More skilled in the art of dying

Robyn Maggs explains some dramatic improvements in palliative care in Australia

AUSTRALIA has been judged the second best country in the world in which to die.

This is likely due to the discipline of specialist palliative care having grown in Australia since the 1980s.

Time and money have been invested in research, guides, critiques and aspirations.

In 2000, the Australian Government developed a National Palliative Care Strategy to ensure a “nationally consistent and coordinated approach” to delivering services.

In 2018 it has provided a draft of an updated version for public consultation to guide planning for palliative care services in the future.

As tens of thousands of Australians access specialist palliative care services in Australia each year, this provides a golden opportunity for those with concerns or constructive ideas to speak up.

These national strategy documents use a World Health Organisation definition of palliative care as an “approach that improves the quality of life of patients and their families facing the problems associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.

The draft includes these principles: PALLIATIVE care is personcentred care. DEATH is a part of life. PALLIATIVE care is for people living with terminal illness and their carers. CARE should be equitable. SERVICES should be integrated across the wider service system. CARE should be high quality and evidence-based.

In an ideal world, these aspirations would be met.

In reality the so-called person-centred approach denies the reality that most of us would prefer to die at home.

However, in Australia, 54 per cent of deaths have occurred in hospitals, 32 per cent in nursing homes and 14 per cent at home.

There are other complexities involved, such as a carer needing to be there 24 hours a day, and help needing to be within reach 24 hours a day, seven days a week, when pain or other issues require it.

Care should be equitable and accessible. However, the National Palliative Care Strategy acknowledges there is an unmet need in parts of the community, including “Aboriginal and Torres Strait Islander people; people from culturally and linguistically diverse backgrounds; people who identify as lesbian, gay, bisexual, transgender or intersex; people living with a disability; people experiencing homelessness; people in incarceration; children and young people; people with cognitive impairment (including dementia); and people living in rural and remote areas”.

A major issue in this regard is the poor distribution of healthcare professionals and specialists, who tend to be citycentred. One suggestion has been that, as not all lifelimiting illnesses require specialist palliative care, a “palliative approach” may be taken to symptom management. This would require appropriate funding of undergraduate and postgraduate palliative care education across medical, nursing, and allied health programs.

More generally, it has been suggested that those in environments where a “palliative approach” to care may be needed, should be given palliative care education as part of their professional development. This would include health services such as general practice, communitybased services, hospitals and residential aged-care facilities.

The Department of Health and Human Services wrote in 2016: “Current end-of-life and palliative care models are unsustainable and will not meet future demand without significant redesign.”

Excellent, though not always perfect, models of palliative care are available with our specialist palliative care providers, in primarily metropolitan inpatient settings.

However, patient preferences and the limits of professional availability and funding, point to a growing need for services that are within homes and within residential aged-care facilities.

This would not only avoid unnecessary hospitalisation of those at the end of their lives, but help ease the burden on our hospital system.

It is simplistic to suggest all GPs should be highly trained in palliative care, given their already overburdened workload and the concern that dealing palliatively with the dying would add to their stress levels and their already higher-than-average suicide rate. However, as part of a flexible, community-based model of integrated care, their professionalism would be invaluable.

Some newer team-based and shared care models have had promising results, despite the professional and interpersonal challenges of truly working together in a person-centred approach.

These models may provide the best chance for earlier recognition of the critical incidents that can lead to inappropriate or unnecessary emergency department presentations at the end of life.

Then there are the few where palliative care, even if accessible, does not work — 70 per cent of doctors responding to an Australian Medical Association survey agreed with the statement: “There are patients for whom palliative care or other end of life care services cannot adequately alleviate their suffering”.

Palliative Care Australia has acknowledged it “cannot relieve all pain and suffering even with optimal care”.

Michael Ashby, director of Palliative Care in the Tasmania Health Service wrote: “Palliative care needs to be available for all, regardless of belief about assisted dying, but it also needs to be acknowledged that palliative care, however good and available, does not meet the needs or autonomous wishes of all people.”

Tasmanians have a social conscience — 25,000 of us walked across the Tasman Bridge for Reconciliation. We gave marriage equality one of the nation’s highest “yes” votes and 92 per cent of us supported “letting patients die when they are hopelessly ill and experiencing unrelievable suffering with no chance of recovery”.

During the coming parliamentary term, the people’s representatives will have the chance to vote on a Bill for Voluntary Assisted Dying, for those beyond the help of palliative care.

Robyn Maggs is a Tasmanian clinical psychologist.