The Hospice Movement in New Zealand - 25 Years On
Issue 13, August 2004
In June 1979 New Zealand's first hospice, Mary Potter Hospice, was opened in Wellington. Later that year, Te Omanga Hospice in Lower Hutt, and Saint Joseph's Mercy Hospice in Auckland, were also opened. Just twelve years earlier, Saint Christopher's Hospice in London, symbolically referred to as the first modern hospice, was opened.
In 2004 hospices enjoy widespread respect in the community. However, this was not always the case and indeed, in their inception and establishment, there was considerable tension between the movement's aims and the medical system that it sought to reform and inspire. To understand the significance of the transformation of the care of the dying by the hospice movement and the challenges that it faces today a brief overview of some of the history of its development, both internationally and at Mary Potter Hospice, follows.
A central figure in the founding of the modern hospice movement is Dame Cicely Saunders. She trained as a medical doctor after first working as a social worker and volunteer at Saint Luke's House in London. Saint Luke's House had been established in 1893 with the support of the Wesleyan Church. Here the importance of spiritual help was considered to be on a par with physical care. For example, in its 1899 Report we read, We have from the outset considered it to be quite as much the work of the Home to prepare its guests, as far as may be, for their entrance into the new life, as it is to conduct the present life to its close.Saint Luke's House and Saint Joseph's Hospice, founded by the Irish Sisters of Charity, had a profound influence on Cicely Saunders. They were instrumental in shaping her model of hospice care, which is best described as hard medicine combined with spirituality. In July 1967, she opened St. Christopher's Hospice in London with an interdisciplinary team to provide a mixture of nursing, medical, social, and religious care.
Modern hospices are traced back to Saint Christopher's because of the charisma and skill of Dame Cicely Saunders and her unique zeal in promoting the concept of hospice care internationally. In 1963, with a grant from Saint Thomas' Hospice in London, she toured America and introduced her concept of hospice care. Prior to this America traditionally had few hospices. Those that did exist were viewed as death houses by the American public and as places where treatment ceased. Although hospice leaders wanted to imitate her concept of hospice care in America, this did not eventuate as the American health care system was substantially different. In the United States, where healthcare tended to be dominated by technology, the physical components of hospice care overshadowed emotional and spiritual support.
Elisabeth K Ross is another central figure in the development of the hospice movement. She had been involved with the care of the dying and their families and published her very popular stage-theory of grief and the dying process in 1969. While Saunders' concept of hospice care appealed to the health care professionals, KRoss brought death and dying into the public arena for discussion. Her ideas had particular appeal to the middle class who were well educated and sought out services and opportunities to improve the quality of their lives. This new awareness of death and dying as an important stage in life gelled with members of the medical and nursing professions, and hospices began to proliferate throughout the Western world.
Increasingly hospices have become associated as places where people die, however, such a notion is impoverished. Hospice is more accurately regarded primarily as a concept of care, or as a philosophy of care. Within this philosophy the physical setting for such care undoubtedly enhances or diminishes the ability to meet a dying person's physical, social, or spiritual needs.
Initially hospice programs emphasized inpatient care of the terminally ill - patients were admitted to a residential facility, where they received comfort care from an attentive, multidisciplinary team of caregivers until they died. Hospice programs now provide a wide range of residential and home-based services.
The term Palliative Care, was coined by Canadian Professor Balfour Mount in 1975. In the French provinces of Canada, the term Hospice implied an alms house for the elderly, and therefore, less than optimal care. For this reason, Professor Mount preferred the term Palliative Care. While palliative care is a principal feature of hospice care, it is not completely interchangeable with the philosophy of hospice care.
Mary Potter Hospice: New Zealand's First Hospice
Cicely Saunders, Elisabeth K Ross and Balfour Mount were all influential in the development of the modern hospice movement in New Zealand. The opening of The Mary Potter Hospice (MPH), Wellington in June 1979, by the Catholic religious nursing order The Little Company of Mary (LCM), was the result of a whole range of circumstances coming together. There were several central strands to its development.
In the 1960s a bequest enabled the Little Company of Mary to build a centre for cancer patients at Calvary Hospital. Calvary Hospital had been established as a teaching hospital by the LCM in which to train its members, but radical changes within religious life, after the Second Vatican Council (1963-1965), encouraged the Sisters to rediscover and return to their foundational charism which was to care for the dying.
In the mid-1970s the ground floor of Calvary Hospital was a 24 bed geriatric assessment ward, whose charge nurse was Sister Margaret Lancaster, LCM. A general practitioner, Doctor Michael Shepherd, who helped with patient assessment at Calvary Hospital, had previously worked at Saint Christopher's Hospice, London. With the shortage of beds at Wellington Hospital, terminally ill patients began to be referred to the Mary Potter Ward to be cared for there. Sister Margaret and Doctor Shepherd were very enthusiastic that this ward should develop as a hospice and accordingly approached the LCM Order to see if they could provide some facilities for terminal care. Doctor Alan Gray, a Wellington Oncologist, made the formal approach to Sister Frances Rodden, LCM who was, at that time, Principle Nurse of Calvary Hospital. Recalling these events Doctor Gray, interviewed in 1990, said:
I think credit for the hospice has to go to Sister Margaret but it also has to go after that to Sister Frances. She had the vision, the energy and the foresight to see that this was important and to put the Company (LCM) behind it. So she told me that we could have five beds (single rooms) in the Mary Potter Ward for the care of the terminally ill. She shook her finger at me and said, I'll give you five and no more; don't come back asking for more! Those beds were funded from the Williamson Trust which had a capital sum to run the cobalt unit. Within a year or two we had most of the ward to run a hospice and by 1979 we had the formal opening of the hospice by the then Minister of Health, Mr Gair.
The ward required considerable renovation and various charitable trusts helped towards this end. A day centre was added to the complex so that patients who were living at home could come in and be occupied and be assessed to receive counselling, advice, and company.
A major problem in the establishment of MPH, and indeed for the hospice movement in general, was funding. Most of the costs in establishing MPH were met by the LCM from the profits of their surgical operation in Calvary Hospital. Despite this support the financial deficit for the hospice was always considerable.
In 1978 The Cancer Society became involved with the hospice and funded the first specialist oncology nurse in New Zealand and later the salary of one of the first doctors at the hospice, Doctor Pam Elder. Nevertheless the funding difficulties continued and in 1985, after pressure from the Minister of Health, the Wellington Hospital Board entered into a contract to pay for twelve of the twenty-three beds in the new hospice
In 1987 the Sisters sold Calvary Hospital which enabled them to establish the Mary Potter Hospice Foundation. This effectively gifted the hospice to the people of Wellington. The MPH Foundation raised $6.3 Million for the rebuilding of the new Mary Potter Hospice. This included a substantial donation from the Little Company of Mary. The new hospice was opened, in August 1990, by the then Prime Minister of New Zealand, Mr Geoffrey Palmer.
From small beginnings the hospice movement in New Zealand has now grown into forty-two hospice programmes. Twenty-five years on they face some significant challenges.
The Challenges Ahead: Preserving the Vision
The hospice movement received its initial impetus from charismatic leaders such as Cicely Saunders and Elisabeth KRoss. As eminent sociologist Max Weber observes, charismatic authority is by nature, creative, disruptive, and revolutionary, and, because of that fact, is a powerful force in any social change. The lesson of history shows that this individuality and spontaneity yields to the development of routine and bureaucracy and is an inevitable by-product of the process of expansion of any successful movement. According to Weber, leadership can remain charismatic only so long as the numbers who follow the particular charismatic leader are small.
A fundamental challenge, then, for the hospice movement, is the deliberate and careful nurturing of the dream and vision that led to the founding of modern hospices; namely, the holistic care of the dying. This must remain paramount, particularly as administrative demands and funding pressures grow in intensity. This is no easy task and requires a particular type of management style if the original vision is to be both preserved and enhanced.
The Assisted Suicide Debate
The assisted suicide debate, which is fundamentally a debate about how we are to care for the dying, has profound implications for the hospice movement, not least because the nature of this debate forces the hospice movement and palliative care into a defensive and reactionary position. Proponents of assisted suicide aim to support their case by proving that hospice does not and cannot provide effective pain relief and adequate symptom control. This narrow focus detracts from the holistic nature of hospice care which was at the very heart of the vision given by the charismatic initiators of the modern hospice movement. A major challenge for the hospice movement is to avoid the trap of being forced into such a narrow and reactive focus.
Education and Research
A key goal of the hospice movement is its educational role for the medical and nursing professions and wider community. In the provision of education about care of the dying in the community the hospice continues to demonstrate that it is not an elitist group doing their thing in a manner that is independent of the community, but rather has goals and a philosophy that is at the very heart of community.
Central in this educational role has been the task of educating the medical and nursing professions in the care of the dying by familiarising them with palliative care. Education about end of life issues such as the control of pain or the multi-dimensional nature of pain, for example, are vital if the latent fear of dying, which is a dominant feature of modern society, is to be allayed.
Hospice also has an advocacy role in ensuring that there is ongoing research into the medical, spiritual and psychological needs of the dying. Research and education require long-term commitment and planning, which can be lost amidst the short-term needs of providing care.
The Challenge of Funding Resource Allocation
Resource allocation for the terminally ill is part of the continuum of healthcare which requires Government support. The Government recognized the need for palliative care in its 2000 New Zealand Palliative Care Strategy Document. Among other things this Strategy Document proposed a set of publicly funded essential services, clinical care and support care. Full implementation of this strategy requires continuing advocacy to ensure that it retains priority among other healthcare needs.
Palliative care in New Zealand is currently substantially under-resourced. The Government provides, on average, just over 50% of hospice core functions (some hospices receive just 38% of their total budget from this means while others receive up to 75% of their total budget by this means.) The remaining amount is funded by public donations. The Minister of Health, Annette King, has recently convened a working party comprising Hospice New Zealand, District Health Boards, and the Ministry of Health to look at current funding levels for hospice care.
In advocating for funding for hospice we must not lose sight of the holistic nature of hospice care, especially when it is relatively easier to obtain funding for the medical aspects of end of life care.
The starting point for hospice care is the acceptance of the reality of death. Death is not an illness requiring treatment but the end of the life journey which requires adequate pain relief, holistic care and compassionate presence. Similarly, the governing insight of palliative care is that medicine and pain relief are both a science and an art. The continued gift of this quality care of the dying and the support of their families in New Zealand are essential for the future well-being of our society.
Fr Michael McCabe, PhD
The Nathaniel Centre