dying is different to suicide. But federal laws conflate them and restrict access to telehealth<figure><img src="https://images.theconversation.com/files/576955/original/file-20240221-30-6rt3ul.jpg?ixlib=rb-1.1.0&rect=125%2C224%2C2869%2C1773&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/depressed-elderly-widow-sitting-on-her-191917208">Daxiao Productions/Shutterstock</a></span></figcaption></figure><p>Voluntary assisted dying is now lawful in every Australian state and will soon begin in the <a href="https://www.justice.act.gov.au/justice-programs-and-initiatives/voluntary-assisted-dying-laws-in-the-act">Australian Capital Territory</a>.</p>
<p>However, it’s illegal to discuss it via <a href="https://www.mbsonline.gov.au/internet/mbsonline/publishing.nsf/Content/Factsheet-Telehealth-Updates-April%202023">telehealth</a>. That means people who live in rural and remote areas, or those who can’t physically go to see a doctor, may not be able to access the scheme.</p>
<p>A federal private members bill, introduced to parliament last week, aims to change this. So what’s proposed and why is it needed?</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1757948089271214377"}"></div></p>
<h2>What’s wrong with the current laws?</h2>
<p>Voluntary assisted dying doesn’t meet the definition of suicide under state laws. </p>
<p>But the Commonwealth Criminal Code <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_departments/Parliamentary_Library/FlagPost/2023/August/Voluntary_Assisted_Dying_and_Telehealth#:%7E:text=Sections%20474.29A%20and%20474.29,material%20that%20counsels%20or%20incites">prohibits</a> the discussion or dissemination of suicide-related material electronically. </p>
<p>This opens doctors to the risk of criminal prosecution if they discuss voluntary assisted dying via telehealth.</p>
<p>Successive Commonwealth attorneys-general have failed to address the conflict between federal and state laws, despite persistent calls from state attorneys-general for necessary <a href="https://www.abc.net.au/news/2024-02-12/voluntary-assisted-dying-telehealth-ban-law-push/103456102">clarity</a>. </p>
<p>This eventually led to voluntary assistant dying doctor <a href="https://www.abc.net.au/news/2022-08-03/voluntary-assisted-dying-communication-laws-face-gp-legal-fight/101292042">Nicholas Carr</a> calling on the Federal Court of Australia to resolve this conflict. Carr sought a declaration to exclude voluntary assisted dying from the definition of suicide under the Criminal Code. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-begin-in-wa-this-week-but-one-commonwealth-law-could-get-in-the-way-161982">Voluntary assisted dying will begin in WA this week. But one Commonwealth law could get in the way</a>
</strong>
</em>
</p>
<hr>
<p>In November, the court <a href="https://search2.fedcourt.gov.au/s/search.html?collection=judgments&sort=date&meta_v_phrase_orsand=judgments%2FJudgments%2F&meta_2=carr+&meta_A=&meta_z=&meta_3=&meta_n_phrase_orsand=&query_sand=&query_or=&query_not=&query_phrase=&query_prox=&meta_d=23+november+2023&meta_d1=&meta_d2=&meta_7=&meta_4=&meta_B=">declared</a> voluntary assisted dying <em>was</em> considered suicide for the purpose of the Criminal Code. This meant doctors across Australia were prohibited from using telehealth services for voluntary assisted dying consultations. </p>
<p>Last week, independent federal MP Kate Chaney <a href="https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22legislation%2Fbillhome%2Fr7146%22;querytype=;rec=0">introduced a private members bill</a> to create an exemption for voluntary assisted dying by excluding it as suicide for the purpose of the Criminal Code. Here’s why it’s needed. </p>
<h2>Not all patients can physically see a doctor</h2>
<p>Defining voluntary assisted dying as suicide in the Criminal Code disproportionately impacts people living in regional and remote areas. People in the country <a href="https://www.ama.com.au/ama-rounds/8-december-2023/articles/ama-urges-attorney-general-amend-laws-relevant-vad-and">rely on</a> the use of “carriage services”, such as phone and video consultations, to avoid travelling long distances to consult their doctor. </p>
<p>Other people with terminal illnesses, whether in regional or urban areas, may be suffering intolerably and unable to physically attend appointments with doctors. </p>
<p>The prohibition against telehealth goes against the <a href="https://www.legislation.vic.gov.au/as-made/acts/voluntary-assisted-dying-act-2017">principles</a> of voluntary assisted dying, which are to minimise suffering, maximise quality of life and promote autonomy.</p>
<figure class="align-center ">
<img alt="Old hands hold young hands" src="https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/576959/original/file-20240221-28-e3qk81.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some people aren’t able to attend doctors’ appointments in person.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hands-that-care-nursing-home-2094784921">Jeffrey M Levine/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Doctors don’t want to be involved in ‘suicide’</h2>
<p>Equating voluntary assisted dying with suicide has a direct impact on doctors, who <a href="https://eprints.qut.edu.au/213858/1/99568951.pdf">fear</a> criminal prosecution due to the prohibition against using telehealth.</p>
<p>Some doctors may decide not to help patients who choose voluntary assisted dying, leaving patients in a state of limbo. </p>
<p>The number of doctors actively participating in voluntary assisted dying is already <a href="https://www.safercare.vic.gov.au/sites/default/files/2023-08/VADRB%20Annual%20Report%202022-23.pdf">low</a>. The majority of doctors are located in metropolitan areas or major regional centres, leaving some locations with very few doctors participating in voluntary assisted dying. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-is-legal-in-victoria-but-you-may-not-be-able-to-access-it-208282">Voluntary assisted dying is legal in Victoria, but you may not be able to access it</a>
</strong>
</em>
</p>
<hr>
<h2>It misclassifies deaths</h2>
<p>In state law, people dying under voluntary assisted dying have the cause of their death registered as “the disease, illness or medical condition that was the grounds for a person to access voluntary assisted dying”, while the <a>manner of dying</a> is recorded as voluntary assisted dying. </p>
<p>In contrast, only coroners in each state and territory can make a finding of suicide as a cause of death. </p>
<p>In 2017, voluntary assisted dying was defined in the <a href="http://www8.austlii.edu.au/cgi-bin/viewdoc/au/legis/vic/consol_act/ca2008120/s4.html">Coroners Act 2008 (Vic)</a> as not a reportable death, and thus not suicide. </p>
<p>The language of suicide is inappropriate for explaining how people make a decision to die with dignity under the lawful practice of voluntary assisted dying. </p>
<p>There is ongoing taboo and stigma attached to suicide. People who opt for and are lawfully eligible to access voluntary assisted dying should not be tainted with the taboo that currently surrounds suicide.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1719587677257728045"}"></div></p>
<h2>So what is the solution?</h2>
<p>The only way to remedy this problem is for the federal government to create an exemption in the Criminal Code to allow telehealth appointments to discuss voluntary assisted dying. </p>
<p>Chaney’s private member’s bill is yet to be debated in federal parliament. </p>
<p>If it’s unsuccessful, the Commonwealth attorney-general should pass regulations to exempt voluntary assisted dying as suicide. </p>
<p>A cooperative approach to resolve this conflict of laws is necessary to ensure doctors don’t risk prosecution for assisting eligible people to access voluntary assisted dying, regional and remote patients have access to voluntary assisted dying, families don’t suffer consequences for the erroneous classification of voluntary assisted dying as suicide, and people accessing voluntary assisted dying are not shrouded with the taboo of suicide when accessing a lawful practice to die with dignity.</p>
<p>Failure to change this will cause unnecessary suffering for patients and doctors alike.</p><img src="https://counter.theconversation.com/content/223863/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michaela Estelle Okninski is affiliated with Australasian Association of Bioethics and Health Law.</span></em></p><p class="fine-print"><em><span>Marc Trabsky's research for this article received funding from an Australian Research Council Discovery Early Career Researcher Award (DE220100064).</span></em></p><p class="fine-print"><em><span>Neera Bhatia receives funding from UKRI Arts and Humanities Research Council for an unrelated project. </span></em></p>It’s illegal to discuss voluntary assisted dying via telehealth, which means people who live in rural areas and those who can’t physically go to see a doctor may not be able to access the scheme.Michaela Estelle Okninski, Lecturer of Law, University of AdelaideMarc Trabsky, Associate professor, La Trobe UniversityNeera Bhatia, Associate Professor in Law, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2231862024-02-22T00:12:48Z2024-02-22T00:12:48ZWe gave palliative care patients VR therapy. More than 50% said it helped reduce pain and depression symptoms<figure><img src="https://images.theconversation.com/files/576355/original/file-20240219-28-18om6k.jpg?ixlib=rb-1.1.0&rect=0%2C10%2C7008%2C4647&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Unai Huizi Photography/Shutterstock</span></span></figcaption></figure><p>People in palliative care are dealing with serious, non-curable illness. Every day can be filled with severe physical, psychological and emotional pain.</p>
<p>Palliative care staff work hard to help make patients as comfortable as possible and provide strong emotional support. Meaningful activities can help but patients often aren’t well enough to do the things they really love, such as travel. We wondered whether virtual reality (VR) could help.</p>
<p>To find out, we supported 16 palliative care patients in an acute ward to do three 20-minute VR sessions, and asked them how they felt before and after each one.</p>
<p><a href="http://dx.doi.org/10.1136/spcare-2024-004815">Our study</a>, published this week in the journal <a href="https://spcare.bmj.com/">BMJ Supportive & Palliative Care</a>, found more than 50% of patients experienced clinically meaningful reductions in symptoms such as pain and depression immediately after a 20-minute VR session.</p>
<p>Importantly, though, some also told us it didn’t help or that they felt unwell after using it. This shows taking a nuanced approach to using VR in palliative care is crucial.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An older woman in bed uses a VR gaming headset." src="https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/574581/original/file-20240209-16-t34gok.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">VR involves using a headset to allow the user to have an immersive experience that feels 3D.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/female-doctor-checking-on-elderly-patient-1859594494">Newman Studio/Shutterstock</a></span>
</figcaption>
</figure>
<h2>What we did</h2>
<p>VR involves using a headset to create an immersive experience that feels 3D, often accompanied by music or realistic sound effects. This computer-generated environment can feel incredibly close to reality. </p>
<p><a href="https://journals.sagepub.com/doi/full/10.1177/20552076231207574">Previous research</a> has looked at VR use in palliative care but we were especially interested in finding out if <em>personalised</em> VR sessions were associated with meaningful changes in pain and depression symptoms.</p>
<p>Personalised VR means each person experiences content that is meaningful to that individual. So rather than asking patients to choose, for example, between a rainforest and a beach VR experience, we interviewed the patients before their sessions to gauge their interests and create a VR session tailored to them.</p>
<p>For example, one person said they wanted a VR experience that allowed them to explore Paris again. Others had migrated to Australia from the UK so they asked for VR experiences that brought them back to the country where they were born. One person was a big fan of Star Wars, so we provided a VR Star Wars game.</p>
<p>For our study, we asked 16 palliative care patients from an acute ward in a South Australian hospital to participate in three VR sessions using a headset that is now known as Meta Quest 2. The participants, who ranged in age from 48 to 87 years old, used the headset for around 20 minutes per session. The primary VR applications we used were Wander and YouTube VR. </p>
<p>We asked each participant about their emotional and physical symptoms before and after each session.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/1xZHsQJlqbA?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">One of the apps used in our study was Wander.</span></figcaption>
</figure>
<h2>What we found</h2>
<p>We found just 20 minutes of VR immersion could immediately reduce the participants’ subjective feelings of both physical pain and emotional pain (such as depression). At least half of the participants reported significant relief after a single session. After one session, two out of three participants reported relief. </p>
<p>One person told us:</p>
<blockquote>
<p>When the service is finished you feel like you’re floating. [It takes a] weight off your shoulders.</p>
</blockquote>
<p>Another said:</p>
<blockquote>
<p>Well, I’d rather lie here thinking about a fish swimming [or] a Willy Nelson concert than be dying […] I enjoyed it.</p>
</blockquote>
<p>One participant told us:</p>
<blockquote>
<p>Oh, it’s just amazing, it was nothing like I expected […] it takes you from this world into another beautiful world.</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An older woman in a wheelchair uses VR." src="https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=425&fit=crop&dpr=1 754w, https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=425&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/576357/original/file-20240219-16-eq6rm7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=425&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">While the benefits of VR were profound for some, they were not universal.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/retired-woman-using-vr-glasses-nurse-2073593054">DC Studio/Shutterstock</a></span>
</figcaption>
</figure>
<p>A different person said:</p>
<blockquote>
<p>[…] by the time you get to where I am, there’s things you think of, ‘I wish I’d done this, I wish I’d had the chance to have been able to do that’ and then this offers you that experience to have just about feel like you’ve been there.</p>
</blockquote>
<p>While the benefits of VR were profound for some, they were not universal. </p>
<p>Some participants reported feeling worse after the VR sessions.</p>
<p>One person said the headset felt too heavy on their cheekbone, another said they experienced nausea after using the VR.</p>
<h2>Where to from here?</h2>
<p>We and others have now collected good evidence VR can be a helpful palliative care therapy for some patients – but not all. It is not a universal remedy.</p>
<p>More research is needed to better understand which patients will benefit the most from VR and how we can best use it. It’s also worth remembering skilled staff need to be on hand to support a patient to use VR; it’s no good just buying a VR set and expecting patients to use it on their own.</p>
<p>Our study, while limited, shows VR therapy may in some cases have a role to play to help palliative care patients experience moments of joy and comfort despite the seriousness of their illness.</p><img src="https://counter.theconversation.com/content/223186/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Tobias Loetscher received funding from the Breakthrough Mental Health Research Foundation for this project.</span></em></p><p class="fine-print"><em><span>Gregory Crawford has received funding from the NHMRC, the MRFF and Cancer Australia. </span></em></p>One person said they wanted a VR experience that allowed them to explore Paris again.Tobias Loetscher, Associate Professor, University of South AustraliaGregory Crawford, Professor in Palliative Medicine, University of AdelaideLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2104502023-11-05T13:01:56Z2023-11-05T13:01:56ZAs a death doula and professor who teaches about dying, I see a need for more conversations about death<figure><img src="https://images.theconversation.com/files/556950/original/file-20231031-27-knk923.jpg?ixlib=rb-1.1.0&rect=0%2C216%2C5485%2C3587&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Students in a death and dying class have the opportunity to become a ‘death ambassador,’ in recognition of their new level of awareness that could help foster healthy conversations about death and dying. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/as-a-death-doula-and-professor-who-teaches-about-dying-i-see-a-need-for-more-conversations-about-death" width="100%" height="400"></iframe>
<p>A growing number of folks may have heard of the <a href="https://www.orderofthegooddeath.com/death-positive-movement/">death-positive movement</a>, <a href="https://deathcafe.com/what/">death cafés</a> or <a href="https://theconversation.com/death-friendly-communities-ease-fear-of-aging-and-dying-157655">death-friendly communities</a> — each of which are animated by the understanding that welcoming our own mortality could improve the quality of our lives.</p>
<p>There is truth to these claims. Both as a person who has taught courses on death, dying, and spirituality for more than 20 years, and <a href="https://endoflifedoulaassociation.org">as a death doula</a>, thinking about dying and working closely with the dying <a href="https://www.wiley.com/en-us/Staring+at+the+Sun%3A+Overcoming+the+Terror+of+Death-p-9780470894019">has fostered in me a deep appreciation for what it means to live well and meaningfully</a>.</p>
<p>However, my university students have often told a different story. Both informally in class discussions, <a href="https://www.youtube.com/watch?v=aMWff7NLm5k">and also in a public presentation</a> about why death education matters, for the online <a href="https://twitter.com/Liftingthelid21">Lifting The Lid International Festival of Death and Dying</a>, many have expressed how their learning with me signals their first times talking about death.</p>
<p>When I hear this, I am aware of how our society needs to do a better job at nurturing more conversations about death, and building communities that support people navigating questions surrounding death and dying.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/aMWff7NLm5k?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Students speak about why death education matters to them.</span></figcaption>
</figure>
<h2>Denying death</h2>
<p>The easiest way to exile death from our conversations is to label it “morbid,” ensuring we never need speak of it.</p>
<p>My first lecture in every death class begins with a discussion of the pervasiveness <a href="https://www.simonandschuster.com/books/The-Denial-of-Death/Ernest-Becker/9780684832401">of death denial in dominant modern western culture</a>. </p>
<p>I ask my students: “How do people react when you tell them you’re taking a course on death?” Invariably they have heard things like: </p>
<blockquote>
<p>“That’s so morbid!” </p>
<p>“How depressing/dark/strange/weird!”</p>
<p>“Why would you want to study that!?”</p>
</blockquote>
<p>My courses are designed to introduce students to the study of death through history, culture, religion and spirituality, ritual, literature, ethics <a href="https://www.routledge.com/Handbook-of-Social-Justice-in-Loss-and-Grief-Exploring-Diversity-Equity/Harris-Bordere/p/book/9781138949935#">and social justice</a> </p>
<p>We explore social and cultural barriers affecting how services are structured and the <a href="https://pubmed.ncbi.nlm.nih.gov/27608146">implications for end-of-life care</a>. For example, <a href="https://wexnermedical.osu.edu/blog/racism-is-a-social-determinant-of-health">racism and inequities in health care</a> and other institutions contributes to dangerous disparities in treatment and life outcomes, influencing Black, Indigenous and racialized communities’ <a href="https://apnews.com/article/general-news-health-lifestyle-5b111827cc16cb38b7ae63018c8b3727">collective trauma surrounding</a> dying and death.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/as-an-indigenous-doctor-i-see-the-legacy-of-residential-schools-and-ongoing-racism-in-todays-health-care-162048">As an Indigenous doctor, I see the legacy of residential schools and ongoing racism in today's health care</a>
</strong>
</em>
</p>
<hr>
<p>Students read and learn about how humans have understood and interpreted death, as well as some of the pressing social issues that we face in contemporary <a href="https://doi.org/10.1089/jpm.2020.0435">death care and practices</a>. </p>
<p>Inspired by the work of <a href="https://www.instagram.com/naheedd">Dr. Naheed Dosani</a>, palliative care physician and health justice activist, I now include a class on palliative care for people experiencing <a href="https://doi.org/10.12927/hcq.2023.27055">homelessness and dying in the streets</a>. </p>
<p><a href="https://www.dyingwithdignity.ca/blog/reclaiming-cultural-teachings-about-mortality-grief-loss-death-and-dying/">Anishinaabe death doula Chrystal Toop, a Member of Pikwàkanagàn First Nation</a>, also visits my class to speak about compounded trauma of death and collective grief experienced by Indigenous Peoples, and why she created her own Indigenous death doula training to reclaim cultural teachings.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/jcdm5fEqJmk?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">‘What’s a life worth?’ Ted talk from Dr. Naheed Dosani.</span></figcaption>
</figure>
<p>I also bring what I have learned as an end-of-life companion from hours <a href="https://www.theguardian.com/lifeandstyle/2019/nov/06/end-of-life-doulas-the-professionals-who-help-you-die">sitting with and listening to people who are facing their own death or</a> the death of those they love. </p>
<p>The gentle skills learned there are discernment, attention and compassion. As students reflect on what they will take with them from the course, they perceive the value in this kind of experience I bring to the classroom as much as in an article <a href="https://doi.org/10.3138/cbmh.31.2.205">on palliative care and its history</a>.</p>
<h2>Negative consequences of denying death</h2>
<p>My courses on dying and death have always drawn students from other humanities programs like English, fine arts and history. But over the years, more students from the professional programs, such as nursing, criminal justice and social work are enrolling. </p>
<p>While students’ professional programs — for example, in nursing or social work — seek to address various topics surrounding aging, trauma, death or end-of-life care in varying ways, students also need opportunities to think about their own mortality and, to cultivate some self-awareness in order to be present for others experiencing death and dying. </p>
<p>Some of my nursing students raise questions like: How do they talk to the loved ones of patients who are dying? What should they say? </p>
<p>These questions are hard enough when death is expected. They are exceptionally difficult when it isn’t, when the death is of a young person, a child or a baby. </p>
<h2>New level of awareness</h2>
<p>Students also express their disappointment and confusion because what they face in the aftermath of death and loss is often isolation and solitude.</p>
<p>While <a href="https://www.cfp.ca/content/54/12/1693">research about how to support children and young people navigating death</a> amplifies the need for open and sensitive discussion, some students, especially white, middle-class students, speak of experiences of having been shielded from death by those who thought shielding them was the best way to protect them from fear and anxiety.</p>
<p>Simply providing the safe space to begin to have these conversations goes a very long way towards assuaging their fear and grief.</p>
<p>In part this is because supporting the passage of life to death, and supporting grief, is (or should be) <a href="https://doi.org/10.1177/26323524221102468">a collective experience</a>. </p>
<p><a href="https://www.talkdeath.com/learn-from-collective-mourning-tragedy">Community death care is everyone’s business</a>, and while awareness of our own mortality is an important part of that, awareness and activism around racism, violence and injustice in end-of-life care is essential.</p>
<h2>Death ambassadors</h2>
<p>Figures like <a href="https://www.instagram.com/naheedd">Dosani are</a> making social media outreach part of their teaching and care practices. In recognition of the importance of creating death supportive communities, I also started an Instagram account, <a href="https://www.instagram.com/death.ambassadors">@death.ambassadors</a>, to chronicle my death teaching.</p>
<p>At the end of each death course, I offer students the opportunity <a href="https://www.nipissingu.ca/research/centres/death-ambassadors">to be a “death ambassador,” in recognition of their new level of death awareness</a> that could help to foster healthy conversations about death and dying in our culture.</p>
<p>Some of my students have also created their own death-awareness <a href="https://www.theatlantic.com/health/archive/2013/08/how-social-media-is-changing-the-way-we-approach-death/278836">social media accounts</a>, and found themselves supported by a death-positive community of educators, end-of-life companions, funeral directors and death doulas.</p>
<p>It is a universal truth that one day we are all going to die and that means we all have a serious stake in death education. </p>
<p>When it’s your turn, or the turn of someone you love, don’t we all need people who have considered how to support us in navigating dying and death? Let’s do the work to make that a reality for everyone.</p><img src="https://counter.theconversation.com/content/210450/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Susan Srigley is a palliative care volunteer with the Near North Palliative Care Network.</span></em></p>All of us face loss and the reality of our own mortality. Whether through in-person discussion or over social media, let’s build communities that support people navigating death and dying.Susan Srigley, Professor of Religions and Cultures, Death Doula & Death Educator, Nipissing UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2165342023-10-30T01:37:44Z2023-10-30T01:37:44ZBrain tumours can bring long-term disability – but some diagnosed are being refused NDIS support<figure><img src="https://images.theconversation.com/files/556271/original/file-20231027-27-bv58zn.jpg?ixlib=rb-1.1.0&rect=56%2C113%2C9432%2C6203&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-woman-patient-ready-do-magnetic-1949322067">Shutterstock</a></span></figcaption></figure><p>The ABC <a href="https://www.abc.net.au/news/2023-10-29/palliative-care-terminal-illness-ndis/102934026">is reporting</a> how terminally ill patients are being left in limbo as the states and the National Disability Insurance Scheme (NDIS) argue over disability supports. The reports share the experiences of Australians with brain tumours and highlight the distress of getting a diagnosis, as well as the lack of support <a href="https://www.abc.net.au/news/2023-09-12/ndis-battle-for-family-of-cancer-patient-spencer-barton/102843554">people can experience</a>.</p>
<p>Those living with what is at once a serious illness, disability and a potentially life-limiting condition can be caught <a href="https://theconversation.com/the-ndis-promises-lifelong-support-but-what-about-end-of-life-support-for-people-with-disability-199990">between</a> the NDIS, the health system and palliative care. A <a href="https://www.ndisreview.gov.au/">review of the NDIS</a> is due to be released soon, following a year of investigations into eligibility, sustainability and how costs and supports should be split between the NDIS and the states.</p>
<p>How can we support people better and make sure they don’t fall between the gaps? </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-promises-lifelong-support-but-what-about-end-of-life-support-for-people-with-disability-199990">The NDIS promises lifelong support – but what about end-of-life support for people with disability?</a>
</strong>
</em>
</p>
<hr>
<h2>Brain tumours may not be a death knell</h2>
<p>About <a href="https://www.canceraustralia.gov.au/cancer-types/brain-cancer/statistics#:%7E:text=3%2C392-,New%20cases,1%2C173%20males%20and%20744%20females">1,900 Australians</a> are diagnosed with brain tumours each year. </p>
<p>Around <a href="https://curebraincancer.org.au/about-us/facts-and-stats">22% of those diagnosed survive beyond five years</a>. And some <a href="https://www.aihw.gov.au/getmedia/ea870f59-a9e4-4772-8fa8-e1206b56a552/cancer-data-in-australia.pdf?v=20210607152619&inline=true">68% of people</a> aged 20 to 39 have at least a five-year relative survival rate after a brain cancer diagnosis. </p>
<p>Brain tumours and their treatments can cause <a href="https://pubmed.ncbi.nlm.nih.gov/23584801/">substantial disability</a>. This may include paralysis (often hemiplegia, which is when one side of the body is affected), cognitive and sensory changes, seizures and mental health conditions. </p>
<p>People may therefore need substantial support to communicate, travel outside of the home, socialise and interact with others, or take care of their daily needs. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1671321208590331904"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/brain-tumors-are-cognitive-parasites-how-brain-cancer-hijacks-neural-circuits-and-causes-cognitive-decline-205901">Brain tumors are cognitive parasites – how brain cancer hijacks neural circuits and causes cognitive decline</a>
</strong>
</em>
</p>
<hr>
<h2>Brain tumours and the NDIS</h2>
<p>The NDIS is meant to <a href="http://www5.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s30.html">support people with disability</a> up to the age of 65 and beyond if they are already participants of the scheme. But some Australians diagnosed with brain tumours say they are being denied <a href="https://www.abc.net.au/news/2023-09-12/ndis-battle-for-family-of-cancer-patient-spencer-barton/102843554">access to the scheme</a>. Others report having their <a href="https://www.abc.net.au/news/2023-10-09/jim-mills-chose-voluntary-assisted-dying-palliative-care-ndis/102928986">NDIS funding cut</a>. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/javElZk9HIg?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">People with brain tumours have had their requests for support denied. In some cases, the decisions have been overturned on appeal.</span></figcaption>
</figure>
<p>To meet the disability requirements of the <a href="http://www5.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s24.html">NDIS Act</a> a person must have an impairment that is likely permanent and requires lifelong support. The National Disability Insurance Agency (NDIA), which administers the scheme, uses the <a href="https://www.dss.gov.au/sites/default/files/documents/09_2021/ndis-principles-determine-responsibilities-ndis-and-other-service-1.pdf">Applied Principles and Tables of Support</a> to assess eligibility under the scheme or whether another government department should be responsible.</p>
<p>These decisions can cause considerable frustration and distress for patients, families, advocacy groups, palliative care clinicians and NDIS providers. The <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/do-you-meet-disability-requirements">NDIS Operational Guidelines</a> state:</p>
<blockquote>
<p>It doesn’t matter what caused your impairment, for example if you’ve had it from birth, or acquired it from an injury, accident or health condition.</p>
</blockquote>
<p>But without clear guidelines to spell out what functional supports are provided by each system, it is difficult to determine how the NDIA makes access and planning decisions.</p>
<p>Brain tumours are often life-limiting, but other life-limiting conditions that impact a person’s function are listed as likely to meet the disability requirements. These conditions <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-conditions-are-likely-meet-disability-requirements">include</a> <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/trisomy-disorders">Patau syndrome</a>, <a href="https://www.ninds.nih.gov/health-information/disorders/leigh-syndrome#:%7E:text=Leigh%20syndrome%20is%20a%20rare,Poor%20sucking%20ability">Leigh syndrome</a> and <a href="https://www.ninds.nih.gov/health-information/disorders/canavan-disease#:%7E:text=Canavan%20disease%20is%20a%20neurological,makes%20an%20enzyme%20called%20aspartoacylase.">Canavan disease</a>, <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-b-conditions-are-likely-result-permanent-impairment">motor neurone disease</a> and Parkinson’s disease. </p>
<h2>What functional supports can health systems or palliative care provide?</h2>
<p>Many people <a href="https://theconversation.com/what-actually-is-palliative-care-and-how-is-it-different-to-end-of-life-care-205488">confuse</a> palliative care with end-of-life care. When people are referred to palliative care or their medical practitioners adopt a palliative approach to care, they often feel it means they are at the end of their lives. Although palliative care means there will be no further curative treatment for a condition, patients may live for months or years after referral.</p>
<p>The kinds of support Australians receive from palliative care vary widely across the country, particularly in rural and remote areas. Services can help manage clinical symptoms of illnesses such as pain, breathlessness or fatigue. They can also provide some mental health support. </p>
<p>Functional supports such as personal care, domestic assistance, respite, food services or equipment, are usually only provided by palliative care services and some charities as end-of-life care. </p>
<p>People over 65 might be able to access functional support via the aged-care system. If a person under 65 can’t access the NDIS, they may find little or no functional support available until their final weeks of life.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-actually-is-palliative-care-and-how-is-it-different-to-end-of-life-care-205488">What actually is palliative care? And how is it different to end-of-life care?</a>
</strong>
</em>
</p>
<hr>
<h2>A call for clarity and guidance</h2>
<p>People with life-limiting illnesses, including those featured in the <a href="https://www.abc.net.au/news/2023-10-29/palliative-care-terminal-illness-ndis/102934026">ABC reports</a>, are calling for increased clarity and guidance. Which public health systems are responsible for helping with functional supports? How can they get the support they need to avoid admission to hospital, hospice or residential aged care? </p>
<p>The <a href="https://onlinelibrary.wiley.com/doi/epdf/10.1111/ajag.12843">high costs associated</a> with prolonged hospital stays mean the economic case for helping people to stay at home for as long as possible is strong. But these costs don’t consider the emotional toll that disjointed and chaotic processes can have on patients and families impacted by brain tumours or other life-limiting conditions.</p><img src="https://counter.theconversation.com/content/216534/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kathy Boschen was formerly a senior compliance officer for the NDIS Quality and Safeguards Commission, an advisor for the NDIA Administrative Appeals Tribunal Team, and an NDIA subject matter expert on mental heath access.</span></em></p><p class="fine-print"><em><span>Caroline Phelan receives funding from Australian federal and state governments. </span></em></p>Over 20% of people diagnosed with brain cancer survive longer than five years. But the NDIS may not recognise their need for support to live, work, learn and play.Kathy Boschen, Research Associate, Casual Academic, PhD Candidate, Flinders UniversityCaroline Phelan, Lecturer, Flinders UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2109732023-09-24T12:10:16Z2023-09-24T12:10:16ZHow long will a loved one live? It’s difficult to hear, but harder not to know<figure><img src="https://images.theconversation.com/files/549786/original/file-20230922-27-gg4746.jpg?ixlib=rb-1.1.0&rect=201%2C70%2C6508%2C4054&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Even for an experienced health-care professional, estimating the life expectancy of a patient with a serious illness is challenging.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/how-long-will-a-loved-one-live-its-difficult-to-hear-but-harder-not-to-know" width="100%" height="400"></iframe>
<p>Planning for the future is difficult for people living with a life-limiting illness. Clinicians, based on their experience, can offer broad estimates of survival — in days to weeks, weeks to months, or months to years. However, patients and their care partners often want greater precision when arranging or making decisions about their care. </p>
<p>An accurate prediction of survival can enable earlier conversations about preferences and wishes at the end of life, and earlier introduction of palliative care. </p>
<p>However, even for an experienced clinician, <a href="https://doi.org/10.1371/journal.pone.0161407">estimating the life expectancy</a> of a patient with a serious illness <a href="https://doi.org/10.1136/bmj.320.7233.469">is challenging</a>. It requires large amounts of data and an understanding of the relationship between the patient’s baseline health, the complexity of their medical condition and how they respond to or progress with treatment. This is where predictive algorithms could help. </p>
<h2>A tool for timely conversations and planning</h2>
<p><a href="https://www.projectbiglife.ca/respect-elder-life">RESPECT (Risk Evaluation for Support: Predictions for Elder life in their Communities Tool) is a risk communication tool</a> powered by prediction algorithms that estimate individuals’ survival — that is, how long someone will live. It was developed by the Project Big Life Research Team and validated <a href="https://doi.org/10.1503/cmaj.200022">using health-care data collected on nearly one million older adults who received home and community care</a> or nursing home care in Ontario. </p>
<figure>
<iframe src="https://player.vimeo.com/video/539710931" width="500" height="281" frameborder="0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen=""></iframe>
<figcaption><span class="caption">RESPECT is intended to help people plan for palliative and end-of-life care.</span></figcaption>
</figure>
<p>RESPECT was designed with patients’ information needs in mind, and with the intention of empowering patients and their care partners. By providing patients with data on the survival and experiences of other individuals who had similar disease journeys, the tool can help patients understand their own illness trajectory, have earlier conversations about their preferences and wishes, and advocate for the support they need. </p>
<h2>A tool for patients, care partners and clinicians</h2>
<p><a href="https://www.projectbiglife.ca/respect-elder-life">RESPECT</a> launched publicly on ProjectBigLife.ca in July 2021. <a href="https://www.projectbiglife.ca/">ProjectBigLife.ca</a> is home to several health calculators developed by the research team as a means of translating data and evidence into tools that can help Canadians think about their health and plan for their care. </p>
<p>Using the responses to 17 questions about their health and ability to care for themselves, RESPECT provides an estimate of a person’s survival based on information gathered on people who have similar characteristics. Older adults, their care partners and health care professionals who are uncertain about the life expectancy of someone living with a critical illness can use the calculator to gain a better understanding of their decline. </p>
<p>Beyond life expectancy, RESPECT reports measures of functional decline — for example, whether the patient is able to get around their house and engage in activities of daily living, like bathing and cooking, without any assistance. </p>
<p>A patient can use this information to discuss their care needs with their care partners and health-care providers. Similarly, health-care providers can use this tool to discuss with their patient what can be expected as the patient approaches the end of life, and plan for the supports that their patient may need.</p>
<p>RESPECT is also actively used in Ontario’s retirement homes and nursing homes. Many residents in these settings have a life expectancy of less than two years. Earlier conversations about the older person’s goals and wishes for their remaining life can enable the care team to provide the best quality of life and care for the individuals under their care.</p>
<h2>Sustainable infrastructure</h2>
<p>One of the goals of RESPECT is to provide sustainable infrastructure to study, learn and improve how we use predictive algorithms for end-of-life care.</p>
<p>Despite the benefits that are emerging from the early uses of RESPECT, many questions remain about when and how it can be most appropriately used. For example, poor numerical literacy — that is, a person’s understanding of numbers, mathematics and statistics — could lead to misinterpreting the estimate provided by RESPECT. While the resources supporting RESPECT were co-developed with patients and their care partners, more research is still needed to reduce such potential harms.</p>
<p>To ensure we optimize the benefits that can be gained from prediction algorithms like RESPECT, clinical epidemiologists Douglas Manuel and Justin Presseau, along with the co-authors of this article, have created the RESPECT Learning Health System — a network of care partners, researchers and health-care professionals collaborating to address these challenges. We combine research and practice to sustainably study, learn and improve end-of-life care and experience through predictive algorithms.</p>
<h2>Identification is just the first step</h2>
<p>Only <a href="https://www.cihi.ca/sites/default/files/document/access-to-palliative-care-in-canada-2023-report-en.pdf">58 per cent of people who die in Canada</a> receive some form of palliative care prior to death. Few (13 per cent) are able to die at home with the support of palliative home care. </p>
<p>In deepening our understanding of frailty and decline, RESPECT may help clinicians, patients and their care partners be prepared for a poor prognosis and help develop a personalized plan for their care. </p>
<p>However, to improve end-of-life care delivery in Canada and enable Canadians to die with dignity, more investment is still needed within our formal health-care system to meet the need of individuals at the end of life.</p><img src="https://counter.theconversation.com/content/210973/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span> Lysanne Lessard receives funding from Canadian Institutes of Health Research for research related to the RESPECT Learning Health System.
Lessard is a member of the University of Ottawa's LIFE Research Institute.</span></em></p><p class="fine-print"><em><span>Amy T. Hsu receives funding from the Canadian Institutes of Health Research for research related to the RESPECT Calculator. </span></em></p><p class="fine-print"><em><span>Peter Tanuseputro receives funding from the Canadian Institutes of Health Research for research related to the RESPECT calculator. </span></em></p><p class="fine-print"><em><span>Sampath Bemgal does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>An accurate prediction of survival can enable earlier conversations about preferences and wishes at the end of life, and earlier introduction of palliative care.Lysanne Lessard, Associate Professor, Telfer School of Management, L’Université d’Ottawa/University of OttawaAmy T. Hsu, Brain and Mind-Bruyère Research Institute Chair in Primary Health Care in Dementia, L’Université d’Ottawa/University of OttawaPeter Tanuseputro, Associate Professor, Division of Palliative Care, Department of Medicine, L’Université d’Ottawa/University of OttawaSampath Bemgal, Assistant Professor, Management Information Systems, University of New BrunswickLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2054882023-08-04T01:39:15Z2023-08-04T01:39:15ZWhat actually is palliative care? And how is it different to end-of-life care?<figure><img src="https://images.theconversation.com/files/537997/original/file-20230718-29-oqxycp.jpg?ixlib=rb-1.1.0&rect=27%2C18%2C6011%2C3983&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hand-young-women-on-wheelchair-senior-2087350534">Shutterstock</a></span></figcaption></figure><p>Although it is associated with dying, palliative care is an approach focused on improving <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6405258/#:%7E:text=QOL%20can%20also%20be%20defined,QOL%20(2%E2%80%934).">quality of life</a> – or how people feel about and respond to facing a life-threatening illness. </p>
<p>Palliative care aims to prevent and relieve physical, social, emotional, spiritual and existential distress. Palliative care also supports family caregivers during the disease journey and bereavement phase. You might have heard it mentioned for cancer, but it is beneficial for the majority of life-limiting conditions. It has been shown to reduce health-care costs by <a href="https://palliativecare.org.au/publication/kpmg-palliativecare-economic-report/">preventing</a> unnecessary hospital admissions.</p>
<p>Palliative care is not voluntary assisted dying. It does not aim to hasten or prolong death. It is not just for people who are about to die and seeking palliative care does not mean “giving up”. In fact, it can be a profound and positive form of care that the World Health Organization (WHO) has <a href="https://www.who.int/news-room/fact-sheets/detail/palliative-care">recognised</a> as a basic human right. But what does it involve?</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-to-choose-a-legal-decision-maker-as-you-get-older-3-things-to-consider-177631">How to choose a legal decision-maker as you get older – 3 things to consider</a>
</strong>
</em>
</p>
<hr>
<h2>Not just for someone’s final days</h2>
<p>Palliative care is often seen as a “last resort” rather than a service that empowers terminally ill people to live as well as possible for as long as possible. </p>
<p>The full benefit of this holistic approach can only be realised if people are referred early to <a href="https://palliativecare.org.au/resource/what-is-palliative-care/">palliative care</a> – ideally from the time they are diagnosed with a terminal illness. Unfortunately, this rarely happens and palliative care tends to blur with <a href="https://www.nia.nih.gov/health/providing-comfort-end-life">end-of-life care</a>. The latter is for people who are likely to die within 12 months but is often left to the last few weeks.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/qMbq0fP9kr4?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Palliative is not just for the very end of someone’s life.</span></figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-all-hope-for-a-good-death-but-many-aged-care-residents-are-denied-proper-end-of-life-care-156105">We all hope for a 'good death'. But many aged-care residents are denied proper end-of-life care</a>
</strong>
</em>
</p>
<hr>
<h2>Palliative care can involve difficult conversations</h2>
<p>Palliative care provides a time to ask some usually taboo questions. What kind of death do you want to experience? Who is in your personal network? How will they respond to your life ending? What kind of support can they offer?</p>
<p>Palliative care can be provided at home, hospital, hospice or residential aged care facility, depending on the preference and circumstances of patients and their family carers. </p>
<p>In general, patients are referred by their treating specialist, health professional or GP. Patient preferences for care and what matters most to them are discussed with their doctor or other health professionals and with their loved ones with <a href="https://www.advancecareplanning.org.au/">advance care planning</a>. These discussions can include information on their preferred place of care, preferred place of death, personal care needs such as dietary preferences and religious and spiritual practices. </p>
<p>This helps those caring to make decisions about the patient care when the patient cannot anymore. However, advance care planning can start at any time in life and without a diagnosis.</p>
<h2>How palliative care delivery has changed</h2>
<p>Once upon a time, we were born at home and we died at home. Death was a social event with a medical component. Now it is close to the opposite. But research indicates a solely clinical model of palliative care (mainly symptom management funded through the health system) is <a href="https://www.mdpi.com/2227-9032/9/12/1615">inadequate</a> to address the complex aspects of death, dying, loss and grief.</p>
<p>A <a href="https://www.phpci.org/">public health</a> palliative care approach views the community as an equal partner in the long and complex task of providing quality health care at the end of someone’s life. It promotes conversations about patients’ and families’ goals of care, what matters to them, their needs and wishes, minimising barriers to a “good death”, and supporting the family post-bereavement. </p>
<p>These outcomes require the involvement of family carers, friendship networks and not-for-profit organisations, where more detailed conversations about life and death can happen, instead of the “pressure cooker” rushed environment of hospitals and clinics. Investment could develop stronger <a href="https://pubmed.ncbi.nlm.nih.gov/29402101/">death literacy</a> and grief literacy in the community and among health professionals, who may be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6312518/#:%7E:text=Some%20struggle%20with%20the%20limitations,lead%20in%20opening%20a%20dialogue">reluctant</a> to raise or discuss these topics. This would likely see the take up of advance care planning increase, from the current low levels of <a href="https://www1.racgp.org.au/newsgp/clinical/advance-care-planning-in-an-ageing-population#:%7E:text=A%20paper%20exploring%20the%20cognitive,advance%20health%20directive%20in%20place.">less than 15%</a> of Australians (<a href="https://theconversation.com/only-25-of-older-australians-have-an-advance-care-plan-coronavirus-makes-it-even-more-important-144354">25% of older Australians</a> accessing health and aged-care facilities).</p>
<p>One such successful approach is the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9720808/">Compassionate Communities Connectors Program</a> in Western Australia, using trained <a href="https://comcomnetworksw.com/compassionate-connectors-program/">community volunteers</a> to enhance the social networks of terminally ill people. </p>
<p>Our research trial trained 20 community volunteers (“connectors”) and 43 patients participated over 18 months. In sourcing others to help (who we called “caring helpers”), connectors built the capacity of the community and social networks around patients in need. Caring helpers assisted with transport, collecting prescriptions, organising meals and linked clients to community activities (such as choirs, walking groups, men’s shed). And they helped complete advance care planning documentation. About 80% of patients’ needs were social, particularly around reducing feelings of isolation.</p>
<p>Patients in the trial had fewer hospital admissions and shorter hospital stays.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/passed-away-kicked-the-bucket-pushing-up-daisies-the-many-ways-we-dont-talk-about-death-77085">Passed away, kicked the bucket, pushing up daisies – the many ways we don't talk about death</a>
</strong>
</em>
</p>
<hr>
<h2>Tailored to need</h2>
<p>Palliative care should be tailored to each person, rather than a one-size-fits-all clinical model that doesn’t respect autonomy and choice. </p>
<p>Many people are dying in a way and a place that is not reflective of their values and their end-of-life is interrupted with preventable and costly admissions to hospital where control and even dignity are surrendered. Palliative care hospitalisations have <a href="https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia/contents/summary">increased</a> in recent years compared to all hospitalisations, with 65% of such admissions ending with the patient dying in hospital.</p>
<p>It is unrealistic and unaffordable to have a palliative care service in every suburb. There needs to be a shift to a more comprehensive, inclusive and sustainable approach, such as Compassionate Communities, that recognises death, dying, grief and loss are everyone’s business and responsibility.</p><img src="https://counter.theconversation.com/content/205488/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Samar Aoun is voluntary chair of the South West Compassionate Communities Network, chair of the MND Association in WA and national chair of MND Australia.</span></em></p>Palliative care is often seen as a ‘last resort’ rather than a service that empowers terminally ill people to live as well as possible for as long as possible.Samar Aoun, Perron Institute Research Chair in Palliative Care, The University of Western AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2052782023-05-17T18:04:19Z2023-05-17T18:04:19ZMAID’s evolving ethical tensions: Does it make dying with dignity easier than living with dignity?<figure><img src="https://images.theconversation.com/files/526437/original/file-20230516-17-xndwxx.jpg?ixlib=rb-1.1.0&rect=127%2C82%2C4446%2C3016&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">There is debate about whether a health-care worker can ethically participate in both palliative care and the MAID program. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) has <a href="https://doi.org/10.1007/s10912-022-09764-z">received lots of media attention over the past few years</a>. This is especially true as the Canadian government considers expanding eligibility for people whose sole underlying condition is a mental illness. This has led to <a href="https://theconversation.com/canada-delays-expanding-medical-assistance-in-dying-to-include-mental-illness-but-its-still-a-policy-built-on-quicksand-196264">increased concerns about the ethics of MAID</a>.</p>
<p>Even in its present form, MAID is fraught with ethical tensions. As scholars <a href="https://doi.org/10.1016/j.jrurstud.2022.09.011">engaged in research on MAID</a>, we have heard about these tensions firsthand through interviews with physicians and nurses who provide MAID-related care, clinical ethicists who perform MAID-related consults, family members of patients who have received MAID and patients who have requested MAID. </p>
<p>From these conversations, we highlight three emerging tensions: </p>
<ol>
<li>Palliative care versus MAID provision; </li>
<li>Transparency versus privacy; and </li>
<li>Providing a dignified death versus a dignified life. </li>
</ol>
<p>These tensions can contribute to unpredictability in health service provision, strained relationships, moral distress, harm for prospective patients and the erosion of public trust.</p>
<h2>Palliative care vs. MAID provision</h2>
<p>There is debate about whether a health-care worker can participate in both palliative care and the MAID program. </p>
<p>Palliative care involves efforts to improve the <a href="https://www.virtualhospice.ca/Assets/MAiD_Report_Final_October_15_2018_20181218165246.pdf">quality of life of patients facing serious or life-threatening illness by preventing or relieving suffering through early identification, assessment and treatment of pain, including physical, psychosocial and spiritual pain</a>. MAID, on the other hand, provides patients experiencing intolerable suffering the option to end their lives with the assistance of a doctor or nurse practitioner.</p>
<p>Some people see the two services as <a href="https://healthydebate.ca/2020/06/topic/palliative-care-and-maid/">co-existing within end-of-life care</a>. Others view them as having <a href="https://www.chpca.ca/news/chpca-and-cspcp-joint-call-to-action/">incompatible intentions and goals</a>, and may see the two services as being in conflict. </p>
<figure class="align-center ">
<img alt="A man in a white coat, stethoscope and face mask sitting in a chair and looking upset" src="https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526440/original/file-20230516-23-z7vmtt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Ethical conflicts can potentially place strain on professional relationships between MAID providers and palliative care teams or cause moral distress for palliative care providers.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>For instance, as one medical professional informed us, pharmaceuticals that might be provided to relieve pain during palliative care could undermine cognitive capacity and limit a patient’s ability to provide consent to MAID:</p>
<blockquote>
<p>“It was brutal. I knew at that time we wouldn’t be able to do the provision because we would have to medicate her so much… then we’d have to reverse it to get consent, and that was really hard.”</p>
</blockquote>
<p>Examples like this reveal the tensions that medical professionals might face if they seek to provide both palliative care and MAID. We also heard that some palliative care professionals perceive MAID requests as a failure of their efforts to provide quality palliative care. </p>
<p>This can potentially place strain on professional relationships between MAID providers and palliative care teams, or cause moral distress for palliative care providers.</p>
<h2>Transparency vs. privacy</h2>
<p>The federal government notes the importance of <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html">transparency for the improvement of MAID and maintenance of public trust</a>. However, patients and care providers sometimes have strict privacy concerns, wanting their participation in MAID kept confidential because of disapproving family, colleagues or community members. </p>
<figure class="align-center ">
<img alt="A man in a hospital bed and a woman with her arm around him, both looking at a man in a white coat seen from behind" src="https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526438/original/file-20230516-29-52pib8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Patients and care providers sometimes have strict privacy concerns, wanting their participation in MAID kept confidential because of disapproving family, colleagues or community members.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>This is particularly true in smaller communities where privacy may be more limited, health-care professionals are <a href="https://doi.org/10.1111/nin.12308">highly visible</a> and people may be concerned about <a href="https://edmontonjournal.com/news/local-news/rural-alberta-faces-more-end-of-life-care-challenges-conference">MAID-related stigma</a>.</p>
<p>One patient in our study had family members insist on keeping their cause of death a secret. Another participant spoke about a patient’s request for the MAID team to do the provision at a long-term care home without letting the staff, family or other residents know. </p>
<p>When medical providers are asked to assist patients in such secrecy, transparency may become compromised.</p>
<blockquote>
<p>“Staff had to really balance transparency with confidentiality… One of those transparency pieces, very clearly from the government, was accurate recording, so that there was nothing secret… (But) we’ve had patients who have said, ‘I don’t want my family to know.’ But they’re going to find out what the cause of death was; the death certificate is very clear.”</p>
</blockquote>
<p>In cases like this, medical professionals are placed in the difficult position of not being able to accommodate privacy requests of patients or family members, as doing so could undermine ethical obligations of transparency and professional accountability.</p>
<h2>A dignified death vs. a dignified life</h2>
<p>MAID is often celebrated for supporting <a href="https://www.dyingwithdignity.ca/">suffering patients to exercise control and die with dignity</a>. </p>
<p>With the passage of <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7</a>, which removed the requirement of a reasonably foreseeable death, Canadians are now applying for MAID when suffering is impacted by socioeconomic factors such as inadequate housing, medical care, food security or income supports. </p>
<p>As a result, there has been growing concern about offering this service in a limited social welfare state <a href="https://www.thestar.com/opinion/contributors/2021/02/11/if-medically-assisted-death-becomes-more-accessible-for-canadians-we-have-a-moral-obligation-to-make-living-well-through-housing-mental-health-supports-accessible-too.html?rf">that does not provide the conditions for people with an illness or disability to live with dignity</a>.</p>
<p>There have been news reports of people being offered MAID when they just needed assistance to live. This has included a <a href="https://www.ctvnews.ca/politics/paralympian-trying-to-get-wheelchair-ramp-says-veterans-affairs-employee-offered-her-assisted-dying-1.6179325">veteran who merely required a wheelchair ramp</a>, individuals who did not have access to food or <a href="https://www.ctvnews.ca/health/woman-with-chemical-sensitivities-chose-medically-assisted-death-after-failed-bid-to-get-better-housing-1.5860579">adequate housing</a> and <a href="https://www.ctvnews.ca/health/the-solution-is-assisted-life-offered-death-terminally-ill-ont-man-files-lawsuit-1.3845190">patients who needed home care</a>. </p>
<p>We have also recently seen <a href="https://www.ctvnews.ca/health/the-number-of-medically-assisted-deaths-in-canada-s-prisons-a-concern-for-some-experts-1.6380440">reports of prisoners who may be requesting MAID to escape the harsh conditions of prison life</a>.</p>
<p>In our research, a participant told us about an individual who had received MAID and might have otherwise benefited from existing programs:</p>
<blockquote>
<p>“There was a (patient) in our community who went through MAID… and his diagnosis was heart failure… (But) he never came to our program and I felt there were a lot of things that we can actually do with these heart failure patients to give them good quality of life.”</p>
</blockquote>
<p>Canadian legal scholar Trudo Lemmens has similarly noted <a href="https://www.cbc.ca/news/opinion/opinion-medical-assistance-in-dying-maid-legislation-1.5790710">that MAID may be quicker to access than certain medical and financial supports</a>, including, for instance, access to specialized long-term care, specialized pain clinics and the <a href="https://www.canada.ca/en/services/benefits/publicpensions/cpp/cpp-disability-benefit.html">Canada Pension Plan Disability Benefits</a>.</p>
<p>“It is crucial that individuals are not placed in a position <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5349713/">where MAID will be seen as the only alternative to suffering</a>.</p>
<p>Unfortunately, we heard from study participants that this issue may be further exacerbated in rural areas with limited access to palliative care. </p>
<blockquote>
<p>"I think some of those patients don’t get the same palliative care that somebody in town would and so maybe they’re opting to do MAID sooner than somebody else would… maybe they didn’t really want to do it but they kind of felt that it was their only option.”</p>
</blockquote>
<p>Another study has already corroborated this concern, noting there is an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8302435/">inadequate provision of palliative care for those requesting MAID</a>. This is alarming as it signals the reality that MAID requests are sometimes made not out of necessity, but rather due to unmet needs.</p>
<h2>Moving forward</h2>
<p>These tensions surrounding MAID place staff in complex ethical predicaments and are deserving of greater attention. Current policy and legislation do not adequately address how they ought to navigate potential conflicts between palliative care and MAID, between transparency and privacy, or how to best handle MAID requests being made due to unmet socioeconomic or medical needs. </p>
<p>This situation is made worse by the fact that some of our participants felt ill-prepared to step into a MAID-related role due to limited training or support.</p>
<p>We encourage the federal government to reconsider its role in improving the quality of life of its citizens. In many situations, Bill C-7 has made “dying with dignity” easier than “living with dignity.” It is ethically problematic if a state is more willing to facilitate death than to provide the necessities of life.</p><img src="https://counter.theconversation.com/content/205278/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julia Brassolotto receives funding from Alberta Innovates and the Social Sciences and Humanities Research Council (SSHRC). </span></em></p><p class="fine-print"><em><span>Alessandro Manduca-Barone and Monique Sedgwick do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Bill C-7 has created ethical tensions between MAID providers and palliative care, between transparency and patient privacy, and between offering a dignified death rather than a dignified life.Alessandro Manduca-Barone, Research Associate - Faculty of Health Sciences, University of LethbridgeJulia Brassolotto, Associate Professor, Public Health and Alberta Innovates Research Chair, University of LethbridgeMonique Sedgwick, Associate Professor of Nursing, University of LethbridgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2041082023-05-11T20:48:13Z2023-05-11T20:48:13ZOlder people who are homeless need better access to hospice and palliative care<figure><img src="https://images.theconversation.com/files/524435/original/file-20230504-15-gf7bsb.jpg?ixlib=rb-1.1.0&rect=149%2C86%2C3000%2C2048&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A core focus of palliative care is on easing symptoms and increasing quality of life for people who have a serious or chronic illness, and not solely for those who are dying.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Most people may not wish to devote much time to thinking about their death. However, it’s an unfortunate fact that the entry point into experiences or conversations around death and end-of-life care can happen abruptly. </p>
<p>An unexpected death or a terminal diagnosis can leave people ill-equipped to navigate what often feels like uncharted territory of navigating end-of-life care, bereavement and grief. </p>
<p>The challenging realities surrounding end-of-life care are especially difficult for older people experiencing homelessness. For these older adults, intersectional and compounding experiences of oppression, such as poverty, racial disparities and ageism, create barriers to accessing hospice care. </p>
<h2>Misconceptions about hospice care</h2>
<p>The need for end-of-life and palliative services for unhoused people will <a href="https://homelesshub.ca/sites/default/files/SOHC16_final_20Oct2016.pdf">likely continue to grow</a> as the population experiencing homelessness grows and ages. </p>
<p>Currently only 16 to 30 per cent of Canadians <a href="https://maisonstraphael.org/wp-content/uploads/2016/05/Fact_Sheet_HPC_in_Canada-Spring-2014-Final.pdf">have access to hospice and palliative care services</a>, and 34 per cent of Canadians are not clear on <a href="http://www.hpcintegration.ca/resources/what-canadians-say/survey-data-by-province.aspx">who is eligible or who should utilize hospice services</a>. In response, May 7-13 marks <a href="https://www.chpca.ca/campaigns/national-hospice-palliative-care-week/">National Hospice Palliative Care week</a>, which is aimed at increasing awareness about hospice care in Canada. </p>
<figure class="align-center ">
<img alt="senior man sitting in chair and talking with a health-care provider wearing scrubs and a stethoscope" src="https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/524436/original/file-20230504-25-jg5f4w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Hospice care is provided in a number of settings, including in patients’ homes.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The misconceptions about hospice care have had a direct impact on the engagement of services for the public, <a href="https://doi.org/10.1186%2Fs12904-019-0404-y">but also for Indigenous communities and for older adults experiencing homelessness</a>. </p>
<p>Efforts to increase awareness about hospice often neglect the most vulnerable populations. Future efforts must merge education and awareness with intersectionality, which takes into consideration the intersections of inequities that impact unhoused older adults.</p>
<p><a href="https://www.chpca.ca/about-hpc/">Hospice care</a> focuses on addressing the full spectrum of a patient’s physical, emotional, social and spiritual experiences and needs. A common misconception is that hospice is exclusively a location or place where people go to die. Contrary to this notion, hospice is a service that is provided in various settings including within one’s home, long-term care facilities, hospice centres or within a hospital. </p>
<h2>End-of-life care</h2>
<p>While many Canadians <a href="https://maisonstraphael.org/wp-content/uploads/2016/05/Fact_Sheet_HPC_in_Canada-Spring-2014-Final.pdf">prefer to die at home</a>, older people experiencing homelessness <a href="https://doi.org/10.1186/s12904-018-0320-6">do not have the same opportunities for end-of-life care options</a>, and as a result <a href="https://news.gov.bc.ca/releases/2022PSSG0063-001528">many unhoused older people die in the hospital or institutional settings</a>.</p>
<p>Family and friends often play an essential role in caring and advocating for a loved one during their end-of-life process. We can only hope to have loved ones by our side during these final stages; however, that is not the reality for many unhoused community members who do not have the option to die at home with loved ones. </p>
<p><a href="https://doi.org/10.1186/s12904-018-0320-6">Older people experiencing homelessness are especially vulnerable</a> due to limited family or social support networks. Lack of social support can result in unhoused older people feeling isolated and fearful about dying alone or anonymously.</p>
<p>A core focus of palliative care is on <a href="https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care">easing symptoms and increasing quality of life</a> for people who have a serious or chronic illness, and not solely for those who are dying. Palliative care can be a valuable form of health care for older people experiencing homelessness, as it can offer a tailored approach to managing multiple chronic or terminal illnesses, <a href="https://doi.org/10.1016/j.jpainsymman.2016.10.364">which are prevalent among unhoused older people</a>. </p>
<p>Palliative care that takes place in a hospital setting can decrease end-of-life care costs by nearly 50 per cent <a href="http://hpcintegration.ca/media/24434/TWF-Economics-report-Final.pdf">by reducing intensive care unit admissions and unnecessary intervention procedures</a>. </p>
<p>We believe it is valuable to consider that if end-of-life care costs were reduced by using palliative care practices, the cost savings could be used to fund services that directly support unhoused older adults, such as increased affordable housing options. </p>
<h2>Aging in the right place</h2>
<p>As members of the <a href="https://www.sfu.ca/airp.html">Aging in the Right Place</a> project research team at Simon Fraser University, we are working to better understand what aging and dying in the right place means to unhoused older adults in two sites providing end-of-life care in Vancouver. </p>
<p>May’s Place Hospice, which is in the Downtown Eastside of Vancouver, provides end-of-life care for community members in that part of the city. May’s Place has created a communal, home-like environment with private rooms, meals provided three times a day, 24-hour nursing care, a smoking lounge and family gathering space. </p>
<figure class="align-center ">
<img alt="A person in a hospital bed looking out a large window with a mug in their hands." src="https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/524438/original/file-20230504-25-zj240g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Palliative care that takes place in a hospital setting can decrease end-of-life care costs by nearly 50 per cent.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Another inpatient hospice setting in Vancouver is Cottage Hospice, located in a 1924 heritage building. Patients have a view of the North Shore mountains and are close to the water. Cottage Hospice and May’s place provide the same types of hospice palliative care support, and both care for older patients experiencing homelessness, but serve different populations based on their location and setting, demonstrating that hospice and palliative care is not a one-size-fits all approach.</p>
<p>The Aging in the Right Place project captures the perspectives and lived experiences of older people experiencing homelessness through integrating photovoice interview research methods as well as data collection methods that focused on the hospice setting, the neighbourhood, and experiences of staff who work to support unhoused older people. <a href="https://doi.org/10.1177/109019819702400309">Photovoice is a method used in community-based research</a> in which participants use photo taking and storytelling to document their own perspectives and experiences.</p>
<p>In the Vancouver area where we work — also known as the land that belongs to the Skwxwú7mesh (Squamish), xʷməθkwəy̓əm (Musqueam) and Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh) people — and throughout the province, <a href="https://doi.org/10.1186/s12904-019-0404-y">colonization and colonial medical models have had lasting and detrimental impacts</a> on Indigenous knowledge and traditional practices around death and dying for First Nation communities.</p>
<p>One example of these impacts is that current hospice models may not reflect culturally relevant care models. Hospice organizations throughout B.C. should prioritize increasing policy and practice for Indigenous groups to ensure safety and culturally relevant care are implemented. Ensuring accessibility to hospice and palliative care is one step towards dismantling these barriers for Indigenous populations. </p>
<p>B.C. can turn to the <a href="https://www.icha-toronto.ca/programs/peach-palliative-education-and-care-for-the-homeless">Palliative Education and Care for the Homeless (PEACH) service fostered by Inner City Health Associates (ICHA)</a> in Toronto as an example. PEACH is taking a diverse and innovative approach to providing palliative care among the homeless and vulnerable populations, including Indigenous communities and older adults. Innovative and culturally sensitive services such as these, are a step in the right direction to providing better end-of-life care to older adults experiencing homelessness.</p>
<p>It is crucial that we make hospice and palliative care services available to all community members, especially with the <a href="https://www.cihi.ca/en/infographic-canadas-seniors-population-outlook-uncharted-territory">aging population</a> and an <a href="https://www.chpca.ca/wp-content/uploads/2020/03/CHPCA-FactSheet-D.pdf">increase in chronic illnesses</a> throughout Canada. </p>
<p>In addition to supporting community members, hospice and palliative care should focus efforts on tailoring approaches to provide culturally relevant care, increasing staff education about the lived experiences of older people experiencing homelessness, and creating safe and accessible services in B.C. for marginalized communities. </p>
<p>We must actively dismantle misconceptions about the role of hospice and palliative care through education and awareness to facilitate appropriate service delivery and use for diverse populations.</p><img src="https://counter.theconversation.com/content/204108/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rachelle Patille receives funding Canada Mortgage and Housing Corporation (CMHC) and the Social Sciences and Humanities Research Council (SSHRC) in affiliation with the AIRP Project which this piece is linked to.
</span></em></p><p class="fine-print"><em><span>Atiya Mahmood receives funding from Canada Mortgage and Housing Corporation (CMHC) and the Social Sciences and Humanities Research Council (SSHRC) for the AIRP project which this piece is linked to.</span></em></p><p class="fine-print"><em><span>Gracen Bookmyer receives funding Canada Mortgage and Housing Corporation (CMHC) and the Social Sciences and Humanities Research Council (SSHRC) in affiliation with the AIRP Project which this piece is linked to.</span></em></p><p class="fine-print"><em><span>Sarah Canham receives funding from the Canada Mortgage and Housing Corporation (CMHC) and the Social Sciences and Humanities Research Council (SSHRC) in affiliation with the AIRP Project which this piece is linked to.</span></em></p>The challenging realities surrounding end-of-life care are especially difficult for older people experiencing homelessness, who have more barriers to accessing hospice care.Rachelle Patille, Researcher, Aging In the Right Place | M.A. student, Gerontology, Simon Fraser UniversityAtiya Mahmood, Associate professor, Gerontology Department, Simon Fraser UniversityGracen Bookmyer, Research Assistant, Aging In The Right Place | M.A. student, Gerontology, Simon Fraser UniversitySarah Canham, Associate Professor, City & Metropolitan Planning, College Of Social Work, University of UtahLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1999902023-02-22T01:01:59Z2023-02-22T01:01:59ZThe NDIS promises lifelong support – but what about end-of-life support for people with disability?<figure><img src="https://images.theconversation.com/files/510814/original/file-20230217-20-8bwxxw.jpg?ixlib=rb-1.1.0&rect=35%2C23%2C7904%2C5273&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com.au/detail/photo/young-home-nurse-holding-hands-of-senior-woman-in-royalty-free-image/1349214129?phrase=mental%20health%20disability&adppopup=true">Getty</a></span></figcaption></figure><p>Official <a href="https://www.ndis.gov.au/about-us/publications/annual-financial-sustainability-reports">estimates</a> predict that by 2032, more than one million Australians will be supported by the National Disability Insurance Scheme (NDIS). </p>
<p>Much of the focus on the NDIS has been with how much it will cost, how people can get on it and how they can best spend the funds allocated in their plans. But no attention has so far been placed on the end-of-life needs of this highly marginalised population. People with psychosocial disabilities (such as schizophrenia, bipolar disorder, borderline personality disorder or major depressive disorders) and <a href="https://www.betterhealth.vic.gov.au/health/servicesandsupport/End-of-life-and-palliative-care-for-people-living-with-a-disability">life-limiting</a> diagnoses are particularly vulnerable. </p>
<p>The official <a href="https://www.dss.gov.au/sites/default/files/documents/09_2021/ndis-principles-determine-responsibilities-ndis-and-other-service-1.pdf">Responsibilities of the NDIS</a> and other service systems, agreed to by state and federal governments in 2015, make it clear the NDIS does not fund palliative care.</p>
<p>Although there is a commitment to maintain supports alongside palliative care, the National Disability Insurance Agency (which administers the NDIS) <a href="https://ourguidelines.ndis.gov.au/would-we-fund-it/interacting-mainstream-supports/services-if-youre-hospital#:%7E:text=While%20we%20will%20not%20typically,if%20you%20have%20challenging%20behaviours">says</a> it will typically stop funding supports once a person enters hospital. So, once a palliative NDIS participant enters hospital, hospice or residential aged care they can lose contact with the support workers they’ve come to trust and rely on. </p>
<h2>Gaps between systems</h2>
<p>The NDIS Act <a href="https://engage.dss.gov.au/wp-content/uploads/2019/11/Individual-submission1.pdf">states</a>:</p>
<blockquote>
<p>People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.</p>
</blockquote>
<p>NDIS Workers can often be an integral part of a participant’s life where trusting and therapeutic relationships are developed and maintained. Indeed, in some circumstances NDIS workers are the only other people that a participant with psychosocial disabilities is connected to. But the gaps between systems mean NDIS participants don’t have the support of their regular NDIS workers at the end of their lives.</p>
<p>This week, I <a href="https://www.cmhandismentalhealthconference.com.au/event/d5d6a713-f9b6-436e-8356-7ae9e3271fdd/summary">presented</a> our <a href="https://www.mdpi.com/1660-4601/19/16/10144">review</a> of published research, government websites and publications concerning NDIS participants with psychosocial disability and life-limiting diagnoses (including cancer, kidney disease, severe heart failure and severe lung diseases). </p>
<p>Unfortunately, we could not find published frameworks or pathways to help NDIS participants, families, carers, workers and clinicians understand where the NDIS and other service systems intersect. The gaps between services run counter to the NDIS Act, which says: </p>
<blockquote>
<p>The interactions of people with disability with the NDIS and other service systems should be as seamless as possible, where integrated planning and coordinated supports, referrals and transitions are promoted, supported by a no wrong door approach.</p>
</blockquote>
<p>A “no-wrong-door approach” means NDIS participants should be able to ask any professional supporting them for help. Regardless of the system that professional sits in – be it health, NDIS or mental health – they should refer and assist participants in getting the right support from the right system. Put simply, a participant should not need to ask for help more than once.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-to-improve-the-ndis-for-people-who-have-an-intellectual-disability-as-well-as-a-mental-illness-97921">How to improve the NDIS for people who have an intellectual disability as well as a mental illness</a>
</strong>
</em>
</p>
<hr>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="health worker puts hand on shoulder of person in blue shirt in supportive gesture" src="https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/510815/original/file-20230217-22-fwtd60.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">More training is needed for workers within hospital settings to help them navigate the NDIS.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/close-caring-doctor-touching-mature-patient-2173377963">Shutterstock</a></span>
</figcaption>
</figure>
<h2>The difference between palliative and end-of-life care</h2>
<p>There is often confusion about the NDIS and <a href="https://www.health.gov.au/topics/chronic-conditions">disabling health conditions</a> as well as the difference between palliative and end-of-life care. </p>
<p>Palliative care can be provided at any stage of a person’s life-limiting illness, sometimes for years, whereas end-of-life care is provided in the <a href="https://www.healthdirect.gov.au/palliative-care#:%7E:text=family%20and%20friends.-,What%20is%20the%20difference%20between%20palliative%20care%20and%20end%2Dof,receive%20palliative%20care%20for%20years">final weeks of life</a>. </p>
<p>Some life-limiting conditions, such as motor neurone disease, receive excellent support from the NDIS. Other conditions are listed as <a href="https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-conditions-are-likely-meet-disability-requirements">likely</a> to meet the disability requirements to enter the scheme. </p>
<p>Our <a href="https://www.mdpi.com/1660-4601/19/16/10144">review</a> found people with severe and persistent mental illnesses die up to 20 years sooner than average. Due to past negative experiences they are often disconnected from mainstream service support. </p>
<p>This can result in extremely late presentations to hospital, when pain or symptoms are overwhelming, and there are missed opportunities to provide palliative care. </p>
<p>Our review also found people with mental illnesses report that often hospital staff do not know how to support them and they experience significant discrimination and stigma in hospital and end-of-life settings. This can lead to bleak and inequitable death and dying experiences. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/labor-vows-to-tackle-the-ndis-crisis-whats-needed-is-more-autonomy-for-people-with-disability-181470">Labor vows to tackle the NDIS crisis – what's needed is more autonomy for people with disability</a>
</strong>
</em>
</p>
<hr>
<h2>Workers need guidance too</h2>
<p>There is work underway to define the essential elements of high quality end-of-life <a href="https://www.safetyandquality.gov.au/publications-and-resources/resource-library/national-consensus-statement-essential-elements-safe-and-high-quality-end-life-care">care</a>. These elements include teamwork, identifying triggers for end-of-life care, training, support and responding to concerns. But there is no clear guidance about delivering this essential support to NDIS participants.</p>
<p>The next step to ensuring all Australians with disability can be well supported once they develop a life-limiting illness, will be for governments to agree on a comprehensive NDIS palliative care framework and provide training for anyone working with NDIS participants with psychosocial or life-limiting disability to support it.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/its-shown-me-how-independent-i-can-be-housing-designed-for-people-with-disabilities-reduces-the-help-needed-181793">'It's shown me how independent I can be' – housing designed for people with disabilities reduces the help needed</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/199990/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>PhD Candidate, Research Associate, Casual Academic
Flinders University
Kathy Boschen is affiliated with:
Board Member for Lutheran Disability Services
Wellington Centre
2 Portrush Road, Payneham SA
08 8212 7766
Formerly,
- A Senior Compliance Officer for the NDIS Quality and Safeguards Commission; and
- An AAT Advisor for the National Disability Insurance Agency - Administrative Appeals Tribunal Team, and
- A National Disability Insurance Agency Subject Matter Expert - Mental Heath Access. </span></em></p>Gaps between health systems can mean NDIS participants at the end of their lives don’t have the support of their regular NDIS support workers.Kathy Boschen, Research Associate, Casual Academic, PhD Candidate, Flinders UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1866252022-07-17T13:26:48Z2022-07-17T13:26:48ZHealth-care providers and MAID: The reasons why some don’t offer medically assisted death<figure><img src="https://images.theconversation.com/files/474342/original/file-20220715-495-eypa2y.jpg?ixlib=rb-1.1.0&rect=8%2C8%2C5218%2C3979&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Several factors ranging from personal spiritual beliefs to patient relationships to medical legal issues can influence whether a health-care practitioner participates in providing medical assistance in dying (MAID).
</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from <a href="https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2020/annual-report-2020-eng.pdf">2019 to 2020 highlights a 34.2 per cent increase</a> in Canadians accessing MAID. </p>
<p>Bill C-7, which passed in June 2021, changed the eligibility criteria by <a href="https://lop.parl.ca/sites/PublicWebsite/default/en_CA/ResearchPublications/LegislativeSummaries/432C7E#a2.1">removing the “natural death has become reasonably foreseeable” requirement</a>. As a result, more Canadians may qualify for MAID.</p>
<p><a href="https://wfrtds.org/wp-content/uploads/2021/02/Report-PAM-Survey-FINAL-.pdf">During the pandemic</a>, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least <a href="https://www.thestar.com/news/canada/2021/10/01/nova-scotia-is-pausing-referrals-for-medical-assistance-in-dying-amid-increased-demand-and-covid-strains.html">one Canadian province temporarily pausing referrals for patients wishing to access MAID</a>. </p>
<h2>Non-participation in MAID:</h2>
<p>Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/474329/original/file-20220715-26-vk0wg5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">David Lametti, Minister of Justice and Attorney General of Canada, delivers a statement on Bill C-7 on Parliament Hill in Ottawa in March 2021. The bill removed the criteria of a reasonably foreseeable death from MAID eligibility.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Sean Kilpatrick</span></span>
</figcaption>
</figure>
<p>As an end-of-life researcher and registered nurse, I investigated this question with the support of my thesis committee. That <a href="https://doi.org/10.1177/10497323211008843">research highlighted</a> the <a href="https://doi.org/10.1177/10497323211027130">complex and interwoven reasons</a> why health-care practioners may not participate in MAID. </p>
<p>These factors can be divided into internal and external factors, but it’s also important to recognize that there are conscience and non-conscience-based factors that influence non-participation. </p>
<h2>Internal factors</h2>
<p>Several personal, or internally originating, factors influenced non-participation. These included a general discomfort in caring for dying patients as well as the provider’s previous personal and work experiences related to death and dying. Also, MAID did not align with some practioners’ approaches to end-of-life care. </p>
<p>Other factors that influenced non-participation included practitioners’ views of their professional duty. MAID did not align with some practitioners’ faith or spiritual beliefs, and some reported they could not imagine being at peace with the decision to participate in medically assisted dying. </p>
<p>Health-care practitioners also considered how they were likely to respond emotionally to participating in MAID. They had concerns about the future impact of MAID participation in terms of their potential risk of post-traumatic stress disorder and burnout.</p>
<h2>External factors</h2>
<ul>
<li><p><strong>Health-care system factors:</strong> The health-care system influenced non-participation. This included working for an organization with an institutional conscientious objection to MAID and the uncertainty of working within a rapidly changing legal landscape in terms of MAID regulation. There were also concerns about adequate access to alternatives to MAID, such as palliative care and chronic care support at home. Some nurse practitioners reported that they did not participate in MAID because of limiting job or practice descriptions at their current employer or a lack of billing codes that would enable them to be paid for these services.</p></li>
<li><p><strong>Community factors:</strong> Reasons for non-participation also included gauging the “community conscience,” perceiving a lack of openness in end-of-life discussions and the dominant religious beliefs of the community. Health-care practitioners were concerned about the impact of having to reduce or cancel other services in an already busy practice to make the time to provide MAID care to a single patient. They were also unsure if or how culture influenced the patient’s perception of MAID, or the patient’s perception of them as health-care practitioners if they participated or if participation would alter the community’s trust in them. </p></li>
</ul>
<figure class="align-center ">
<img alt="Cropped image of a person in a white coat standing behind a seated older person, holding their hand" src="https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=187&fit=crop&dpr=1 600w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=187&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=187&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=234&fit=crop&dpr=1 754w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=234&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/474344/original/file-20220715-22-nxu8ou.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=234&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The health-care practitioner-patient relationship influenced non-participation. A long relationship with the patient could make participating in MAID uncomfortable and challenging.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<ul>
<li><p><strong>Practice factors:</strong>
For some health-care practitioners, their decision to not participate in MAID was influenced by a lack of policy and program knowledge or skills to participate in the MAID assessment or provision. Another reasons was adequate pay for the time and overhead costs involved. Others said they lacked understanding about the optimal care model for MAID (such as whether MAID is provided by family medicine practitioners, end-of-life care practitioners or MAID teams). Others identified that MAID was outside their clinical interest and practice strengths.</p></li>
<li><p><strong>Visibility factors:</strong>
How MAID participation would be viewed by colleagues, clinic staff and patients also influenced the non-participation of health-care providers. This included fear of colleagues’ disapproval, fear that participation would harm patient relationships and their relationship with their faith community and a fear that participation would be interpreted as giving up on patients.</p></li>
<li><p><strong>Risk factors:</strong>
Health-care providers contemplated the risk to themselves, their practice and their families. Specifically, the risk associated with professional discipline if the patient or patient’s family disagreed with their assessments, the risk of colleagues making their professional lives difficult and the perceived risk of personal physical harm or violence to themselves or their families. </p></li>
<li><p><strong>Time factors:</strong>
Concerns about competing clinical demands, time-limited appointments that do not accommodate end-of-life conversations and lack of time to offer quality MAID care influenced non-participation as well. Some health-care providers did not wish to take on new practices at their current career stage (for example, close to retirement) and others noted a lack of time to take continuing education in MAID.</p></li>
<li><p><strong>Patient’s family factors:</strong>
Other factors that influenced non-participation in MAID related to the patient’s family. Health-care providers expressed concern that participation would impact the care provided to other family members and that there was a lack of support for the family before, during and after MAID. They also considered the potential challenges of inter-family conflict around the patient’s MAID choice and the impact of the MAID death on future family dynamics.</p></li>
<li><p><strong>Patient relationship factors:</strong>
Another factor was the health-care practitioner/patient relationship. A long relationship with the patient could make participating in MAID uncomfortable and challenging. Others noted that a long history with a patient would support open discussions about their reasons for not participating in MAID. </p></li>
</ul>
<h2>Support for health-care practitioners</h2>
<p><a href="https://hdl.handle.net/10388/13420">My research</a> outlines a model of non-participation in the formal MAID processes. In terms of conscience and non-conscience-based factors, it’s vital to differentiate between a conscientious objection <em>to</em> MAID and non-participation <em>in</em> MAID because health-care practitioners require different support for these. </p>
<p>Steps that might support health-care practitioners who are considering participating in MAID include clarifying regional models of care, which vary between provinces and territories. </p>
<p>Practice-focused MAID education could include not only policy and legal aspects but also pragmatic issues such as obtaining medications and administrative requirements, as well as discussions about relevant factors like communication skills and religious knowledge. </p>
<p>Recognizing the practice issues, time and relationship investment required to provide MAID, and developing fair remuneration policies for health-care practitioners who provide it, may support more participation in MAID.</p>
<p>Supporting health-care practitioners will be vital to a sustainable, healthy health-care system for Canadians.</p><img src="https://counter.theconversation.com/content/186625/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Janine Brown has received funding from the Saskatchewan Health Research Foundation, Canadian Association of MAID Assessors and Providers and Dying with Dignity Canada. </span></em></p>For people to access medical assistance in dying (MAID) requires health-care professionals willing to provide the service. The reasons health-care providers choose not to participate are important.Janine Brown, Assistant Professor, Faculty of Nursing, University of ReginaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1840872022-06-29T09:39:33Z2022-06-29T09:39:33ZDeath literacy: why it’s important to talk about dying<figure><img src="https://images.theconversation.com/files/471572/original/file-20220629-12-7xef5r.jpg?ixlib=rb-1.1.0&rect=0%2C24%2C5402%2C3572&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption"></span> </figcaption></figure><p>When it comes to talking about death, we have no shortage of euphemisms. This is perhaps most famously illustrated in Monty Python’s dead parrot sketch from 1971. A pet shop worker insists to a customer that his new parrot is “not dead but resting, stunned, pining for the fjords, kipping on his back, tired and shagged out after a long squawk”. The customer responds: “It is an ex-parrot, deceased, gone to the choir invisible, is pushing up the daisies, demised, passed on, is no more, has ceased to be. It’s expired and gone to see its maker, is a bereft of life, late parrot that rests in peace.” </p>
<hr>
<iframe id="noa-web-audio-player" style="border: none" src="https://embed-player.newsoveraudio.com/v4?key=x84olp&id=https://theconversation.com/death-literacy-why-its-important-to-talk-about-dying-184087&bgColor=F5F5F5&color=D8352A&playColor=D8352A" width="100%" height="110px"></iframe>
<p><em>You can listen to more articles from The Conversation, narrated by Noa, <a href="https://theconversation.com/us/topics/audio-narrated-99682">here</a>.</em></p>
<hr>
<p>Talking openly about death – and dying – can be difficult. People who have cared for someone who is dying <a href="https://assets.researchsquare.com/files/rs-1650107/v1/f84db744-7a76-423a-8ea3-229b77571ea7.pdf?c=1652898598">have been shown</a> to feel they can engage more easily with this behaviour. Their experience helps them overcome the barriers that so many of us feel. </p>
<p>Being able to talk about death, dying and loss is an important aspect of what psychologists and palliative care specialists refer to as “<a href="https://www.tandfonline.com/doi/pdf/10.1080/09699260.2015.1103498?casa_token=Y0-duT4fGRUAAAAA:nnknAuKt4fwgtmtY1PUNzl2HiLLW92buHT27QzoxIRiaQyQwWJA5rhNy6Vrhi3aeQoi7GuoBBwdR">death literacy</a>”. This is the practical know-how about how to gain access to, understand and make informed choices about end-of-life and death care options. It directly shapes the decisions we make about the care we receive as well as our ability to care for others. </p>
<figure class="align-center ">
<img alt="Man and woman sit on a park bench talking" src="https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/471573/original/file-20220629-14-f4xreq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">People find it difficult to talk about death.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/grandmother-young-guy-formal-clothes-have-1654422859">Shutterstock</a></span>
</figcaption>
</figure>
<p>The 2021 UK census <a href="https://www.ons.gov.uk/releases/initialfindingsfromthe2021censusinenglandandwales">results</a> show that there is a greater proportion of older people in our society than in previous decades. With an ageing population, of course, comes a <a href="https://www.nisra.gov.uk/sites/nisra.gov.uk/files/publications/NPP18_Bulletin.pdf">higher number of deaths</a> and greater <a href="https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0860-2">pressure on the healthcare system</a>. </p>
<h2>Why we don’t talk about death</h2>
<p>We conducted an <a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-13319-1#Tab2">online survey</a> in 2019, where 381 adults in Northern Ireland were asked what prevents them talking more about death and dying.</p>
<p>We found that people feel ill-equipped for talking about death. When talking with someone else about that person’s situation, they worry they might say the wrong thing, or be unable to help that person navigate the emotions these discussions bring up. As one woman put it:</p>
<blockquote>
<p>At times you want to avoid upsetting someone even though you know it would be good for them to talk </p>
</blockquote>
<p>Conversely, when asked what would encourage them to talk more about death and dying, a young woman suggested:</p>
<blockquote>
<p>When you compare the polarity, between birth and death, of how much it is acknowledged, it’s bizarre. Death is just as big a part of life … If we could all embrace it and bring a sense of community and camaraderie to it, it wouldn’t be as dark and frightening.</p>
</blockquote>
<h2>What is death literacy?</h2>
<p>In 2021 <a href="https://pureadmin.qub.ac.uk/ws/portalfiles/portal/258568549/public_attitudes_to_death_and_dying_report_final.pdf">we surveyed</a> 8,077 UK adults. Our results showed that in their final days of life the top priorities for most people were to be free of pain and other symptoms, to be in the company of loved ones, and to maintain dignity and respect. Despite this, most <a href="https://pureadmin.qub.ac.uk/ws/portalfiles/portal/258568549/public_attitudes_to_death_and_dying_report_final.pdf">reported</a> not having spoken to anyone about their wishes.</p>
<p>We know that as people’s health declines, there is the risk that they may lose the capacity to make important decisions about their end-of-life and death care. So being able to speak out, in advance, is crucial. </p>
<p>There are several aspects to empowering people to be <a href="https://www.tandfonline.com/doi/pdf/10.1080/09699260.2015.1103498?casa_token=Y0-duT4fGRUAAAAA:nnknAuKt4fwgtmtY1PUNzl2HiLLW92buHT27QzoxIRiaQyQwWJA5rhNy6Vrhi3aeQoi7GuoBBwdR">death literate</a>. Talking about death is important, but people also need other skills and knowledge to provide practical support around end of life and death. </p>
<p><a href="https://assets.researchsquare.com/files/rs-1650107/v1/f84db744-7a76-423a-8ea3-229b77571ea7.pdf?c=1652898598">We have found</a> that people in the UK often do not know how to navigate the health system at end-of-life or funeral options for themselves or others. <a href="https://pureadmin.qub.ac.uk/ws/portalfiles/portal/258568549/public_attitudes_to_death_and_dying_report_final.pdf">Almost half</a> of UK
respondents we spoke to reported they did not know where to find information on how to plan for care at the end of life. And <a href="https://pureadmin.qub.ac.uk/ws/portalfiles/portal/258568549/public_attitudes_to_death_and_dying_report_final.pdf">more than half</a> of the people we surveyed didn’t know where to find bereavement support.</p>
<figure class="align-center ">
<img alt="Man holds the hand of an older woman resting in bed" src="https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/469047/original/file-20220615-11210-qlan0j.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Care from the community is needed for people at the end of their lives.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-man-holding-hand-his-ill-419729023">Shutterstock</a></span>
</figcaption>
</figure>
<p>Public health specialists, including UK charity <a href="https://compassionate-communitiesuk.co.uk/">Compassionate Communities</a>, increasingly recognise that death, dying and loss are both central and inseparable from the social context. In other words, they do not happen in a vacuum. They are as public health sociologist <a href="https://theccexchange.ca/system/files/post_files/2013%20-%20Compassionate%20communities%20end%20of%20life%20care%20as%20everyone's%20responsibility_0.pdf">Prof Allan Kellehear</a> reminds us, “everyone’s responsibility”.</p>
<p>Anyone who is either approaching the end of their life, or caring for someone who is dying or grieving the loss of a loved one needs support. And the <a href="https://www.tandfonline.com/doi/pdf/10.1080/09581590601156365?casa_token=Mnw1MfowIj8AAAAA:78AMwVVYKRSHOgKG0HCvPOBcIpWIt_mAROn9PXOOVMY753Lht1vmJY9vdeAqWNOGx0R3DTyLHSAG">new public health approach</a> to end-of-life care in the UK advocates that this support is best provided by healthcare providers working in tandem with death literate communities of family, friends and neighbours. </p>
<p>Researchers predict by 2040 most deaths <a href="https://pureadmin.qub.ac.uk/ws/files/247256865/Population_Based_Projections_of_Place_of_Death_for_Northern_Ireland_by_2040_PMHCOJ_6_140_1.pdf">will occur</a> either at home or in care homes. Empowering people to advocate for their own end-of-life care as well as to care for those around them, has never been more important.</p><img src="https://counter.theconversation.com/content/184087/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lisa Graham-Wisener does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Avoiding talk of death won’t make it disappear.Lisa Graham-Wisener, Lecturer of Health Psychology, Queen's University BelfastLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1793642022-04-06T12:23:59Z2022-04-06T12:23:59ZWhat is palliative care? How is it different from hospice?<figure><img src="https://images.theconversation.com/files/455876/original/file-20220401-11-wi4118.jpg?ixlib=rb-1.1.0&rect=25%2C12%2C2092%2C1397&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Palliative care tries to support a patient's quality of life.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/doctor-comforting-patient-at-patients-home-royalty-free-image/1289186571?adppopup=true">Pekic/E+ via Getty Images</a></span></figcaption></figure><p>When most people hear the term palliative care, they look worried or confused. Introducing myself to patients and families as a <a href="https://www.gim-crhc.pitt.edu/people/yael-schenker-md-mas">palliative medicine physician</a>, I commonly hear things like, “Does this mean I am dying?” or “I am not ready for hospice.” </p>
<p>I respond by acknowledging these common fears, but emphasizing that palliative care and hospice care <a href="https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care">are two very different things</a>.</p>
<p><a href="https://www.medicare.gov/coverage/hospice-care">Hospice care</a> is a Medicare-covered benefit for people whose doctors believe they are in the last six months of life, and who want to stop treatments targeting their disease – such as chemotherapy for cancer – to focus on comfort. In contrast, <a href="https://getpalliativecare.org/">palliative care</a> is appropriate for people at any stage of serious illness and is provided alongside treatments aimed at curing disease.</p>
<p>Palliative care specialists like me are experts in <a href="https://www.hopkinsmedicine.org/health/wellness-and-prevention/palliative-care-methods-for-controlling-pain">treating physical symptoms</a> like pain and nausea. But just as important, we listen to patients’ stories and find out what is most important to them. We help make difficult treatment decisions and address <a href="https://getpalliativecare.org/depression-normal-seriously-ill/">the sadness and uncertainty</a> that often accompany serious illness. We walk alongside patients and their families at a time that can be frightening and overwhelming, offering comfort, information, guidance and <a href="https://doi.org/10.1001/jama.2021.14802">hope</a>.</p>
<p>Palliative care recognizes that <a href="https://doi.org/10.1001/jamahealthforum.2021.1099">ethical and compassionate care for serious illness</a> requires supporting the whole person in addition to fighting the disease.</p>
<h2>Mounting evidence</h2>
<p>The field of palliative care is still relatively new. In the early 1990s, research demonstrated substantial shortcomings in the quality of care for patients with serious illnesses. <a href="https://jamanetwork.com/journals/jama/article-abstract/391724">One 1995 study of nearly 5,000 people in the U.S.</a> found that half of patients who died in the hospital experienced moderate to severe pain in their last days of life. More than half of the time, doctors did not know when their patients preferred to avoid CPR at the end of life.</p>
<p>These types of findings helped inspire the field of palliative care over the course of the 1990s and early 2000s. <a href="https://resident360.nejm.org/content_items/history-of-palliative-care">It began</a> at a handful of hospitals as a specialty consult service working alongside primary teams – such as oncologists, cardiologists, surgeons and neurologists – to improve the experience of serious illness and ensure patients’ needs were met.</p>
<p>According to the <a href="https://reportcard.capc.org/">State-by-State Report Card on Access to Palliative Care</a>, which is compiled by researchers at <a href="https://www.capc.org/">the Center to Advance Palliative Care</a>, only 7% of U.S. hospitals had a specialty palliative care service in 2001. Today, 72% of hospitals with 50 or more beds have a palliative care service, and palliative care specialists are increasingly available in other settings as well, including outpatient clinics, nursing homes and home-based programs. For example, it is now possible to see an oncologist for cancer treatment or a cardiologist for heart failure, followed by an appointment with a palliative care specialist who treats related symptoms such as <a href="https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-fatigue/art-20047709#:%7E:text=You%20may%20experience%20fatigue%20if,mood%20%E2%80%94%20also%20may%20cause%20fatigue.">fatigue</a> and <a href="https://doi.org/10.1097/HRP.0000000000000162">depression</a>. </p>
<p>This growth is fueled in part by growing evidence of the benefits that palliative care provides for patients and families. <a href="https://www.palcare.pitt.edu/">Our research team at the University of Pittsburgh</a> led a <a href="https://jamanetwork.com/journals/jama/fullarticle/2585979">2016 review</a> of results from 43 randomized trials with nearly 13,000 patients – meaning that some patients received palliative treatment, and others did not. We found that palliative care was associated with significant improvements in patients’ quality of life and reductions in their physical symptoms one to three months afterward.</p>
<figure class="align-center ">
<img alt="A woman in a hospital bed, in a hospital gown, smiles and pets a fluffy dog as another woman looks on." src="https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456357/original/file-20220405-20-rhl0zg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Palliative care involves discussing what matters most to a patient’s quality of life, such as being able to care for their pets.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/pet-therapy-dog-visiting-senior-female-patient-in-royalty-free-image/465505909?adppopup=true">monkeybusinessimages/iStock via Getty Images Plus</a></span>
</figcaption>
</figure>
<p>Importantly, palliative care <a href="https://jamanetwork.com/journals/jama/fullarticle/2585979">was not associated</a> with shortened survival, pushing back against a popular assumption that pursuing palliative care means “giving up” on fighting disease. In fact, one <a href="https://www.nejm.org/doi/full/10.1056/nejmoa1000678">influential study</a> found that patients with advanced lung cancer who receive specialty palliative care in addition to standard oncology care lived almost three months longer than patients who received standard oncology care only.</p>
<p>Palliative care is now recommended in many national guidelines as a critical component of high-quality care for serious illnesses. For example, in 2016 <a href="https://doi.org/10.1200/JCO.2016.70.1474">the American Society of Clinical Oncology recommended</a> that all patients with advanced cancer receive dedicated palliative care services early after diagnosis, while also receiving treatment to target the disease. Increasingly, palliative care is viewed as an essential part of ethical and compassionate medical care.</p>
<h2>Not the norm</h2>
<p>One might suspect that an evidence-based service recommended by national guidelines would be available to everyone with serious illness. When it comes to palliative care, however, this is not the case. </p>
<p>Nationally, palliative care teams are vastly <a href="https://jamanetwork.com/journals/jamaoncology/article-abstract/2627421">understaffed</a>. <a href="https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2019.00018">Workforce shortages</a> are projected to worsen in the future, as <a href="https://acl.gov/aging-and-disability-in-america/data-and-research/projected-future-growth-older-population#:%7E:text=Data%2C%20Research%20%26%20Issues,-%2D%20Left%20Nav%20%2D&text=In%202019%2C%20there%20were%2054.1,and%2094.7%20million%20by%202060.">the U.S. population ages</a> and therapeutic advances mean people can live longer with serious illness. Even now, with COVID-19 surges having caused <a href="https://ourworldindata.org/covid-hospitalizations#how-many-people-are-in-hospital-due-to-covid-19-at-a-given-time">as many as 154,000 new hospitalizations weekly</a> and made other patients sicker because of <a href="https://doi.org/10.1111/jgs.17722">pandemic-related delays in care</a>, palliative teams are stretched to the limit.</p>
<p>Whether you or a loved one has access to palliative care may also depend on where you live and where you receive your medical care. According to the <a href="https://reportcard.capc.org/">State-by-State Report Card</a>, a hospital in New Hampshire is three times more likely to have a palliative care service than a hospital in Mississippi. Another <a href="https://doi.org/https://doi.org/10.1377/hlthaff.2021.01115">recent analysis</a> found that a not-for-profit hospital is two times more likely to have a palliative care service than a for-profit hospital.</p>
<p>A <a href="https://pubmed.ncbi.nlm.nih.gov/30707230/">2019 study</a> found that palliative care consults were less frequent at hospitals that serve the largest proportions of Black and Hispanic patients. These <a href="https://doi.org/10.1089/jpm.2013.9468">structural inequities</a> risk worsening <a href="https://doi.org/10.18043/ncm.81.4.254">known disparities</a> in the care of serious illness.</p>
<h2>Educating doctors</h2>
<p>Patients and families can request palliative care, but palliative care specialists usually are brought in once the primary clinical team recommends it. Yet many physicians do not, either because they mistakenly <a href="https://doi.org/10.1200/JOP.2013.001130">equate palliative care with hospice</a> or do not recognize the value that palliative care can bring.</p>
<p>One approach to expanding palliative care access is to enhance palliative training and support for every clinician who cares for patients with serious illness – an approach sometimes called <a href="https://www.uptodate.com/contents/primary-palliative-care">“primary” palliative care</a>. Another approach is to leverage newer care-delivery models, <a href="https://theconversation.com/is-telehealth-as-good-as-in-person-care-a-telehealth-researcher-explains-how-to-get-the-most-out-of-remote-health-care-142230">such as telemedicine</a>, to <a href="https://www.capc.org/toolkits/telehealth-and-palliative-care/">expand the reach</a> of palliative care specialists. </p>
<p>These solutions would require <a href="https://hospicenews.com/2021/09/21/lawmakers-call-on-congress-to-advance-hospice-palliative-workforce-bill-to-expand-hospice-and-palliative-care-training/">changing medical reimbursement and training models</a> to make palliative care fundamental – for everyone.</p><img src="https://counter.theconversation.com/content/179364/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Yael Schenker's research has been funded by the National Institute of Health, the National Palliative Care Research Center, PCORI, the American Cancer Society, AV Davis Foundation, and the McElhattan Foundation. She is a reviewer for UpToDate. </span></em></p>Palliative care, often misunderstood, is not synonymous with hospice care.Yael Schenker, Professor of Medicine, University of PittsburghLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1736142022-01-10T13:36:42Z2022-01-10T13:36:42ZEnd-of-life conversations can be hard, but your loved ones will thank you<figure><img src="https://images.theconversation.com/files/439730/original/file-20220106-23-1if8ay.jpg?ixlib=rb-1.1.0&rect=44%2C0%2C2028%2C1381&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">You can start these conversations simply, like saying, "I need to think about the future. Can you help me?"</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/senior-couple-holding-hands-royalty-free-image/200447695-001?adppopup=true">Richard Ross/The Image Bank via Getty Images</a></span></figcaption></figure><p>Death – along with taxes – is one of life’s few certainties. Despite this inevitability, most people dread thinking and talking about when, how or under what conditions they might die. </p>
<p>They don’t want to broach the topic with family, either, for fear of upsetting them. Ironically, though, talking about death “early and often” can be the greatest gift to bestow on loved ones.</p>
<p>As a <a href="https://www.bu.edu/sociology/profile/deborah-carr/">sociologist</a> who has studied end-of-life issues for more than two decades, I’ve learned that people know they should talk about death honestly and openly, but surprisingly few do. In fact, <a href="https://doi.org/10.3928/02793695-20171219-03">one 2021 study</a> showed that while 90% of adults say that talking to their loved ones about their end-of-life wishes is important, only 27% have actually had these conversations.</p>
<p>It’s frightening to think about our own suffering, or our loved ones’ distress. But everyone should talk about and prepare for death precisely because we want to minimize our own suffering at the end of life, and soften the anguish of loved ones left behind.</p>
<h2>No time to plan</h2>
<p>These conversations are more urgent now than ever, as the COVID-19 pandemic has <a href="https://doi.org/10.1001/jama.2021.5469">changed how Americans die</a>. </p>
<p>For the past several decades, most adults have died from <a href="https://www.cdc.gov/injury/wisqars/LeadingCauses.html">chronic illnesses</a> like heart disease, cancer and lung disease. The time between diagnosis and death for people with these conditions can be months or even years. That gives patients and their families ample time to share their feelings, resolve unfinished business, and make practical preparations for death – including <a href="https://theconversation.com/online-tools-put-will-writing-in-reach-for-most-people-but-theyre-not-the-end-of-the-line-for-producing-a-legally-binding-document-173569">estate planning</a>, <a href="https://www.nia.nih.gov/health/advance-care-planning-health-care-directives">advance care planning</a> and even planning a celebration of life that bears the dying patient’s creative imprint. </p>
<p>But when the pandemic struck in 2020, COVD deaths began to occur quickly and unexpectedly, with many patients <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/928729/S0803_CO-CIN_-_Time_from_symptom_onset_until_death.pdf">dying just days</a> after they felt their first symptoms. Their families were <a href="https://doi.org/10.1080/08959420.2020.1764320">robbed of final moments together</a> and often had no documents in place to guide the <a href="https://doi.org/10.1080/08959420.2020.1824540">patient’s health care</a> or the distribution of their possessions. This suddenness, isolation and lack of preparedness all are hallmarks of a “<a href="https://doi.org/10.1080/08959420.2020.1764320">bad death</a>” for both the patient and their family.</p>
<h2>What to cover</h2>
<p><a href="https://doi.org/10.1093/geroni/igx012">Advance care planning</a>, which typically involves <a href="https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303">a living will</a> and <a href="https://www.tuftsmedicalcenter.org/patient-care-services/patient-rights/health-care-proxy-medical-decision-making">a health care proxy</a>, allows people to articulate which medical treatments they want or don’t want at the end of life.</p>
<p>A living will formally articulates preferences for care, such as whether to use comfort measures like <a href="https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care">hospice and palliative care</a>, or more invasive measures like <a href="https://www.caregiver.org/resource/advanced-illness-feeding-tubes-and-ventilators/">feeding tubes and ventilators</a>. Documenting these preferences when the patient is still able to make those decisions helps to ensure they die on their own terms – a cornerstone of the “<a href="https://pubmed.ncbi.nlm.nih.gov/12866391/">good death</a>.” </p>
<p>Appointing a <a href="https://doi.org/10.1177/002214650704800206">health care proxy</a> when still relatively young and healthy gives people an opportunity to decide who will be tasked with their end-of-life decision-making. It also clarifies loved ones’ responsibilities and can fend off arguments that could arise around the deathbed. Having these discussions early also prevents panicked choices when someone’s health takes a dramatic turn for the worse. </p>
<figure class="align-center ">
<img alt="A woman and her older mother sit on a porch, drinking coffee." src="https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/439737/original/file-20220106-27-4gzo21.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">End-of-life conversations can ease suffering for families, not just patients.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/senior-mother-and-adult-daughter-having-coffee-on-royalty-free-image/1311072998?adppopup=true">MoMo Productions/DigitalVision via Getty Images</a></span>
</figcaption>
</figure>
<p>End-of-life discussions also help you to <a href="https://onlinelibrary.wiley.com/doi/10.1111/j.1751-9004.2011.00416.x">construct your own legacy</a>. In “<a href="https://www.worldcat.org/title/death-and-identity/oclc/2318294">Death and Identity</a>,” a classic book in death studies, sociologist Robert Fulton observed that “preserving rather than losing … personal identity” is a critical aspect of the dying process. Being treated <a href="https://doi.org/10.7326/0003-4819-132-10-200005160-00011">like a “whole person</a>” is a core component of a good death, and honest discussions are a key to maintaining your unique identity, even at the end of life.</p>
<p>Conversations also help us share how we’d like to be celebrated after we’re gone. This might be as simple as dictating the music, food, and photo or video displays for a memorial service; where to spread ashes; or charities for mourners to support. Some people take more ambitious steps at leaving behind a legacy, such as penning an autobiography or leaving behind videos for relatives. Creating a “post-self” that lingers years after the body has died can be a cherished gift to families.</p>
<h2>Getting started</h2>
<p>Broaching these conversations can be awkward or unnerving, but it doesn’t have to be. Death is a natural and inevitable part of life and should be approached as such. <a href="https://knowablemagazine.org/article/health-disease/2019/end-of-life-care">I have argued</a> that the end of life is a <a href="https://www.annualreviews.org/doi/abs/10.1146/annurev-soc-073018-022524">stage</a>, just as childhood, adolescence and old age are.</p>
<p>Each stage teaches lessons for the others that lie ahead.</p>
<p>Children learn skills in school that they’ll need to enter the workforce. Teens learn how to navigate romantic relationships as preparation for the future. Adults of all ages can learn about hospice and end-of-life medical care, make preparations for passing on their inheritance and discuss how they’d like to be honored in death. These steps can help attain an end of life marked by peace and self-directedness, rather than strife and the loss of autonomy.</p>
<figure class="align-center ">
<img alt="An older Black woman writes as she sits at a dining room table in front of a china cabinet." src="https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/439857/original/file-20220107-33826-eklb4c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Recording memories and ideas for a memorial service can help you craft your own legacy.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/woman-working-at-home-royalty-free-image/1062487638?adppopup=true">Lauren Mulligan/Moment via Getty Images</a></span>
</figcaption>
</figure>
<p>Ample resources are available to guide these conversations. Organizations like <a href="https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-ConvoStarterKit-English.pdf">The Conversation Project</a> – not related to <a href="https://theconversation.com">The Conversation</a> – have created guides for productive end-of-life discussions. Advance care planning documents ranging from <a href="https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/">living wills</a> to the “<a href="https://fivewishes.org/">Five Wishes</a>” program, which helps clarify people’s values about how they’d like to spend their final days, can be a good starting point.</p>
<p>A simple introduction like “I need to think about the future. Will you help me?” is a good icebreaker. And the first conversation eases the path to future chats, because changes in physical health, family relations and mental sharpness may necessitate revisions in end-of-life plans.</p>
<p>By discussing these issues during calm times, such as after a holiday get-together or birthday dinner, we can feel prepared and empowered as we and our families approach the inevitable.</p><img src="https://counter.theconversation.com/content/173614/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Deborah Carr has received research funding from Borchard Foundation, Department of Labor, National Institutes of Health, and RRF Foundation for Aging.
</span></em></p>When you prepare to talk about end-of-life decisions and the legacy you want to leave behind, try thinking about them as gifts you bestow to family and friends.Deborah Carr, Professor of Sociology and Director of the Center for Innovation in Social Science, Boston UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1619942021-06-14T17:59:34Z2021-06-14T17:59:34ZWhy is access to medically assisted death a legislated right, but access to palliative care isn’t?<figure><img src="https://images.theconversation.com/files/405982/original/file-20210611-17-yjynd9.jpg?ixlib=rb-1.1.0&rect=739%2C8%2C4564%2C3101&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Getting a referral to palliative care can be a complicated process.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>John started his first appointment in the Neuropalliative Care Clinic with, “I want to talk about MAID.” In our clinic, his request for medical assistance in dying is common. As legislated by government, I referred him to the MAID navigator. I had one request: that John wait to make his MAID decision until after seeing a community palliative care physician. </p>
<p>At his next appointment, John informed us he had withdrawn his MAID request because his primary symptom —pain — was now well controlled after our suggestions and those of the community palliative care doctor. John lived for two more years, during which he became closer with his daughter and continued to enjoy the company of his siblings.</p>
<p>John is not unusual. Neurologic illness accounts for 18 per cent of deaths in the Canada but <a href="https://doi.org/10.1016/j.parkreldis.2020.06.011">rarely has palliative care involvement</a>. By contrast, <a href="https://doi.org/10.25318/1310039401-eng">cancer accounts for 20 to 30 per cent of deaths</a>, but typically receives <a href="https://doi.org/10.1177%2F0269216317727157">75 per cent of palliative care</a>. </p>
<p>Part of the challenge is that palliative care services are often hospital-based, but most people who could benefit get their care in the community. Similarly, patients have recently refused palliative care <a href="https://www.virtualhospice.ca/Assets/MAiD_Report_Final_October_15_2018_20181218165246.pdf">in the belief that is the same as MAID</a>. In 2017, <a href="https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-april-2019.html">MAID accounted for 1.07 per cent</a> of deaths in Canada, increasing to <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying-annual-report-2019.html">two per cent in 2019</a>.</p>
<p>In June 2016, the <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html#a1">passed legislation that gave all eligible Canadians the right to request MAID</a>. Colleges of Physicians and Surgeons required physicians to refer people who request MAID to services or arrange for a physician who would make the referral. </p>
<figure class="align-center ">
<img alt="A male doctor consulting with an older female patient" src="https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/405983/original/file-20210611-19-cwcl3g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Since then, every province and territory devoted resources to navigate requests and assessments for MAID. Typically, provinces have a <a href="https://www.albertahealthservices.ca/info/Page13497.aspx">website for self-referral</a>, easily found by internet search and/or dedicated health-care staff to help navigate the MAID process or inform those who are MAID-curious. </p>
<h2>Complicated referrals</h2>
<p>By contrast, the referral process for palliative care is often convoluted. Many provincial web pages simply give a definition of palliative care (some confuse the issue by including the MAID navigation site) but do not provide a central access point for physicians or nurses. Referral forms (where available) are complex, which creates another barrier to access. Many palliative care programs have an unofficial prognosis of three to six months’ life expectancy for services, despite research demonstrating that early palliative care <a href="https://doi.org/10.1056/nejmoa1000678">improves outcomes and in fact, can prolong life</a>. </p>
<p>What is the disconnect? Health-care providers are an unexpected barrier as they often cling to the belief that palliative care is for the imminently dying or means to give up hope. <a href="https://doi.org/10.1177/0269216313502372">For the public, palliative care means dying soon</a>.</p>
<p>But <a href="https://www.who.int/news-room/fact-sheets/detail/palliative-care">modern palliative care</a> is about living well now, meeting patients’ goals and finding meaning in life. For John, we helped him set goals, focused on the positive in his life, like his better relationships with his children and ongoing closeness with his siblings. His sharp sense of humour emerged despite communication challenges.</p>
<p>Additionally, many palliative care programs exist in the oncology (cancer) department and thus, their focus is cancer-based. Twenty per cent of people die from cancer, but <a href="https://doi.org/10.1177%2F0269216313502372">receive 75 per cent of palliative care services</a>. Current training for palliative care physicians requires exposure to other patient populations like heart failure, kidney failure and neurologic illnesses, but health-care systems are slow to change. </p>
<figure class="align-center ">
<img alt="A man in a hospital bed and a woman holding his hand, listening to a doctor whose back is to the camera." src="https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/405984/original/file-20210611-17-auakb9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult.</span>
<span class="attribution"><span class="source">(shutterstock)</span></span>
</figcaption>
</figure>
<p>And finally, the workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.</p>
<h2>Making palliative care more accessible</h2>
<p>The solution requires a multi-faceted approach. All health-care providers need to have general palliative care skills because, in the way we all learn to control blood pressure and read a basic electrocardiogram, palliative care is part of good medical care. </p>
<p>At a systems level, placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult for patients and clinicians. Given the broader applicability of palliative care, it is time for palliative care to become an independent department. Up to 28 per cent of Canadians will be seniors, which means <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/aging-chronic-diseases-profile-canadian-seniors-executive-summary.html">more people with multiple, chronic conditions that could benefit from a palliative approach</a>.</p>
<p>Building the palliative care workforce is essential. The palliative care workforce in Canada is <a href="https://surveys.cma.ca/en/viewer?file=%2fdocuments%2fSurveyPDF%2fCMA_Survey_Workforce2017_Q6i_FPfocus-e.pdf#phrase=false">estimated to be 773 doctors for a population of 39 million</a>. Once the palliative care workforce is established, educating the public that palliative care includes a holistic approach to wellness and meaning in life can help re-frame and increase acceptance.</p>
<p>There are more people like John who should connect with a palliative care team before walking down the road to MAID. Let palliative care help you live well, now.</p><img src="https://counter.theconversation.com/content/161994/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Janis M. Miyasaki receives funding from Patient Centered Outcomes Research Institute, US; NINDS. Vice President of the American Academy of Neurology; Board Member, International Neuropalliative Care Society. </span></em></p>Palliative care is about living well and meeting patients’ goals, but referral can be more complex than access to medical assistance in dying (MAID). Palliative care should be as accessible as MAID.Janis M. Miyasaki, Professor, Department of Medicine, University of AlbertaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1609832021-05-20T19:58:03Z2021-05-20T19:58:03ZChoosing the care you’ll receive at the end of your life doesn’t always go to plan. Here are some tips to make sure it does<figure><img src="https://images.theconversation.com/files/401120/original/file-20210518-15-rjojeu.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5760%2C3837&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Advances in medical technology have dramatically altered the process of dying. It’s now possible to prolong life, with the frightening reality that this may simply extend our dying process.</p>
<p>Advance care planning is designed to empower us to retain some control over the last stages of our life by communicating our wishes about what we want, or don’t want, in terms of medical treatment. Generally this planning is done in well in advance of a medical crisis, while people are well.</p>
<p>However, <a href="https://www.tandfonline.com/doi/abs/10.1080/07481189408252656">evidence</a> <a href="https://pubmed.ncbi.nlm.nih.gov/16548797/">suggests</a> these plans may not work as intended in a crisis, because the message the patient thought to be crystal clear appears unclear to doctors and family.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/only-25-of-older-australians-have-an-advance-care-plan-coronavirus-makes-it-even-more-important-144354">Only 25% of older Australians have an advance care plan. Coronavirus makes it even more important</a>
</strong>
</em>
</p>
<hr>
<h2>Let’s go through an example</h2>
<p>The following is a mix of several similar real world patients, but names and some specific details have been altered to avoid identifying any particular case.</p>
<p>“Doug Jones” was a 75-year-old man with severe Parkinson’s disease that was making it increasingly difficult for him to manage at home, even with lots of help.</p>
<p>Doug’s swallowing had became progressively more difficult due to his disease, to the extent that Doug’s doctors had advocated for placement of a PEG feeding tube. This would be a tube through his tummy wall directly into his stomach, so he could be fed without swallowing. Doug had declined this on the grounds that eating and drinking were “about the last pleasure I have”. He recognised the risk of choking to death, but didn’t care.</p>
<p>Weeks later Doug was admitted to hospital after choking on a piece of orange. The orange had totally obstructed his airway, resulting in severely low levels of oxygen in the blood and cardiac arrest. It was over 30 minutes before the piece of orange was able to be removed.</p>
<p>On arrival in hospital, tests suggested Doug had suffered profound brain damage due to very low oxygen delivery. However, at this early stage, while it was reasonable to have grave concern, it was not possible for doctors to be certain about the outcome.</p>
<p>Well before all this happened, Doug had written an <a href="https://www.advancecareplanning.org.au/?gclid=CjwKCAjwy42FBhB2EiwAJY0yQucAvYAS_LKpbzDFCbRnxuWE0hrfkaZbNshsFDoJyPwxBsvqwtqgjhoC4gYQAvD_BwE">advanced care directive</a>. This is a document that states Doug’s preferences for future medical care, should he lose the capacity to make decisions. In this he stated:</p>
<blockquote>
<p>I do not want to be any worse than I am now; I do not want heroic treatment and I never want to go into a nursing home.</p>
</blockquote>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/end-of-life-care-no-we-dont-all-want-whatever-it-takes-to-prolong-life-41495">End-of-life care: no, we don't all want 'whatever it takes' to prolong life</a>
</strong>
</em>
</p>
<hr>
<p>After reading the advance care directive, the doctors explained they could not predict with certainty how things would turn out. They explained Doug would need to be kept on life support for some days, to give him “the best chance” and to “see how things go”.</p>
<p>As days passed it became clear Doug had suffered profound brain injury. He did start to breathe for himself but required hoist transfers and assistance with all activities of living, including turning, bathing and toileting. He remained non-verbal and was fed through a nasogastric tube. Occasionally he appeared to understand what was being said to him.</p>
<p>After six weeks, Doug was discharged from hospital to a high level nursing home.</p>
<p>When we reviewed what happened, the doctors who had looked after Doug agreed this outcome was, in all probability, exactly what Doug feared and wanted to avoid. They felt it was very sad.</p>
<figure class="align-center ">
<img alt="Doctors rushing patient through hospital corridor" src="https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/401800/original/file-20210520-17-39otkx.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">It can be very challenging for doctors to interpret and act on advance care directives, often because it’s almost impossible to predict exactly how treatment will affect a patient.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>Why didn’t Doug’s advance care directive work?</h2>
<p>Like so many, Doug had stated outcomes he didn’t want. He said “I do not want to be any worse than I am now. I would never want to go into a nursing home”. </p>
<p>However, as Doug’s doctors pointed out, they could not be certain when they first saw him exactly what the outcome would be (though it was very likely to be bad).</p>
<p>When asked if, when they first saw Doug, they had thought there was any real chance he would return to his previous level of function, they were unequivocal. None of them thought he would.</p>
<p>So how can we explain these conflicting answers? </p>
<p>The initial thought process the doctors applied focused on whether there was certainty of a particular outcome, but certainly is something that’s impossible to predict with absolute confidence. In contrast, risk is much easier to recognise. Had Doug asked doctors (and family) that he did not want to take the risk of an unacceptable outcome it would have made it much easier for them</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/do-you-want-to-be-resuscitated-this-is-what-you-should-think-about-before-deciding-105506">Do you want to be resuscitated? This is what you should think about before deciding</a>
</strong>
</em>
</p>
<hr>
<p>A second problem is that, like many patients, Doug stated things he “does not want”. There are lots of things in life we don’t want, but that we endure. The important question is not what we don’t want, but what we won’t accept and wouldn’t consent to.</p>
<p>Doug also wrote his plan a bit like an instruction. A lot of people do this thinking an instruction will be more convincing, but it doesn’t work like that.</p>
<p>Instructions written well in advance of the event, before all the circumstances are known, can be very unreliable. Most doctors can cite many examples of patients who have totally changed their mind when faced with a crisis.</p>
<h2>Here are some tips when writing yours</h2>
<p>Doctors and family members feel very uncomfortable faced with instructions from someone who is no longer able to explain their reasoning. This disquiet makes them question whether the instructions are well informed, adequately thought through, applicable to the situation, and firmly held. An emotional request generally inspires more confidence.</p>
<p>Doug might have had more success had he written something like:</p>
<blockquote>
<p>If my doctors think that it is unlikely that I will be able to return to my current level of health, or that it is likely that I will require full time nursing home care, then I would not want to consent to life-saving or life prolonging treatment.</p>
<p>I know it won’t be easy, but I ask my family and doctors to respect my wishes should they have to decide about treatment for me.</p>
</blockquote>
<p>Focusing on unacceptable risk and lack of consent, as well as adding an appeal for wishes to be respected, speaks to the heart and creates the sort of confidence doctors and families need to make difficult decisions.</p><img src="https://counter.theconversation.com/content/160983/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Charles Corke is Clinical Lead for the Barwon Region Advance Care Planning Service. He presents and writes on the topic of ACD including 'Letting Go - how to plan for a good death' published by Scribe, Melbourne. </span></em></p>Evidence suggests messages the patient thought to be crystal clear often appear unclear to doctors and family.Charles Corke, Associate Professor of Medicine, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1581312021-05-20T04:38:36Z2021-05-20T04:38:36ZComprehensive Indigenous health care in prisons requires federal funding of community-controlled services<figure><img src="https://images.theconversation.com/files/398225/original/file-20210502-21-ltaw9c.jpg?ixlib=rb-1.1.0&rect=71%2C369%2C9333%2C5947&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Prisons need to improve services for chronic conditions, mental health, and palliative care.</span> <span class="attribution"><a class="source" href="https://commons.wikimedia.org/">Andrew Mercer/ Wikimedia</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p><a href="https://apo.org.au/node/30017">The Royal Commission into Aboriginal Deaths in Custody Report</a> made over 200 directives about improving the health of people in prisons in its 339 recommendations in 1991. One of these recommendations included additional funding to provide better health services for Aboriginal and Torres Strait Islander people in prison. </p>
<p>Aboriginal and Torres Strait Islander people are over-represented in prisons. They are <a href="https://www.abs.gov.au/statistics/people/crime-and-justice/prisoners-australia/latest-release">15.6 times more likely to be incarcerated than non-Indigenous Australians</a>.</p>
<p>Yet, there are virtually <a href="https://www.racgp.org.au/running-a-practice/practice-standards/standards-for-other-health-care-settings/health-services-in-australian-prisons">no staff skilled in engaging with cultural protocols</a> in health services in prisons. And current policies and procedures do little to extend cultural care to families when the death of an Aboriginal or Torres Strait Islander person in prison has occurred. </p>
<p>The royal commission and the United Nations recommend people in prisons have access to health care equivalent to what is available in the community. However, the system is still strained, as the multiple deaths of Aboriginal people in custody in recent months, <a href="https://indigenousx.com.au/daily-reporting-wayne-fella-morrison-inquest/">inquests</a> revealing gaps in health care, and a <a href="https://www.parliament.nsw.gov.au/la/papers/Pages/tabled-paper-details.aspx?pk=79426">health report tabled to NSW Parliament</a> make clear. </p>
<p><a href="https://apo.org.au/node/311817">A critique of the royal commission’s implementation of recommendations</a> also highlights several areas for urgent attention.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-why-the-planned-ndis-reforms-discriminate-against-aboriginal-and-torres-strait-islander-people-160183">Here's why the planned NDIS reforms discriminate against Aboriginal and Torres Strait Islander people</a>
</strong>
</em>
</p>
<hr>
<h2>National frameworks silent on prisoner health</h2>
<p>The restructure of prisoner health care from state correctional services to state health departments in the last two decades in most Australian jurisdictions has been touted as one positive reform after the royal commission. </p>
<p>But it failed to recognise that state health departments make miniscule allocations to health care for Aboriginal and Torres Strait Islander people – the commonwealth largely has responsibility for this.</p>
<p>And because prisons fall under state and territory responsibility, prison health is also rarely mentioned in national frameworks. <a href="https://www.health.gov.au/resources/publications/national-strategic-framework-for-chronic-conditions">The National Strategic Framework for Chronic Conditions</a> makes no mention of prisons, despite people in prison disproportionately experiencing chronic conditions.</p>
<p>The <a href="https://www1.health.gov.au/internet/main/publishing.nsf/Content/natsih-plan">National Aboriginal and Torres Strait Islander Health Plan</a> acknowledges the over-representation of Aboriginal and Torres Strait Islander people in prison and their greater risk of suicide and drug overdose after being released, but it offers no leadership on state and territory action.</p>
<p>The recent inclusion of a justice target in the <a href="https://apo.org.au/node/311463">Closing the Gap framework</a> is likewise not focused on improving health services in prisons. It only aims to reduce Indigenous adult prison numbers by 15% and youth detention by 30%. </p>
<p>Currently, over 140 Aboriginal and Torres Strait Islander community-controlled health organisations operate across Australia, with membership to the <a href="https://www.naccho.org.au/">National Aboriginal Community Controlled Health Organisation</a>. </p>
<p>Data indicate Aboriginal and Torres Strait Islander people have low levels of access to mainstream government services compared to community-controlled health services. These health services are also allocated <a href="https://www.researchgate.net/publication/283728861_Indigenous_health_expenditure_deficits_obscured_in_Closing_the_Gap_reports">disproportionately less funding</a> than mainstream services.</p>
<p>And since the royal commission, there have been few funding schemes to support these health services to work in or with prisons. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-families-of-indigenous-people-who-die-in-custody-need-a-say-in-what-happens-next-159127">The families of Indigenous people who die in custody need a say in what happens next</a>
</strong>
</em>
</p>
<hr>
<h2>Indigenous health care barriers in prisons</h2>
<p>There are other barriers to Aboriginal and Torres Strait Islander people receiving adequate health care in prison settings.</p>
<p>Prison health organisations <a href="https://www.researchgate.net/publication/349283966_Strengthening_Indigenous_Australian_Perspectives_in_Allied_Health_Education_A_Critical_Reflection">rarely meet Aboriginal and Torres Strait Islander staff targets</a>, or retain them in leadership roles. Members of the prison workforce have often acknowledged they “need cultural competence training”. </p>
<p>It is little wonder Aboriginal and Torres Strait Islander people <a href="https://vimeo.com/431642089">report frequent experiences of racism in mainstream services</a>.</p>
<p>Aboriginal and Torres Strait Islander health services also rely on fee-for-service income via payments from Medicare. But prisoners do not have access to Medicare. </p>
<p>As Professor Peter O’Mara, the chair of the Royal Australasian College of General Practitioners Aboriginal and Torres Strait Islander Health Council, <a href="https://www1.racgp.org.au/newsgp/clinical/expert-backs-racgp-calls-for-access-to-specific-me">explains</a>, </p>
<blockquote>
<p>If you’re a prisoner, you lose your right to Medicare. That means if an Aboriginal health service wants to provide support, they can’t bill Medicare.</p>
</blockquote>
<p>This essentially locks Aboriginal and Torres Strait Islander community-controlled health services out of delivering health care in prisons. A change has repeatedly been sought, but has not occurred.</p>
<p>In addition, prisons face new challenges due to Australia’s ageing prisoner population. Research highlights a <a href="https://journals.sagepub.com/doi/10.1177/1039856219891525">long-term shortage of mental health clinicians in prisons</a>. Palliative care specialists and nurses with palliative care training are <a href="https://www.caresearch.com.au/caresearch/TabId/3781/ArtMID/6000/ArticleID/1686/National-Palliative-Care-in-Prison-PiP-Project.aspx">almost entirely missing</a>.</p>
<h2>Aboriginal community-controlled organisations in prisons</h2>
<p>Reducing the over-representation of Aboriginal and Torres Strait Islander people in prisons is one part of addressing health inequity. </p>
<p>Another is improving people’s overall health and wellbeing in the community, which could potentially reduce their contact with the criminal justice system. Recommendation 188 of the royal commission said the self-determination of Aboriginal and Torres Strait Islander people is key to this.</p>
<p>The royal commission also outlined how Aboriginal health services could deliver self-determined improvements in prison health services. </p>
<p>It recommended governments invite Aboriginal health services to deliver care in areas where they already operate, or where Indigenous people are particularly over-represented in the prison population. That hasn’t happened.</p>
<p>The royal commission also recommended Aboriginal health services be included in health planning decisions, including:</p>
<ul>
<li><p>recommendations 127 and 252: examining delivery of medical services to people in police custody and hospitals</p></li>
<li><p>recommendation 152: assisting with reviews and guiding prison health standards, including on cultural matters</p></li>
<li><p>recommendations 154 and 133: training prison health staff and police</p></li>
<li><p>recommendation 265: integrating Aboriginal health care with mental health and psychiatry</p></li>
<li><p>recommendation 283: operating early intervention programs to reduce the numbers of Indigenous people incarcerated</p></li>
</ul>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A person applying pressure to their arm where blood was taken." src="https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=335&fit=crop&dpr=1 600w, https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=335&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=335&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=421&fit=crop&dpr=1 754w, https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=421&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/400888/original/file-20210516-23-o8n0q9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=421&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The National Strategic Framework for Chronic Conditions makes no mention of prisons, despite people in prison disproportionately experiencing chronic conditions.</span>
<span class="attribution"><a class="source" href="http://www.unsplash.com/">nguy n hi p ufwC cmbaaI unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>Prisons need culturally safe care</h2>
<p>I’ve come to know an Aboriginal family whose loved one was diagnosed with a terminal illness in prison. The process for his release was under way, but there were gaps in communications and decisions between prison officials and his family. </p>
<p>He was so immobile and frail it was hard to believe he was still ultimately seen as a threat to community safety. He died alone in prison, despite his family having community-based end-of-life care arrangements approved on the traditional Country of his ancestors, according to their protocols. </p>
<p>His case notes were minimal, and there was no evidence of cultural care. The autopsy report still causes major confusion and trauma for his family, and they have had no support. </p>
<p>The family has lost all trust for governments, who they believe <a href="https://www.aihw.gov.au/reports/indigenous-australians/cultural-safety-health-care-framework/contents/background-material">betrayed their own policies</a> about culturally safe care.</p>
<p>This case illustrates why Aboriginal people with health issues should be diverted from police custody into health services where possible. This is vital because so many deaths in custody have been as a result of preventable health issues. </p>
<p>A nationally coordinated scheme is also required that funds prisons to work with Aboriginal and Torres Strait Islander community-controlled health services. These services could also provide relevant data in health planning for prisons. </p>
<p>The federal government must lead change; it is not interference in state and territory criminal justice systems when the focus is on Aboriginal and Torres Strait Islander people’s health and wellbeing.</p><img src="https://counter.theconversation.com/content/158131/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Megan Williams receives funding from the Medical Research Futures Fund, the National Health and Medical Research Council, the NSW Aboriginal Land Council, Cancer Australia and Commonwealth Health. She is affiliated with Croakey.org and Deadly Connections. </span></em></p>Despite the disproportionate numbers of Aboriginal people in prisons, there are near to no cultural protocols in place, and chronic illness is often not addressed.Megan Williams, Associate Professor, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1596532021-04-27T09:18:57Z2021-04-27T09:18:57ZEnd-of-life care: people should have the option of general anaesthesia as they die<figure><img src="https://images.theconversation.com/files/397119/original/file-20210426-17-suabjh.jpg?ixlib=rb-1.1.0&rect=0%2C19%2C6419%2C4295&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/man-holding-hand-giving-support-comfort-1576363936">KieferPix/Shutterstock</a></span></figcaption></figure><p>Dying patients who are in pain are <a href="https://pubmed.ncbi.nlm.nih.gov/12732169/">usually given an analgesic</a>, such as morphine, to ease their final hours and days. And if an analgesic isn’t enough, they <a href="https://pubmed.ncbi.nlm.nih.gov/18657380/">can be given a sedative</a> – something to make them more relaxed and less distressed at the end of life. We have recently <a href="https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/10.1111/anae.15459">written about a third approach</a>: using a general anaesthetic to ensure that the dying patient is completely unconscious. This has been described previously, but largely overlooked.</p>
<p>There are two situations when a general anaesthetic might be used in dying patients. The first is when other drugs have not worked and the patient is still distressed or in pain. The second is when a patient has only a short time to live and expresses a clear wish to be unconscious. Some dying patients just want to sleep.</p>
<p>But what type of anaesthesia are we talking about? If you need surgery or a medical procedure, there are three options. First, being fully awake, but having local anaesthesia to block the pain. Second, you could be partly sedated: you would be less stressed or worried about it, but you might remember some of the procedure afterwards. Finally, you could have a general anaesthetic and be out cold, with no memory of the procedure afterwards.</p>
<p>Any of these might be appropriate, depending on the procedure and depending on the person. But the option with the highest chance that you won’t feel anything is, of course, general anaesthesia.</p>
<p>These same three options could be offered to a dying patient. Some people might want to be as awake as possible. (Like the poet Dylan Thomas, they might not wish to “<a href="https://poets.org/poem/do-not-go-gentle-good-night">go gentle into that good night</a>”.) Some might want to be sedated, if necessary. Others might want to be completely asleep.</p>
<p>The choice of general anaesthesia at the end of life is potentially popular. Last year, we <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0247193">surveyed more than 500 people</a> in the UK about end-of-life options. Nearly 90% said they would like the option of a general anaesthetic if they were dying. </p>
<p>You might wonder, is this not just euthanasia by another name? Giving someone medicines to ensure that they are unconscious as they die naturally is different from giving someone medicine to end their life. General anaesthesia is legal, whereas in many countries, including the UK, <a href="https://www.nhs.uk/conditions/euthanasia-and-assisted-suicide/">euthanasia is illegal</a>.
This means that the option of anaesthesia could be available now for dying patients in the UK without changing the law. France has recently recognised <a href="https://jme.bmj.com/content/44/3/204">the right for dying patients to be unconscious</a>.</p>
<h2>Wouldn’t it be too risky?</h2>
<p>There are side-effects with all medicines, but <a href="https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/10.1111/anae.15459">recent advances</a> mean that it is possible to give anaesthetic medicines to patients close to death without affecting their breathing. The medicine is given slowly, and the patient made unconscious gradually over 15 to 20 minutes. The medicine can be slowed or stopped at any point.</p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/16376744/">Previous studies</a> that have used anaesthesia at the end of life, have continued the medicines for one to 14 days until the patient died naturally.</p>
<p>This will not be for everyone. It may not be possible for those who are dying in their own home. And some people will not want it. But we have the means to offer dying patients a gentle alternative end to their days. We believe that there is a strong ethical case to make the option of general anaesthesia at the end of life more widely available.</p><img src="https://counter.theconversation.com/content/159653/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dominic Wilkinson receives funding from the Wellcome Trust and the Arts and Humanities Research Council (AHRC) as part of the UK Research and Innovation rapid response to Covid-19: AH/V013947/1. The funders had no role in the preparation of this manuscript. </span></em></p><p class="fine-print"><em><span>Julian Savulescu receives funding from the Wellcome Trust, the Uehiro Foundation on Ethics and Education and the Arts and Humanities Research Council (AHRC) as part of the UK Research and Innovation rapid response to Covid-19: AH/V013947/1. The funders had no role in the preparation of this manuscript. </span></em></p>The case for letting people go gentle into that good night.Dominic Wilkinson, Consultant Neonatologist and Professor of Ethics, University of OxfordJulian Savulescu, Visiting Professor in Biomedical Ethics, Murdoch Children's Research Institute; Distinguished Visiting Professor in Law, University of Melbourne; Uehiro Chair in Practical Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1576552021-03-29T15:05:08Z2021-03-29T15:05:08ZDeath-friendly communities ease fear of aging and dying<figure><img src="https://images.theconversation.com/files/391839/original/file-20210325-23-193ezbo.jpg?ixlib=rb-1.1.0&rect=633%2C0%2C4981%2C3249&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Improving death-friendliness offers further opportunity to improve social inclusion. A death-friendly approach could lay the groundwork for people to stop fearing getting old or alienating those who have.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Death looms larger than usual during a global pandemic. An <a href="https://www.who.int/ageing/age-friendly-world/en/">age-friendly community</a> works to make sure people are connected, healthy and active throughout their lives, but it doesn’t pay as much attention to the end of life.</p>
<p>What might a death-friendly community ensure?</p>
<p>In today’s context, the suggestion to become friendly with death may sound strange. But as scholars doing research <a href="https://www.canada.ca/en/public-health/services/health-promotion/aging-seniors/friendly-communities.html">on age-friendly communities</a>, we wonder what it would mean for a community to be friendly towards death, dying, grief and bereavement. </p>
<p>There’s a lot we can learn from the palliative care movement: it considers death as <a href="https://doi.org/10.2190%2FYT9D-12Y2-54LY-TCMN">meaningful and dying as a stage of life to be valued, supported and lived</a>. Welcoming mortality might actually help us live better lives and support communities — rather than relying on medical systems — to care for people at the end of their lives.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/DYbosNFtAmk?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">In the context of age-friendly communities where the focus is on active living, this video invites viewers to think about the role that death plays in their lives and their communities.</span></figcaption>
</figure>
<h2>The medicalization of death</h2>
<p>Until the 1950s, most Canadians died in their homes. More recently, death has moved to <a href="https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310071501">hospitals, hospices, long-term care homes or other health-care institutions</a>. </p>
<p>The societal implications of this shift are profound: fewer people witness death. The dying process has become less familiar and more frightening because <a href="https://doi.org/10.1080/0742-969X.1993.11882761">we don’t get a chance to be part of it</a>, until we face our own.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/coronavirus-shows-how-ageism-is-harmful-to-health-of-older-adults-138249">Coronavirus shows how ageism is harmful to health of older adults</a>
</strong>
</em>
</p>
<hr>
<h2>Fear of death, of aging and social inclusion</h2>
<p>In western cultures, death is often associated with aging, and vice versa. And a fear of death contributes to a fear of aging. One study found that <a href="https://doi.org/10.1080/02701960.2016.1247063">psychology students with death-anxiety were less willing to work with older adults</a> in their practice. Another study found that <a href="https://www.sciencedirect.com/science/article/abs/pii/S0191886915003566">worries about death and aging led to ageism</a>. In other words, <a href="https://www.tandfonline.com/doi/abs/10.1080/03601277.2018.1537163">younger adults push older adults away because they don’t want to think about death</a>. </p>
<p>A clear example of ageism being borne out of a fear of death can be seen through COVID-19; the disease gained the nickname “<a href="https://pubmed.ncbi.nlm.nih.gov/32719851/">boomer remover</a>” because it seemed to link aging with death.</p>
<figure class="align-center ">
<img alt="Grandparents with masks seen pressing hands against window looking at granddaughter" src="https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=365&fit=crop&dpr=1 600w, https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=365&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=365&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=459&fit=crop&dpr=1 754w, https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=459&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/391798/original/file-20210325-21-eg9vvv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=459&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">COVID-19 gained the nickname ‘boomer remover’ because it seemed to link aging with death.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The World Health Organization’s (WHO) <a href="https://www.who.int/ageing/publications/Global_age_friendly_cities_Guide_English.pdf">framework for age-friendly communities</a> includes “respect and social inclusion” as one of its eight focuses. The movement fights ageism via educational efforts and intergenerational activities. </p>
<p>Improving death-friendliness offers further opportunities to improve social inclusion. A death-friendly approach could lay the groundwork for people to stop fearing getting old or alienating those who have. Greater openness about mortality also creates more space for grief. </p>
<p>During COVID-19, it’s become clearer than ever that grief is both personal and collective. It’s especially relevant to older adults who outlive many of their peers and experience multiple losses.</p>
<h2>The compassionate communities approach</h2>
<p>The <a href="https://www.hpco.ca/compassionate-communities">compassionate communities approach</a> came from the fields of palliative care and critical public health. It focuses on community development related to <a href="https://academic.oup.com/qjmed/article/106/12/1071/1633982">end-of-life planning, bereavement support and improved understandings</a> about aging, dying, death, loss and care. </p>
<p>The age-friendly and compassionate communities initiatives share several goals, but they don’t yet share practices. We think they should.</p>
<p>Originating with the <a href="https://www.who.int/healthpromotion/healthy-cities/en/">WHO’s concept of healthy cities</a>, the compassionate communities charter responds to criticisms that public health has fallen short in responding to death and loss. <a href="https://www.compassionate-communitiesuk.co.uk/the-compassionate-city-charter">The charter</a> makes recommendations for addressing death and grief in schools, workplaces, trade unions, places of worship, hospices and nursing homes, museums, art galleries and municipal governments. It also accounts for diverse experiences of death and dying — for instance, for those who are unhoused, imprisoned, refugees or experiencing other forms of social marginalization. </p>
<p>The charter calls not only for efforts to raise awareness and improve planning, but also for accountability related to death and grief. It highlights the need to review and test a city’s initiatives (for instance, review of local policy and planning, annual emergency services roundtable, public forums, art exhibits and more). Much like the age-friendly framework, the compassionate communities charter uses a <a href="https://pubmed.ncbi.nlm.nih.gov/29764178/">best practice framework, adaptable to any city</a>.</p>
<figure class="align-center ">
<img alt="Multigenerational family, walking, holding hands on the beach." src="https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/391821/original/file-20210325-17-1lzmw6u.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Age-friendly initiatives could converge with the work of compassionate communities in their efforts to make a community a good place to live, age and, ultimately, die.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>There’s a lot to like about the compassionate communities approach.</p>
<p>First, it comes from the community, rather than from medicine. It brings death back from the hospitals and into the public eye. It acknowledges that when one person dies, it affects a community. And it offers space and outlets for bereavement.</p>
<p>Second, the compassionate communities approach makes death a normal part of life whether by connecting school children with hospices, integrating end-of-life discussions into workplaces, providing bereavement supports or creating opportunities for creative expression about grief and mortality. This can demystify the dying process and lead to more productive conversations about death and grief.</p>
<p>Third, this approach acknowledges diverse settings and cultural contexts for responding to death. It doesn’t tell us what death rituals or grief practices should be. Instead, it holds space for a variety of approaches and experiences.</p>
<h2>Age-friendly compassionate communities</h2>
<p>We propose that age-friendly initiatives could converge with the work of compassionate communities in their efforts to make a community a good place to to live, age and, ultimately, die. We envision death-friendly communities including some, or all, of the elements mentioned above. One of the benefits of death-friendly communities is that there isn’t a one-size-fits-all model; they can vary across jurisdictions, allowing each community to imagine and create their own approach to death-friendliness.</p>
<p>Those who are working to build age-friendly communities should reflect on how people prepare for death in their cities: Where do people go to die? Where and how do people grieve? To what extent, and in which ways, does a community prepare for death and bereavement?</p>
<p>If age-friendly initiatives contend with mortality, anticipate diverse end-of-life needs, and seek to understand how communities can indeed become more death-friendly, they could make even more of a difference.</p>
<p>That’s an idea worth exploring.</p><img src="https://counter.theconversation.com/content/157655/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julia Brassolotto receives funding from the Social Sciences and Humanities Research Council and Alberta Innovates. </span></em></p><p class="fine-print"><em><span>Albert Banerjee receives funding from the New Brunswick Health Research Foundation and The Social Sciences and Humanities Research Council</span></em></p><p class="fine-print"><em><span>Sally Chivers receives funding from the Social Sciences and Humanities Research Council.</span></em></p>Death-friendly communities that welcome mortality might help us live better lives and provide better care for people at the end of their lives.Julia Brassolotto, Assistant Professor, Public Health and Alberta Innovates Research Chair, University of LethbridgeAlbert Banerjee, NBHRF Research Chair in Community Health and Aging, St. Thomas University (Canada)Sally Chivers, Professor of English and Gender & Women's Studies, Trent UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1561052021-03-03T05:58:23Z2021-03-03T05:58:23ZWe all hope for a ‘good death’. But many aged-care residents are denied proper end-of-life care<figure><img src="https://images.theconversation.com/files/387425/original/file-20210303-23-sc4zky.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4060%2C2502&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Death is inevitable, and in a civilised society everyone deserves a good one. It would therefore be logical to expect aged-care homes would provide superior end-of-life care. But sadly, palliative care options are often better for those living outside residential aged care than those in it. </p>
<p>More than a <a href="https://www.gen-agedcaredata.gov.au/Topics/People-using-aged-care">quarter of a million</a> older Australians live in residential aged care, but few choose to be there, few consider it their “home”, and most will die there after living there for <a href="https://www.gen-agedcaredata.gov.au/Topics/People-leaving-aged-care">an average 2.6 years</a>. These are vulnerable older people who have been placed in residential aged care when they can no longer be cared for at home.</p>
<p>The royal commission has made a forceful and sustained criticism of the quality of aged care. Its <a href="https://agedcare.royalcommission.gov.au/publications/final-report-volume-1">final report</a>, released this week, and the <a href="https://agedcare.royalcommission.gov.au/sites/default/files/2020-02/interim-report-volume-1.pdf">interim report last year</a> variously described the sector as “cruel”, “uncaring”, “harmful”, “woefully inadequate” and in need of major reform. </p>
<p>Quality end-of-life care, including access to specialist palliative care, is a significant part of the inadequacy highlighted by the report’s damning findings. This ranked alongside dementia, challenging behaviours and mental health as the most crucial issues facing the sector. </p>
<h2>Longstanding problem</h2>
<p>In truth, we have already known about the palliative care problem for years. In 2017 the <a href="https://www.pc.gov.au/inquiries/completed/human-services/reforms/report/human-services-reforms.pdf">Productivity Commission</a> reported that end-of-life care in residential aged care needs to be better resourced and delivered by skilled staff, to match the quality of care available to other Australians. </p>
<p>This inequality and evident discrimination against aged-care residents is all the more disappointing when we consider these residents are among those Australians most likely to find themselves in need of quality end-of-life care.</p>
<p>The royal commission’s final report acknowledges these inadequacies and addresses them in 12 of its 148 recommendations. Among them are recommendations to:</p>
<ul>
<li><p>enshrine the right of older people to access equitable palliative and end-of-life care</p></li>
<li><p>include palliative care as one of a range of integrated supports available to residents</p></li>
<li><p>introduce multidiscpliniary outreach services including palliative care from local hospitals</p></li>
<li><p>require specific training for all direct care staff in palliative and end-of-life care skills.</p></li>
</ul>
<h2>What is good palliative care?</h2>
<p><a href="https://palliativecare.org.au/what-is-palliative-care">Palliative care</a> is provided to someone with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die. Its primary goal is to optimise the quality of life for that person and their family. </p>
<p>End-of-life care is provided by palliative care services in the final few weeks of life, in which a patient with a life-limiting illness is rapidly approaching death. This also extends to bereavement care for family and loved ones. </p>
<p>Unlike in other sectors of Australian society, where palliative care services are growing in line with overall population ageing, palliative care services in residential aged care have been <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajag.12480">declining</a>. </p>
<p>Funding restrictions in Australian aged-care homes means palliative care is typically only recommended to residents during the <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajag.12480">final few weeks or even days</a> of their life.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-palliative-care-a-patients-journey-through-the-system-82246">What is palliative care? A patient's journey through the system</a>
</strong>
</em>
</p>
<hr>
<p>Some <a href="https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf">70% of Australians</a> say they would prefer to die at home, surrounded by loved ones, with symptoms managed and comfort the only goal. So if residential aged care is truly a resident’s home, then extensive palliative and end-of-life care should be available, and not limited just to the very end.</p>
<p>Fortunately, the royal commission has heard the clarion call for attention to ensuring older Australians have as good a death as possible, as shown by the fact that a full dozen of the recommendations reflect the need for quality end-of-life care. </p>
<p>Moreover, the very first recommendation — which calls for a new Aged Care Act — will hopefully spur the drafting of legislation that endorses high-quality palliative care rather than maintaining the taboo around explicitly mentioning death.</p>
<figure class="align-center ">
<img alt="Elderly man holding sick wife's hand" src="https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/387429/original/file-20210303-27-11tu077.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Around 70% of Australians would prefer to die at home in the company of loved ones.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>Let’s talk about death</h2>
<p>Of course, without a clear understanding of how close death is, and open conversation, planning for the final months of life cannot even begin. So providing good-quality care also means we need to get better at calculating prognosis and learn better ways to convey this information in a way that leads to being able to make a plan for comfort and support, both for the individual and their loved ones.</p>
<p>Advanced care planning makes a significant difference in the quality of end-of-life care by understanding and supporting individual choices through open conversation. This gives the individual the care they want, and lessens the emotional toll on family. It is simply the case that <a href="https://onlinelibrary-wiley-com.ezproxy.ecu.edu.au/doi/epdf/10.5694/mja16.00843">failing to plan is planning to fail</a>.</p>
<p>We need to break down the discomfort around telling people they’re dying. The unpredictability of disease progression, particularly in conditions that involve frailty or dementia, makes it hard for health professionals to determine <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-3148.2010.00592.x">when exactly palliative care will be needed</a> and how to talk about it with different cultural groups.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/passed-away-kicked-the-bucket-pushing-up-daisies-the-many-ways-we-dont-talk-about-death-77085">Passed away, kicked the bucket, pushing up daisies – the many ways we don't talk about death</a>
</strong>
</em>
</p>
<hr>
<p>These conversations need to be held <a href="https://www.health.gov.au/sites/default/files/documents/2019/10/department-of-health-annual-report-2018-19_0.pdf">through the aged-care sector</a> to overcome policy and regulation issues, funding shortfalls and workforce knowledge and expertise.</p>
<p>We need a broader vision for how we care for vulnerable Australians coming to the end of a long life. It is not just an issue for health professionals and residential care providers, but for the whole of society. Hopefully the royal commission’s recommendations will breathe life into end-of-life care into aged care in Australia.</p><img src="https://counter.theconversation.com/content/156105/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Davina Porock does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Many Australians come to the end of their life while living in aged care. But damningly, the aged care royal commission found many residents have worse palliative care options than those living elsewhere.Davina Porock, Professor of Nursing, Director of Centre for Research in Aged Care, Edith Cowan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1535402021-02-08T16:32:44Z2021-02-08T16:32:44ZA dangerous path: Why expanding access to medical assistance in dying keeps us up at night<figure><img src="https://images.theconversation.com/files/382707/original/file-20210205-14-1nfo1ub.jpg?ixlib=rb-1.1.0&rect=105%2C6%2C4016%2C2725&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Minister of Justice David Lametti gives a thumbs up as he rises to vote in favour of a motion on Bill C-7, medical assistance in dying, in the House of Commons on Dec. 10, 2020. </span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Justin Tang</span></span></figcaption></figure><p>When a government starts making laws based on the premise that some lives are not worth living, it is setting out on an extremely dangerous path. </p>
<p>That is the path that <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7, the proposed law to expand access to Medical Assistance in Dying</a> (MAID) to people whose death is not imminent, sets Canada on.</p>
<p>This is what keeps us — two MDs and a PhD on wheels — up at night. We each have a different perspective on the dangers of expanding MAID eligibility to people who are not dying. </p>
<p>Bill C-7 was <a href="https://www.cbc.ca/news/politics/maid-commons-senate-c7-1.5836319">passed in the House of Commons in December</a>, and is proceeding to the senate in February.</p>
<h2>Health ethics: Careening down a slippery slope</h2>
<p><em>Heidi Janz is an ethics professor at the University of Alberta, and chair of the Council of Canadians with Disabilities’ Ending-of-Life Ethics Committee</em></p>
<p>I describe myself as a long-hauler in the struggle against the legalization of assisted suicide and euthanasia for people with disabilities.</p>
<p>What first activated me was the <a href="https://www.researchgate.net/publication/317816777_DISABLING_IMAGES_AND_THE_DANGERS_OF_PUBLIC_PERCEPTION_A_COMMENTARY_ON_THE_MEDIA%27S_COVERAGE_OF_THE_LATIMER_CASE">unqualified media and public support that Robert Latimer received in 1993 when he was charged with killing his daughter, Tracy, who had cerebral palsy</a>. I remember watching a news magazine show on the topic <em>When is it right to kill someone with severe disabilities?</em> and realizing that most Canadians would consider my life not worth living.</p>
<p>The Latimer case revealed the prevalence of <a href="https://doi.org/10.1057/dev.2008.17">ableism</a> in Canada and marked the start of the slippery slope down which our country is careening. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/liks62ZcMK0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Dr. Heidi Janz’s testimony before the House of Commons Justice Committee studying Bill C-7.</span></figcaption>
</figure>
<p>As a professor of health ethics who has disabilities, I worry about the effect that the expansion of MAID under Bill C-7 will have on kids and youth with disabilities. <a href="http://dx.doi.org/10.1108/S1479-363620170000010007">I attended a school for kids with disabilities</a>. Roughly half the students had muscular dystrophy, and a life expectancy of 14-18 years. Growing up, we all knew that some of us would live longer than others. But we also knew that all of us would live with the best quality of life possible, until we died.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/think-disability-is-a-tragedy-we-pity-you-82047">Think disability is a tragedy? We pity you</a>
</strong>
</em>
</p>
<hr>
<p>What keeps me up at night is knowing that this is not the message the current generation of kids with disabilities is getting. Instead, they’re hearing about <a href="https://globalnews.ca/news/3826108/assisted-death-canada-children/">parents requesting MAID for their disabled kids</a>.</p>
<p>I hope that Canadians with disabilities can find safe doctors who will fight for our lives, instead of encouraging us to end our lives.</p>
<h2>Palliative care: Healing vs. hastening death</h2>
<p><em>Leonie Herx is past president of the Canadian Society of Palliative Care Physicians and chair of the Division of Palliative Medicine at Queen’s University</em></p>
<p>As a palliative care physician, I was drawn into the “assisted dying” debate when the <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/scc-csc.html">Supreme Court of Canada</a> struck down the <a href="https://www.cbc.ca/news/politics/supreme-court-says-yes-to-doctor-assisted-suicide-in-specific-cases-1.2947487">prohibition against assisted suicide in the 2015 Carter decision</a>.</p>
<p>After the Carter ruling, there was a lot of <a href="https://doi.org/10.1093/annonc/mdp048">erroneous talk about how palliative care already hastens death</a>, and an expectation that palliative physicians would therefore take on this life-ending procedure as part of our practice. Our speciality has spent a lot of time helping people understand that hastening death or intentionally ending life violates the <a href="https://www.cspcp.ca/wp-content/uploads/2019/11/CHPCA-and-CSPCP-Statement-on-HPC-and-MAiD-Final.pdf">core principles and</a> internationally recognized <a href="https://www.cspcp.ca/wp-content/uploads/2019/11/CHPCA-and-CSPCP-Statement-on-HPC-and-MAiD-Final.pdf">definition of palliative care</a>.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/jfNBIPOV888?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Dr. Leonie Herx’s testimony before the House of Commons Justice Committee studying Bill C-7.</span></figcaption>
</figure>
<p>One of my concerns is that physicians would be expected to raise MAID as if it were like any other medical option, when it is not. For a doctor to say, “Well, you could choose this drug, or these supports to help you, or you could choose death,” would be suggesting to someone that their life isn’t worth living.</p>
<p>As a physician, my job is to restore hope and promote healing. It’s not to suggest death as the answer to suffering and to facilitate ending someone’s life.</p>
<p>Bill C-7 is based on a very narrow view of autonomy and <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying-annual-report-2019.html#a3.2">people who want to have control over their own death via an assisted suicide make up a very small percentage of the population, around two per cent</a>. Legislative protections need to be put in place to prevent people from being pressured into MAID and doctors from being forced to facilitate it.</p>
<h2>Family medicine: Support for the vulnerable</h2>
<p><em>Ramona Coelho is a family physician in London, Ont.</em></p>
<p>As a family physician who cares for people with chronic illnesses and disabilities, I was drawn into the debate around assisted dying out of concern for my patients, who often suffer from <a href="https://www.macleans.ca/opinion/dying-for-the-right-to-live">poverty and inadequate resources</a>. So they might feel pressured to choose death <a href="https://www.zonmw.nl/nl/onderzoek-resultaten/ouderen/programmas/project-detail/vooronderzoek-voltooid-leven/het-perspectief-project-perspectieven-op-de-doodswens-bij-voltooid-leven-de-mens-en-de-cijfers/">because of inadequate supports</a> to live or because a doctor perceives that they might be <a href="https://nationalpost.com/news/canada/denied-assisted-life-by-hospital-ontario-man-is-offered-death-instead-lawsuit">better off dead</a>.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/UFdBFmgOn2Y?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Dr. Ramona Coelho’s testimony before the Senate Committee Pre-Study on Bill C-7.</span></figcaption>
</figure>
<p>By expanding MAID, I believe we are ignoring the common good. <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/prevention-risks/about-non-medical-masks-face-coverings.html">We are wearing masks right now to protect our vulnerable due to COVID-19</a>. But we must similarly consider how expanding MAID will affect vulnerable persons.</p>
<p>One of my patients told me she is planning to access MAID because she lives in poverty and isolation, and doesn’t have home care supports for her disability. Sadly, <a href="https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/">many other people with disabilities share her desperation</a>.</p>
<p>No one belongs on the margins of society. I chose to practise medicine because built into this work is the opportunity to help and heal. What a privilege! If many of us can keep our focus on <a href="https://inclusioncanada.ca/wp-content/uploads/2018/02/CACL-and-PFC-Brief-Accessibility-and-Poverty-Reduction-Final-June-2017.pdf">reducing social inequality</a>, I can remain hopeful.</p>
<h2>Losing sleep</h2>
<p>We each have different reasons to lose sleep over Bill C-7 as it inches its way closer to becoming law. As the bill proceeds to the Senate, Canadians need to consider where this path leads, and understand how it will affect vulnerable people. </p>
<p>Rather than expanding access to MAID, the priority should be to ensure access to the care and supports necessary to live and, when the time comes, to have a peaceful natural death with high quality palliative care.</p>
<p><em>This article was also co-authored by Ramona Coelho, a family physician in London, Ont.</em></p><img src="https://counter.theconversation.com/content/153540/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Expanding access to medical assistance in dying (MAID) to those not terminally ill puts vulnerable people at risk of feeling pressured into MAID, and doctors at risk of being forced to facilitate it.Heidi L. Janz, Adjunct Professor of Disability Ethics, John Dossetor Health Ethics Centre, University of AlbertaLeonie Herx, Division Chair & Associate Professor of Palliative Medicine, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1384132020-05-28T16:56:27Z2020-05-28T16:56:27ZCoronavirus public health restrictions shouldn’t mean dying alone<figure><img src="https://images.theconversation.com/files/338271/original/file-20200528-51467-1emor6d.jpg?ixlib=rb-1.1.0&rect=319%2C248%2C4421%2C2580&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Canadian Hospice Palliative Care Association is calling on health authorities to "implement a more compassionate approach to end-of-life visitations ... during the COVID-19 pandemic." </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>One of the most heartbreaking aspects of the COVID-19 physical distancing has been accounts of people <a href="https://www.cbc.ca/news/canada/calgary/covid-19-dying-alone-1.5549739">dying alone</a> <a href="https://www.cbc.ca/news/canada/british-columbia/disabled-community-policy-change-covid19-died-alone-1.5574147">in hospital</a> or in <a href="https://www.cbc.ca/news/canada/toronto/family-of-ontario-woman-who-died-of-covid-19-launches-class-action-lawsuit-against-long-term-care-operator-1.5568090">long-term care facilities</a>.</p>
<p>These incidents have not only devastated family members but also disturbed many people with the sense that <a href="https://www.thestar.com/opinion/contributors/2020/04/22/theres-no-greater-misfortune-than-canadian-nursing-home-residents-dying-alone.html">something has gone wrong with how our society cares for aging or vulnerable people</a> and responds to illness and and dying. </p>
<p>On May 19, the Canadian Hospice Palliative Care Association (CHPCA) launched a campaign called “Saying Goodbye” that calls on health authorities to “<a href="https://www.chpca.ca/campaigns/saying-goodbye/">implement a more compassionate approach to end-of-life visitations across Canada during the COVID-19 pandemic</a>.” The CHPCA says that “while certain provinces have taken steps to relax visitation protocols for end-of-life situations, many hospitals and long-term care homes still do not allow family access, even with personal protective equipment (PPE).”</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1263830973134839810"}"></div></p>
<h2>Dying in long-term care</h2>
<p>In my province of British Columbia, the B.C. Centre for Disease Control guidelines suggest that there is indeed room for “essential visits” in long-term care facilities. </p>
<p>These are described as including but not being limited to “<a href="http://www.bccdc.ca/health-professionals/clinical-resources/covid-19-care/clinical-care/long-term-care-facilities-assisted-living">visits for compassionate care (end of life and critical illness), visits considered paramount to resident care and well-being, such as assistance with feeding or mobility</a> ….” </p>
<p>But there is a great deal of <a href="https://www.theglobeandmail.com/canada/british-columbia/article-significant-changes-made-to-visiting-protocols-for-bcs-long-term/">room for interpretation of what constitutes an essential visit</a>.</p>
<p>One might argue that those in long-term care are not imminently dying and so perhaps the right of family to be present does not outweigh the risks of COVID-19. </p>
<p>Firstly, however, families with people in long-term care will tell you that their visits are essential. The COVID-19 crisis has revealed many of the fault lines in our long-term care system. </p>
<p>Those in residential or long-term care can be at risk and it is often the vigilance of family members that ensure that these vulnerable persons receive adequate care. A family member who <a href="https://qz.com/1845402/banning-family-at-senior-care-homes-has-removed-critical-care/">visits regularly is a powerful surveillance system</a>.</p>
<h2>Palliative care</h2>
<p>Secondly, what health-care practitioners call an “end-of-life situation” exists, in fact, on a continuum. </p>
<p>The Office of the Seniors Advocate British Columbia notes that the average <a href="https://www.seniorsadvocatebc.ca/app/uploads/sites/4/2018/01/QuickFacts2018-Summary.pdf">length of stay for residents in long-term care is 871 days — less than two-and-a-half years</a>. That means that if following best practices, all <a href="http://www.hpcintegration.ca/media/23816/TWF-palliative-approach-report-English-final.pdf">people residing in long-term care should receive a palliative approach to care</a>. </p>
<p>The World Health Organization defines hospice and palliative care as “… <a href="https://www.who.int/cancer/palliative/definition/en/">an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness</a>.” It seeks to prevent and relieve “suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”</p>
<p>Of note in this definition highlighting “patients and their families” is that <a href="https://oxfordmedicine.com/view/10.1093/med/9780199674282.001.0001/med-9780199674282">palliative care seeks to address people holistically as individuals in relationships</a>. </p>
<p>Although most Canadians <a href="https://www.cihi.ca/en/more-canadians-could-benefit-from-palliative-care">wish to die at home</a>, circumstances often lead to an institutional death. Long-term care has <a href="https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/For+Professionals/For+Professionals/The+Exchange/Current/Developing+Palliative+Care+Programs+in+Long+Term+Care+Homes.aspx">increasingly become a site for palliative care</a>. Wishes for care are obtained upon admission and the supportive principles of palliative care are applied to ensure that people in care enjoy the highest quality of life possible for the limited time they have left.</p>
<p>But the fact that many people still need institutional care at end of life has proven exceedingly challenging in the context of the physical distancing requirements of COVID-19. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=407&fit=crop&dpr=1 600w, https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=407&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=407&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=512&fit=crop&dpr=1 754w, https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=512&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/337429/original/file-20200525-106862-13c5o4n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=512&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A sign with a message translating to ‘We Love You Mom’ is shown outside a long-term care home in Montréal, April 18, 2020.</span>
<span class="attribution"><span class="source">(THE CANADIAN PRESS/Graham Hughes)</span></span>
</figcaption>
</figure>
<h2>Community vs. individual</h2>
<p>In times of pandemic, <a href="https://www2.gov.bc.ca/assets/gov/health/about-bc-s-health-care-system/office-of-the-provincial-health-officer/covid-19/ethics_framework_for_covid_march_28_2020.pdf">ethical decision-making tends to emphasize the good of the community over the good of the individual</a>.</p>
<p>But paradoxically, the good of individuals is also harmed when they are prevented from honouring their community and family ties. How we approach these difficult decisions reveals a lot about what we see to be most valuable in life and how we perceive the good. </p>
<p>From a public health ethics perspective, the harm principle means that:</p>
<blockquote>
<p>“<a href="https://www2.gov.bc.ca/assets/gov/health/about-bc-s-health-care-system/office-of-the-provincial-health-officer/covid-19/ethics_framework_for_covid_march_28_2020.pdf">a society has a right to protect itself from harm, real or threatened. The government is justified in intervening and possibly impinging on the rights of individuals to protect the community from harm</a>.” </p>
</blockquote>
<p>But if impinging on the rights of an individual is actually a matter of harm — insofar as it violates ancient social and ethical values about care for elders or the dying, and thereby hurts the dying and their loved ones — we need to think differently. </p>
<p>Deliberating such challenging ethical decisions, and having the adequate resources to respond to them, can rarely be accommodated ad hoc. Rather, it requires careful planning at a systems and institutional level and significant resources, space, education, screening and infection control measures. </p>
<p>At a higher level, it also means our research investments and policy deliberations about COVID-19 must not abandon questions related to what it means to die with the disease or in the context of the pandemic.</p>
<h2>Harm-reduction approach</h2>
<p>Those we love are an integral part of our dying journey. So much so that a recent court case in the United Kingdom concluded that <a href="https://www.theguardian.com/law/2020/may/05/dying-surrounded-by-family-a-fundamental-right-says-uk-judge">patients have a fundamental right to be with their family at the time of death</a>.</p>
<p>In a context where patients are receiving a palliative approach to care, we need to start from the assumption that living and dying alone is so potentially harmful that we need to balance harms using a harm-reduction approach. </p>
<p>We have come to know of the value of harm reduction <a href="https://ontario.cmha.ca/harm-reduction/">primarily from people who are vulnerable because of addictions</a>. </p>
<p>We provide treatment that seeks to attenuate harm, even if there is some risk involved. Perhaps we need to be applying this same strategy to keeping dying persons and family together in palliative care. </p>
<p>Perhaps particularly in the context of a limited life span, for individuals in care, the harm of separation must be considered alongside the harm of infection. Respecting the rights of those who are dying would then mean we need to allow they and their loved ones to take some risks. This means, of course, ensuring that facilities are adequately resourced not only with the equipment they need to protect staff and visitors but also with personnel who can collaborate across care teams.</p>
<p>Until a vaccine is found, COVID-19 is here to stay — but these precious lives are not. Giving people permission to be together at the end of their lives will take some ingenuity and money. But it’s the right thing to do.</p><img src="https://counter.theconversation.com/content/138413/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Barbara Pesut receives funding from CIHR and the Max Bell Foundation. She has previously received funding from the Vancouver Foundation, the Canadian Cancer Society Research Institute, the Peter Wall Institute for Advanced Studies, the Canadian Frailty Network, and the Social Sciences and Humanities Research Council.</span></em></p>Preventing people from dying alone in a pandemic takes ingenuity and money, but it’s the right thing to do.Barbara Pesut, Professor, School of Nursing, University of British ColumbiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1199572020-05-21T09:28:48Z2020-05-21T09:28:48ZPoor communication, discrimination and lack of training: why LGBT people may face inequalities in palliative care<figure><img src="https://images.theconversation.com/files/336469/original/file-20200520-152327-1qn0ehb.jpg?ixlib=rb-1.1.0&rect=0%2C27%2C5970%2C3944&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Healthcare staff may not know how to meet an LGBT patient's unique needs.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hands-relatives-cancer-patients-poorly-ventilated-1160063185">Mr.songkod Sataratpayoon/ Shutterstock</a></span></figcaption></figure><p>Palliative, or end of life care can help people with terminal conditions, such as cancer, live as well as possible for as long as possible – and allow them to die with dignity. But end of life care is not a straightforward process. And for patients from the LGBT community, the process presents a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863535/">whole host of barriers</a> that they and their families may face.</p>
<p>Not only do many people from the LGBT community face difficulties accessing <a href="https://www4.halton.gov.uk/Pages/health/JSNA/olderpeople/Chapter%2010%20end%20of%20life%20care.pdf">high-quality end-of-life care</a>, they also <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863535">may face issues</a> with their care. This may sometimes be because of ignorance and prejudice against them during pre-hospital admission. It may also be due to poor communication between patients and care providers about treatment plans, judgement by staff about a patient’s family or relationships, and a failure to properly support the spiritual needs of the patient.</p>
<p>Many have also experienced <a href="https://www.ncbi.nlm.nih.gov/pubmed/26380926">victimisation, discrimination and personal hardship</a> as a result of their sexual identity throughout their life, and may feel that telling a healthcare professional about their sexual identity would change their interactions or quality of treatment.</p>
<p>Staff may also be unaware of an LGBT patient’s particular needs or how to meet them. For example, patients who have undergone gender reassignment may have been married previously in their former gender. They might have children and grandchildren. Dealing with current partners, spouses, former spouses and children during end of life care takes particular skills, which requires specialist training. As many in palliative care want to be surrounded by loved ones, healthcare workers need to be trained to deal with these types of situations.</p>
<p>Many LGBT people may also hide their relationships, meaning that healthcare workers may exclude key individuals from their loved one’s end of life care. Other factors that can <a href="https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2016/reality-end-of-life-care-lgbt-people.pdf">impact end of life care</a> include whether an LGBT person lives alone, if they’re socially isolated, and if they face barriers to services or lack consultation. Ageism, and past negative experiences relating to their sexual orientation or gender identity, might also impact the care they receive.</p>
<p>Bereaved LGBT partners and spouses have also been found to <a href="https://journals.sagepub.com/doi/10.1177/0269216316634601?icid=int.sj-full-text.similar-articles.3">experience less support</a> during the death of their loved one. They complained of being shut out of the care process and ignored.</p>
<p>Healthcare professionals also aren’t typically trained to address the specific needs of the LGBT community when it comes to end-of-life care. These needs will include the need for confidentiality and communication from healthcare providers that is sensitive to their sexuality and preferences. Many LGBT people may also feel too vulnerable to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863535/">disclose their sexual identity</a> while receiving this type of care, which may make their final months lonely.</p>
<h2>Room for improvement</h2>
<p>Research shows that LGBT people already have lower health outcomes, partly because of <a href="https://lgbtcancer.org/lgbt-cancer-survivorship/disparities-between-lesbians-and-gay-men-in-cancer-diagnosistreatment/">ignorance of LGBT issues</a> among healthcare practitioners. For example, they may not receive routine cancer screenings, and may not be able to access adequate healthcare services.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=391&fit=crop&dpr=1 600w, https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=391&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=391&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=491&fit=crop&dpr=1 754w, https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=491&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/336480/original/file-20200520-152344-118moeh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=491&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Healthcare staff need more training in caring for LGBT patients in palliative care.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-consults-woman-patient-oncology-clinic-1668979537">Peakstock/ Shutterstock</a></span>
</figcaption>
</figure>
<p><a href="https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2016/reality-end-of-life-care-lgbt-people.pdf">Sexual orientation and gender identity</a> are also both key areas where inequality and discrimination can occur in end of life care. Poor training has been highlighted as one cause.</p>
<p>But many of the shortfalls faced by the LGBT community during palliative care are prohibited and protected by the <a href="https://www.echr.coe.int/Documents/FS_Euthanasia_ENG.pdf">Human Rights Act 1998</a>. Article three states that no one shall be subject to torture or to inhuman or degrading treatment or punishment, while article eight protects a person’s right to privacy, respect for their sexual identity and the right to control information about their private life.</p>
<p>The issues addressed in articles three and eight have been interpreted by the courts as including how a person <a href="http://www.qil-qdi.org/end-life-issues-european-court-human-rights-value-personal-autonomy-within-proceduralized-review/">plans their end of life care</a>. This means there could potentially be legal redress for any person who feels that their wishes and feelings relating to end of life care aren’t being taken into account by the healthcare workers looking after them.</p>
<p>There are two particular aspects of good end of life care that many LGBT people find are <a href="https://www.dyingmatters.org/page/lgbt-people-let-down-end-life-care-services">most important to them</a>. First, they want their care to focus on their individual needs. Second, they want their partner to be accepted.</p>
<p>Currently, there are recommendations in place for caring for those from the LGBT community in palliative care. In order to ensure that LGBT people receive the <a href="https://www.macmillan.org.uk/documents/aboutus/health_professionals/endoflifecare-lgbtroutetosuccess.pdf">best end of life care</a> going forward, it will be important for healthcare workers to have better training.</p>
<p>Better training will ensure they can communicate properly with LGBT people about their needs and understand their situation. Training will need to include understanding equality, diversity and confidentiality, as well as understanding the unique issues LGBT people face and how this impacts end of life care. Staff or other residents should also report any discrimination to prevent it from continuing in the future.</p><img src="https://counter.theconversation.com/content/119957/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Joseph does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Lack of training and skills among those who work in the area may lead to LGBT people receiving poorer palliative care.Paul Joseph, Lecturer in Health Care Law and Ethics, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1355472020-04-21T06:22:18Z2020-04-21T06:22:18ZDoes anyone know what your wishes are if you’re sick and dying from coronavirus?<figure><img src="https://images.theconversation.com/files/329319/original/file-20200421-126536-13nsr2s.jpg?ixlib=rb-1.1.0&rect=40%2C282%2C3940%2C2384&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock/sfam photo</span></span></figcaption></figure><p>With more than <a href="https://coronavirus.jhu.edu/map.html">170,000 coronavirus deaths worldwide so far</a>, including <a href="https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert/coronavirus-covid-19-current-situation-and-case-numbers">71 in Australia</a>, the COVID-19 pandemic has highlighted the importance of talking to your loved ones about dying and your wishes at the end of your life. </p>
<p>If you become seriously unwell with COVID-19 and are likely to benefit from active treatment and need a ventilator or are dying, do those closest to you know what type of care you would want?</p>
<p>COVID-19 steals the luxury of time but these are the questions busy health-care providers assessing you will want to know to inform your treatment. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-are-older-people-more-at-risk-of-coronavirus-133770">Why are older people more at risk of coronavirus?</a>
</strong>
</em>
</p>
<hr>
<p>If you haven’t had these important conversations, start them today. Have them with someone who will be able to advocate for your care preferences and wishes when you are unable to do it yourself. </p>
<p>Who should be having these discussions?</p>
<p><a href="https://theconversation.com/why-are-older-people-more-at-risk-of-coronavirus-133770">Older people have more chronic health conditions</a> that place them at higher risk of severe illness or death. They are more likely to find themselves in a variety of situations where health-care decisions need to be made. </p>
<p>Although older people and those with chronic conditions are at more risk, no one is protected against COVID-19, so everyone should have these conversations.</p>
<h2>What are the options?</h2>
<p>COVID-19 is a respiratory virus that can cause lung infection. If you were likely to benefit, you could be sent to an intensive care unit (ICU). Some patients will need to have a tube put down their throat so they can be attached to a ventilator to help their body breath. Would you want this to happen to you?</p>
<p>In crisis situations, who can be with you in hospital while you are sick or dying changes. You may be allowed one person with you or no-one. </p>
<p>Health-care providers are working creatively to ensure patients and their families remain connected through the use of technology, such as FaceTime, WhatsApp, Viber, Zoom or texting. Would you still decide to go to ICU if you knew you could only communicate with those you love using technology? </p>
<h2>What if you don’t want aggressive treatment?</h2>
<p>Good health care involves understanding people’s preferences and wishes, and developing clear goals of care. Not everyone will want to have aggressive treatment, which can be burdensome and difficult to cope with if you have other chronic illnesses or are very old. </p>
<p>If you elect to have good symptom management only, rather than aggressive treatment, do you know what palliative care might look like for you in this situation?</p>
<p><a href="https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2020/03/Palliative-Care-Australia-statement-FINALupdated-2603.pdf">Palliative care</a> aims to relieve symptoms and promote quality of life. </p>
<p>Palliative care symptom management is focused on making you as comfortable as possible, by managing any distress, breathlessness, anxiety and pain. The health-care providers will endeavour to communicate regularly with your family and keep them informed about your situation and how you are responding to these comfort measures. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-do-more-men-die-from-coronavirus-than-women-136038">Why do more men die from coronavirus than women?</a>
</strong>
</em>
</p>
<hr>
<p>If you want to know more, look at the <a href="https://www.caresearch.com.au/caresearch/tabid/5982/Default.aspx">caresearch COVID-19 website</a>. </p>
<p>If you do not want to receive aggressive medical treatments, then <a href="https://www.advancecareplanning.org.au/">Advance Care Planning Australia</a> has some great resources to help you frame and document your care preferences. </p>
<h2>What questions do you need to think about?</h2>
<p>This list provides some helpful questions for a written plan. You can also give your answers to your advocate, someone you want to speak to the treating doctor or nurse on your behalf if you’re too sick to talk. </p>
<p>1) Who is the nominated person you want to speak on your behalf?</p>
<p>2) What are your:</p>
<ul>
<li><p>goals of care?</p></li>
<li><p>health priorities?</p></li>
<li><p>current conditions?</p></li>
</ul>
<p>3) Do you know what treatment you want or do not want should you be too sick to tell health professionals yourself?</p>
<p>4) If it becomes clear you are dying, what does a comfortable dignified death look like to you? </p>
<p>5) What is your preference if your condition gets worse, even after health professionals try everything? If you are dying, do you want to be put on a ventilator?</p>
<p>6) Do you want be resuscitated (with <a href="https://www.healthdirect.gov.au/how-to-perform-cpr">CPR</a>) if your heart and lungs stop working?</p>
<p>7) Would you rather not go to the hospital and prefer to stay in your home or residential aged care home if given the choice?</p>
<p>8) Have you had your wishes documented and does your advocate have a copy of your care preferences and wishes? </p>
<p>If we fail to have these conversations now and are unfortunate to present to hospital acutely unwell, then there may not be the luxury of time to discuss these issues in detail with our family and the treating health-care team.</p><img src="https://counter.theconversation.com/content/135547/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Louise D. Hickman receives funding from Sydney Partnership for Health, Education, Research and Enterprise (SPHERE); Australian Reserach Council; Australian Government, Department of Health: Public Health and Chronic Disease Grant Program
National Palliative Care Projects
. </span></em></p><p class="fine-print"><em><span>Jane Phillips receives funding from National Health and Medical Research Council, Cancer Australia, Australian Government, Department of Health: Public Health and Chronic Disease Grant Program National Palliative Care Projects, Partnership for Health Education, Research and Enterprise (SPHERE).
Jane Phillip is President of Palliative Care Nurses Australia. </span></em></p><p class="fine-print"><em><span>Patricia Davidson receives funding from Australian Research Council, National Health and Medical Research Council, Heart Foundation, NSW Cancer Institute, National Institutes of Health</span></em></p>It’s time to talk to your loved ones about what care and treatment you’d want if you face death from COVID-19.Louise D. Hickman, A/Professor and Director Palliative Care Studies at IMPACCT (Improving Palliative, Aged & Chronic Care through Clinical Research & Translation), University of Technology SydneyJane Phillips, Director of IMPACCT, Professor of Palliative Nursing, University of Technology SydneyPatricia Davidson, Professor and Dean, School of Nursing, Johns Hopkins UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1320422020-03-03T13:52:35Z2020-03-03T13:52:35ZGhana needs a better policy to guide care for cancer patients<figure><img src="https://images.theconversation.com/files/316273/original/file-20200219-10985-fq5y9t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A nurse in a hospital checks an IV</span> <span class="attribution"><span class="source">Wikimedia Commons</span></span></figcaption></figure><p>The <a href="http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf">World Health Assembly</a> urged countries in 2014 to include palliative care into their health systems. Its resolution called for equitable services, available to everyone who needs them. <a href="https://www.who.int/cancer/palliative/definition/en/">Palliative care</a> encompasses the support system for patients and their families when they face life-threatening illnesses. It aims to improve quality of life, relieve pain, and help people cope with death. </p>
<p>Palliative care is essential because it gives patients a choice in deciding how their pain and symptoms will be managed. Second, it ensures that patients enjoy the highest quality of life that is practically possible in the circumstances. Because of the increasing care required as a patient’s condition advances to the terminal stage, palliative care is a team approach. It includes nurses, doctors, social workers, volunteers, faith leaders and other health care professionals in supporting the care and well-being of patients and their families. </p>
<p>People are living <a href="https://journals.sagepub.com/doi/full/10.1007/s12290-008-0047-5">longer</a> than before because of advances in medical technology that makes the sick survive longer. The downside is that a longer life span increases the chance of a person experiencing illnesses such as cancer and heart disease, and this, in turn, increases the need for palliative care.</p>
<p>So palliative care is essential, especially when the illness is incurable or treatment is ineffective. And it is of great concern in contexts where healthcare resources for diagnosis and treatment are limited. </p>
<p>Cancers are among the leading <a href="https://www.who.int/news-room/fact-sheets/detail/cancer">causes</a> of illness and death globally. Almost two-thirds of these deaths occur in developing countries, where palliative care is limited or nonexistent.</p>
<h2>Cancer and care in Ghana</h2>
<p>Ideally, <a href="https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-136">palliative care</a> should be accessible at all levels of health care and should place patients and families at its centre. The multi-disciplinary team approach ensures efficiency and is the best way to provide optimal palliative care.</p>
<p>In <a href="https://www.researchgate.net/publication/267814449_A_Structured_Approach_to_End-of-Life_Decision_Making_Improves_Quality_of_Care_for_Patients_With_Terminal_Illness_in_a_Teaching_Hospital_in_Ghana">Ghana</a>, patients with cancers and their families who seek services at oncology departments and palliative care units have to pay for treatment. In some cases, such services are inadequate or not within their means. Patients with national health insurance cards afflicted with most cancers and conditions like chronic kidney disease have to pay because the ailments are on the health insurance exclusion <a href="http://www.nhis.gov.gh/benefits.aspx">list</a>. </p>
<p>Currently, patients have to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3426378/">pay</a> for any care relating to cancer (other than breast or cervical cancer): diagnostics, chemotherapy and radiotherapy. </p>
<p>The <a href="https://www.graphic.com.gh/news/health/cost-of-cancer-treatment-worries-patients-dr-aryeetey.html">cost</a> of managing cancer, especially advanced cases, is usually beyond the financial means of patients and their families. Expecting them to pay for it does not conform to the equity principle advocated by the World Health Assembly. The scarcity of palliative care services and the financial barriers to using them amount to an ethical problem. It is unethical to deny cancer patients the same level of treatment given to, say, malaria patients.</p>
<p>Ghana does not have a clear <a href="https://www.businessghana.com/site/news/general/201259/Government-to-introduce-palliative-care-policy">national policy</a> on palliative care. It is reported that it took the <a href="https://www.modernghana.com/news/499268/breast-cancer-screening-to-go-under-nhis.html">advocacy</a> of a few women with breast cancer and the support of some health staff to lobby and petition Ghana’s parliament to get the treatment of cervical cancer under the national health insurance scheme. </p>
<p>The lack of access to palliative care in Ghana leads to considerable suffering for patients and their families. A recent <a href="https://www.nottingham.ac.uk/research/groups/ncare/news/congratulations-yakubu-salifu.aspx">qualitative study</a> conducted by my colleagues and I among men with advanced prostate cancer and their family caregivers in Ghana highlighted two main issues. These were challenges and burden of care as well as the support and coping strategies adopted. </p>
<p>Participants expressed the overburdening nature of the care responsibility. They spoke of feeling “alone in the middle of a deep sea”, disruption of their lives, and unhappiness. The only support available to them is their social network, their extended family and their faith.</p>
<p>It is also an issue for health professionals as they are expected to show the “<a href="https://journals.sagepub.com/doi/abs/10.1177/175045891702701001">6Cs</a>” – care, compassion, courage, communication, commitment, and competence. Healthcare professionals are unable to provide competent and collaborative palliative care without a policy and a budget provision. </p>
<p>Ghana needs a holistic palliative care policy and a clear, sustainable financial commitment to ensure its implementation. The Medical and Dental Council, as well as the Nursing and Midwifery Council of Ghana should ensure that the training of nurses and doctors in palliative care is prioritised. Government and relevant agencies must take the lead in ensuring that there is a practical palliative care policy that is tailored to the Ghanaian health system and the needs of patients.</p><img src="https://counter.theconversation.com/content/132042/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Yakubu Salifu does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Ghana’s lack of a palliative care policy is posing a significant challenge to effective healthcare for cancer patients.Yakubu Salifu, Lecturer, Palliative Care, Lancaster UniversityLicensed as Creative Commons – attribution, no derivatives.