This is one of two final articles in our Coping with Mortality series. Today’s accompanying piece looks at how the very old view death and their preferences for care at the end of life. You can read previous articles in our series here.
Palliative care programs are well established in Australia but they aren’t being used effectively. While referral to palliative care should occur early in the course of a likely terminal illness, it is often delayed – sometimes declined – by patients who may feel expected to “fight” the disease or because it seems too soon to go that way.
Doctors can delay referral too. Research has found the name palliative care causes distress and reduces hope in patients and their families. Commonly, doctors prefer to encourage their patients with another line of therapy: “Don’t give up. Palliative care? You’re not ready for that yet.”
The decision to move from actively treating a serious disease to focusing on making a patient comfortable can represent abandonment for the patient and failure for the doctor. But without timely access to palliative care, the patient risks exposure to futile treatments and additional discomfort.
Palliative care should be a transitional phase in which care is shared. The doctor can continue treating their patient’s disease while symptom control and preparation for the reality of death track alongside. When attempts to reverse the illness are no longer of use, there will already be an established relationship in place, ready to support the patient through to the end.
To comfort rather than cure
Palliative care is terminal care that aims to comfort rather than cure the patient. A Canadian study found that initially, patients associated palliative care with hopelessness and dependency that provoked fear and avoidance. But once receiving it, they said it improved their “quality of living”.
In Australia, palliative care replaced the hospice – funded by charitable and community organisations and sitting outside of medicine – in the 1980s. Today, specialist palliative care services are provided in hospitals, residential homes and in outreach care, and funded largely by the government.
In 2012-13, about 11,700 patients received a specialist palliative service in Australia, costing around A$4.7 million. Numbers of both patients and dollars will increase as our population ages so it’s important that palliative care services are used efficiently.
Palliative care, made up of basic medicine and skilled nursing, involves pharmacological and other flexible approaches that consider what matters most to the patient.
Much of palliative care involves managing symptoms; some from the disease, others from its treatments. Pain, nausea, constipation, breathing difficulties and loss of appetite are common. There are also emotional and existential issues that call for sensitive exploration of patient history, expectations, fears and hopes.
There is no one regimen to treat discomfort. To control severe pain, for instance, one patient may need an opioid drug dose ten times higher than another patient.
Palliative care has already moved from a focus on advanced cancer to other causes of dying, such as cardiac, respiratory and neurological illness. The dying phase can be prolonged in the latter cases. When they can’t be supported at home, these patients are too often placed in an aged care facility where palliative care services aren’t adequately resourced.
To make palliative care economically efficient, it should be everyone’s business, not just that of specialist palliative care staff.
In the United Kingdom, nurse practitioners have won the right to be trained to prescribe opioids and other medications. We need more nurse practitioners in Australia, better clarification of their roles, more fluid demarcation of their responsibilities and a review of their remuneration.
Nurse practitioners are specially trained nurses that could be placed in residential care facilities to help assess patient need and record advanced care wishes. Their presence would avoid unnecessary hospitalisation for minor injury and help ensure good palliation on site.
In Australia, the majority of people with a terminal illness die in hospital; a miserable setting for both patient and family. This happens partly because of reluctance to suspend active treatment even when it has become futile as well as too few beds in step-down or aged care institutions, and inadequate support for the home care alternative.
Home care costs less than institutional care. Studies done in Canada show palliative care at home meant fewer days in hospital and a cost reduction at CAD$4,400 per patient. In Italy, costs reduced to just over one-fifth when home palliative care was instituted and in Romania, a home visit cost only one-third the cost of a day in hospital.
In my 25 years of being a palliative care specialist, I have found home care – with the support of a palliative nurse team and GP visits – improves the chances of dying at home and increases the number of days considered as being good quality. It leaves a family with a sense of a job well done and, I believe, lessens the pain of bereavement. It is often recalled as a time of beauty and bonding in family history.