Faithful to the Last: Contemporary Issues in Dying, from the Perspective of Pastoral Theology by Bridget Woollard
Trinity Papers Number 2
Trinity College
The University Of Melbourne
The Revd Bridget Woollard, an ordained priest in the Church of England with wide expertise in pastoral theological education, was Noel Carter Visiting Lecturer in Pastoral Theology at Trinity College in 1998. Revd Woollard presented the inaugural Noel Cater Lecture in Trinity College on 20 March 1998, exploring the complex relationship between medicine, the law, ethics, and the practice of contemporary pastoral theology. She makes a case for a relevant theological response to the experiences of death and dying that reasserts the role of faith within the framework of modern medical and social attitudes.
This paper represents the second in a series prepared by Trinity College which focus upon broad issues facing the community in such areas as education, ethics, history, politics, and science.
Faithful to the Last: Contemporary Issues in Dying, from the Perspective of Pastoral Theology In thinking about healing there are three disciplines with very long traditions that we inherit today: medicine, the law and theology. A secular world is, I think, more comfortable with the trio of medicine, the law and ethics but I want to argue that we risk loosing something of our humanity if we accept that change without question, exploration and attempts to contribute to our societies today. Indeed it might also be that we also loose something of the heart of theology. As Roberta Bondi put it in the introduction to her book, Memories of God, ‘Theology is about saving lives… it involves learning to see the ways in which false images of God, ourselves, and the world have bound us and taken away the life God intends for us… it involves learning to know God as God is, as a healing God, and learning to know ourselves, individually and communally, as people who correspond with that God in whose image we are made… it involves imagining a future that is consistent with the God we come to know.’1 I have chosen to focus on the process of dying because I think here the issues I want to explore tonight are most sharply focused. Also the fact of death remains a universal reality in a post-modern world how ever varied our beliefs, customs and denials with which we surround it. Dying faces us with the realities of what others give us. In violent death we see the outworking of aggressive behaviours. In accidental death we see the consequences of human error, irresponsibility and maybe what seems sheer bad luck. In dying through illness or old age the care or lack of care we receive is the work and the gift of particular people, be they professional, voluntary or kith and kin. The nature of that care or lack of care is also the product of culture, social assumptions, the politics of the distribution of resources and the economics of the market place. Indeed the process of dying could be thought about as an experience where public and private meet in our very selves in an acute way and habitual privacies disappear never to return. In this lies fear for many people. The content and practice of medicine, of law and of theology are all to some degree socially and culturally shaped, yet, at the same time, are all deeply concerned about the care, management and oversight of human living. How we think about, interpret and organise the world in which we live, draws on technical expertise, codes of right behaviour and their supporting legal frameworks but these alone are not enough. Affective relationships between people are integral to living. Beneath these are both thought out and unconscious assumptions about how things are and what matters most. The spiritual quest is perhaps the only place where all these varied perspectives can find inter-relationship. But social developments can make this hard to see. The developed technological world rejoices in enormous competencies but struggles with the times when the sense of mastery and autonomous choice and control is challenged.
1. R.C. Bondi, Memories of God - Theological Reflections on a Life, (London: 1995), p. 11 2
Richard Niebuhr saw suffering as ‘the exhibition of the presence in our existence of that which is not under our control, or of the intrusion into our self-legislating existence of an activity operating under another law.’2 The reality of death and dying is something not under our control though there are many choices that can be made which influence circumstance and timing. Whether death and dying are an intrusion into our self-legislating existence of another law depends very much on the laws we have chosen to live by. There are many anecdotes of people recovering from serious illness and near death experiences who choose different ways of living, after their illness, in ways that cannot simply be equated with medical necessity. There are psychological sayings to the effect that no-one is truly adult until the earlier generations of their family have died, that reflect human reluctance to face mortality until it becomes an immediate and obvious reality. None the less social pressures can put fences round the quest, pressures not to talk too long about death and dying are real. Yet I think some people do want to talk about it. I have been quite fascinated how many conversations about death and dying have spontaneously begun close by me in the last week as this lecture has approached. I wonder if consultation and debate leading to the passing of the Medical Treatment Act of the Victorian Parliament together with intense controversy following the Northern Territory Act of 1996 have brought dying and death right into the arena of public life and liberated Victorians to talk about these things across a meal table or in the pub. In England the Anglican clergy still conduct the funerals of a very large majority of the population. As new curates find themselves regularly, probably fortnightly in an urban area, involved with bereaved families and making the journey to the cemetery chapel or crematoria to take the service, they inevitably find that death and dying become part of everyday life and in a way that is strikingly different to most clergy’s previous experience. Death becomes in a sense normal rather than an extraordinary event that cuts across everything else that was happening at the time. Birth and death have a very particular capacity to claim the total attention of those closely involved, in a way that for a short while excludes all else. We have choices as to how much we let these realities define the nature of things and how much we limit our selflegislating existence to the more readily controllable. They hold before us the limits of our ability to control. A couple of years ago I was in a workshop with an American psychotherapist who talked of the work she needed to do not to feel guilty about having breast cancer. As she saw it, affluent America places such emphasis on the power and responsibility of the individual that increasingly illness is experienced as a personal failure. If one had eaten the right diet, exercised frequently, consulted the appropriate therapist, educated oneself enough then all ought to be well and the individual healthy and successful. She described finding herself checking through all these. If the individual is responsible for every aspect of his or her life then there can be a gut sense that this includes sickness too. This is a seeming reversal of Cranmer’s perspective in the 1662 Book of Common Prayer order for The Visitation of the Sick. There the minister is instructed to exhort the sick person with the words ‘Dearly beloved, know this, that Almighty God is the Lord of life and death, and of all things to them pertaining, as youth, strength, health, age, weakness, and sickness. Wherefore, whatsoever your sickness is, know you certainly, that it is God’s visitation… Such words can be and have been heard to refer to some deity who dispatches illnesses and death at the time of his choosing in which humans may or may not see any purpose or meaning. That is not though the essence of Cranmer’s text. It is an affirmation of Presence, of the reality of the active Presence of the Lord of Life and Death.3 The contemporary American and the 1662 view can be contrasted not only in a crude split between human and divine cause and effect but more interestingly in the difference in the fundamental affirmation. In one there is nothing but the individual figure struggling alone in the universe. In the other there is affirmation of the divine drawing close no matter how distressing and confusing the circumstances. Visitations are undoubted events in ecclesiastical language. Other than sickness in Cranmer’s prayer two others come to mind. The annual visit of the Archdeacon to the parishes to check on ecclesiastical housekeeping and inventories and the festival of the visit of Mary, pregnant with Jesus, to Elizabeth, who is carrying John, in Luke’s infancy narratives. The presence of the person and what they represent is paramount in a Visitation. It is striking to note that in England and America, and I think to a lesser extent in Australia, that where as people generally enjoy a degree of health and longevity beyond the imagining of earlier generations, at the same time, in the last three decades, there has been a considerable revival in healing ministries within the Church. It is a complex phenomena and any one interpretation of what is happening would probably not do it justice. It includes public and private prayer, pastoral counseling, support groups of various kinds and most recently involvement in patterns of community care. A range of theologies under gird different approaches. 2. H.R. Niebuhr, The Responsible Self, 1963, p. 60: quoted in S. Hauerwas, Rise of Medical Ethics in Suffering Presence, (Indiana: 1986) 3. In the Roman Catholic Tradition a long history of prayer addressed to God through Mary also makes an affirmation of presence: “Hail Mary, full of grace, pray for us sinners now and in our time of deaths.” 3
It is clear that for significant numbers of people there is a need for something complementary to what is provided by medical and other health care professionals and to even the best schemes of community care. This something has to do with prayer, spirituality and resources for coping with stress. Ten years ago a colleague and I rewrote the curriculum for mission and pastoral ministry for the college where we worked, preparing men and women for ordained ministry in the Anglican, Methodist and United Reformed Churches. The students had one corporate complaint: we had omitted to provide a course on the Church’s healing ministry. The two week module I produced in response to the delegation was well attended and clearly important to these ordinands in developing their understanding of their future role. It may well be that the Church is one of the places where people can seek something to complement a growing societal emphasis on the individual. Community care needs community networks. People in distress need respite from their struggle towards finding their resolutions. In both England and Australia the Church clearly provides an institution for public response to death, tragedy and disaster. The death of Princess Diana is the most recent notable example with services and memorials here in Melbourne and even more so in England. Hobart Cathedral at the time and at the anniversary of the Port Arthur shootings, Dunblane Cathedral in Scotland following the massacre at the local school, Winchester Cathedral after the Clapham Junction train disaster and the list goes on. It could be said that the Church is, when needed, a place for the wider society to be with profound experiences of life not being controlled, of normal selflegislating existence being invaded by events acting under another law. Other expansions belong to this period. Medicine itself has made huge strides. Life expectancy has increased, some diseases have been eradicated, infant mortality greatly reduced in the developed world, new drugs discovered and a wide range or treatments and procedures made available a number of which depend on advanced technology of various kinds for both diagnosis and treatment. Many live who in former generations would have died. Yet in some respects questions of life and death have become more difficult rather than easier. The range of possible responses to a particular situation is far larger, particularly when financial and other resources are available. Within the care of the certainly terminally ill, there are many shades of possible meaning to the phrase ‘allowing nature to take its course’ as well as voices which ask ‘why do so?’ Biomedical ethics is an ever expanding discipline. In the United States of America it is becoming a significant profession with practitioners employed by hospitals, insurance companies and professional groups. On the one hand there is a need to give attention to difficult treatment decisions: whose wishes should be considered? who decides? what principles are relevant? who pays and how much? what when medical opinions differ? On the other, there is a struggle to live with the uncertainties of outcomes in a litigious and resource limited world with the realities of mortality and death. Last year I spent five days in Washington DC with a group engaged in visits to politicians, government policy and research persons and elected representatives, church lobbyists, hospital chaplains and an hospital ethics committee chairman, the American Medical Association (the doctors’ professional body) and Lutheran church social services. I rapidly became aware that there are marked differences in the ways in which ethical issues are experienced in the United Kingdom and the United States. The countries share similar technologies and levels of expertise but the political and financial structures are very different. The British are more trusting of doctors as a profession. The slogan of ‘universal health care’ will rally concern across social class and political party and unify us probably more than any other aspect of our national life with the possible exception of Princess Diana’s death. We may of course disagree bitterly about decisions as to where our local hospital should be, which should grow and which should close and there have been long term inequities in the system between regions and between social groups. But it is a system we own as ours and many trust. Universal health care is a much more politically complex concept in America and in some quarters it was clearly a nonconcept, far removed from pragmatic realities and not talked about by sensible people or nonsocialist people. Amongst those we spoke to, only the church representatives spoke unambiguously in favour of it. A few other persons we met might dream of it in their capacities as private individuals. The American Medical Association representative seemed to say yes in a way that made one immediately mindful that it was not a simple matter for his organisation. Who pays how much for whom in a society where a significant proportion of the population are not covered either by insurance and its financial equivalents or by federal provision? My understanding of Australia comes primarily from reading a daily paper and it seems to me that attitudes to universal health care here are somewhere in between the American and the British. Not everyone is convinced of its value. Or as Alan Nichols sees it ‘the community conviction of the benefits of universal health cover seems to be fading.’4 4. A. Nichols, Life and Death Decisions - Teach Yourself Ethics, (Melbourne, 1997) p. 71 4
Methods of funding affect not only who has access to health care but what is recommended when access is gained. Fee for service systems encourage providers to provide and Americans seemed to be significantly more fearful of over intervention than the British. When doctors manage a limited budget across a population there can be an incentive to share information with patients knowing that some will voluntarily select themselves out of costly procedures if they are treated as decision making persons. Where American Health Management Organisations (HMOs) defined the running we heard of ‘gaging issues’. It was alleged that some HMOs tried to prevent doctors telling patients about particular treatments, contrary to the doctor’s best clinical judgment, because of not wanting to pick up the cost. Methods of financial management have health and ethical implications. Some of these can get quickly characterised as the logic of the market place, others are seen as more sociopolitical. The one area where the American system seemed to offer more across the board than the British was in the care of those over sixty-five years of age. In America everyone becomes eligible for Medicare at sixty-five, though this is increasingly under review and debate. In England a labeling process begins which makes it progressively more difficult to access more expensive surgery and other resources. Societies and individuals face real choices here and the separation of economic decision from the social in public thinking is potentially dangerous. When medical costs are charted over a lifetime the substantial majority of expenditure occurs in the last two years of life. Debates on cost management impinge directly on the closing chapter of people’s lives. What social investments in policy and attitudes have been made shape the climate of the second most vulnerable period of our lives. Or looked at another way legal euthanasia is not financially or socially neutral or purely a private matter. Individual rights can have significant public consequences. When the campaign for the complete deregulation of Sunday Trading was at its height in England in 1992 and 1993 some stores sought to actively recruit their customers as campaigners to counter other interest groups such as the Churches and the Trade Unions. One major supermarket distributed leaflets encouraging shoppers to write to their Member of Parliament asserting their right to shop when they wished. If my memory is correct there was also the possibility of signing a petition in the store. Nowhere in this publicity was there a warning that there was a cost involved in choosing to exercise this right. Smoothing the weekly hump in deliveries might be a cost saving but overheads would increase overall and food costs were likely to rise. Smaller shops, particularly family businesses, might well be unable to survive the competition of seven day opening and would have to close resulting in a loss of utility to all consumers and so on. I am concerned that there are wider consequences of legislating for a form of legalised euthanasia, particularly when the discourse of individual rights is used. The economic argument could be made that those choosing such an option should have a right to reduced health care insurance as their overall cost on the system is lower. The ultimate consumer choice might emerge: foreign travel now or palliative care later? In this scenario, eventually life itself becomes a consumer option. Individual choice is also socially problematic. What response should be made to the one who goes for the low cost option and who when serious ill health emerges then decides to exercise a right not to choose euthanasia after all. Who picks up that bill? The search for a sufficient consensus for the formation of public policy in deeply pluralist societies has however fed the growing importance of the concept of autonomy. Also it maybe attractive as a counter to a perceived historical paternalism in the medical profession, particularly when people are frightened, finding themselves caught up in alarming diagnoses and issues beyond their direct control. The consequences however are far reaching. Meilaender, an American Lutheran, argued in Body, Soul and Bioethics5 that bioethics, in its attempt to forge public policy, has lost the soul. He charts the emergence of a vision of a person as one who is, or has the capacity to be an autonomous chooser, taking control over one’s personal history, determining its bounds and limits.6 This vision is incompatible with Christian understandings of the Creator and the created. It also seems to deny the processes of growth and aging which shape our lives in ways that we cannot control and determine. Who has managed to stay forever in the condition they were at twenty five? Many discussions of medical ethics draw on four general principles which in terms of general methodology are not unlike the middle axioms of Temple’s social theology. They are autonomy, non-malfeasance, beneficence and justice. The theological community tends to nuance each of these in their meaning and application. They form good pillars of principle for discussion in the secular world and in religious contexts but again the sharpest issues are in the area of autonomy. In thinking about these issues I found myself beginning to question my own Anglican tradition. Anglican method has a strong tendency to seek the tradition, scripture and experience in public contributions in ethics and social thought is for the good of all, Christian, unbeliever and other believer alike. However to understand life as a journey of 5. G.C. Meilaender , Body, Soul and Bioethics, (Indiana: 1995) pp. 18-29 & 37 6. Meilaender , Body, p. 52 5
faith towards the open hands of God is a perspective of faith. To the Christian dying may be the most radical act of faith. As Burghardt put it ‘All the bitter-sweet of earthly living is brought together and offered to God in my most radical act of faith, my supreme act of confidence, my act of love without parallel. I die only to live.’7 What then is appropriate for the person of no faith? The question of appropriate use of medical and scientific knowledge raises much more. What does it mean to be a person, a human being? How are experiences of pain and suffering best lived with? What is the purpose of life and the significance of death? This is more than ethics narrowly defined. These are spiritual and religious questions and the major world faiths can rightly be expected to contribute from their beliefs, doctrines and theologies. Within particular communities of faith there maybe support for living out particular responses. These will need some translation if they are to communicate in a secular discourse. But even in the relatively homogeneous world of the Anglican Communion there is plenty of debate in progress. Looking through a review of the moral teaching of the Episcopal Church of the United States of America on a wide spectrum of issues 8 my English eyes were struck by the frequent use of appeals to Liberty in church documents. With a national identity built on Life, Liberty and the pursuit of happiness and ‘Liberty - in God we trust’ stamped on the coinage this is not altogether surprising. Cultural contexts do influence theological arguments. It thus to be expected that for some Liberty and autonomy will resonate in this debate. Could the concept of ‘mateship’ become significant in Australian theology and ethics? Christians have long been supportive of care for the sick and the dying. Relieving pain even when the drugs also shorten life has generally come to be been seen as a part of dying well. Pain and suffering are not thought to be an expiatory working towards the lessening of sin as they can be presented in Islam.9 But neither is suffering the ultimate evil to be avoided and eliminated at the cost of life itself. Nor is life ultimately sacred in a way that it should be preserved and sustained at all costs for as long as possible. Martyrology has long born witness to beliefs stronger than life itself. Unless shelter is taken behind some absolute non-interventionist position, which personally I cannot adopt, decision making becomes complex and also progressive. Dying might be likened to the gradual changing down of the gears so an engine looses speed and eventually idles away to nothing. Pain relief to relieve stress in one part of the system is likely to bring extra pressure to bear elsewhere and move the shutting down process on to a further stage. Is this fundamentally different to a decision to intervene powerfully and bring about instantaneous shutdown: a crash landing rather than a gradual coming to rest at the end of the runway, brakes well on? I hold the belief that it is. I realise that I am influenced by having taken decisions about no further surgical intervention on behalf of a close relative who, whilst in many ways able to do so, chose to opt out of making the decision for himself. As I made the decision on the basis of the information the specialist gave me my mind was full of scientific likelihoods and statistics, of the psychological challenges attached to various interventions, of intuitions about the patient’s likely responses and a deep desire to minimise distress first for him but that could not be entirely separated from that of his wife, herself a patient in the same hospital, and others closely involved. Nearly a decade later I have a different awareness distanced now from the immediacy of all that pain. An awareness it was quite impossible to have at the time. Somewhere in that decision I was touching what I can best describe as the stream of life, getting unusually close to the heart of what it means to be. If you have taken decisions about ceasing treatment for your parent or your child you may know something of what I am trying to put into words. It calls us to act out of our deepest selves, to in some way preside over death and to give of ourselves to what is happening. It is to make a profound statement about life as well as death. Suicide in any other context than death may be understandable or very hard to understand but the vast majority of people want to think of it in terms of tragedy or illness or some other description of life not being what one would want it to be. In terminal care there can be some very hard cases. Most pain is controlled for most people most of the time but there are the exceptions. I was chaplain to a medical school for a brief period in the 1980s. It was long enough to know through listening to students on rotation among a number of hospitals that from time to time there are some very difficult situations indeed. These too are the instances of things instinctively not being how one would want them to be. The response though I want to make is not to push for legislation that normalises ending them quickly but to put that sense of protest into pushing for research and resources that helps them not happen again in the future. It is too easy to create a world where we pressure one another to tidy away all that makes great demands.
7. W. Burghardt, Concilium, 1991/3, pp. 65-71 8. T. Sedgwick & P. Turner, Eds., The Crises in Moral Teaching in the Episcopal Church, (Hartford, 1992) 9. Active Euthanasia, Religion and the Public Debate, (Parkridge Centre for the Study of Health, Faith and Ethics, 1991) p. 52 6
Others would disagree with me. Returning to America, in 1996 the Episcopal Diocese of Newark passed a ground breaking resolution: ‘we affirm that suicide may be a moral choice for a Christian when: a person’s condition is terminal or incurable; when pain is persistent and/or progressive; when all other means of amelioration of pain and suffering have been exhausted; and when the decision to hasten death is truly informed and a voluntary choice free from external coercion. Assisting another in accomplishing voluntary death under these circumstances may be equally moral choice.’10 Writing in support of this resolution, Bishop John Spong, the bishop of Newark wrote ‘I believe that the sacredness of my life is not ultimately found in my biological extension. It is found rather in the touch and love of those to whom I can knowingly respond. When that ability to respond disappears permanently so does the meaning and value of my biological life. Even my hope of life beyond biological death is vested in a living relationship with the God who, my faith tradition teaches me, calls me by name. I believe that the image of God is formed in me by my ability to respond to that calling Deity. When my ability to respond consciously disappears, I believe the image of God has then moved beyond my mortal body. So nothing sacred is compromised by assisting my death in those circumstances.’11 This is a very different view of the person in relation to God and in relation to the body to that of earlier tradition. Is this a theologically helpful development or an example, all be it a moving one, of a person assuming control over his personal history determining its bounds and limits which if operationalised in ethics would take away from our humanity? The scriptural witness12 of his faith tradition also points to a God who knew us before we knew how to respond and whose care is not dependent on our continuing response. The Diocese of Washington brought a report 13 to its convention in January 1997 which set out points of agreement and difference between Christians who accept and reject assisted suicide. Both groups have a sense of the sovereignty of God, want to protect human dignity, want to preserve the freedom of the individual to choose how to respond to human finitude and death, see life as a gift not entirely at our disposal, see the goodness of life being in relation to broader purposes some of which lie beyond the self, agree that medicine is rightly about the relief of suffering and restoration of health, not simply the extension of physical life, and both want to care for the person in a manner that is physical, psychological and spiritual. The differences between the two groups lie in judgments about the purposes and power of God in the light of human suffering. They lie also in attitudes towards the ability of a legal framework to legislate for the full protection of people from harmful self-interest and malevolence. Some think it cannot be done, (myself included). Others think it can. Those who think it cannot join with other of differing and no faith who are deeply concerned that once begun the principles used can be extended to other vulnerable groups in society in a less than voluntary way. At its most bleak, history teaches that ordinary people can do very nasty things to each other when powerful ideologies take hold, that in their early phases have seemed benign. In 1991 a substantial survey by Van der Wal14 of euthanasia in the Netherlands reported that severe pain was a major factor in only 25% of cases of euthanasia. He concluded that loss of dignity or fear of it could well be more significant reasons for people being drawn to such responses. This is a dimension of dying in which a considerable amount can be done if resources and training are made a priority. If there are scenarios of dying in indignity that fill many with fear there is the option of not remaining passive in the face of such terror but cooperating together to make a difference. In England the care and resources available to the dying and their carers is often linked to the nature of the terminal diagnosis. Public fear of and knowledge of cancer and its consequences has led to wide spread support for the hospice movement and other ways of providing extra nursing and other care and support. Substantial sums of money are raised each year. Perhaps the time has come now to turn energy to less dramatic more drawn out paths of deterioration and seeing what can be done by the fully able and resourced for the present generation of least financed elderly and other less well supported groups. I hope too discussion will continue to grow about the experience of death and dying. Whilst intellectually so much is known most people in peacetime have relatively little contact with it compared to their forebears. Looking at lesser deaths is interesting. In my previous job I made a small study of the experiences of people who were being made redundant or taking early retirement on the grounds of physical ill health who were between forty and fifty-five years of age. Half my potential interviewees did not respond to my request for a meeting. Talking with and listening to those who did remains a vivid experience. Those who were not getting all the prizes of a status conscious consumer society 10. Report of the Task Force on Assisted Suicide to the 122nd convention of the Episcopal Diocese of Newark, 1996 11. J.S. Spong “In defense of Assisted Suicide” in The Voice: Diocese of Newark, Jan/Feb, 1996 12. eg: Psalm 139 13. Reports to Convention, Episcopal Diocesan of Washington, 1997. Are assisted suicide and euthanasia morally acceptable for Christians? Perspectives to consider. 14. Borst-Eiliers, “Euthanasia in the Netherlands”, in R. Misbin, Ed., Euthanasia: the Good of the Patient, the Good of Society. (Maryland, 1992) p. 60 7
or seeing the fruits of a career in which they had invested heavily of themselves had another story to tell. It was marked by a courage that knew despair, by times of loneliness, by questions that were many peoples questions only many never stop to ask, and by learning to live with loss and uncertainty in the hope of something better even when it was not apparent what form that something could take. Within our communities, ignored by the visibly successful, were people who were heroic in the living of ordinary life and who were becoming wise with a wisdom which would benefit others. If there is no sharing of the ways of living with suffering in everyday life then a community becomes ill equipped to face the realities of human mortality. It is a ingrained human reaction to seek to eliminate or at least to control that which is deeply frightening. For some years medical methods were used more and more to control the process of birth until voices began to say it is not an illness. Help us on the journey but do not take the experience away. Ultimately death is not an illness: can we move further into recognising the experience? Ultimately God can embrace that which haunts the human heart and mind and faith believes that the destruction and disorientation that fill Holy Saturday can and will be transformed.
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