The PM Glynn Institute is the public policy institute of Australian Catholic University. Earlier this year we released a report on palliative care services in Australia. The report analysed the published data from agencies such as Palliative Care Australia, the Department of Health and Ageing, and the Australian Institute of Health and Welfare to explore some key trends and gaps in palliative care service provision in Australia. A one-page summary of some of the main findings and recommendations of the report is attached to this submission.
As a continuation of our work in this area, the Institute has undertaken an analysis of workforce trends for palliative care doctors and nurses in New South Wales from 2013-20, and I attach a copy of this analysis to assist the Committee in its inquiry into the Voluntary Assisted Dying Bill 2021.
The analysis is based on the Health Workforce Data available on the New South Wales Department of Health website. It identifies the trends in numbers of palliative care physicians, registered palliative care nurses and enrolled palliative care nurses working in the major cities and the inner regional, outer regional and remote areas of the state. It also looks at factors such as the age and gender of the workforce, and the average hours worked per week.
There are limitations on the data, but the analysis highlights some stark findings. In the seven years to 2020, there was little improvement in the number of palliative care physicians resident in outer regional and remote areas. It seems that for most of those years, the number of palliative care physicians resident in these areas was zero. Over the same period the number of palliative care nurses increased significantly in inner regional and outer regional areas, but for most of those years it seems there were none resident in the remote parts of the state.
The workforce shortage in palliative care, particularly in outer regional and remote areas of New South Wales, raises serious questions about equity in the provision of palliative care and access to it. This is a significant problem in its own right. It also raises serious questions about legalising euthanasia and assisted suicide in a situation where access to palliative care for those at the end of life or suffering from a life-limiting illness is neither universal nor equitable.
This concern is only deepened by the importance the Voluntary Assisted Dying Bill 2021 places on equality of provision and access to assisted dying across the state. The principles of the Bill set out in clause 4 include specific reference to this:
“a person who is a regional resident is entitled to the same level of access to voluntary assisted dying as a person who lives in a metropolitan region” [c.4(1)(i)].
The importance of this objective is underscored in the Bill by expressly including it among the information to be gathered about the operations of the assisted dying system. Among other matters, the Voluntary Assisted Dying Board must “record and keep” statistics on:
“participation in the request and assessment process, and access to voluntary assisted dying, by patients who are regional residents” [c.176(1)(c)].
Equal access for regional areas is also expressly highlighted as one of the principles that must be considered in the second anniversary review of “the operation and effectiveness” of the law, and in the five-yearly reviews that would follow it [c.190(2)(b)].
Respect for individual choice and autonomy, especially when someone is suffering and nearing the end of their life, is a major foundation of the case for euthanasia and assisted suicide. However, if there is no effective access to palliative care for some people, whether they are in the regions or in the cities, it is difficult to see how ensuring that assisted dying is available to all offers suffering people a genuine choice, or genuinely respects their autonomy. If the choice is between assisted dying on the one hand, and the absence of effective pain and symptom control and accompaniment by family and carers on the other, it is a false choice and one which it is unjust to offer.
Respect for autonomy and choice are included in the important principles set out in clause 4 of the Bill, as is the entitlement to high quality end-of-life and palliative care [cl.4(1)(b),(d) & (h)]. The principle of choice is particularly important in considering access to healthcare services for people in regional and remote areas:
“a person is entitled to genuine choices about the person’s care, treatment and end of life, irrespective of where the person lives in New South Wales and having regard to the person’s culture and language” [cl.4(1)(h)].
These principles will not be properly respected, or properly meaningful for people at the end of life, unless high quality end-of-life and palliative care is available for everyone who needs it in New South Wales.
Even with perfect choice and autonomy, and perfect provision and access to palliative care, there are a number of decisive reasons for opposing euthanasia and assisted suicide. Considered solely from a public policy perspective, however, the proposition we should start from is it that before a community decides to take a momentous step such as legalising assisted dying, governments and law makers should ensure that everything possible has been done to address the significant inequities in the provision of palliative care and access to it, not least of all for people living in outer regional and remote areas.
22 November 2021
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