Health systems have traditionally been preoccupied with keeping people alive for as long as possible. While there may be talk nowadays of ‘advanced care directives’ and ‘living wills’ and ‘dying with dignity’, has anything really changed? We are very keen to hear your views on this. We are particularly interested in the views of palliative care nurses.
This is the third part in our Vision Statements series, in which we seek your input about the future of nursing and the health system. We began with aged care, followed by the challenges for disability care. This month we look at end-of-life issues.
Dying with dignity
End of life care and the sometimes passionate debates that surround it will become even more prominent as demographic changes will see the number of people dying each year in Australia double over the next 25 years.
The NSWNMA has a longstanding policy on nursing care for the person who is dying that emphasises the right of the person who is dying to informed choice, autonomy, dignity and early access to palliative care.1
Our current position would be cold comfort for those in unrelievable pain who have decided that they want to take active steps to hasten their deaths. A number of cases in Australia illustrate the legal precariousness of family and friends motivated by love and compassion who seek to assist a loved one and the many scenarios where someone who has chosen to take those final steps must do so alone in order to protect their loved ones from prosecution.
Health systems have traditionally been preoccupied with keeping people alive for as long as possible. This has led to the continuation of life at all costs, and often results in increased stress and lower quality of life which has led to debate as to the value of prolonging life for the very old or those with currently incurable conditions.
Most Australians would prefer to die at home but only 14% do. While 70% of deaths are expected, half of deaths occur in hospitals and another third in residential care.2
There has been a rise in advance care planning in recent years. As medical technology and the ability to keep people alive using potentially burdensome and invasive means have evolved, there has been an increasing realisation by patients, families and health professionals that life-prolonging treatments are not always appropriate.3
Advance care planning is a process of planning for future health and personal care whereby the person‘s values, beliefs and preferences are made known so they can guide decision-making at a future time when the person cannot make or communicate their decisions. Advance care planning is usually undertaken within a health or aged care setting and with the assistance of trained professionals after a person has been diagnosed with life-limiting condition. It requires respect for the person and their autonomy.4
Good people dying bad deaths
Andrew Denton is working hard for policy change to allow people to end their own lives with medical assistance prompted by the slow painful death of his father. Andrew will be presenting his case at NSWNMA Professional Day on 20 July. He has also put together a 17-episode podcast called Better Off Dead5 investigating the stories, moral arguments and individuals woven into discussions about why good people are dying bad deaths in Australia.
A recent episode of Compass, ‘A Good Exit: who decides’6 has also sought to tease out some of the complexities of dying in Australia today with a range of perspectives, including Denton, a Professor in ageing, ethics and medical decisions at end of life, a palliative care physician, a Jesuit priest and professor of law and an ethicist researcher and educator. While it is regrettable that a consumer perspective was not included, it is a worthwhile program for those interested.
We are very keen to hear your views on this and related topics. We are particularly interested in the views of palliative care nurses.
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- Dying Well – Swerissen, H and Duckett, S., 2014, Dying Well. Grattan Institute
- Better Off Dead – Denton, A. 2016
- A Good Exit: Who decides – ABC Compass
- AHMAC National Working Group, A National Framework for Advance Care Directives, Consultation Draft, September 2009