Cicely Saunders was born in 1918 and educated at Roedean and St Anne’s College, Oxford where she read politics, philosophy and economics.
During the war she trained at St Thomas’s Hospital taking her BA in 1945 and MA in 1958. After working as a medical social worker she took her MB and after junior appointments at St Thomas’s and the Royal Waterloo Hospital, she moved to St Mary’s to take up a clinical research fellowship.
She’s the English founder of the modern hospice movement and was medical director of St Christopher’s Hospice in London from when it opened in 1967 until the mid 1980s.
She has received many awards for her pioneering work including the Templeton Prize (1981) and the BMA gold medal (1987). Her publications include The Management of Terminal Disease (1978), The Living Idea (1981) and Living with Dying (1983). She was awarded the OBE in 1967.
Saunders died of cancer at the age of eighty-seven in 2005 at St Christopher’s Hospice, the hospice she herself had founded. I interviewed her in 1992.
You have tended to describe your childhood as unhappy. Was the unhappiness a feeling which consciously registered at the time or was it something you became aware of in retrospect, as it were?
I certainly knew that I was unhappy at school, and that was fairly early. I was then sent to boarding school at the age of ten, and I knew that I was not happy there. My unhappiness at home was very much a feeling that at the beginning of the holidays everything I did was right and at the end of the holidays everything I did was wrong, and I didn’t quite know why. On the other hand my parents both tried in their very different ways to help but found it difficult to do so, and part of the problem was that they weren’t getting on with each other.
Your father was very ambitious for you. Was that a mixed blessing?
No. I’m very glad he was, because if you have a discontent with the way things are you can either retreat or go on to attack life, and his influence had the second effect. I was determined to do something with life, though I didn’t know what, and although I didn’t like the difficulties at the time, I’m very glad it all happened the way it did because nothing has been wasted. An understanding of what it felt like to be unpopular and rejected was very important in the work I did later.
You didn’t like Roedean. Do you think that if things had been happier at home you might have been less miserable at school?
I might have found it easier to make friends. At home I was made to feel I was difficult, and that did not help me make relationships easily which is what counts at school. But I came through and I finished up head of the house.
Do you think Roedean and Oxford prepared you well for the life that lay ahead?
My housemistress at Roedean, who went on to run a girl’s borstal, and my very special tutor at Oxford, Miss Butler, with her tremendous social consciousness and her delightful humour, were both a very great influence on me. Anybody who met those two had touched absolute pure gold, and to have known them was enormously important and beneficial. The other thing about Oxford is that it made me work and sharpened my ability to think.
Your parents’ marriage was not a success. Opinions are very divided on the question of whether parents ought to stay together for the sake of the children. Given your own experience, where do you stand on that issue?
I think parents should stay together but they should be more honest about what they are finding difficult and not try to hide it. To think of involving the children would often help. Children find divorce so harmful because they feel that somehow it is their fault, and to experience failure at a young age is a very difficult thing in life. When my parents actually separated I was torn between the two. I was very much on my father’s side since I found my mother extremely difficult but I also felt a degree of responsibility for her. It was all extremely difficult, but it’s a very long time ago now and the wounds have healed.
What was it that triggered your conversion to Christianity…was it a reaction against an atheistic upbringing perhaps?
I had been searching for a real Christian meaning for several years and had been reading Archbishop Temple, Dorothy Sayers, C. S. Lewis, so I had come quite a way with the head. It was only when my parents finally separated, however, and I felt to a degree responsible for it, that I really reached the end of what I thought I could cope with. The trigger was essentially a sense of need. I also met some people who were much more straightforward about becoming Christians that any I’d met before, and although that is a version of Christianity that I have left behind, at the time it was simple and accompanied by a degree of mystical experience. I felt an absolute assurance that I had been turned around and told that all the work had been done and I only had to accept; and that instead of having the wind in my face I had it behind my back.
Your earliest participation in the Church was evangelical – prayer meetings, Bible study and so on. How do you look back on that period? Does it seem now to have been a rather immature approach to religion, or a substitute for something missing in your life perhaps?
No, it was a good start. That way of taking a fairly cut-and-dried approach to religion is perhaps not very adult, but it suited me at the time since in many ways I probably wasn’t mature. I’m very glad I started that way, because to know the Bible well and to have it as a resource for the rest of your life is worth an enormous amount. I owe the people who helped me at that point a very great deal, but I had to move from the feeling that this was the only way into seeing a much broader perspective. That took quite a long time, but it happened from quite a solid foundation.
You founded St Christopher’s in 1967 – only twenty-five years ago – and yet the hospice movement is now almost universally accepted. Do you think it was an idea waiting to happen?
Yes. I don’t think there are too many original ideas in the world, but what happens perhaps is that you respond to a need. I had done a lot of travelling, an enormous amount of reading, I had listened to a great many patients and what emerged was the need for pain control, for the whole breadth of pain – in body, mind, spirit and family – the need for home care, the need for solid research, for education. All these came in different ways, and it was like putting them into the kaleidoscope, giving it a shake, and watching the new pattern take shape in the form of modern research and the whole hospice idea. In general ideas find people, rather than people finding ideas; you just have to have your antennae up.
It’s only comparatively recently that we have focused our attention to any degree on the process of dying, the care of the patient and members of the family. Before the hospice movement people were simply expected to cope and on the whole one assumes that they did…or didn’t they?
There was a great deal of isolation, suffering and distress. One effect of medical advances was that there was a contradiction on cure, and symptoms were seen only as signposts along the road to a diagnosis which then might make cure possible. To deal with the signposts was considered to be very second-class medicine, but we now recognize that the need for control of symptoms, while the search for a basic cure proceeds, is very important. We have to concentrate on the old principles of care and caring, not in the sense of ‘tender loving care’, but in the sense of efficient, competent, but still concerned and loving care. It is not merely nursing; it involves a whole team – doctors, social workers, chaplains, therapists, all working together to enable patients to live as fully as they can until they die. We’re not just about peaceful dying; we’re about living until you die, completing your life, relating with your family, family living on afterwards. Living as well as dying.
It was your experience with a dying patient after the war – the first man you loved – that made you determined to start St Christopher’s. Did you interpret this as God moving in mysterious ways?
I did at the time, yes, and I still do. It was very much a feeling that this was what was meant, but not in a way that I could sit back and let it happen, but by working as hard as possible.
Falling in love with a dying man must be very traumatic, because you know from the start that death will interrupt the normal process of consummation…
I don’t think we’re very free about falling in love. I agree with Christopher Fry who says at the end of his play The Dark is Light Enough, ‘we’re elected into love’. It is something which happens, and the fascinating thing is that you still feel in a sense that it is one of the freest acts. (This is a very interesting comment on the idea of free will and the love of God, but that’s another matter.) I loved him, David he was called. It was very short, very simple, and I remember him with great fondness. He completely altered the course of my life, which was a wonderful thing to happen from one man alone. He gave us the whole hospice movement, and the phrase, ‘I’ll be a window in your home’. His was a commitment to openness, a commitment to everything we could bring together from the mind with the friendship of the heart. When he very quietly and privately returned to the faith of his forefathers – he was Jewish – without ever seeing a rabbi, he left me with the assurance that he’d found his own way, and that everybody in my care would in turn find theirs. In spite of the fact that at that point I was fairly evangelical Christian, I came to understand that patients must think in their own was as deeply as they can, and it matters not if it is different from my way. All that comes from David.
But to fall in love with a man who is dying is almost like a fusion of hope and despair…
No…it didn’t feel like that at the time. There wasn’t really an alternative; it just happened. It was much the same when I fell in love with the second Polish man years later. It was the most intense and liberating experience. I was profoundly sad afterwards, but I wouldn’t have missed it.
After the death of the second man you loved there followed a period of what you describe as ‘pathological grieving’. How did you eventually come to terms with that?
By an absolute assurance of his happiness – because I do believe in a life beyond this one – and my own gratefulness for what I had learned. And of course I met my third Pole in due course, and although we had to wait a very long time before we could marry, he is now nearly ninety-two and we’ve been enormously happy together.
But tell me, why do you always fall in love with Poles?
I haven’t the faintest idea. I have really no answer other than to say that is what happened.
You have said you believe in an afterlife. Does that mean you expect to meet those you have loved after you die?
I hope so.
You expect to meet all three men?
That would not present a problem for me.
Do you now feel immune from the grieving process, or have you simply learned to manage it better?
I’m quite frightened of how I will miss my husband. He is pretty frail and I have a certain amount of anxiety as to whether he will get through this winter. I know I shall miss him and grieve for him terribly, but I am more fulfilled person now because of being with him, and therefore I have a better chance of handling it. I have also learned to express grief and accept help, so although I don’t anticipate that it will be anything other than devastating, I shall survive.
The phrase ‘helping people to die’, suffers from a dangerous ambiguity. Hospice work involves control of pain by administering drugs, easing the path to inevitable death without actually promoting it. Isn’t the dividing line sometimes very thin?
It depends on how you start your definition. Instead of helping people to die, I prefer to say helping people to live until they die. We concentrate on the quality of life left to them, and that may be weeks or months; we’re not here just for the last few days. There are many patients who come here and are discharged again; people tend to think there’s only one way out of a hospice, but that’s not true. People go out for weekends, they go out for holidays, they sometimes go out for good. The sooner you are in touch with a hospice, the more quality of life you will have, and with some people the whole trend changes and they have longer than they ever believed possible. We once had a girl of seventeen who was transferred to us from another hospital, and she lived eleven years, and although that is a rare occurrence, people living months longer than expected is not at all unusual. Living better, even for a short time, may make an enormous difference to the way they feel about themselves; it also helps their families find the strength they hardly realized they had, and the ability to carry on afterwards.
Nowadays ethical dilemmas present themselves on an ever-increasing scale. How best are these resolved – by government committees, by the Church, by philosophers…?
They are certainly not best resolved by having a private member’s bill through Parliament because that tends to produce a very emotive debate and the major issues are simply not addressed. The commission would have to include the Church, philosophers, the medical and legal professions, but the selection of people for the commission has to be given the most careful consideration, because it is easy to rig the results by selecting certain people. What is required is a debate of rather better quality than we usually have in the media where easy answers are aired, such as the suggestion that patients should be able to ask a doctor to end their lives if they feel their suffering is intolerable, without any consideration of the pressures on the rest of the community. This is a very unsatisfactory way of tackling these complex issues, but that’s what tends to happen at the moment. In the recent case of the doctor who gave a lethal injection to his patient there was no evidence that he had consulted experts in the field of terminal pain. You don’t have to kill the patient to kill the pain, even in those circumstances, and think there could have been another way out. It has made the public very afraid, and fear does not produce good laws. For example, whatever we may think about abortion, there is no doubt that when David Steele brought in his bill he did not intend there to be abortion on demand, but that is what happened. I am not anti-abortion in the way that a lot of pro-life people are – I think it is unfortunate but understandable. But what we don’t have is an adequate support system for the children who come forward for abortion. Similarly, we have to provide proper help and support for those who are dying. If we simply pass a law saying it is all right for physicians to assist suicide, to promote the right to a quick way out, it would have the same effect as the abortion bill. And there’s no way of pulling back once the flood gates are opened.
In one of your books you set out your views on euthanasia, quoting the Church’s position: ‘In order to permit euthanasia it would be necessary to show that a change would remove greater evils than it would cause.’ How can you be certain that these ‘greater evils’ would follow?
In a sense, I can’t be certain, but neither can Ludovic Kennedy be certain that they won’t follow. There is some evidence in the Netherlands, a country which is tremendously pro-euthanasia, that elderly people feel a degree of pressure, and although the doctors reported to the Lancet giving the impression that everything was well in the Netherlands, they also pointed out that the guidelines are often not applied, and that patients are reported as having died a natural death when they haven’t. There was also a study showing that a great many elderly people were concerned about what was going to happen to them.
But the fact that something is open to abuse has never been a sufficient reason for banning it altogether – drinking alcohol, sex, ect. Why shouldn’t we grant a terminally-ill patient his wish to die sooner rather than later?
It would pull the rug from under a whole lot of vulnerable people, and as was said in the House of Lords when Baroness Wootton’s bill was discussed, the right the die could all too soon become a duty to die. I don’t believe ours is a society in which that would not happen. People don’t awfully like the old, they don’t like looking after dependants, they don’t like thinking that somebody is in pain, they find it unpleasant and disagreeable. To cut it all short seems like the answer, but I take Churchill’s view: people who have simple answers to complicated problems are usually wrong.
Is it ever a greater evil not to allow a person his wish to die?
You have to be very careful and tease out what that person is saying. If he is saying, let me die, he is usually actually saying don’t do every last treatment to prolong my life, and if you reassure him that you will not do that, that you will help him with his individual needs, that you will not abandon him, he will usually stop saying, let me die. When people say that it is usually as a result of unrelieved pain and poor communication, both of which we can do something about. There are very few who actually say, kill me, and mean it. It is mostly people who are perfectly fit and healthy who say that they would not wasn’t to be kept alive with Alzheimer’s Disease, or to be in a state of dependence on others. But if you have good friends, if people are good neighbours, if you have competent care, dependence can have good qualities. I remember a long time ago a young man with progressive paralysis looking at another patient, and saying that if his illness ever deteriorated to the same extent, he would want to take his own life. But when he did get to that stage he felt quite differently about it, and I remember him saying to me, ‘I can’t see round the next bend but I know it will be alright.’ The situation can seem very different once you’re in it. This is not to deny that we have lonely people, people with unrelieved pain and inappropriate treatment, unsatisfactory nursing homes and shortage of money, but if people go on wanting to die, it is society’s failure.
Have you a clearly developed view of what happens after death?
No, I don’t think anybody could have. It remains a mystery. But I have seen many people whose spirits have become stronger as their bodies have become weaker, people who at the very end of their lives meet you at a depth which is quite difficult and frightening for those of us who are well to reach. I believe that the essential inner spirit of man survives. Why should the mind and spirit leave no trace? Even in life we have glimpses of mystery. For example, I happen to love singing in the midst of a good choir, it’s the most wonderful feeling; it matters what you do and yet you are unimportant. Some things are beyond ordinary understanding but none the less real.
St Christopher’s is a religious foundation but religious faith is not compulsory for those who work or are treated there. How in practice do patients respond to St. Christopher’s?
They find it a good place, a welcoming place, a place without pressure. There are very simple prayers morning and evening in the wars but you don’t have to listen. There is chapel, but you certainly don’t have to go. Many of our staff don’t have that sort of commitment because what we are concerned with is the whole spiritual side of life which is much wider than the strictly religious. We are very conscious of the contribution of people of many faiths or none. Those who come to us are often searching for answers. What has my life meant? Those who are able to say, as someone said not long ago, ‘I feel as if I’m a person again’, are reaching the stage in which they will perhaps be able to come to terms with their situation. If they can do that, if they can find some sort of meaning in life and it makes it easier for them to lay that life down, then we would be very happy for them. But that is said in spiritual rather than religious terms. If people choose never to say anything, that’s their freedom. We do a great deal of listening, but we don’t do any converting as such.
How do you steer a path between the certainty of faith and the flexibility of tolerance?
By concern for people which rings through both the Old and the New Testaments, and which I believe is found in all religions. There is certainly a great deal to learn from other faiths. What convinces and enables me is not necessarily the same as convinces me and enables somebody else, and that’s a position I am comfortable with. I am not comfortable with people who think there’s only one way.
You once said you were certain about what you consider to be ‘a good death’. Can you enlarge on that?
I don’t remember saying I was very certain, and if I did I was probably wrong. It has to be the death that is good for that person. There isn’t just one, there is one for every individual.
Is it part of your experience that those with faith meet a more peaceful end than those without?
It depends what sort of faith they have. If it is a faith that God will not let bad things happen, that doesn’t last very long. But if it is a faith which includes the possibility of bad things happening with the notion that God will see you through, then that can be a great support. It’s also very much a question of people’s personalities and of what’s happened to them in life. You cannot make it a cut-and-dried matter. Anybody who makes dogmatic statements about those with faith dying well are on dangerous ground. It’s an area where it is as well not to be dogmatic, but there are certainly people who make something completely creative out of dying, and in my experience those who have usually been people who have had a matures tested faith throughout their lives.
Part of the hospice philosophy is to tell the truth to patients about their illness. What happens to those who are quite unwilling or unable to face the truth?
We don’t tell people who don’t ask. The hospice philosophy is not that people must know, but that we must answer whatever questions are put to us. Most people do know inside themselves but they may not necessarily want to share it, so we have to wait.
Britain is becoming increasingly secular. Isn’t there a problem that the sort of ethos within which the hospice movement is contained is simply not available to a large number of people?
There are several secular hospices, there are lots of secular people working in hospices. We’re not all religious by any manner of means; what we share is a concern for people. Many of us do have a religious motivation in our concern, but we are not here as a religious enclave into which people have to fit. This is an image which tends to be put upon us rather than the other way round. In my experience there are a great many people in this country who have a large unformed faith – we are not quite such an irreligious society as is commonly supposed. Those who work for us do not necessarily have to have a vocation as is sometimes thought; what they do have is a concern for others and a longing to help people do well at the end of their lives. A great many of our staff are here for only a couple of years before moving on, but they will take a lot of what they have learned about people into other fields, and that is very important.
Have you ever come across hospice workers who are not as kind to patients as you would like them to be?
Once or twice staff have been short with patients, and we have had to understand that they are under a lot of stress, and have given them counselling or extra time off, but generally people who are likely to be unkind don’t come into hospice work. This is sadly not always true in some nursing homes – old people can be terribly maddening, and almost ask to be bullied, and there are people who just don’t resist the temptation. Hospices, like the people who work in them, are not perfect, and sadly we have pilfering here in just the same way as in every hospital in the country, but on the whole the ethos is of kindness and concern those qualities do gather in the right group of people. Everybody is taken on a trial basis for three months and you can usually sort out those who are unsuitable at that stage, but they are very few.
Some years ago you wrote in one of your books: ‘We have reached a place in hospice work where there are a lot of inbred beliefs that have become sacred cows. The most constructive thing I could do to improve hospice work would be to conduct a sacred cow shoot.’ What lay behind that remark, and did you ever conduct your shoot?
That goes back to a conference in the Royal Society of Medicine when people were talking in a rather unrealistic way about hospice work. I’m afraid I was speaking as something of a sacred cow myself at that time, but what I had in mind were the rather idealized notions such as everybody must have faith, everybody must have a good death, everybody must be peaceful and smiling all the time, nobody must show anger, and all the staff must be perfect and never lose their tempers. It was also the idea that such and such a drug was always the perfect answer. Did I every conduct my shoot? Well, a great deal has happened in St Christopher’s over the years, and we continue to ask questions, which is as it should be. I would much prefer that that we should be referred to not as a centre of excellence but a centre of enquiry.
You are reported to have said in anger on one occasion, ‘I’m not a cult figure.’ What prompted the remark and what occasioned the anger?
Americans have a tendency to make cult figures out of people like me which is why I feel very fortunate that I didn’t work in America. The remark was occasioned by somebody in America coming up to me and asking, almost literally, ‘Can I touch you?’ So I said, ‘I bite.’
Your biographer describes your relationships with the first two men you loved as ‘unconsummated, unfulfilled, unresolved’ and yet you have not been inclined to offer your thoughts on these obviously profound relationships. Is that because you dare not, or does it come from an urge to be private?
An urge to be private. The relationships belong to them as well as to me.
You finally married in your fifties. Did marriage alter the order of priorities in your life?
Yes. My husband’s priority was to his art, and mine was to St Christopher’s, and it took us a certain amount of time to sort out our priorities to each other. At first when he was fit enough he had and he needed his independence, and I had a degree of freedom, even to travel to America once or twice, but once he became less well and had to give up his London studio he became my top priority. My work as medical director at St Christopher’s was handed over to Dr West and I assumed more the role of elder statesman. My husband is still committed to his art, and I am still committed to St Christopher’s, but he takes priority. I have many invitations to go and give talks but I refuse because I won’t leave him. He’s now very frail and dependent on me.
Does he still paint?
Yes, he is still doing portraits. His eyes and his hands are as good as ever, and his portraits are some of the best he’s ever done.
You often said that you felt a great need to be married. Why was that, do you think?
I think most people do. I don’t think there’s anything peculiar about that.
Did you ever want children?
Not so much as to be married. The work took over that need, but the need for companionship and, well, love, was much stronger than the need to have a family. I’ve been completely fulfilled in the work that I’ve done and I’m very glad I waited to be married to Marian. He’s worth everything.
Many people comment that you became a much happier person after marriage. Were you conscious of a sadness before that time?
I was conscious of a loneliness, yes.
Those who maintain that we do not fall in love by accident, might suggest that in your life, love and death are inextricably linked – or is that too Freudian an analysis?
A bit, yes. Maybe it was with the first two, but after all Marian is now nearly ninety-two and it’s living together, not dying together, that’s been important. The fact that I did fall in love with people who were dying gave an emphasis to how important people are at this time in their lives, and although I would never have consciously chosen it, I think it gave an impetus which wouldn’t otherwise have been there.
Do you view your own death with equanimity?
If I thought I was going to die before my husband I would be in a great state, because he is so dependent on me. Dying with unfulfilled responsibilities – something I have witnessed many times among many patients – is a very difficult thing to do. Dying when your responsibilities are fulfilled is easier, just as a full life is easier to leave than an empty one – feeling that you have made no impact on the world and that nobody is going to miss you is terrible. As far as my own death is concerned, I don’t know if I have complete confidence in myself, but I certainly have confidence in the people around me and I do hold on to a certainty that God is there, and that I wouldn’t ever be alone since He who Himself shares the dying of all his children.
Because of the area in which you work, there is a temptation to see you as a latter-day Florence Nightingale, but in order to achieve what you have achieved you must have had to be very tough, perhaps even hard-headed?
You certainly have to be very determined and single-minded, and that can mean being tough with some of the people along the way. Patients matter more than anything and if you expect other people to work as hard as you do they may find that a bit much.
You have been described as a very forthright character. Some who have worked with you have even described you as autocratic and imperious. Do you think there is any truth in that?
I think there might have been in the past, but not now. A pioneer is apt to be that way, but there comes a time when you have to hand over. But in fact I was always able to delegate. For example, the sister and the doctor who developed our home care were given a completely free hand. That was in 1969, so even in my more dogmatic times I could still delegate, but I’ve certainly mellowed since then. After all, as things become established and more secure, you don’t have to fight so hard.
How has the hospice movement faced up to the challenge of patients dying from Aids?
When we started there was a tendency for the Department of Health to look at the situation in very simplest terms: Aids patients die, hospices look after dying patients, therefore hospices will look after Aids patients. We had to remind them that all our cancer patients weren’t going to disappear, and that we did not necessarily have the expertise to deal with Aids patients. Special centres were then set up – the London Lighthouse, the Mildmay Mission – and we learned from them. Once we established that there was something we could offer, we made ourselves available as did other hospices. At the same time I don’t think you can expect hospices to take on everything. It was only because we focused on patients with cancer and motor neuron disease that we were able to do soundly based research and make an impact in the field of medicine. If we hadn’t done that, if we’d said instead that we would take in everybody who was dying, we would never have been taken seriously, we would never have been able to speak from a position of strength.
In 1987 you said, ‘We are worried that we will have to displace cancer patients if we take Aids sufferers…units such as St Christopher’s were pledged to offer places only to cancer patients.’
We were pledged to give mainly to cancer patients with a limited number of longer-stay patients, but there is an escalating demand on our home care and our beds, very much greater than it was five years ago, and we haven’t worked ourselves out of a job yet. We simply don’t have the resources to take on a new job, but we are now working more and more in the community where a lot of people with Aids will want to be, and so we may become more involved. Don’t forget that a great deal of the money given to us to build and to carry on the hospice movement is given in memory of patients who have died of cancer, so we do have a commitment, though not an exclusive commitment.
Weren’t you worried that such a statement might be misinterpreted?
No, because you don’t expect everybody to do everything. You don’t expect an orthopaedic centre to take in patients with broken limbs in a time of frost. People have their own commitments, and that is a perfectly reasonable state of affairs.
I think I’m right in saying that the hospice movement was criticized by the Royal College of Nursing which claimed that hospices were refusing to treat Aids patients for fear of losing private donations.
That was an article in The Times based on a report from one member of the Royal College of Nursing. I don’t think we need take that particularly seriously. That was in isolation.
How do those who work constantly with the terminally ill cope with the immense burden of death?
By working together as a team and by being aware of their achievements. It is draining, but it is not depressing. When you see patients and their families come in with pain and conflict all over their faces, and then within two or three weeks you see a resolution, that is a very rewarding experience. To be able to take away pain and to help a family find their own strengths, and to know you have made a difference, all that is deeply satisfying. And of course many of our people have a Christian belief that death is not the end, and that not only do we not have to worry about patients after they die, but they’ve set out on a good journey.
Few people can have been so involved with death and dying as you. Has it taken its toll, do you think?
You would perhaps have to ask other people. It may have taken a toll, but it has also opened up exciting possibilities. It had made me move from a traditional, perhaps rather limited, faith into an exploration of meaning. I feel I am learning all the time.
Don’t you think it a cruel paradox that so much should be invested in the death of one person when death occurs across the globe often on a massive scale because of starvation, war and so on?
Concentration on a limited number of people has over and over again been shown to tease out general principles which can then be applied across the board. You can be overwhelmed by death on a global scale, but when you are committed to a small area, you can then examine how it can be made relevant on a wider scale. The hospice movement spans sixty countries, including places like Swaziland where there is major trouble but where the attitude of caring for people who are dying in the community still obtains. That would not have been possible if the pioneers of hospices in this country had not laid very sure foundations; and to do that you have to concentrate.
The hospice movement promotes ‘death with dignity’. Can you sum up for me what you understand by that phrase? Do you think it means the same to all people?
I wouldn’t agree that that’s our major commitment. The hospice movement is committed to living until you die. Death with dignity means different things to different people; it has come to mean direct euthanasia to some people, switching off machines to others, or simply good palliative care. It is therefore a fairly unhelpful term. I would much prefer to say ‘dying with a sense of personal worth’. That’s what hospice is about.
You have often described death as an ‘outrage’, and indeed you must have seen its terrible effects countless times. Do you ever have difficulty in reconciling a particularly harrowing or poignant death with the idea of a benevolent and merciful God?
When I describe death as an outrage I am thinking in particular of the way in which we spend all our lives learning to love, and death is about parting from those we love; that is the really outrageous thing about it. But I also think a loving and merciful God gave away an enormous amount of what one might see as omnipotent power in making a free world and therefore a flexible and dangerous world in which men and women can use their freedom wrongly. I certainly don’t think that God picks out people for this and that disaster; but I am certain that he always shares it. God is within his creation in a way which means that he suffers when we suffer, and that is a burden beyond anything we can possibly imagine.
But do you think without faith you would have been able to do the job as well as you have done it?
I know there are some people who do an excellent job in this field without faith. I personally couldn’t.
Does death still seem awesome and mysterious to you? Does it hold any terrors?
If you don’t feel a measure of awe and fear, then I think you’re not looking very clearly. But you have to go out into the darkness and put your hand into the hand of God. That is a very anthropomorphic way of talking about God, but I still think it’s a helpful phrase.
A life devoted to death is by any standards an unusual life and one which is likely to remain mysterious and paradoxical to most observers. Is it something you understand fully yourself?
It all seemed very clear at the time. I asked what I should do. I believed I was told what I should do, and I got on and did it. It was as simple as that.
If you were to turn the clock back, would you have done things differently?
You can always look back and think of mistakes…you can wish you had been kinder, or more understanding, or learned something more quickly. But I’m very grateful to have been able to do the things I have done. And I wouldn’t want to start all over again, I must confess. I feel much too tired.
Is there anything left that you feel you have to do?
I want to tidy up all the archives. But first I want to see my husband safely away, not in the sense of wishing him away, but wanting him to go peacefully and happily. My prayer is for him to be able to die quietly at home with me.
You have obviously been very happy with your husband. Do you love him as much now as when you first met him?
Oh, infinitely more. This is one of the very exciting things in life: you feel that it’s as good as it can be, and then come the next few days and it’s better still. It’s been a wonderful mature growing together. He has an enormous regard for me and thinks I’m splendid. With his pupils he was always a little inclined to regard all his geese and swans. And so with me. I am his swan, and that’s a very nice thing to be, especially when I spent a large part of my early life thinking I was rather an ugly duckling.