Thought provoking to the end
The 2013 AMA National Conference Policy Discussion Session Finding Ways to Provide the Best Possible End of Life Care proved to be both thought provoking and confronting for delegates, members, and other participants. We couldn’t have wished for a better outcome.
Led by the session Chair Professor Paul Komesaroff, speakers Dr Peter Saul, an intensive care specialist, Dr Kate Robins-Browne, a general practitioner and PhD student, and Professor Michael Ashby, a palliative care physician, gave frank and honest accounts of their experiences, views, and concerns in relation to the role of the doctor in end of life care.
I’ve taken the liberty in this article of highlighting what I believe are some of the most salient points raised during their presentations:
1. the health care system doesn’t respond well to the needs of those who are dying. There are several reasons for this. The demographic at the end of life has changed in the past few generations – we used to die from sudden deaths but now we predominately die much more slowly from chronic disease, usually in the acute care setting of a hospital (often including multiple hospital admissions);
As such, the experience of dying, and the experience of family members and others who support patients during the process, can be long and drawn out. While doctors predominately address the biomedical aspects of dying, there are other aspects of dying experienced by the individual including emotional, psychological and existential aspects;
2. due to this multi-faceted nature of dying, we need to acknowledge that death is not primarily a medical event. The medicalisation of death may be convenient, particularly as it includes the idea of controlling death. The current emphasis on patient autonomy encompasses the idea of control of the dying process. But autonomy is not a moral imperative, it is not universal, and not everyone wants to participate this way at the end of life;
3. for those who do embrace the concept of patient autonomy, the actual application of autonomy to end of life care is grossly oversimplified, as few patients have the capacity to make their own decisions at the end of life. While advance care planning, including the use of advance directives, is promoted as a means of supporting patient autonomy when one loses capacity, directives are often non-existent, unavailable, not sought, or not applicable to the circumstance at hand – particularly in acute care. Directives can also be problematic in that they can be burdensome, preferences change, and they can cause tension and disruption in the relationship between the patient and their family members. While advance care planning is certainly valuable and should be encouraged, it is by no means a single solution to improving end of life care and supporting patients’ wishes;
4. what is needed to provide better end of life care? We need to recognise that the barriers to improving decision-making and care at the end of life are not just, or even primarily, medical – they include social, ethical, religious, and political considerations of death and dying. Dying means different things to different people;
5. we need to engage the community in talking about death. As a society, we don’t acknowledge and prepare for death the way we used to in the past. Dying should be recognised, acknowledged, supported by all parts of the community, and palliative care should be given timely and appropriate provision for those who need it. A lot of end of life discussions and decision-making, including advance care planning, can be done in primary care, but the issue of Medicare reimbursement for these activities needs to be addressed;
6. while death may be primarily about comfort and dignity at the individual level, there are ecological and economic dimensions to death that are unavoidable; and
7. death is not an ethical dilemma, it just is.
Personally, I found this policy discussion session to have been invaluable, and greatly appreciate the time and effort the speakers put in to engaging our members on a difficult issue – but one we will all face, whether professionally or personally, during our lifetime.
Members can view the session on the AMA’s website at https://ama.com.au/live (select 9am to 10:30am session on Saturday 25 May 2013).