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.