Does palliative care mean dying?

It's a question many people don't think about but it's one that is becoming more relevant as medical advances extend life, including for those with terminal illnesses.

In an article published in the Medical Journal of Australia today, Dr Roger Hunt and Ms Julie Taylor examine why people fear palliative care and whether these fears are justified.

"When we discuss the concept of palliative care, most people's minds turn immediately to death and dying," Dr Hunt said.

"They see it as a dismal outcome, rather than what it really is – an approach to help those who are terminally ill respond as well as possible to their illness."

Dr Hunt says terminally ill patients are often afraid of palliative care.

"We've interviewed many people with terminal illnesses and the first thing that comes up is their fear of what kind of care they will receive when clearly death isn't too far away," he said.

He says many terminally ill people are concerned about losing their autonomy or being placed in medical care if they need it.

"We need to explain that palliative care is patient-centred and designed to improve quality of life, not prolong it. It's about helping someone maintain the best possible quality of life from the time they have left, rather than trying to keep them going as long as possible," Dr Hunt said.

Pain and other symptoms, loss of independence and reduced quality of life are more likely to be managed successfully in patients receiving palliative care, they write – but that may not happen if it is confused with euthanasia.

What are examples of palliative care?

Palliative care is provided in a number of ways.

Ms Taylor says it could be provided in the patient's home, in the community or in hospital.

"It involves physical measures such as pain relief and medication but also psychological and social support," Ms Taylor said.

She says many people don't realise that palliative care can be delivered alongside curative treatment to relieve pain and other symptoms for people with life-threatening illnesses.

"Research shows that a significant proportion of terminally ill patients receiving palliative care also receive intensive medical treatments, such as chemotherapy," Ms Taylor said.

"These can cause significant side effects – not just physical but psychological – so it's important that palliative care services also provide psychological support."

Ms Taylor says providing both cancer treatment and palliative care in the same facility at the same time can be beneficial.

"Patients receiving cancer treatments, like chemotherapy or radiotherapy, may feel vulnerable when they are feeling poorly," Ms Taylor said.

"But by having the palliative care team on site, they can quickly turn to them for support."

Is it necessary?

Ms Taylor says she would like the public to see that it's not something they need to fear.

"Palliative care is firmly focused on ensuring that people who are dying have the best life possible for as long as possible," Ms Taylor said.

"It's about improving the quality of life and dignity for someone at life's end."

Is it right to fear palliative care?

No, there appears to be no evidence that palliative care hastens death or causes people who receive it to feel they are a burden.

"There is good research on this subject and it shows no apparent effect on survival time for those receiving palliative care compared to those not receiving it."

Palliative care doctors and nurses want those who are dying to know that they will not be abandoned or put into a nursing home.

"We should stop talking about palliative care as if it means death," Dr Hunt said.

"It's not about hastening death, it's about providing relief from suffering at life's end."

How many people in Australia actually receive palliative care?

Palliative care is provided by specialists in public and private hospitals, in the community and in nursing homes.

In the community, palliative care is provided in people's homes and at home nursing service.

However it appears that palliative care is not used as much as it could be in Australia.

"Palliative care should be considered an integral part of end-of-life healthcare," Dr Hunt said.

"It's available when and where people need it and can relieve suffering, but we don't use it as much as we should," he said.

"Unfortunately in Australia there is a widespread fear of dying and death that causes many people to avoid palliative care."

The researchers say the public's fear could be based on misperceptions about palliative care.

"One of the biggest concerns about hospice or palliative care is that if people go into that sort of service they are more likely to have their lives cut short," Dr Hunt said.

"That fear is not supported by good evidence."

What are the benefits of palliative care?

Ms Taylor says it's a holistic service that provides physical, psychological and spiritual support during the end-of-life journey.

"It helps people to live well despite pain or other distressing symptoms," she said.

"We also try to help patients to come to terms with their illness through counselling and psychotherapy."

This can mean that patients with longer life-expectancies are still able to enjoy their lives and do things they're passionate about.

"We should be seeing palliative care as an enhancement of the quality of life rather than just a sign that you're going to die soon," Ms Taylor said.

Summary

In their article, "Does palliative care mean dying?" Dr Roger Hunt and Ms Julie Taylor examine why people fear palliative care. One of the main concerns is that if a person goes into a hospice or palliative care service, they will have their life cut short. However there is no evidence to support this claim.

Palliative care should be seen as an enhancement of the quality of life rather than a sign that someone is going to die soon. Furthermore there are many benefits to palliative care. It provides physical, psychological and spiritual support for the end of life journey. As well as this it helps treat pain or other distressing symptoms. Palliative care is accessible when and where people need it which is essential in relieving some of the fear surrounding it.