This most generous and exciting prize belongs to a great many people. Patients past and present, families, staff, my own family and friends and many writers and speakers have contributed to the founding and growth of St. Christopher’s Hospice and the ideals that it tries to embody.
It is not easy to speak of this and, as always through the years, I found inspiration in talking with a patient. Ted has been one of our long stay patients for over four years and for me he is a resident friend, as he is indeed for all the staff of his ward. Though he can hardly move and one has to concentrate hard to understand what he is saying, because of the person he is, he is one of our main supports. When I told him that I could not get started on this speech, he listened and looked quizzical and finally sent me away to take courage. Two days later I found a single sheet of his idiosyncratic typing on my desk. He does this on his Possum apparatus by leaning his forehead in three different directions, almost his only movement.
He had several suggestions, two of which I quote. ‘You could put yourself under a microscope and say how your life has been affected, what you were and what you are now. Hard to do honestly but fascinating. You must have grown, weeds and all’. I am not going to do this but I am heartened by this attitude to the rather luxuriant growth of weeds. His final comment gives the hospice message, ‘if there is not the germ of an idea in any of this then perhaps there is the fact that after four and a half years cooped up in your blessed haven I am still alive and I mean alive and really, apart from my stupid body, quite alert’.
Words change and their meanings develop. For over 1,000 years hospice was a resting place for pilgrims, giving them a welcome that lasted till they were ready to go on. For a few, the sick and wounded, it would have been the last stage. For the past 100 years or so hospice has also meant a foundation, still religious, admitting those with incurable illness when the hospitals would no longer care for them. Founded on both sides of the Atlantic and in Australia around the turn of the century, they were for patients dying of cancer and of tuberculosis and with long term illness when the only alternatives were the Poor Law and similar Institutions. Among this group it was the Irish Sisters of Charity who chose the name Hospice, first in Dublin, later in Hackney and applied it especially to those who were dying.
Over the past decade the word has been filled up with new meanings and has come to stand for a world-wide movement identified by attitudes and expertise rather than by bricks and mortar, for many hospice teams have no beds of their own. I would define the modern hospice as a skilled community working to improve the quality of life remaining for patients and their families struggling with mortal and long term illness. Some also include the frail elderly. Hospice is about a special kind of living and in a sense is still concerned with travelling: patients, families, elderly residents and the staff and volunteers who meet them, find they are drawn into a journey of the spirit.
However, this new development began with a building when you, Ma’am, opened St. Christopher’s in July 1967, when we took the word Hospice from St. Joseph’s, generous in this as in everything else. Not the first hospice, but the first planned not only to care for a mixed group of patients but also to develop research and teaching.
When I believed that God was calling for a new Home I knew of all this, only that a young man called David Tasma, originally from the Warsaw ghetto, had left me £500 saying ‘I’ll be a window in your Home’ and that he had also said, ‘I want what is in your mind and in your heart’.
Here was a commission from a dying man who felt he had made no impact on the world, a commission to give his life meaning by creating a home dedicated to openness and to the balance of mind and heart, of skill and friendship. At that time I was a medical social worker, having been invalided from nursing, I was also a fairly newly committed Christian, waiting to know what I had to do with my life.
I enrolled as a volunteer S.R.N. in St Luke’s Hospital, Bayswater, a hospice opened in 1893, and during the next three years realized that pain could be controlled much more effectively than I had ever seen in any general ward, and a great deal more besides. When in 1951 I told Mr. Norman Barrett, the surgeon for whom I was working, that I had to go and try to nurse in this field, he said, ‘There’s so much more to be learned about pain, you’ll only be frustrated unless you become a doctor’ and helped me to enter medical school.
It took 19 years to build the home round that window. I believe that that time was needed for a number of ideas and influences to come together into the new pattern of the modern hospice. There are not too many original ideas around but there is often a new pattern to be discovered if we search with ready minds and ask a few new questions.
The first challenge was for the better understanding and control of pain. The seven years part time volunteer experience in St Luke’s and the later seven years full time developing this in St. Joseph’s laid the foundation for the increasingly sophisticated symptom control that means hospice today. There was much more to learn from St. Joseph’s from the strength and prayerfulness of the community of the Irish Sisters of Charity and, above all, from uncounted hours with the patients. It was they who showed me by their achievements how important the ending of life could be and many that I knew briefly and a few long stay patients, friends over the years, are the real founders of St. Christopher’s. One, another Pole, special among them all, left me other key phrases. When I told him he had not much further to go, he asked me, ‘Was it hard for you to tell me that?’ When I said that it had been, he said, ‘Thank you. It is hard to be told, but it is hard to tell too. Thank you’. We have to care what we say; this work is hard and demanding as well as rewarding. Two other things he said were separated by some three weeks. The first, ‘I do not want to die, I do not want to die’. The second, ‘I only want what is right’. Sometimes people ask me what I mean by achievement in dying. Here was one, Gethsemane made present today.
There were many elements in the new pattern. The advances in clinical pharmacology of the 1950s, a whole new range of psycho drugs — the tranquillizers and the anti-depressants — new analgesics, the steroids, these and other tools were waiting to be understood and used. Alongside these came improved palliative radiotherapy, the development of anti-cancer chemotherapy and the techniques of the new Pain Clinics in blocking individual pain pathways. A growing number of St. Joseph’s patients showed remarkable improvements and some were sent back to their general hospitals for further treatment. Others returned to their homes, often to live far longer than expected. But adequate follow up was not easy.
Though many of our patients in Hackney were loners, I watched with admiration the work of the Sisters with the families. In 1963 I saw how the social workers of Cancer Care in New York were maintaining patients at home. We began to look at the whole family unit and the support needed to enable them to remain as the most important part of the caring team. David had been alone but we now began to plan for family and home care as part of the commission.
In the early 1960s I came upon the literature of the Voluntary Euthanasia Society and realized how important it was not only that pain relief should be more widely spread but also that people should understand that life could be lived to the end. We believe that euthanasia or assisted suicide is a socially dangerous and negative answer to a problem that should be tackled in another way. We have a responsibility to work so that no one should reach the desperate place where they feel they have to ask for that sad way out.
By 1959/60 we were a small, enthusiastic group, beginning to plan in detail and at last having a name for the Home to be built round the window. The first letters and memoranda show that we knew we had to look at the scientific foundations of the work and to make it a respectable and therefore respected part of medicine, used, not in a string of other St. Christopher’s, but across the board, so that every patient, everywhere, should have the benefit of the new knowledge. And, incredibly, from such small beginnings, it is practised in the world-wide hospice movement and is to be met throughout general medicine.
We had to learn to ask some new questions . . . ‘Why has this patient got this pain or other physical symptom?’ ‘What can I do about it when there is no longer any cure for the underlying disease?’ ‘Why is this family reacting as it is and how can they be helped to use the time left to resolve their problems?’ ‘How do we ease the pain of parting so that even that has within it the seeds of new growth?’
These questions are being asked more often and some of the answers we have tried to suggest, based on our 14 years of work in the wards, in the homes around since the Domiciliary Team began work in 1969 and by our Clinical Research Fellows, are all becoming part of what is termed ‘received knowledge’. When every article and teaching round about a particular disease includes a section on how to help those for whom curative treatment fails, we will have attained our aims.
But this wonderfully generous award is for progress in religion — as the Foundation has written ‘for a fresh look at the omnipresence of the spirit and of the spiritual resources available to man’. The challenge was to establish a new hospice as a religious and medical foundation bringing together science and the spiritual dimension. David Tasma was searching for meaning at the end of his life and, quietly and privately, made his peace with the God of his fathers. I was so strongly convinced that he had done so that I knew that the Hospice was his window and had to be equally quiet and open. Yet it had to be sufficiently sure of its own foundations to develop a climate in which anyone could be helped, as David was, to turn trustfully to what he believed to be the truth. The people who gradually came together over the years brought with them a variety of approaches and we were shown that our community had to be composed of the unlike, of different types of Christians, of Jews and agnostics, all held together by the strength of their commitment to serve the patients.
Effective symptom control can give patients and their families freedom from the fact and the fear of pain. This freedom is to be used, as we have seen many times, used for family reconciliations, for deepening relations and for the sorting out of beliefs and memories that can help others say, with Pope John XXIII, ‘My bags are packed — I can go with a tranquil heart at any moment’.
The climate that encourages such achievement comes from a search for truth similar to that of any scientific enquiry. This is the ‘Humble Approach’ that Mr. Templeton has discussed in his book of that title. We knew that it mattered what we believed about dependence and death and as we discussed our Christian Foundation, I tried to follow the clues as they were given. I can only refer now to a few of them. Dr. Olive Wyon, who took part in all our five years of meetings as the original Foundation Group introduced me to the works of Teilhard de Chardin. Describing what he terms ‘the divinisation of our passivities’ he writes, ‘the great victory of the Creator and Redeemer, in the Christian vision, is to have transformed what is in itself a universal power of diminishment and extinction into an essentially life- giving factor. God must, in some way or other, make room for Himself, hollowing us out and emptying us, if He is finally to penetrate into us. . . . The function of death is to provide the necessary entrance into our inmost selves. What was by nature empty and void, a return to bits and pieces can, in any human existence, become fullness and unity in God’. Alongside this I put from a sermon by the Anglican, Austin Farrer, ‘Now if Christ’s death had just been something that a man consented to and underwent, it would have been a pattern for our imitation and no more. But because it was an act of God, it had in it an infinite power, to the radiation of which no limit can be set.
His presence is in every death, every suffering. Nearly all our families accept the nurses’ offer to read the last prayers at the bedside which include the 23rd Psalm. . . . ‘Yea, though I walk through the valley of the shadow of death, Thou art with me’.
I attended a series of seminars given by Metropolitan Anthony of Sourazh in those early days and I still have my notes of his discussion of the Four Last Things. I also remember his talking about the strange nature of time and how he helped me to understand why some people in the crisis of devastating disability or mortal illness can live a lifetime in a few weeks, resolving the intractable problems of years. He said, ‘Compare an hour in which we are truly living with the experience of an hour we spend in boredom. The first hour flies past and the second drags and seems infinitely long. In retrospect the whole thing is reversed. The good and rich hours expand in memory. The others vanish into nothing’.
God uses the losses of our lives and of our deaths to give us himself, he travels with us through our pains and sorrows. These are all filled with his redeeming strength because he has suffered and died and did so with no more than the equipment of a man. And He rose again. This is the message of the symbols that enlighten the hospice, the glowing pictures of Professor Marian Bohusz, saying without words that Resurrection and new life can be true for us all. Suns, forests, flowers, as well as the more directly religious themes make up a collection of icons.
How do we find meaning in meaninglessness? The Jewish psychiatrist Viktor Frankl wrote of his experience in Auschwitz in his book, Man’s Search for Meaning. He quotes from Nietzsche, ‘He who has a why to live can bear with almost any how’. He describes how in camp, when all the familiar goals were snatched away, there remained the last of human freedoms — the ability to choose one’s attitude in a given set of circumstances and, even there, to rise above the outward fate. His battle to find meaning has helped many to search for it in far less adverse circumstances.
Viktor Frankl was the key speaker at the large hospice Conference in Canada last October. In Montreal, the first Palliative Care Unit and Service in a University Teaching Centre was set up in 1974 by a surgeon/ oncologist with whom we have close links and who is now the first Professor in the field. In the U.S.A., also in 1974, the New Haven, now Connecticut Hospice, began Home Care without any back up beds, led by a doctor who went there from a joint St. Joseph’s and St. Christopher’s appointment. Home Care Teams have spread widely in the States though there are now some hospice wards and Connecticut has a purpose built hospice as a teaching centre. Norway has a Home Care Team, a large Nursing Home in the Netherlands has a small consulting hospice group, a separate Hospice Unit is being built as part of the large Oncology Centre of Bombay, a geriatrician in Israel has been introducing Hospice methods for some time and I heard from another geriatrician there last week that a separate hospice will be opening soon. We enjoyed the brief time that both these doctors spent in our wards last year. In 1975 a group led by the Senior Chaplain who had spent a Sabbatical with us, set up the first In Patient Consulting Hospice Team in St Luke’s Hospital, New York. This pattern was developed the following year by the radiotherapist/oncologist from St Thomas’ Hospital who comes for regular Rounds with us. These teams have a unique opportunity for teaching.
There is no time to indicate all the ways and all the countries in which the Movement is spreading but I must draw attention to the work of the National Society for Cancer Relief. It has founded a number of Continuing Care Units which are now part of the National Health Service, it funds home care teams and offers a consultation service to many groups who are wanting to set up this work. They, like all of us who have active experience, have some trouble in keeping up with all the requests for information and teaching. Our Study Centre has urgently to enlarge.
But will the religious elements be lost in all this compelling desire to spread the better understanding and treatment of terminal pain? So long as we remember that such pain is not only physical, mental and social but frequently has spiritual aspects also, I believe that it will not. Most of the N.H.S. and other units with no such foundation find that many of the people who are drawn to this work come because of a spiritual commitment. On the other hand, we are a Christian Foundation with people without such a commitment as important members of our team. We began with a Jewish founding patient and have a Jewish Chairman. Nothing could have shown us more clearly that we had to be open to differences of approach than the help given to us by Dame Albertine Winner in the early days and ever since.
Austin Farrer wrote of the infinite power of Christ’s death ‘to the radiation of which no limit can be set’. We do not wish to set limits to hospice care — to the ways it is carried out nor to the different groups of patients who would benefit from this approach. Nor do we believe that one formula for expressing eternal truth can be the only way in which God speaks to his children. Because our commitment is to infinitely diverse individuals we have had to learn the strengths of flexibility and openness, the importance of listening and silence before — often instead of — any words. Because we have been concerned with people whose malignant or neurological disease or whose age and frailty has taken away much of the ordinary activities and trappings of life, it has been easier for us to recognize the essential person within. When we have been able to shed some of our own trappings in response we have experienced something of the presence of the Spirit or the Go-Between God as Bishop John Taylor calls Him. Those meetings, faint and fragmentary as we so often make them by our self concern, have yet been enough to make us optimists about His work in the world today. In his book John Taylor quotes a saying of one of our patients. I was trying to give Mr. P. some photographs of himself taken at a Hospice party. He wanted to buy them, to give me something. We both wanted to give, we were both finding it hard to receive. I held one of my hands out palm uppermost and said ‘I suppose that’s what life is about, learning to receive. . . .’ He put both his hands out next to mine and said, ‘That’s what life is about, four hands held out together’.
You will see from our brochure what St. Christopher’s has been developing these 14 years. It is amazing how similar it is to one I wrote in 1966 when it was all plans and had neither patients nor staff. It has been about hands held out together — receivers from each other and together, receivers from God. He has helped us in the Hospice Movement to learn from our patients and their families and from each other and thus to develop new ways of relieving pain and fear in dying — and to see that there can be living with dying, long term disability and age. I believe this has wide application throughout medicine and beyond. Here we can be helped to look at the passivities and diminishments of the whole of life in a way that brings us together, the affluent with the dispossessed and deprived. Paradoxically death has been shown to be a place of healing, of growth through loss. To speak of strength through weakness and vulnerability does not idealize them and we will continue to relieve all the suffering we can, but here is something to unite us in a sadly divided world. As Christians we believe that God shared this part of human life once on earth — that he still shares it and that Jesus said, ‘I, if I be lifted up will draw all men to myselfʼ. But we also believe that his spirit reaches out in many ways and that their own path will be shown to all the open and vulnerable. I ended St. Christopher’s textbook with a quotation from The Plague by Camus.
‘We’re working side by side for something that unites us — beyond blasphemy and prayers’.
Death remains a mystery, but we have been shown that while it divides it can also unite.
- de CHARDIN, P. T. (1960). Le Milieu Divin, Collins, London.
- FARRER, A. (1960). Said or Sung. The Faith Press, London.
- FRANKL, V. E. (1959). Man’s Search for Meaning. Simon and Schuster, New York.
- TAYLOR, J. V. (1972). The Go-Between God. S.C.M. Press, London.
- CAMUS, A. (1948). The Plague, Hamish Hamilton, London.