With the recent release in New Zealand of Philip Nitschke’s book on voluntary euthanasia, The Peaceful Pill Handbook (written with Dr Fiona Stewart and published in January 2007 but banned in Australia), it is timely to look at ethical issues surrounding the end of life. This article is an excerpt of one published in the Nathaniel Report , April 2008.
In western societies, palliative care is most commonly requested for cancer, but care is required for people with many other illnesses like heart failure or motor neurone disease. Not everyone who dies requires palliative care, but all health professionals are expected to have some expertise in care for a person as their life nears its end and care is now offered in hospitals, palliative care units, nursing homes, outpatient clinics and in the person’s home.
The understanding of care that is required when someone is facing the end of their life involves their whole person. Taking care of the physical symptoms like pain is essential to comfort, but it is also important to care for the person spiritually, emotionally and socially. Palliative care also situates the ill person in their social context so family members and others involved in their care are an important consideration.
There is now a considerable body of expertise in caring for people facing the end of life with people dying in much better circumstances than ever before. However, critics suggest that the current levels of knowledge are insufficient to assure the community that no one will die suffering needlessly. While it is impossible to absolutely fulfill this requirement, the dying person is assured that the vast majority of people now die without pain, comfortably and with dignity.
Issues for palliative care services
Like many aspects of health care, funding levels struggle to keep up with demand and in New Zealand, as in Australia, services rely on often insufficient levels of government funding, supplemented by fundraising.
In addition, many think that being referred to palliative care means that a person is about to die. Many health professionals still regard death as a medical failure and they may be loathe to refer a person who may benefit from palliative care.
The skills of palliative care encompass the very end of life, but are also invaluable in helping people with symptom management, social support, counselling, pastoral care and volunteer supports at any stage of their illness. Palliative care aims to keep a person as independent as possible with the best quality of life possible at all stages of disease.
The right to choose
The long accepted right for people to make informed decisions about their medical treatment is seen as leading to the right to ask for medical help to die. A review of seven cases of euthanasia when it was legalised in the Northern Territory of Australia, found major concerns not only with physical and mental decline but with the process of dying rather than a concern about the fixed point of death. Researchers argue that death with dignity is possible if dying people are able to maintain their sense of self respect. Understanding this is a key role of palliative care.
There is a group of vulnerable people in the community who seek to end their life because of the mistaken belief that this is the only way to relieve their suffering. Whether from ignorance, a lack of referral or simply that the palliative care service is not able to meet the need, these people think there is nothing more that can be done for them. Of the seven Northern Territory cases of euthanasia, three of the patients were described as socially isolated and symptoms of depression were common.
In addition, the authors identified a range of medical opinion as to the nature of the patients’ terminal illnesses. While there are inadequacies in the service system and funding deficiencies, there is no room for debates about changing the law.
Those who advocate for the legislation of euthanasia by capitalising on the community’s fears about what may happen to them at the end of life, do not present a balanced view of what is available for terminally ill people. Being in control of one’s death does not necessarily guarantee the preservation of dignity, and conversely not being in control of when one is to die, does not mean a person will die without dignity.
In the palliative care settings of hospital, hospice and the home, although there is often talk about death, requests for assisted suicide are few and far between, with studies identifying that only 1% of dying patients actually make explicit requests. In one study of 102 consecutive patients in palliative care, there was not one recorded request for euthanasia; a fact attributed to high levels of family support for most of the patients. This does not mean that palliative care health professionals should ignore the issue of euthanasia. Instead, services should be appropriately resourced to offer comprehensive and skilled care for patients so that requests for hastened death can be responded to professionally and with compassion.
Issues of death and dying are of concern to the whole community. Legalisation of euthanasia would only address a very small part of the challenge that faces our community.
Professor Margaret O’Connor (pictured above) is Vivian Bullwinkel Chair in Nursing, Palliative Care and Dr Susan Lee is Senior Lecturer, School of Nursing and Midwifery, Monash University, Australia.