Shining a spotlight on palliative care

What is palliative care? Ask most people this question and they’re likely to picture a medical physician engaged in the delicate art of preparing people for death. The patient will likely be elderly and nearing the end of life, the grim reaper hovering nearby.

But palliative care is more than a resort for the dying, says Dr Cris Abbu, Policy and Projects Manager at Australian Catholic University’s (ACU) PM Glynn Institute. And a better understanding of it is crucial if we’re to address the shortcomings in palliative care.

“There is a huge gap in the understanding of what palliative care is, and that’s a very big constraint,” says Dr Abbu, the author of an influential ACU report on palliative care in Australia.

The World Health Organisation defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems related to a life-threatening illness”. This includes patients nearing death, but also those undergoing therapies that intend to prolong life. 

It is essentially about preventing suffering, says Dr Abbu, and striving to fulfill the physical, psychosocial and spiritual needs of people dealing with life-limiting illness. 

“We always say, ‘It’s not just end of life’, because end of life care is just one part of palliative care,” she says. “Palliative care also applies to children who are suffering from conditions like cancer, and they might be receiving palliation during treatment, to help them to manage their pain and stay on track with their recovery.” 

The widespread mischaracterisation of palliative care is not confined to the general public; it’s also common in the medical community. 

The PM Glynn report, titled A snapshot of palliative care services in Australia, cites research showing that almost one in five GPs see palliative care as “end of life care for the incurable and terminally ill”. 

“Doctors and others in the medical profession commonly misconstrue palliative care as end of life care, associating it only with death and dying,” says Dr Abbu, lead author of the report, which was launched in 2021.   

Partly a result of this misunderstanding, palliative care is among the least preferred specialisations of medical students for future practice. This is a problem, Dr Abbu adds, because palliative care is suffering from a severe shortage of specialised staff.

“If we do away with the stigma that palliative care is only associated with death,” she says, “perhaps we’ll do better at attracting more medical physicians to this area of specialisation.” 

A heavy burden 

The PM Glynn Institute report, researched and written by Dr Abbu with the assistance of researchers Jude Lobo and Samantha Dunnicliff, has made a significant contribution to public discussion about palliative and end-of-life care.

It found that the number of people being hospitalised for palliative care is growing at an average rate of five per cent a year in adults, and upwards of 10 per cent a year in children, and services are not keeping pace. 

Despite this growing need, there is currently less than one specialist palliative care physician for every 100,000 people in Australia – a number that needs to be doubled to meet industry benchmarks. 

Furthermore, some 40 per cent of palliative care physicians intend to retire within a decade, meaning the shortfall could be exacerbated in coming years. 

“One thing is clear: there are huge gaps in the provision of palliative care in this country,” says Dr Abbu, who points out that public hospitals are predominantly city-based, meaning those living in regional and remote areas are often the hardest hit. 

“These gaps affect both equity and access, which are both underlying principles of social justice. It means that palliative care might not be available to everyone who needs it, and that includes members of society who are more disadvantaged than others.”

‘Not true choice’

It is important to note that the PM Glynn Institute’s report was initiated in the context of debates over the legalisation of euthanasia in Australia. 

Voluntary assisted dying remains a major legal, ethical and social policy issue in this country. At present, euthanasia laws have commenced operation in Victoria and Western Australia, with several other states set to follow suit.  

The PM Glynn report contends that, from a public policy perspective, there is a major argument to be made against the legalisation of assisted dying “when access to palliative care for those at the end of life or suffering from life-limiting illnesses is neither universal nor equitable”. 

“If euthanasia is legal but some people don’t have effective access to palliative care, these people are vulnerable to a problematic situation,” Dr Abbu says. 

“There are many reasons to oppose voluntary assisted dying, and the absence of true choice is one. Choice is predicated on the existence of a range of options, and those options must be accessible and equitable. 

“If the choice is assisted dying on the one hand, and the absence of effective pain control and care on the other, I would argue that it’s not a true choice at all. That’s why we need to address the gaps in palliative care before we start to consider voluntary assisted dying.” 

Meeting the need

So how do we meet the needs of people dealing with life-threatening or life-limiting illnesses?

Dr Abbu’s study contains a range of policy recommendations, including moving away from a reliance on hospital-based care towards “innovative and integrated models of palliative care”. 

At present, the burden is overwhelmingly being carried by public hospitals at a rate of six times more than private hospitals, putting a huge strain on the system. 

The PM Glynn report cites a successful model that has been adopted by two Sydney local health district hospitals, illustrating how palliative care services can be integrated and delivered in a community setting. 

Despite widespread public demand for home-based palliation, few community services exist, and most patients requiring palliative care are forced to receive it in hospital. 

“The literature tells us that those people in need of palliative care, they generally don’t want to go to the hospital, they want it in their community, in their homes,” Dr Abbu says. 

“Integrative models that combine hospital service with community services, local general practitioners and volunteers have been shown to be highly successful.” 

The report also advocates for a coordinated strategy to urgently increase specialist palliative care staff in hospitals and residential aged care facilities. 

Dr Abbu says the key to addressing the shortage is two-fold: firstly, we need to educate and inform to address the knowledge gaps in how people understand palliative care; secondly, we need to actively encourage interest in palliative care training by physicians and nurses. 

Incentives for students

The PM Glynn report found that, in 2016, almost 5,700 medical students were being trained to become general practitioners, while only 39 students were being trained as specialists in palliative medicine. 

The poor uptake of palliative care as an area of specialisation was discussed in a PM Glynn Institute podcast with Associate Professor Richard Chye, a Sydney-based palliative care specialist. 

Dr Chye noted that even some of his medical colleagues had negative views of palliative medicine, seeing it as depressing and burdensome. 

“We need to show young doctors and medical students what palliative care is,” said Dr Chye, Director of Supportive and Palliative Care at St Vincent’s Hospital in Sydney.

“We need to show them that it is not all about dying; it’s about trying to make positive steps in every patient’s journey. As a palliative care specialist, I’m able to make a real change to my patient’s journey so that it is more comfortable, and so the patient retains their dignity. Hopefully [students] will see that as a satisfying career.” 

Dr Abbu recommends incentives to attract more students to specialise in the field, including government subsidies for palliative care training, and more university scholarships for students wanting to focus on palliative medicine. 

In the long-term, however, she concedes that a wider shift in attitudes towards death and dying is needed, to help to remove the stigma around palliative care. 

“We need a cultural shift so that we can make palliative a more desirable area, a less frightening area for nurses and doctors to work in,” Dr Abbu says, citing a PM Glynn study that stresses the need for a public conversation about death and dying. 

“If we’re serious about being the type of society that cares for people, that thinks about upholding people’s dignity when they’re dealing with life-limiting and life-threatening conditions, then we need to pay more attention to the provision of palliative care in this country. 

“If we don’t address these issues, we will continue to fail in this important area, and many elderly, vulnerable and disadvantaged people won’t have proper access to proper care when it is needed most.”

The PM Glynn Institute is ACU’s public policy think tank, and the institute’s brief is to contribute to deeper thinking and new conversations about important issues confronting the Catholic community and Australian society. Learn more about ACU.