Celebrating over 40 years of Australia’s first modern palliative care (1979–2020)
“The dying were once isolated and almost ignored”
The modern hospice movement dates from 1967 when St. Christopher’s Hospice was established in East London, United Kingdom (UK) by Dr Cicely Saunders. Dr Saunder’s pioneering work was to bring relief to patients suffering from distressing symptoms, in particular pain associated with cancer and neurological diseases. As well, care was provided for families before and after death. This service provided the inspiration for the growth of the modern hospice movement in the United States of America (USA), Canada and later Australia during the 1970s.
Much has been written about the trials and errors of establishing these services. Even the revered Dr Cicely Saunders in her early work in this field, faced opposition from senior doctors and funding bodies. She found hospice to be a place of dissent among staff early on while she continued to emphasize that the patient and their family must be at the centre of decision-making and that providing relief from distressing symptoms was her primary goal. From those early beginnings she also worked to reduce medical hierarchical structures within the hospice, for so long a domineering feature of health services.
The name hospice was changed to palliative care by Dr Belfour Mount in Montreal, Canada in the 70s because hospice in French translated to “poor house” which he found undesirable. However, the two titles have become interchangeable throughout the world wherever such services are to be found. The first Canadian palliative care service to integrate a home maintenance program was created in 1974 at the Montreal and Winnepeg hospitals*. I was privileged to visit the Royal Victoria Palliative Care Unit in Montreal as part of a Fellowship in 1978, an experience which proved critical in influencing palliative care delivery in Australia.
Fitzroy, Melbourne: Leaders in advocacy for change
In 1978, the North Fitzroy based Melbourne City Mission (MCM) was a long established and well-respected welfare agency. Its then CEO was the Rev Bruce Addison, a man who was ambitious for his agency and who was proud of its history dating back to 1865.
In that same year of 1978, I was working in a nearby welfare service, the very innovative Social Planning Office in South Fitzroy. It was here that, with colleagues, we developed and provided home care services for frail, elderly residents as well as those who were ill, disabled and sometimes dying. We were committed to helping them remain at home if this was their wish. We worked closely with several local agencies to ensure the best care we could offer was given, despite the financial constraints and rigid operating rules put on us by the Health Department. Our office was committed to an egalitarian and democratic approach to decision making. Power politics was not a part of the office ethos and our primary role was to advocate for those whose wishes were seldom heard.
These aged care services expanded with Fitzroy Council’s support to become an alternative to entry to residential care, which in Fitzroy usually meant the much-feared old Mt Royal hospital in Parkville. Many in our care lived alone in a house or in a room behind a shop or in a squalid rooming house in the now gentrified Gertrude Street.
My advocacy for residents who were frail and sometimes dying, for their self-determination, as well as the range of then unique services we offered them, led to me being awarded a Churchill Fellowship in 1978. This allowed me to spend six months studying in Canada, the USA and the UK where I visited a range of progressive services. The hospice programs I studied at were relatively new and were all committed to the relief of distressing symptoms, family support and to making it realistic for people who were dying to remain at home if they wished. A handful of enthusiasts in Britain and Northern America had set in train a quiet revolution that was laying the foundation for the modern palliative care movement. They found the situation in hospitals intolerable for the dying and for their families. There, detachment, technical and invasive approaches defined the care being offered. Thus, those early pioneers were determined to do something about it.
The seventies – an era of protest and social change
At this time social change was afoot here and elsewhere. The Vietnam War was drawing to a close. Women’s movements and self-help groups were flourishing. Nurses were seeking opportunities to work more collaboratively with doctors in hospitals and birthing practices were being challenged. As well there was a desire to make death more meaningful than death in an acute hospital. Dr Elisabeth Kubler Ross, an American psychiatrist, who in 1969 published a book called “On Death and Dying”, visited Australia in 1979 attracting large audiences. She advocated five prescribed stages of dying which captured people’s imagination worldwide. These stages were anger, denial, bargaining, depression and acceptance. Dr Ross was another who was deeply dissatisfied with how little was being done to care well for the dying and to relieve their suffering.
In January 1977 a train disaster occurred at Granville in New South Wales (NSW), Australia, killing 83 people and injuring 210. People across the country were deeply shocked by this event and the NSW Government appointed Dr Beverly Raphael, a psychiatrist with an interest in loss, grief and trauma, to work with survivors and grief-stricken relatives. Arising from her dedicated work, people in several states were alerted to the need for a system of support for people who were grieving especially when their loss was sudden and unexpected. Out of this arose the National Association for Loss and Grief (NALAG) which offered free support to those in their communities who were grieving. I was a member of the inaugural Victorian branch. At that time Karene Fitzgerald who, after her infant son had unexpectedly died, had established “SIDRFS” (Sudden Infant Death Research Foundation), a support group for grieving parents as well as advocacy for research to establish the cause of cot deaths.
Fitzroy’s first nursing home, founded on social justice principles
In 1974 the Melbourne City Mission (MCM) had decided to build Fitzroy’s first nursing home at Church Street. North Fitzroy, but construction had stalled due to design problems. In 1978 following my return from study overseas, the Rev Bruce Addison invited me to have input to the building’s design. Inspired by what I had seen overseas in new residential buildings, I was pleased to accept. Together with the architects we worked to bring to fruition a building that stressed warmth, brightness and community and a place where residents could feel at home. Its design and ethos was seen by aged care agencies and architects more widely as an encouraging example of the concept of providing a home-like environment to dependant elderly residents. Mr Addison and his Board of Directors were delighted with the result and named it the Harold McCracken House in honour of the then president of Melbourne City Mission.
Growing community interest in hospice care despite early stressors
During 1978 and 1979 I accepted many invitations to speak about the need for modern palliative care services in Australia as well as about enlightened ideas on nursing home design. I spoke at hospitals, universities and to community groups across Australia and New Zealand.
When I first accepted invitations to speak to hospital audiences about the benefits of modern palliative care, I encountered senior doctors in Melbourne who denied the need for improved services for the dying, insisting that they were already meeting their needs, including the control of all distressing symptoms. These doctors made no mention of carer or bereavement support or care at home which was an intrinsic part of palliative care services. There were doubts and even jealousies from outside health professionals once funding for Citymission Hospice was announced, especially as they could see this funding with potential for growth, going towards a new service, while they were battling fiscal constraints.
I would later learn that similar forms of opposition – in the early establishment period of palliative care services – was also experienced by many services, staff and volunteers around the world.
Some described what we offered as “extras” and as well, there were considerable attempts to undermine my professional credibility. I faced opposition from powerful forces, including a Melbourne oncologist who decried to medical and nursing colleagues all that I had been saying about the benefits of palliative care. He insisted that I attend one of his ward rounds so I could observe how well he cared for his patients. I joined him to observe a chain-smoking medico in a white coat with a retinue of students and other staff at a patient’s bedside. The curtains were only partially drawn. He discussed the patient’s illness and prognosis and examined x-rays with the attending health professionals without speaking to the patient. As he moved away, he patted the back of her hand saying that the sister would fill her in on what they had decided.
Despite the patronising behaviour of some doctors, interest in palliative care was still growing rapidly. In March 1979, along with a visiting palliative care nurse from St Christopher’s, London, I spoke at the Mercy Hospital in East Melbourne to a large audience comprising heads of welfare agencies, senior Government bureaucrats, and senior hospital staff. Archbishop Frank Little hosted the occasion. Several heads of major agencies later asked me how they could begin a palliative care service. Of these, only one persevered with the idea, and that one was the Reverend Bruce Addison of Melbourne City Mission.
Director of nursing and the media
By 1979 my media profile had grown considerably as people became aware that there were more enlightened ways to care for the dying in our community. My book, called ‘I Want To Die At Home’ which described the care offered by modern palliative care services that I had worked in overseas, was in great demand by lay people and health professionals alike. Phillip Adams, the ABC media commentator gladly wrote a foreword to the book in his inimitable style saying in part: “Sister Kingsbury has challenged outmoded forms of institutional care. Her book is important, so keep it on your bedside table alongside your Bible, your Koran and Bertrand Russell. She is to be thanked for her pioneering work”.
In early 1979 Mr Addison invited me to become the Director of Nursing of the proposed palliative care service which was to occupy a house adjoining the nursing home in Church Street, North Fitzroy. There were no formalities in my job offer apart from a simple job description and I accepted. Colleagues in Fitzroy gave me a send-off party cynically naming my undertaking “Mission Impossible”.
Mr Addison then went to print in the MCM Newsletter (November 1979), announcing: “Sister Kingsbury will be involved in the planning and development of a demonstration program in hospice. What a great opportunity we have to get the movement off the ground in Australia. Katherine has already made a significant contribution to an enlightened understanding in Australia of the modern hospice movement. As Director of Nursing of our program she will now become involved in introducing the skills she has observed overseas to the Australian context.”
The following year, in early 1980, Mr Addison wrote about my appointment in a MCM newsletter (May 1980): “Sister Kingsbury has bought to the position of Director of Nursing of our nursing home a wealth of experience in this community. She knows the people, the networks of local services and how to integrate this service with them. More than that she is sensitive to the need for change in traditional home care and is committed to achieve this. Already a great deal of interest has been generated in the leadership of Sister Kingsbury in challenging outmoded forms of institutional care. As well, the architects have de-emphasized the institutional atmosphere that often afflicts nursing homes.”
Kellogg Foundation funds pilot hospice program in Fitzroy
Melbourne City Mission proceeded to negotiate with Kellogg Foundation in the United States of America (USA) to fund a two-year pilot program of a palliative care service, to be the first in Australia.
Mr Malcolm Fraser, the then Prime Minister and the then Health Minister, Mr Michael MacKellar, visited Melbourne City Mission in May 1979 to learn about the proposed service that so many in high places were talking about. Mr MacKellar was very interested in how pain relief was achieved in hospices and discussed with me facilitating access to heroin for our use as it was in use at St Christopher’s at that time. Things were moving very quickly and my workload was becoming unrealistically high. I had continued as Director of Nursing of the nursing home as well as beginning to identify the requirements for the new palliative care service.
In May 1980 Mr Fraser accepted an invitation to officially open the new Fitzroy nursing home, but this launch occurred amidst a large angry hostile crowd, including many of my former Fitzroy colleagues, protesting against his Government’s policies on Medicare. The day was marred by the protesters pelting Mr and Mrs Fraser with eggs, tomatoes and potatoes from nearby rooftops. Protesters had also daubed the nursing home with swastikas and offensive signs during the night when Federal Police, acting as guards left for a break. This caused great distress among the residents and nursing home staff.
Unfazed by the hostility of the crowd, Mr Fraser took this opportunity to announce, in the presence of the media, that he would make a donation towards the furnishings for the headquarters of Australia’s first palliative care service. Mr Addison and his Board were very happy indeed with the nationwide publicity they got from that day, even though it was more about the violent demonstration against Mr Fraser’s presence in Fitzroy than about the prospect of a new palliative care service. Local opposition MPs and the whole of Fitzroy Council had boycotted the day, but neither Mr Fraser nor Mr Addison appeared to be troubled by this.
In August 1980 a formal visit to MCM by the USA Consul General, Mr James White, along with the Prime Minister Mr Fraser took place. The USA Consul General attended, representing the Kellogg Foundation to officially announce that they would fund a two-year pilot of palliative care in Fitzroy and that this would include funding for an independent evaluation after two years of operating. This was undertaken by Dr David Dunt and Ms Annie Cantwell. Mr Fraser then announced that day that his Government would fund the pilot program, “one of National Importance for a third year” (Hospice Newsletter, August 1980). These announcements took place in front of a large contingent of national television and print media who gave the occasion Australia wide coverage. It was then arranged that I would return to Montreal, Canada for a forthcoming biannual conference on palliative care to further my learning.
The CEO Mr Addison negotiated with the Health Department that ten of the nursing home beds would be allocated to the palliative care service as back up and a walkway was built connecting the Church Street house to the nursing home. Negotiating with the new nursing home Director of Nursing on how we would manage dual accountability for the palliative care nurses working in the 10 nursing home beds was difficult but was eventually achieved.
The early hospice staff appointments
At this time in 1980 the CEO wrote glowingly in a second MCM news bulletin (Hospice Program Newsletter June 1981) that: “Katherine Kingsbury is inextricably linked to an idea whose time has come. What a great opportunity she has to get the movement off the ground in Australia. Because of her special knowledge of hospice procedures and philosophies she has transferred to the new venture which she has worked toward.”
In July 1980 Mr Addison appointed a friend of his to become the hospice and nursing home administrator (Hospice Newsletter, August 1980). In March 1981, a Christian doctor, was appointed Medical Director of the new service (Hospice Newsletter, March 1981). A secretary, whose job was not advertised but who was a friend of a staff member came on board soon after. GPs in the district were contacted and encouraged to see the benefits to their patients of using the palliative care home visiting service and having access to palliative care beds. The Medical Director negotiated with the Royal Melbourne Hospital that they would refer appropriate patients to us to receive palliative care.
Many of the characteristics of the nursing home management style which I had worked hard to embed were carried over to the new service with the full support of Mr Addison. This included a commitment to a non-hierarchical, flat management style emphasizing team work and consensus decision-making. The multidisciplinary team concept was first in vogue in the 1970s, but teams just don’t happen, they slowly evolve. A team approach obliges the staff of a palliative care service to accept egalitarian relationships with other health professionals which may not have been the case in former employment. Dr Saunders once said in the 70s that “hierarchies should be conspicuously absent in hospice care” (“Hospice, Care for the Dying” 1976).
At the beginning of any new endeavour aspirations are high. In the period prior to accepting patients, staff of the new palliative care service were in a buoyant mood with high expectations. We knew that what we were undertaking would set an example for the future of palliative care in Australia. One of my tasks from the beginning was to ensure that we would evolve as a harmonious team.
Patient autonomy was paramount for our new service. It was held as one of our core values. But from the outset this was not upheld, leading to conflict between staff. I saw the early management style as incompatible with our stated values of egalitarian and democratic decision making. Other stress factors included the haste with which staff were expected by MCM management to get the service up and running, the mismatch of values held by the Medical Director and myself including the insistence by the Medical Director that he was “the conductor of an orchestra i.e. the staff,” while I saw all staff as equal and whose views held equal value. Role blurring became an issue raising the question of professional identity for some. These were all factors which contributed to the stress experienced within the service from the outset.
By early 1981 after staff had occupied the Church Street house, headquarters for the new service, the CEO began frequently bringing through visitors, some of whom were possible donors. They wished to see the new service. To reach us they intrusively walked through the nursing home. The CEO ignored the need of our staff and residents for privacy and not to feel on exhibition. Idealisation of staff by visitors was evident and was hard to tolerate. There was no service to see and if we had had patients by then, I would never have allowed curious visitors. We entered a stressful phase which the Canadians also experienced, one that they called the “goldfish bowl phase” (Montreal Palliative Care Manual 1980). It was inappropriate for the nursing home residents as well as for us and I had to ask that the practice cease. It was clear that I had disappointed Mr Addison in his attempts to promote the new program with interested visitors.
When I approached the CEO about my concerns for the service in early 1981, his response was to suggest that I pray for guidance. On another occasion when the Medical Director and I had seemingly irreconcilable differences, we were invited by the CEO to sit with him holding hands, while he and the Doctor prayed for guidance. This occurred more than once, and I found it an unsatisfactory way to resolve serious differences between staff. I suggested that there should be an impartial examination of our difficulties. This I later learned, was how Montreal Palliative Care Service had dealt with deep dissatisfaction amongst the staff and volunteers in their early days. In Montreal, some were pessimistic about the ease in which palliative care could be innovated within the existing health care system, while others questioned whether or not it was a good use of financial resource distribution in healthcare. Following their organisational analysis, the organisation experienced a restructure, without sackings, allowing the Program to move forward and thrive. They subsequently published an account of this process in the 1976 Montreal Manual on Palliative Care (page 459).
MCM Hospice Program Director of Nursing sacked
In May 1981, the CEO, the Administrator and the Medical Director suddenly and without warning or explanation terminated my services, seven weeks after the first patient had been admitted to the program. I was told that I had failed when the service had barely begun. Several staff resigned at once in protest, including the social worker, the volunteer coordinator and nurses, saying in writing to the Board that they did not support the top down management style of the Doctor. Others wrote in protest to the Board. Staff of local Fitzroy agencies held deputations and protested in the strongest terms to the MCM Board and the newspapers ran lead articles on the matter, one saying “top nurse sacked” (Melbourne Times July 1981). It was reported that my sacking was mentioned in the Federal Parliament by the Prime Minister and recorded in Hansard.
In Mr Addison’s own words earlier on I had been instrumental in attracting the Kellogg funding for the two-year pilot program as well as the Prime Minister’s grant to extend the service for a third year. In two and a half years I had established two new and innovative services as well as advised extensively on the nursing home design, but despite this it was “Mission Impossible” for me after all. I have since read that “pioneering is never easy, the stresses involved are significant” (Vachon “Occupational Stress in Palliative Care Staff” 1997).
The nurses’ union sued Melbourne City Mission for wrongful dismissal on my behalf. This was upheld but I chose not to return. Many careers were damaged as a result of this event. A psychiatrist was employed to facilitate discussions between remaining shocked and distressed staff members, again adopting a pastoral and psychiatric approach rather than the organisational analysis that I am certain was needed. My termination by Melbourne City Mission appeared to be a reflection of the weaknesses rife in palliative care services abroad at the time.
Worldwide trends and personal reflections
Dr Balfour Mount of Mount Victoria Palliative Care Service in Montreal wrote: “Most if not all pioneering units have experienced serious team stress related disorders. Scapegoating – that at one time or another the personalities and idiosyncrasies of all palliative care leadership personnel have been perceived as the key factors contributing to existing tensions in the service. Invariably the root causes lie not in the personalities of staff but in ambiguous goals, unclear role expectations, and dysfunctional decision-making procedures” (Montreal PCS Manual, 1976).
Dr Mary Vachon, a Canadian nurse and researcher has examined numerous palliative care services, especially in their start-up phase and she has found that these services prove to be “places of dissent and even conflict despite their best intentions to work collaboratively”. Dr Vachon reported that major stressors were “communication problems, role ambiguity especially in a team setting, lack of role clarity especially between the doctor and the senior nurse, and senior nurses reporting a lack of participation in decision making.” She also identified that “the visionary who identified the need and worked to see it established was not always the implementer. Some would say that a different set of skills were required but it is how these transitions are dealt with that defines the integrity of the organisation going forward” (M.Vachon, Occupational Staff Stress in Hospices, 1997). While many services worldwide experienced difficulties to varying degrees, Melbourne, where Australia’s first service began, was no exception.
Although forty years have passed since I was invited by Melbourne City Mission (MCM) to establish Australia’s first palliative care service, I believe there remain lessons to be learnt for new as well as established palliative care services. Since those days I have held responsible positions in other start-up services, giving me the opportunity to reflect on those events at MCM. This includes the establishment of Banksia Palliative Care Service. I believe that the error then was that MCM did not have clear selection criteria along with a thorough impartial interview and selection process when appointing senior staff. Lines of accountability, still vital in a team, were never spelled out and most importantly, we were the first palliative care service in Australia. We were creating something new, all eyes were on us, some waiting and perhaps hoping for us to fail, thus vindicating their position that they “were already meeting the needs of dying people”. Like staff in all organisations, we required a safe space where tensions could be articulated and worked on together productively, and where staff have no hidden agendas.
A golden period of growth in palliative care in Australia
Forty years ago, we sparked a movement that grew from the first hospice program established in Melbourne Australia in 1979 to more than 170 nationwide today. They offer comfort, care, and pain relief in the final days of their patient’s lives as well as helping ease the distress of families faced with the loss of loved ones. Ongoing training and debriefing as well as support for all staff and volunteers has been recognised as essential for staff wellbeing and is, I hope, now universally offered.
Despite the early difficulties alluded to in this paper, Melbourne City Mission Palliative Care Service went on to become, and remains to this day, a leading provider of palliative care in Australia. The early staff at Melbourne City Mission eventually laid the foundation for a solid growth of palliative care providers in Australia, and for this I am proud and thankful.
Katherine Kingsbury OAM