Concern was expressed that funding spent on the implementation of Voluntary Assisted Dying would mean funding lost to palliative care. Yet in countries and states where voluntary assisted dying has been legalised, there has been an increase in funding for palliative care.
A 2018 REPORT (THE EXPERIENCE INTERNATIONALLY OF THE LEGALISATION OF ASSISTED DYING ON THE PALLIATIVE CARE SECTOR) FOUND: "AN ASSESSMENT OF THE PALLIATIVE CARE SECTORS, FOLLOWING THE INTRODUCTION OF ASSISTED DYING FOR EACH OF THE IN-SCOPE JURISDICTIONS, PROVIDED NO EVIDENCE TO SUGGEST THAT THE PALLIATIVE CARE SECTORS WERE ADVERSELY IMPACTED BY THE INTRODUCTION OF THE LEGISLATION. IF ANYTHING, IN JURISDICTIONS WHERE ASSISTED DYING IS AVAILABLE, THE PALLIATIVE CARE SECTOR HAS FURTHER ADVANCED. WHERE JURISDICTIONAL DATA IS AVAILABLE, THERE ARE CONSISTENTLY HIGH LEVELS OF PATIENT INVOLVEMENT IN PALLIATIVE CARE SERVICES AT THE TIME OF THE DEATH THROUGH ASSISTED DYING."
The following is a Mercury article which gives an overview of the complexity of providing widespread and effective palliative care in Tasmania.
Now that our Tassie battle for Voluntary Assisted Dying has been won, the spotlight must turn to palliative care. The legal cruelty of people dying in agony when even the best palliative care is no longer effective has been rectified. In this Palliative Care Week we can scrutinise the Australian Government’s Implementation Plan for the National Palliative Care Strategy 2018, which was published in October 2020. This Implementation Plan comes with the credentials of the Australian Government “articulating a cohesive national approach to the development and delivery of palliative care across Australia” and having been endorsed by all Australian governments.
The Implementation Plan sets out seven goals with supporting priorities and identifies action areas to progress these over the next five years:
1. Understanding - People understand the benefits of palliative care, know where and how to access services, and are involved in decisions about their own care.
2. Capability - Knowledge and practice of palliative care is embedded in all care settings.
3. Access and choice - People affected by life-limiting illnesses receive care that matches their needs and preferences.
4. Collaboration - Everyone works together to create a consistent experience of palliative care across care settings.
5. Investment - A skilled workforce and systems are in place to deliver palliative care in any setting.
6. Data and evidence - Robust national data and a strong research agenda strengthen and improve palliative care.
7. Accountability - National governance of this Strategy drives action.
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.” Whether this concerning assessment continues to be correct, will depend on the success of the 2020 Implementation Plan.
It is reassuring to see the extent to which the Plan’s goals recognise the autonomy of the suffering individual: a person’s right to act on his or her own values and needs. And given that 70% of individuals want to die in their own home, and only 14% do, the Plan’s requirement for palliative care to be an integral part of all care settings (home, hospital, hospice, aged care residence), could dispel the fear of residential placement that the Royal Commission into aged care has only intensified. However, the investment the Plan requires for this and for training a skilled workforce, needs to acknowledge the complexities involved.
Beginning with appropriate funding. In jurisdictions where assisted dying is available, funding for palliative care has increased, but much more will be needed. The first goal, that people understand the benefits of palliative care, and know where and how to access services is an ideal, limited by the Government’s plan acknowledging the population groups that generally experience additional barriers in accessing services: “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 that will limit the Plan’s success, is the poor distribution of palliative care health care professionals and specialists, who tend to be city-centred. There is also the need for palliative care services to be available twenty-four hours a day, seven days a week, when pain or other issues require it. A radiation oncologist recently pointed out that effective palliative care “will only work with established relationships, which are generally not available in this part-time and fractional workforce who take weekends off”.
In an era where we are finally recognising the critical need for evidence-based research, the Plan’s goal of “a strong research agenda” is encouraging. Palliative Care Australia reported in 2020 that they were NOT meeting their benchmark of 60% of their patients with moderate to severe symptoms having their symptoms reduced to mild or absent. Hopefully research will continue to improve the effectiveness of palliative care. Many people think that terminal (palliative) sedation will prevent even the most severe pain, but research shows that it was ineffective in 17% of these cases. Doctors working in palliative care need to have their legal protection clarified. In relation to terminal sedation, a group of legal and medical professionals wrote: "For all doctors providing end of life care, there should not be the risk of under treatment and providing less than effective palliative care because of concerns about legal sanctions".
Some of the newer team-based and shared care models of palliative care have had promising results, in spite of the professional and interpersonal challenges of truly working together in a person-centred approach. The Australian Government Productivity Report in 2018 has stated that demand for care will grow rapidly in coming years as more people enter the older age groups in which most deaths occur. We need this Implementation Plan to work, not only for those who are so ill, but for those working in this area, who give professional and compassionate care and often suffer their own traumas because of it.
Robyn Maggs
Clinical Psychologist
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