As an intensive care physician I’m increasingly confronted with managing patients who are at the end of their life. Australians need to be aware that the way that they will spend the last few days or weeks of their lives is largely predetermined, not by their own wishes but by a medical conveyor belt from the community into acute hospitals and from there into intensive care units.
There’s no conspiracy behind this, it has just happened this way. The drivers include unreal societal expectations of what modern medicine can and, more importantly, cannot offer, fed by daily reports of the latest miracle cures; a medical profession that’s uncomfortable with discussing dying and death; medical specialisation that has resulted in amazing advances but focuses on specific single-organ problems and not the patient’s overall health status; and a lack of doctors who can stand back and recognise patients who are at the end of their lives. All this is reinforced by a society reluctant to openly discuss issues around ageing and dying. The perfect storm.
Interestingly, nobody wants it this way. Almost 70% of Australians want to die in their own homes. Yet, almost 70% will die in acute care hospitals.
People who suddenly become ill in their homes or in the community usually have an ambulance called. They are now on the conveyor belt. Ambulance personnel have no discretionary power – they have to take the patient to an acute hospital for further assessment.
Acute illness or trauma is frightening and most of us have little knowledge of what is available in the acute hospital. So, the journey starts – and for many, it’s appropriate. Medicine can perform some miracles. But for others, the so-called illness state is a normal and expected part of the dying process. Differentiating can be difficult.
The major challenge is to identify a potentially reversible component of a disease. Something that medicine can recognise and reverse – a patient who has fallen and fractured his hip can have it repaired, for instance.
But for many older people, there’s often little that’s amenable to modern medicine. As people age, they collect chronic health conditions or co-morbidities – this is the medicalisation of the ageing process. These conditions can sometimes be controlled but they’re not usually reversible.
Organ function declines markedly with age. Muscles become weaker, bones become more brittle, vital organ function deteriorates, brain function diminishes and wrinkles appear. The rate at which this occurs is encoded at conception and is called apoptosis – the programed death of cells and tissues.
You can optimise your chances of reaching your apoptotic potential with the help of living healthily and modern medicine. Diabetes can be controlled, for instance, and coronary arteries unblocked. Nevertheless, ageing is unavoidable and dying inevitable. Eventually the combination of chronic conditions means that even a small acute problem such as a simple urinary tract infection can result in death. This presents the dilemma for medicine and patients – how far do we go to sustain life?
Doctors are programed to cure. In an age of medical specialisation, they concentrate on incremental improvements in care of their own organ and refer to colleagues for advice about the other problems. As a result, elderly patients are often taking many medications with little or no benefit in the context of their chronic health status.
Clinical trials showing the efficacy of medicines are conducted in selected patients, not 90-year-olds with many chronic health problems. And when the end is finally near, those at the end of their lives come to hospitals for their last few days or weeks. Many are placed on life support machines and can no longer relate to their relatives and friends. Those who are conscious often plead to be allowed to die.
As an intensive care specialist I often become frustrated with my colleagues’ failure to recognise when patients are at the end of life. One of the worst phone calls an intensivist can receive from a colleague goes something like this, “I’ve had a chat to the relatives and they say they want everything done, can you help?”
This puts people like me in a difficult position. First, there’s an inference that what we can do will make the patient better. Then there’s the difficult situation of having to explain for the first time that we believe the patient is at the end of her life and any further active management would be futile.
The speciality of intensive care has a special responsibility to begin a frank and open discussion with our society about the limitations of modern medicine and the inevitability of ageing and dying. Hopefully, this will help people think about how they want to end their life.
Vital Signs: Stories from Intensive Care is published by NewSouth Publishing.
Read articles on related topics from our series Talking about death and dying
John Bryan
Retired
Good article, interesting because I'm 76 and the finishing line is in sight.
The GP who cared for my mother refused to take seriously her letter instructing him to abandon resuscitation. On the phone he was agitated telling me he was not there to bow to the wishes of patients.
I understand his responsibility to 'the duty of care'. But...what options do we have as patients?
Stephen Prowse
CEO at Wound CRC
This is such an important discussion to have in a community where the proportion of older people is increasing. The comment above from the GP "he was not there to bow to the wishes of patients" reflects much that is wrong in the medical professions approach to ageing and dying. Professor Hillman's article is refreshing. I cannot understand why politicians refuse to tackle this issue when the majority in the community want to see change. The argument of religious backlash does not hold water.
While it should not be a driver in any way, health costs are also important.
Carol Daly
Director
A very good article. This is a conversation we need to have.
Currently these decisions are made by intensive care and other specialists in the context of laws based on a religious view that life is a god given gift and only God can end it.
Yet most people want to die at home and the majority no longer have religious convictions about end of life. So the medical and legal frameworks need revision.
I hope that starts now. This article is a good starter, thanks.
Geoffrey Edwards
logged in via email @gmail.com
Carol,
"Currently these decisions are made by intensive care and other specialists in the context of laws based on a religious view that life is a god given gift and only God can end it."
Possibly confusing the issue of Voluntary Euthanasia/Assisted Suicide with the different, but not unrelated issue of futile care.
The primary difference is the end to which an action is performed - prolonging life or accelerating death.
If we adopt the religious view you have stated, one could argue…
Read moreSue Ieraci
Public hospital clinician
The law does not oblige providers to deliver futile care.
The real issue is that, when the illness happens unexpectedly or without preparation, people react in "crisis mode" and want to "do something". This applies to both family members and carers as well as health care providers.
The key to this is to be prepared and recognise when the person has reached the end of life. The acute deterioration can then be recognised and managed as a step in the process rather than a crisis to be overcome.
Luke McKean
logged in via Facebook
In reply to John, your mother's GP could not have been more wrong. The role of a doctor is to provide only the health care measures that patients wish to have, in the context of informed consent. In the worst case scenario, treatment that a patient does not agree can constitute assault and is a criminal offence. Unfortunately its a classic example of a doctor who is not comfortable with the field of end of life care reverting to the paradigm of 'cure at all cost' in order to cover his own discomfort…
Read moreLorraine Russell-Haddon
logged in via Facebook
Excellent. This article adds more knowledge to how I may die. I am ignorant in this regard. I am only 68 and would like to prepare myself for this part of living and what will happen sooner than I think.
I am not morbid and I would like to see more articles like this so I may be somewhat prepared, but also prepare my children for what is likely to happen.
Reema Rattan
Editor at The Conversation
Hi Lorraine,
I published a whole series on the topic late last year. It's still current as nothing has changed. You can find it here:
https://theconversation.edu.au/search?q=talking+about+death+and+dying
Sue Ieraci
Public hospital clinician
This is an absolutely crucial discussion to be had - preferably long before the person reaches the hospital, let alone the intensive care unit.
It needs to occur in the family home, in the GP surgery and, perhaps most importantly, in the nursing home.
Once a person is brought to hospital by ambulance, it is unrealistic to expect the the emergency care nurses and doctors, working in a crisis situation, to be able to navigate this situation. What they will almost always do is treat actively…
Read moreAleksandra Hadzelek
Lecturer in Social and Political Change at University of Technology, Sydney
Sue, sorry for replying so late but I'm only now reading the whole series. Thank you for your insightful contribution and thank you Prof. Hillman to bring these issues into the public debate.
This topic preoccupies me greatly since the death of my beloved grandmother who at the age of 97 broke her hip, was taken to hospital, surgery was ruled out because of her age and overall health, and she was left to die, right there, in the hospital. The agony lasted for 10 days, during which she repeatedly…
Read moreDavid Priest
PhD Student
I'd just like to add that cellular apoptosis not only occurs during aging and death, but is a very normal part of life (development and homeostasis). Perhaps programmed cell death in a dying individual should be treated somewhat differently, as it can arise from different cues (such as telomere shortening or oxidative damage).
Thanks,
David
Stephen Riden
Research and Information Manager, DSICA
I read Professor Hillman's book 'Vital Signs' when it first came out, and what he wrote has always stuck with me.
I would recommend everyone over 45 or with an elderly relative to read it as well. You could avoid a very painful life-end for someone you love.
Paul Wittwer
Orchardist
This is an important article and it is with some sadness that I comment on it.
Read moreMy mother recently passed due to pancreatitis. She passed after 36 hours of extreme pain, a 70km helicopter trip, an emergency operation and 12 hours of ICU.
Mum had several chronic medical problems which diminished her quality of life and hid the developing pancreatitis. She was on morphine patches as well as many other medicines, a legacy of reumatic fever when she was young.
Had her pancreatitis been diagnosed…
Lorraine Russell-Haddon
logged in via Facebook
I have reserved your book Vital signs at our local library. Thank you again.
Joe Pemberton
logged in via Facebook
What a fantastic article! Confronting and morbid, for sure, but we could all benefit from more straight shooters like Prof Hillman.
People in our society have an inflated sense of self importance and selfish desire to 'live forever'.
If we can become more familiar and accepting of our own morbidity, rather then focusing on avoiding death, then society as a whole would benefit in so many ways!
Dennis Altman
Professorial Fellow in Human Security at La Trobe University
as someone whose partner died young--53--and unexpectedly quickly from cancer this article was very helpful. Unfair as it is, sometimes the best for us all is to let go, and to havevthr right to do so in some dignity
Peter Hindrup
consultant
This ought be required reading for everyone.
What ought to be clear and obvious to everyone is that they are going to die. The 'when' they have no control over, the 'how', baring accident, stroke/heart attack or such is.
At 73 I have long known 'how'. With a little luck I will know when the 'when' is approaching.
The thing that is odd to me is the number of people in my age group to whom this subject is taboo.
Murfomurf
logged in via Twitter
This story must be told. I keep on asking the same sort of questions at public meetings and discussions about treatment guidelines & "benchmarks". Why are doctors so proud of being able to do "life-saving" surgery on some 90-year-old man with a ruptured aorta, while 40-year-olds with 50%-blocked coronary arteries still have 25 years more of working life to offer for the investment? Medical professionals seem to HATE "being regulated" by being asked to draw up their own guidelines for sharing the…
Read moreDoug Rankin
Plasterer
I don't think I have any answers here - that being said I did like article. In my experience one of grandfathers died at surrounded by his family and sort of slipped away peacfully - everyone knew the end was soon. On the other hand one of grandmothers got a valve-replacement at 86 which appeared to me to be a suicide attempt on her side. I believe if the doctors had actually got her talking about why she wanted the operation I don't think it would have ever happened. After the operation she was just miserable for another 5 years. Waste of time, money and effort and a dead loss.
Mark Amey
logged in via Facebook
I have worked in Neonatal Intensive Care for over 25 years. For potential parents who may deliver an infant at less than 25 weeks gestation, most hospital clinicians in Australia will have some discussions with these parents offering to NOT initiate intensive therapy, but to allow the infant to die with their parents. many of us believe that a lifetime of severe disability is worse than death, however, the counselling is neutral, i.e. we don't advise parents per se. Refer to Janet Green's excellent essay on this subject, the link is on this page.
Do adult intensivists have similar conversations with patients and their families? I know that when I worked with adult patients many years back that this was the case.
An aside, NSW Health had a project called 'Respecting patient Choices' where all patients admitted to hospital, even fro very minor ailments were offered counsellng with a view to generating the equivalent of a 'living will'. Does this service still exist?
Jenny Mountford
Community Nurse
My mother-in-law at 95 suffered her first heart attack in a nursing home. There were no medications ordered to ease her suffering so an ambulance was called. They of course took her to a tertiary hospital where she spent the night in casualty and was transferred back to the nursing home the following day. Fortunately no cath lab etc. Common sense prevailed.
The issues:
Can't ambulance staff make sensible decisions ie: give the morphine and leave her in peace.
Should nursing home staff arrange emergency orders for morphine for their patients. A bit of pre planning would go a long way. The nursing home had not updated their records and had no end of life decisions recorded, despite that being attended when she was admitted.
Sue Ieraci
Public hospital clinician
Good point, Jenny. WHile hospitals are systematising the recording of advance orders, nursing homes are yet to have done this uniformly, when their residents are exactly the ones who need advance planning.
At some point, at the end of life, one of our organs has to fail so that we can die - we can't go on indefinitely treating each organ separately. This all needs to be discussed and planned by the patient's normal carersf, family and GP - it is difficult for ambulance officers to be asked to provide this service when they have never met the person before and are responsible for the outcome.
theperfectnose
logged in via Twitter
The title gave me a double take (it seemed to imply death caused by intensive care physicians).
Craig Minns
Self-employed
I've watched both of my parents die a prolonged and horrible death. In my Mum's case she had multiply metastasised cancer and in my Dad's he suffered from peripheral vascular disease through his long-term smoking.
In both cases it was clear for many months that there was little chance of doing anything other than palliation, but because my parents had excellent private medical insurance provided by my Dad's former employer, John Lysaght, the "heroic" interventions were both available and pushed…
Read moreGillian Cohen
Research Associate, School of Public Health, The Univerity of Sydney
Thank you for this article. I want to add that it makes it even clearer how much more we, as a society, need to talk about ethical issues that affect us all. in my experience, many people just have not ever thought about dying, they don't think about the potential decisions they may need to make when they are pregnant (in the case of premature delivery), or even plan for potential medical emergencies.
I agree that many people seem to think that death can be avoided, and many doctors do not appear…
Read moreEmma Anderson
Artist and Science Junkie
This issue is a head scratcher and I'm glad it's being discussed.
A logical thing would seem to be planning, with a living will sort of thing. What to do if X happens?
However, here are some scenarios that popped up in my head
1. The person has, in full health with no expectations of something going wrong later, written a living will that if X happens, Y should occur. However, later on, X happens and their perspective changes as well. Do we go with the written, presumably legally…
Read moreSimon Batterbury
Associate Professor at University of Melbourne
Not to diminish the importance of this article, but don't you all think that the title deserves a comma, or some punctuation? "Reflections on dying from an intensive care physician " is ambiguous....