Religious Understandings of a Good Death in Hospice Palliative Care

Harold Coward, Kelli I. Stajduhar, Harold Coward, Kelli I. Stajduhar

• Publisher: SUNY Press
• Year: 2012
• ISBN:
  9781438442754
• Topic: Theology & Religion
• Subtopic: Psychology of Religion

Winner of the 2012 AJN (American Journal of Nursing) Book of the Year Award in the Hospice and Palliative Care category In the 1960s, English physician and committed Christian Cicely Saunders introduced a new way of treating the terminally ill that she called "hospice care." Emphasizing a holistic and compassionate approach, her model led to the rapid growth of a worldwide hospice movement. Aspects of the early hospice model that stressed attention to the religious dimensions of death and dying, while still recognized and practiced, have developed outside the purview of academic inquiry and consideration. Meanwhile, global migration and multicultural diversification in the West have dramatically altered the profile of contemporary hospice care. In response to these developments, this volume is the first to critically explore how religious understandings of death are manifested and experienced in palliative care settings. Contributors discuss how a "good death" is conceived within the major religious traditions of Christianity, Islam, Hinduism, Judaism, Buddhism, Chinese religion, and Aboriginal spirituality. A variety of real-world examples are presented in case studies of a Buddhist hospice center in Thailand, Ugandan approaches to dying with HIV/AIDS, Punjabi extended-family hospice care, and pediatric palliative care. The work sheds new light on the significance of religious belief and practice at the end of life, at the many forms religious understanding can take, and at the spiritual pain that so often accompanies the physical pain of the dying person.

Part I

Religious Understandings of a Good Death

1

Cicely Saunders and the Development of Hospice Palliative Care

Michael Wright

David Clark

Religion has had a profound role in shaping the development of the international hospice movement. It remains a vibrant force in informing the philosophy, organization, and day-to-day delivery of hospice care in many settings. It all goes back to the London-based Cicely Saunders, who by the late 1950s was well established in the intention of dedicating the rest of her life to developing a modern approach to the care of the dying. She viewed this work as a matter of personal calling. She was singularly qualified for it, having read social sciences as an undergraduate, trained as a nurse and almoner (or medical social worker), and then qualified as a physician. She had studied medicine as a third profession specifically to do something about the problem of pain in patients dying of cancer. In 1959 she was forty years old, unmarried, and a committed Christian whose evangelical orientation was beginning to broaden. One year earlier she had published the first of what would become many papers setting out her ideas on care at the end of life (Saunders 1958). She had gained experience in the care of the dying as a nurse volunteer at St. Luke's Hospital and then as a research fellow at St. Joseph's Hospice, both in London. At St. Luke's she saw demonstrated some of the principles of pain relief that she would later do much to promulgate. In particular, she became interested in the regular giving of analgesics. In St. Joseph's she had an opportunity not only to put these ideas into practice but also to develop a wider view of pain in the context of the whole person's suffering (Clark 1999). Here she also experienced a culture of religious solicitude, which fostered her belief in the dignity of dying and the care of both body and soul.

The inspiration for this work went back to 1948, when in a London hospital she had cared for David Tasma, a dying Jewish émigré from Warsaw. Together they had discussed the possibility that one day she might found a special place more suited to those in his condition (Saunders 1981). As he had told her: “I only want what is in your mind and in your heart.” His words served immediately as a fount of inspiration and later became emblematic of Cicely Saunders's wider philosophy of care, both intellectual and spiritual. Later, her links with Jewish friends and colleagues—particularly in the United States (Clark 2001)—would grow and strengthen. Her increasing knowledge of Judaism would contribute to a broadening in her own personal sense of spirituality. Likewise, the telling and retelling of the story of David Tasma would constitute a foundation myth for the hospice movement that would capture the imagination of people of many faiths and no faith at all, around the world. But as the 1950s came to a close Cicely Saunders still sought to clarify her initial ideas, striving to create a program for action and laboring to realise her vision for St. Christopher's Hospice (Clark 1998).

Absolutely central to this process was the question of the religious and spiritual foundation of the institution she was to establish. The issue had come early on to the agenda. She had first raised it in 1959 while on a retreat at the Mother House of the Church of England order of St. Mary the Virgin, at Wantage, Berkshire, in southern England. Subsequently, she gathered a group of friends and associates who might help in her quest to found a new home for dying people; she tackled them in turn on the question of religious priorities. This led to numerous meetings and extended correspondence with a clutch of evangelically inclined Anglican friends. By the end of 1960 a certain clarity had emerged sufficient to take the project forward. Though the protagonists were likely unaware of it, their deliberations were also to have a profound influence upon the later development of what became known as the hospice movement.

A good deal of initial thinking centered around the involvement in St. Christopher's of those of different “churchmanship.” Some of her associates advised her against bringing in those inclined towards the “higher” (more Anglo-Catholic) wing of the Anglican Church. Some of her close friends also held the view that the practical management of the home and the clinical work conducted within it should be undertaken by the same group of committed Christians. Indeed, there was a growing sense that this was to be both a medical unit and a Christian community. At this point the vision for St. Christopher's was something akin to that of a dedicated spiritual order, with its own discipline and rule. Evangelical friends were nervous about this, feeling that it sat more easily within an Anglo-Catholic tradition. Cicely Saunders herself recognized that this was not the case, however, and pointed to examples such as the Lutheran deaconesses and the Iona Community on the west coast of Scotland. She was aware, too, of a move within the Church of England toward the formation of intentional communities and saw this as a “work of the spirit.” Yet she did not see herself as being in the vanguard of a new spiritual movement. This, she believed, lay outside her “own spiritual capacity” at that time (Saunders 1960a).

Nevertheless, some pressed her as to which aspect of her vision was most important: the spiritual or the medical. She took the view that the medical and spiritual are inextricably mingled. “I long to bring patients to know the Lord and to do something towards helping many of them to hear of him before they die, but I also long to raise standards of terminal care throughout the country from a medical point of view at least, even where I can do nothing about the spiritual part of the work” (Saunders 1960b). There was, in fact, a sense in these discussions that it was easier to conceive of the “medical unit” than the notion of a religious community. A certain cautiousness about the latter was to become a persistent feature.

Significantly, her association with Dr. Olive Wyon, then a retired theologian living in Cambridge, did much to clarify the issue (du Boulay 1994). Olive Wyon had studied the new religious movements and communities that were developing across Western Europe (Wyon 1963), and this knowledge was to prove helpful in resolving the issues that Saunders brought to her. Cicely Saunders first wrote to Olive Wyon in spring 1960:

The problem … is the question of the “Community” which some people seem to see envisaged in my plan. I am tremendously impressed by the love and care with which the Irish Sisters give to our patients—something more than an ordinary group of professional women could ever give, I think. But I was not really thinking of anything nearly so definite as a real new Community, I think I was using the term in a much less technical way…. I had not been thinking of going any further than pray for the right people to come, and wait for the leading of the Spirit should He want us to draw together more definitely. (Saunders 1960c)

Two issues now required resolution. First was the question of the precise religious character of the hospice. The debate initially had focused on which wing of the Church of England it should be located. Yet, ecumenical ideas and the influence of discussions about Christian unity became quickly apparent. This was the extent of interfaith considerations. In these years Britain was still some way from addressing multicultural issues and the question of non-Christian religions was not given any acknowledgment. That would come later. To a considerable extent, the issue was resolved pragmatically. A major source of charitable funds, the City Parochial Foundation, was showing an interest in the project, but under its terms of trust the foundation was unable to give to a purely Anglican venture. This provided hospice with a strong reason for adopting an interdenominational orientation. Months earlier, and in a different way, the mother of a friend from medical school had captured this in theological terms. In a letter encouraging her not to be too dismayed by the apparent diversity of Christian influences that were helping to form St. Christopher's she wrote: “Could it be do you think, that in heaven our ways don't seem quite so different as they appear to us—and who knows that the edges might well melt away or not matter so much” (West 1960).

By the end of 1960 the issue was settled and Cicely Saunders could write to Olive Wyon:

We have decided that it shall be an interdenominational foundation, although we will have something in the documents stating as firmly as possible that it must be carried out as a Christian work as well as a medical one…. I found that I just couldn't think it was right to be exclusive. First of all, I could not be exclusively evangelical and thought that perhaps it would therefore have to be Anglican to keep it safe from heresy or secularisation. But then it didn't seem right to be that either, and in our legal Memorandum stands the statement: “there shall be a chapel available for Christian worship,” and I do not think that really we could be much broader than that! (Saunders 1960c)

On the second question however—that of St. Christopher's as some form of community—no such categorical statement appeared. Indeed there was a sense that this issue remained something to be explored and encountered, even as the work of the hospice got under way. In the midst of debate about denominational identity one supporter insisted:

To the outside world you must be first and foremost a medical concern…. You are a Christian doctor not a spiritual leader with a medical vision. You have lots of experience of working with others on a professional basis but God has never given you the experience of being a member of a Community. Don't you think he would if that were to loom large in his plan? (Burch 1960)

So it was that Cicely Saunders was able to write to Olive Wyon in December 1960: “It does not seem to have been right to think much more along the lines of a Community for this Home at the moment. I think that if we are to be drawn together in this work, that it will happen when we get there” (Saunders 1960c).

It is now clear that 1960 was an intensely formative year for Cicely Saunders. It was one of deep reflection and consultation with others on the precise nature of her vision for St. Christopher's Hospice. The issues that she had explored at such length with her friends and associates during that year would continue to tax her imagination and energy, but a clear and pragmatic turn had occurred which enabled the purposes of St. Christopher's to be explained succinctly to the wider public, including potential donors.

A few years later, the supporters of St. Christopher's, who had been meeting from 1962 under the guidance of the Bishop of Stepney, sought to formulate the basic principles of their work. They called themselves “a community of the unalike.” At a meeting in June 1964, Olive Wyon, in Cicely Saunders's words, “made an excellent digest of my woolly thoughts” (Saunders 1964). The resulting document, Aim and Basis, was to have currency at the hospice for many years in the future (St. Christopher's Hospice 1964). It defined St. Christopher's Hospice as a religious foundation based on the full Christian faith in God. It listed five underlying convictions: (1) all persons who serve in the hospice will give their own contribution in their own way; (2) dying people must find peace and be found by God, without being subjected to special pressures; (3) “love is the way through,” given in care, thoughtfulness, prayer, and silence; (4) such service must be group work, led by the Holy Spirit, perhaps in unexpected ways; (5) the foundation must give patients a sense of security and support, which will come through a faith radiating out from the chapel into every aspect of the corporate life.

Aim and Basis, therefore, provided St. Christopher's with a statement of underpinning motivation, which has been reviewed from time to time in the intervening years. The discussions that preceded it, however, were to shape the work of the hospice for many years to come. They reveal a profound sense of purpose coupled with a rigorous approach to debate and discussion, which were essential in establishing the dominant themes in the life and work of the world's first modern hospice. They largely agreed on three themes about the aim and basis of the work of St. Christopher's Hospice: religion, medicine, and the notion of “community.” The key issue was how these could in some way be harmonized.

It is clear that Cicely Saunders did not see her vision as bounded solely by the discipline of medicine. The concept of “total pain,” ideas about the multidisciplinary team and the involvement of families, and the creation of a charitable foundation outside the parameters of the British National Health Service all display a skepticism about the ability of the mainstream health care system to foster her ambitions. Significantly, the real importance of the early thinking that led to St. Christopher's lies in what was decided against. The ideas that were not pursued or which were allowed to recede are themselves significant.

In particular, it was decided that hospice would not be located in a narrow evangelical wing of the Church of England, whose primary purpose would be to proselytize. Nor was it to be a new religious community in which a dedicated few—operating outside of the secular world—would care for the dying in their own special way. Instead, it became a foundation underpinned by the Christian religion, but which fostered the contributions of various disciplines, facilitated research and teaching, and where others came to develop their own ideas and skills. So defined, the vision could be successfully emulated or elaborated, thereby enabling its spread both nationally and internationally in the following years.

Within a decade of the opening of St. Christopher's (1967), another fourteen hospices were established in the United Kingdom. Meanwhile, other services had opened in Europe (Oslo, Norway; Motola, Sweden), western Asia (Nicosia, Cyprus), and North America (Winnipeg and Montreal, Canada; New Haven and New York, U.S.A.). As the 1970s drew to a close, hospices were also operating in Africa (South Africa and Zimbabwe) and Oceania (New Zealand). Within a thirteen-year period, hospice services had become available to local populations on five continents. Latin America followed in the 1980s (Stjernswärd and Clark 2003).

Influenced by Cicely Saunders, an internationa...