Our Lives Are Worth Living: An Open Letter to the Premier of South Australia

Mon, 20 Dec 2010 09:02:00 -0500

I write this letter to you in my own name only and not in the name of my institute, of any government committees in which I am involved, or of any organization. I write because what happens in South Australia on this matter will affect all Australians, particularly those who, like me, meet the requirements of the Voluntary Euthanasia Bill 2010 now before the South Australia n State Parliament.

Relevant to this matter is the fact that I am dealing with my own terminal illness (a combination of renal failure, advanced ischaemic heart disease, and Rheumatoid auto-immune disease) and am dependant on haemodialysis and palliative care. I have undergone fifteen angioplasty procedures and the placement of eight stents to attempt to recover some blood flow after the failure of coronary bypass surgery. The last such procedure was unsuccessful as the blocked artery could not be accessed. The Rheumatoid disease causes chronic pleuropericarditis.

I mention these matters only to establish that I am no stranger to suffering and disability and am well aware of the limitations of palliative care. It is particularly difficult to control chronic pain because the effectiveness of most forms of pain relief is of limited duration, given the development of therapeutic tolerance. I have reached the limits of what palliative care can offer.

I cannot speak for all people who suffer from illness and disability, but think I can speak more credibly about suffering, illness, and disability than those people who advocate for euthanasia presenting an ideological view of suffering and disability. Facing illness and disability takes courage and we do not need those euthanasia advocates to tell us that we are so lacking dignity and have such a poor quality of life that our lives are not worth living.

Professionally, I have been involved with issues to do with the care of the terminally ill for many years, having been Australia’s first hospital ethicist, twenty-eight years ago, at St. Vincent’s Hospital, Melbourne, where I was also Director of Bioethics for a period of eight years. Since then I have been a consultant ethicist in private practice and have taught ethics in the medical faculties of the University of Melbourne and Monash University, before taking my current position at the John Paul II Institute. The Institute is associated with the Lateran University in Rome and is a registered Higher Education Provider in Australia offering accredited specialist graduate courses in bioethics and in theological studies in marriage and family.

Also relevant is that recently I had the experience of chairing a National Health and Medical Research Council (NHMRC) Working Committee preparing guidelines for the care of people in an unresponsive state or a minimally responsive state and receiving a large number of public submissions on that topic. The topic is closely related to the topic of your enquiry.

The strength of submissions from people who care daily for Australia’s most dependant and needy individuals was overwhelming and I highly recommend that you read the public submissions on the NHMRC’s website or at least read the NHMRC’s Ethical Guidelines for the Care of People in an Unresponsive State or a Minimally Responsive State (2008). Importantly, the guidelines provide a careful analysis of the way in which care decisions may be made so as to preserve respect for the dignity and worth of people who are so profoundly disabled and to provide care for the families and others who care for people with PCU or MRS.

I have also had a long-term association with a home hospice service that serves the eastern area of Melbourne. I would like to record my own view that it would not benefit seriously ill South Australians, particularly those who are terminally ill and suffering intractably, if the Voluntary Euthanasia Bill became law. The current legal situation in South Australia, while not perfect, does provide a measure of protection against the terminally ill being regarded as a burden. As a chronically ill person I know well what it is to feel that one is a burden to others, to both family and community, how isolating illness and disability can be, and how difficult it is to maintain hope in the circumstances of illness, disability, and severe pain, especially chronic pain.

For several years, until I objected, I received from my health insurer a letter that tells me how much it costs the fund to maintain my health care. I dreaded receiving that letter and the psychological reasoning that would seem to have motivated it. Each year I was reminded how much of a burden I am to my community. The fear of being a burden is a major risk to the survival of those who are chronically ill. If euthanasia were lawful, that sense of burden would be greatly increased for there would be even greater moral pressure to relinquish one’s hold on a burdensome life. Seriously ill people do not need euthanasia.

We need better provision of palliative care services aimed at managing symptom s and maximizing function, especially as we approach death. Rather than help to die, the cause of dignity would be more greatly helped if more was done to help people live more fully with the dying process.

The proposal to make provision for a terminally ill person who is suffering to request, and a doctor to provide, assistance to die makes it less likely that adequate efforts will be made to make better provision for palliative care services. Legalized euthanasia would give those responsible for funding and providing palliative care a political “out” in that respect.

In Australia, too little is done to make adequate palliative care available to those who need it:

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Our Lives Are Worth Living: An Open Letter to the Premier of South Australia