Does dying with dignity always mean actively ending life?

Professor Margaret O'Connor and Dr Susan Lee
Issue 24, April 2008

Our daily papers perennially carry lead articles about aspects of controlling one's own death. Provocative articles, occurring so regularly, might make one wonder if the community's fears about dying are justified. Perhaps in our desire to squeeze the most out of life, together with the seduction of medical technology that promises a longer life, has made some of us uneasy about just how our own end will come. Isn't this the skill of palliative care and if so, how is it that we never hear about it? Whilst one would not want to negate the arguments about an individual's rights within a demographic society, there are several other aspects of care at the end of life that are worthy of consideration.

The expertise of palliative care

Palliative care is the care that is provided for a person who has been diagnosed with an illness that will end their life. In western societies, this is most commonly 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 it is expected that all health professionals should have some expertise in care for a person as their life nears its end. We now see examples of palliative care being offered across all health care settings – in hospitals, palliative care units, nursing homes, outpatient clinics, as well as 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. So while taking care of the physical symptoms like pain is essential to comfort, it is also important to care for the person spiritually, emotionally and socially. Palliative care also situates the ill person in their social context and so family members and others involved in their care are also an important consideration. The body of expertise that has been developed over the last 30 years or so, in caring for people facing the end of life is now considerable, with people dying in much better circumstances than ever before. However, critics of palliative care 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

The continuation of excellent palliative care for people at the end of their lives now faces a number of challenges. Like many aspects of health care, funding levels struggle to keep up with demand and in New Zealand and also Australia, services rely on often insufficient levels of Government funding, supplemented by fundraising.

In addition, a recent discussion in the Journal of Palliative Medicine (Arnold, 2005; Milne, Schofield, Jefford, Wein, & Aranda, 2006) that palliative care has an image problem – many in the community think that if a person is referred to palliative care it means there is no hope for them and that they are about to die. Not only is this a perception of the community, but many health professionals still regard death as a medical failure, meaning that they may be loathe to refer a person who may benefit from palliative care. The skills of palliative care quite rightly encompass the very end of life, but are also invaluable in assisting 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 and all stages of disease. The earlier in the course of a person's life limiting illness that palliative care commences, the greater opportunity for good assessment of needs and successful intervention with problems. In the midst of these supply and demand issues, comes the push to legalise euthanasia. The focus of this push is that the long accepted right for people to make informed decisions about medical treatment for themselves ought to be extended to the right to make an informed decision to be medically assisted to die. In a review of the discourse of textual material associated with the seven cases of euthanasia, when it was legalised in the Northern Territory of Australia, Street and Kissane (2001) 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. They argue that death with dignity is possible if dying people are able to maintain their sense of self respect (Street & Kissane, 2001) . Understanding this is a key role of palliative care. While there seems little argument from most professionals who work in palliative care about the rational choice arising from a long-held belief of some people to end their life, there is never-the-less, a group of vulnerable people in our community, who require particular attention. These are the people 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 reviewed by Kissane, Street and Nitschke (1998) , 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 capitalizing 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 (Hudson et al., 2006) . In one study of 102 consecutive patients admitted for palliative care, there was not one recorded request for euthanasia; a fact attributed by the authors to high levels of family support received by most of the patients (Vitetta, Kenner, Kissane, & Sali, 2001) . This does not mean that palliative care health professionals ignore or 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.

In a recent review, psychological, social (eg support for family caregivers) and existential concerns were just as prominent as physical symptoms such as pain, as reasons expressed for requesting assistance to die by patients (Hudson et al., 2006) . This research reinforces the importance of having multidisciplinary health professionals who are skilled in these aspects of care available to patients and their families, whether in the home, in hospital or in aged care facilities.

Issues of death and dying are not confined to particular individuals; they are issues of concern to the whole community. There is still a long way to go in providing timely and appropriate care to those who need it at the end of their lives and from our experience, legalisation of euthanasia would only address a very small part of the challenge that faces our community. The debate about choice at the end of life would benefit from a broader scope, to encompass choice about where to receive care, choice about the sort of treatment one desires and choice about where to die.

We should be proud of the discipline of palliative care as it has developed over recent years. We need to be vigilant that funding constraints do not precipitate models of care that are less than excellent, or force people to decide to end their life; keeping in mind that people facing the end of life are a very vulnerable group in our community.

References

Arnold, R. M. (2005). Half-Full or Half-Empty: Making the Message of Palliative Care Palatable. Journal of Palliative Medicine, 8(3), 474-476.

Hudson, P., Kristjanson, L., Ashby, M., Kelly, B., Schofield, P., Hudson, R., et al. (2006). Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review. Palliative Medicine, 20, 693-701.

Kissane, D., Street, A., & Nitschke, P. (1998). Seven deaths in Darwin: case studies under the Rights of the Terminally Ill Act, Northern Territory, Australia. The Lancet, 352, 1097-1101.

Milne, D., Schofield, P., Jefford, M., Wein, S., & Aranda, S. (2006). Half-Full or Half-Empty: A Response. Journal of Palliative Medicine, 9(1), 12-13.

Street, A., & Kissane, D. (2001). Discources of the body in euthanasia: symptomatic, dependant, shameful and temporal. Nursing Inquiry, 8(3), 162-172.

Vitetta, L., Kenner, D., Kissane, D., & Sali, A. (2001). Clinical Outcomes in Terminally Ill Patients Admitted to Hospice Care: Diagnostic and Therapeutic Interventions. Journal of Palliative Care, 17(2), 69-77.

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Professor Margaret O'Connor is Vivian Bullwinkel Chair in Nursing, Palliative Care and Dr Susan Lee is Senior Lecturer, School of Nursing & Midwifery, Monash University Australia.