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A Farewell Address
Derek Doyle
Delivered at Geneva, Switzerland
September 25, 1999
You realise you are getting older when you find yourself looking back rather than looking forward and notice that your talks contain many more anecdotes than they do visions and proposals. I am now in my anecdotage so thank you for indulging me one last time. This will be one old man's farewell but, who knows, like Frank Sinatra I may keep coming back for another party, hence my title, au revoir.
I like to think my whole professional life has been in palliative care though much of it was not glorified with that name. As a missionary surgeon in Africa I possibly cured a few but most of my time was spent trying to relieve the suffering through surgical palliation. As a part-time family doctor in Scotland I learned how to give comfort care (what a good alternative name for palliative care) to hundreds of patients and their families, though never thought of calling it palliative care. In my hospital work at that time, like most hospital doctors, I tried to persuade myself I was curing people. In the past twenty odd years I have had no illusions - they have been totally committed to hospice and palliative care. I have seen a lot and learned a lot. It is some of the lessons from these 40 years by the bedside that I share with you now, very conscious that none of my views and insights are original.
The first observation is about that word cure. The current attitude of society, and particularly the medical profession, to cure and palliation troubles me. It seems to me that nobody has a right to expect cure, wonderful as it is if they are cured. What everyone has a fundamental right to is palliative care. We are wrong if we regard palliative care as the final luxury when all else has failed but that is how it is seen in most countries. It seems to me that too many people, including governments, see palliative care as the cherry on top of the cream on top of the rich fruitcake. Palliative care is appropriate and must be made available and readily accessible to people whatever their illness, whatever their creed, whatever their colour, their wealth or their poverty, whatever their politics or wherever they live. Whether or not they have ever had treatment designed to cure has nothing to do with it. So long as palliative care continues to be seen as the final stage of cancer care, to be offered only when everything else has been tried, it will not develop and millions of people will have been denied a fundamental human right. We should stop blaming others for not understanding what it is and who is eligible for it. If we do not define it, if we do not explain it, if we do not promote it then we must accept the blame if the world does not accept it.
The second thing which has so struck me in recent years is that death is an unavoidable, undeniable part of life. It is not a medical failure; it is not a disaster; it is not something of which we doctors and nurses need feel ashamed. What should shame us is not death but failing to relieve suffering when, as we all know, there are the means to do so. Not only is death a part of life, it can be a time of personal growth, of reconciliation, of bridge building with Man and with God, of exciting new insights and even self-discovery. One of the challenges of palliative care, and one which I see as unique to our speciality, is creating the climate for such growth. Perhaps that calls for maturity and sensitivity that few of us have. Our training heightens our diagnostic awareness and expands are database but does it make us more sensitive, more empathetic, more compassionate? I suspect not.
When we speak of challenges we must not forget that of teaching and enthusing our professional colleagues and students. I suspect we have got it wrong. We are filling the syllabus with doses and data when we should be trying to change attitudes. Perhaps that is not the only thing that is wrong. Wherever I travel in the world I find palliative care workers who feel they must justify their existence, particularly if they have specialist status, and they do so by parading facts and figures rather than sharing some of the profound insights which so characterise palliative care.
There are even some palliative care workers who regard us as having a monopoly of compassion. We have no such monopoly. Others feel that palliative care cannot be taught because you are either born with the gift for it or are not. Sadder still there are many who feel there is nothing to learn. I believe they are all quite wrong. In the final reckoning I am convinced people like me will not be judged by the number of people we have treated or the number of services we have established. We will not be remembered by the number of papers we have had published nor the books we have edited. We shall be judged by our willingness, indeed our eagerness, to share our facts and figures and sensitive insights about Man and how he reacts to suffering and loss with our students and colleagues in other disciplines and specialities because - at least in my experience - they care as much as I do. In fact most care much more than I do, I suspect.
It has been said that palliative care is more art than science. Perhaps that is one of the things which has put some people off joining our ranks. In an attempt to counter that assertion there is now a drive, particularly in the West, to insist that everything we say and do must be evidence-based, so that in time people will be able to describe palliative care as more science than art. I see both descriptions as inaccurate and dangerous. Surely there is place for balance, possibly equity. As much art as science. As much science as art. Palliative care may, in time, be seen as the discipline which demonstrated that such symbiosis is both creative and powerful.
I want people to see that what we do is far, far more than pain and symptom control - extremely important as that is. I want them to recognise, as I suspect you all do that palliative care is concerned with three things:
The quality of life
The value of life
The meaning of life
Never a day passes without us speaking of quality of life (though I notice we seldom ask the patients what they feel about it). Relief of suffering is a key ingredient but only one of many ingredients. Others surely are absolute honesty, patient dignity, clinicians trained to listen and to speak only when they need to, and environments and practices designed for the patients rather than the staff. Self-evident, I hear you say? If so I must have worked in and visited the wrong places.
I feel passionately that we live in an age when human life and peoples' lives are less and less seen as having value except in economic terms. People are made to feel needed and valued only when they can earn and contribute to society. When they are unemployed or old or diseased and dying, no one speaks of value. They are constantly being reminded how much it costs to treat them, to institutionalise them, to keep them alive, even to offer palliative care. The central message of our work is that you have value, you are needed, you are appreciated, and we enjoy looking after you because you are you! The day we cease to demonstrate that we become just technicians and symptomatologists.
I don't know the meaning of life! Features of ageing, apart from nostalgic dreaming and boring friends with anecdotes, is no longer being certain about anything! I know this experience well, but this I do know. The nearer people get to the end of life, the more they ask why, why, why. Why does Man suffer? Why must he die? Why do the good suffer as much if not more than the bad? Why do so many die young? What is the meaning of it all - life, death, good and evil? Why me?
I have learnt how often our patients ask those questions. I have also learnt that they do not expect or even hope for any answers. What they want - and what you and I in this work can sometimes offer - is someone who will listen and say nothing. Someone who will share their humanity. Someone who knows that shared friendship at one of the loneliest times in life is precious beyond words. By the time we die we have had enough of listening to people, especially politicians, who think they know everything and have all the answers. I suspect one definition of a truly great person is who one who knows the questions to ask, but does not profess to knowing the answers.
Sharing our humanity is the theme of a little book of my memoirs I hope to see published before the end of the year - "The Platform Ticket: Memories and Musings of a Hospice Doctor."
A palliative care service, I say again, is about quality of life, value of life and meaning of life. Those three things are basic human rights. It must be asked therefore whether you and I are ensuring that everyone has access to them. The answer is no. We have scarcely begun to do so but I believe with all my heart, that the International Hospice Institute and College is a key player in all of this.
As funds come in and more and more colleagues are enabled to accept invitations to teach and to demonstrate in centres round the world so the message will spread like a forest fire. I remember when we could easily count on the fingers of our hands the number of hospices in the United Kingdom. Today there are more than 6,100 worldwide. I recall us trying to establish education and training in palliative care and today we have professorial chairs in the UK, Australia, the USA and Canada with palliative medicine recognised as a speciality in several countries. It can be done!
We need people old-fashioned enough to work without thinking of financial rewards or international honors. We need people willing to share and to sacrifice; people with a clear vision yet not interested in empire building. We need people who share our vision of palliative care re-instated at the core, at the very heart, of medicine and nursing, where it used to be before we dreamed of cures.
I suspect that most of the world's population is more down-to-earth and realistic than the doctors looking after them. They are not dreaming of the impossible. They are not asking for something we cannot provide. They are simply hoping against hope that we will care enough about them to ease their suffering and help them to know that their lives do in fact have meaning and value, as well as quality. I suspect that suffering and death are acceptable if they have meaning. Just the dreams of an old man? I think not. With all my heart I hope not.
Thank you.
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