The Voice of Your Despair

Rod MacLeod
Issue 13, August 2004

"Can I see another's woe and not be in sorrow too?
Can I see another's grief and not seek for kind relief?"

William Blake's words must surely strike a chord with all those who have followed the trial and subsequent conviction of Lesley Martin for the attempted murder of her mother, Joy. Sadly Joy Martin, an apparently private and dignified woman has had her illness, suffering and death made widely known to the New Zealand public and beyond. The trial process necessarily investigated all aspects of her initial presentation to hospital, subsequent management and the ensuing months of pain, nausea, vomiting, isolation and distress. Those who have read the deposition hearing documents, Lesley Martin's own account of events in her book and the hundreds of pages of evidence given at the trial in Wanganui in March of this year cannot fail to be moved by this harrowing account of one woman's journey through illness towards death.

Yet what have we learned from this story?

The media necessarily focused on sensational elements as they felt they related to euthanasia and "mercy killing". The trial in fact focused on detail, events as they were recorded in health records and by witnesses and on the evidence as given by all those called for the prosecution and for the defence.

What has changed as a result of all this publicity?

This family of New Zealanders has been put under the spotlight and shown to have suffered in differing ways. The health services have been shown to be unable to respond to some of the needs of that family. Perhaps the New Zealand public are just as polarised in their views as they were before the trial. In the midst of all the media frenzy about the "right to die" it seems to be forgotten that this story is all about the suffering of one woman and the subsequent pain and anguish felt by her family. Lesley Martin herself has, on a number of occasions, called for further investigation of palliative care services and their funding and availability so that this sort of tragedy is less likely to happen in the future. The fact that Ms Martin has on a number of occasions stated that she might undertake a similar course of action in the same circumstances is one example of how little things seem to have changed.

The search for justice is at the core of the judicial process. Identifying fact from fiction, truth from falsehood, is the focus of the trial process. Conjecture and supposition have no place in that search. It may be that one of the outcomes from the trial is that justice has been done with regard to Ms Martin but we need to work to ensure that there is justice in the delivery of our healthcare as well. "At its best, justice is equity which aims for or institutes an equality of rights in spite of de facto inequalities".[1] Justice, as one of the four cardinal virtues, should permeate every aspect of our lives. Compassion is a key virtue in the consideration of this situation – it can mean "to suffer with" (cf W Blake above), "fellow feeling", "participation in the suffering of others". Anyone who has read the accounts of Joy Martin's illness and approach to death must surely feel compassion. Should this compassion be extended to Lesley and the rest of her family? Of course it should. Or rather it may not be our duty to be compassionate (although some who work in palliative care believe it is to be so) but it is our duty to nurture the capacity in us to feel it.[2] Mercy is a third virtue that is relevant in this context. Compassion may be concerned with suffering but mercy is predominantly concerned with wrong-doing. Mercy requires that we understand something; again, anyone who has read the accounts of events that lead up to Joy Martin's death will truly have an understanding of the situation that had been created that led to the actions for which Lesley was convicted. People may believe that Lesley Martin was misguided or even wicked, but this does not preclude a feeling of mercy. If we are to move forward in this debate then increased understanding is needed on all sides. Mercy is the virtue of forgiveness; it does not eliminate the wrong that has been done but it does eliminate the resentment. Andre Comte-Sponville writes of mercy in terms of a mediating or transitional virtue and this is what we need if we are to improve the care of people near the end of life; mediation, discussion and conciliation.

The situation facing the Martins should not be seen to be acceptable in a society which considers its healthcare services to be adequate. Joy Martin was discharged from hospital without distressing symptoms being relieved. "Care provided did not meet the needs of the family and there were several areas where this fell short".[3] One of the most striking deficiencies was in communication. At a number of levels the communication between health professionals and between those health professionals and the family fell short of what is acceptable. A lack of agreement about which clinicians were responsible for Joy Martin's care only compounded a challenging situation. A failure to adequately explore Joy and Lesley Martin's perspectives of the situation only added to the uncertainty that surrounded that family. It was noticeable, for example, that there was no mention in any of the case records or evidence of any attempt to identify spiritual aspects of Joy's illness. Spiritual belief is an important predictor of death distress and end of life despair[4] and yet no attempt seems to have been made to address any of these issues in this case.

It is not uncommon for family and friends left caring for a person who is dying at home to think that life is becoming worthless and meaningless. Such families, and in New Zealand we have sadly seen this on a number of occasions in recent years, feel isolated and alone. It may be not uncommon either for them to feel at the end of their tether and that there is no option but to follow the course that Lesley Martin took. Surely as a society we can do better than that.

Palliative care is about embracing the physical, social, psychological and spiritual elements of wellbeing – tinana, whanau, hinengaro and wairua – and in so doing to enhance the quality of life while a person is dying. The trial of Lesley Martin, amongst other things, should illustrate that all these elements of a person's life were not addressed and that Joy Martin's life seemed to have little quality. If we are to avoid repeated calls for euthanasia to be available in New Zealand those of us who are involved with the care of people who are dying have a responsibility to speak out, to advocate for more effective care wherever people are at the end of their lives. We have a responsibility to speak out against the need for euthanasia. We must tell the stories of people who have lived well until the end of their lives. The days or hours that lead up to the end of a person's life, perhaps even the last minutes, may be the most precious and important hours of that life. There may be business to transact, gifts to be given, forgivenesses to be said, attitudes to be expressed, farewells to be made, any number of pieces of unfinished business which have to be conducted.[5] Terminating a life early robs individuals of those opportunities – no matter how sick they may be, how weak or tired they may feel, life is to be lived until the end.

The palliative care movement in New Zealand has generally focussed on the moral wrongs of euthanasia (it is not alone in the world in taking that stance).[3] We must ensure that the professions and the public at large are made fully aware of the possibilities of enhancing the quality of life until its natural end. We need to continue to press for more effective education for the professions and the public to ensure that people facing life threatening illness in New Zealand no longer have to leave it to chance to see if they can benefit from expert and compassionate care.

There should be no place for euthanasia in clinical practice in this country but in order for that to become an enduring reality we need to strive to educate, to prepare health care professionals for this challenging aspect of their work. To avoid similar situations of isolation and hopelessness happening again we must ensure that effective palliative care is available to all New Zealanders wherever they choose to end their lives.

One of the legacies of Joy Martin's death is a sense of sadness that she had to endure such physical, emotional and spiritual distress. If nothing else is to be learned from this it is that this should not happen again.

Your pain still hangs in air,
sharp motes of it suspended;
the voice of your despair –
that also is not ended: [6]

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References:

1. Comte-Sponville A. (1996). A small treatise on the great virtues. New York: Metropolitan Books, Henry Holt & Co. LLC, , p84, 130.

2. Kant I. (1964) The metaphysical principles of virtue. Translated Ellington J.W., Library of Liberal Arts, Bobbs-Merrill, p121-2.

3. Mitchell K (2004). An interview with Lesley Martin. International Journal of Palliative Care Nursing, 10(5), 218-23.

4. Speck P., Addington-Hall J. (2004). Spiritual needs in health care. British Medical Journal, 329, 123-4.

5. Mason JK (1988) Human life and medical practice, Edinburgh: Edinburgh University Press, p33-4.

6. Gunn T. (1992) Memory unsettled, from The Man with Night Sweats. London: Faber & Faber.

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Dr Rod MacLeod is South Link Health Professor in Palliative Care at the University of Otago Dunedin, School of Medicine. He was called as an expert witness at Lesley Martin's trial.