"You must have seen a few changes in the way we think about ethical issues in your 25-30 years in palliative care. You should write about it. It would be both interesting and informative, particularly for those coming in to the field of palliative care recently." That invitation by the Chairman of the International Hospice Institute and College is my only excuse for what follows.
I am not sure whether there have been any changes in the ethics but there have certainly been changes in emphasis and understanding and, of course, in our professional interest in and concern about, medical ethics particularly as they relate to palliative care. I cannot recall a single lecture or tutorial on ethics as an undergraduate, nor can I remember any mention of terminal care far less any teaching and guidance on it. The situation was no different in my postgraduate training.
My use of the words 'terminal care' was no accident. That was what it was 30 years ago. So near death were most of our patients that there was little talk of rehabilitation, discharge home, even palliative radiotherapy and chemotherapy. What most struck me then was how many patients came to us in appalling pain and suffering yet still on treatment which even the referring doctors admitted was futile but being continued ' because to stop it would take away hope.' One of the earliest challenges I remember was that of defining hope. I am still working on it. Today more patients come with their pain better managed but many are still having expensive and unhelpful investigations and receiving futile treatment.
As everyone knows the ensuing years saw terminal care give way to palliative care. The change was more than a matter of semantics. Patients were being referred earlier, often with weeks then months, and finally for a few, with years of life ahead of them. We began to recognise that the principles of palliative care were, in fact, the principles which should underpin and describe all good clinical care. The need for a more helpful definition of what we are trying to do became apparent as politicians, public, patients and professional colleagues demonstrated how confused they were about palliative care. Obvious as the focus of our work was to us we had to admit that some observers saw us as dealing with chronic illness, some with all incurable illness (however long the life expectancy). To many we were pain experts and, to more than we might care to admit, we were the people who performed euthanasia with consummate skill and compassion.
This was one of the reasons a new definition was produced around this time by the Association of Palliative Medicine of Great Britain and Ireland - The care of people with active, progressive, far-advanced illness and a short life expectancy for whom the focus of care is the quality of life. Predictably some have not been totally happy with it, for example, because no mention is made of relatives and friends, but around the world it is being found helpful. Perhaps this is because it does not specify pathology or time and focuses unequivocally on quality of life. Researchers had long been interested in quality of life and means of measuring it but now we, in palliative care, had an ethical imperative to define it, to study it and to ensure that our patients had it restored and maintained for whatever time was left to them. We soon came to appreciate that doing so was going to prove more difficult than easing pain.
Mention of quality of life leads inexorably to related issues; consideration of relationships, confidentiality, spirituality, the relief of suffering whatever its cause, rehabilitation, rights and responsibilities, and Man's relationship with his God. The challenge of ethics was growing faster than some of us thought we could cope with. At the same time we became aware that if we did not address the issues others, who knew much less about palliative care, would try to do it for us.
Perhaps some of the issues just listed are worth further attention here. Palliative care workers early recognised that it is well-nigh impossible to separate the needs of the patients from the needs of the careers. Obvious as it seems they recognised that careers have needs of their own and excellent care of the patient does not always lead to a more contented relative. One of the most interesting pieces of research done in the earlier years of palliative care showed that hospitals can provide good patient care but they usually fail to care for the relatives as they deserve. Patient-centred care must not, cannot, exclude the relatives but who is to give the care and how?
Presumably we all came into palliative care sensitive to the need for confidentiality but did we appreciate that inter-professional team-working, a lynch-pin in this work, entails information being shared by ever larger groups of professionals? Permitting every member of the team to see patient records and sharing a feast of information, often of the most delicate nature, at team meetings, makes confidentiality more a dream than a reality. I suspect that few of our patients have any idea how many of those caring for them know as much as they do about them, some of it quite irrelevant to their care.
Recent years have seen a move to separate spirituality from religion and for many palliative care workers to take a deep and scholarly interest in spirituality - 'the search for existential meaning'. This move would perhaps have happened anyway but it seemed to parallel the increasing secularisation of palliative care. In the early days every hospice was 'founded on Christian principles' and most senior members of staff were expected to have a well defined faith. Not now. The secularisation of the hospices mirrors the secularisation of our society. Palliative care workers certainly recognise Man's search for meaning but, so it appears, less often look for it in faith and a relationship with God. This seems to beg another question. When the so-called hospice movement started it seemed to many of us like a light, pointing to the power of love and compassion, a light in a world characterised by conflict, competition and selfishness. Never intentionally a religious movement nevertheless it recognised that as people get near the end of life they search, as they may never have searched before, for meaning. It seemed as though the hospice movement might bring many of us back to what we intuitively knew were important - honesty, integrity, shared humanity and simple faith. Seen through this man's eyes, this does not seem to be happening.
To the observer palliative care is, and always has been, pain and symptom control. In ethical terms the patient had a right to be freed from suffering and the clinician has a responsibility to ensure that that happens. Not only has that happened but the ethical imperative to research all we do has also been grasped in a way few of us expected. What is somewhat distressing, however, is that the palliative care world seems to be divided into those who research and those who do not, a sad fact when it presents such opportunities for collaborative research. The results of it might help mankind everywhere whether or not there are palliative care services.
A critically important ethical issue, not only in palliative care but in every branch of health care, is that of resources. I remember being challenged on this nearly 30 years ago. When word got out that a hospice was to be opened a group of citizens, very vocal and influential, formed themselves into a protest group. Their argument was that our patients had already had everything which money could buy for them and were now dying. It was morally wrong to waste any more very limited resources on them, resources that could better be used to provide for the homeless, the chronically disabled, the elderly and so forth. As palliative care developed, their opposition did not diminish. The more the public gave generously to local hospices the more other, equally well-intentioned, charities saw their incomes falling and the recipients of their care suffering like a disadvantaged group. To this day there remains a painful ambivalence. Other charities recognise the work and worth of hospices and their provision of palliative care but see them as competitors for a shrinking pot of gold, see society as ignoring the needs of others who have less articulate advocates than our patients do.
I am troubled by this issue of resource allocation and how we, in palliative care, respond to it. It is too easy to feel proud that we have recruits to this work, money to provide it and a wealth of public (and increasingly professional) support for what we do and not stop and ask whether we are behaving ethically with regard to resources. I suspect we are not being totally ethical. We often speak of the high nurse:patient ratio we need in palliative care but has it been researched? We talk of the time we must spend at the bedside or sifting through years of care notes but have we researched not only how much time is needed but how effectively we use it? It has become blasphemy to challenge the size and composition of a team but should it not be researched in case even one member, a precious resource, can be released? Only very recently have we begun to study the effectiveness of Day Care, the number of doctors needed for this or that model of care, the models of Home Care but each uses precious resources. Rightly we all stress the importance of conducting a scientific needs assessment before embarking on any new palliative care project. How many of us have ever done so? Everyone in hospice and palliative care seems to feel confident that what they have in mind and what they eventually do are totally appropriate. Until we can justify our use of precious resources surely we cannot claim to have been acting ethically.
Some readers, familiar with palliative care writing, will by now be asking when the subject of euthanasia and physician-assisted suicide will come up. After all, I can hear them say, they are the key issues in palliative care ethics. Well, thirty years ago I scarcely heard them mentioned. Palliative care, like the hospice movement, did not come into being to combat euthanasia and PAS though with all that has been written on it you might be forgiven for thinking so. Palliative care is about quality of life, value of life and meaning of life, not how to prevent the legalisation of euthanasia.
I wonder if I was alone, those many years ago, in being confused about euthanasia. The few discussions we had about it, within the team and with its proponents, seemed to focus on the withdrawal of futile treatment, the double effect of opioids, what came to be termed 'medical inertia' (not playing at being God) and how to care for patients in a persistent vegetative state. No sooner had we opened the doors of the hospice than it was being said that we were offering our patients euthanasia - ' a good death'- and the need for clarity of definition became painfully clear. The need for such clarity has never diminished in the succeeding years. Why then is so little time spent on it?
Twenty odd years ago doctors seemed to have highly selective memories of their undergraduate pharmacology lectures. They remembered that morphine (and in the UK diamorphine) was a useful analgesic though they were vague about its mode of action and dose. What they all remembered was that it always causes addiction (we still used that now out-dated word), always causes potentially fatal respiratory depression, that it is ineffective by mouth, the only useful routes being intramuscular or intravenous and that doses over 15-20 mg were usually fatal! Further enquiries about exactly what they had been taught, and were still being taught, revealed that their memories had not failed them. Some pharmacology lecturers had not read any palliative medicine literature. I recall ending a lecture to a distinguished audience of surgeons and the Chairman saying that he had never thought he would ever thank a colleague for speaking so eloquently about how he ended the lives of so many patients. Afterwards a member of the audience asked if I thought what I was doing was ethical. We have come a long way since then but our journey has not ended.
Over the years the benefits and achievements of palliative care have been publicised by the pro-euthanasia lobby reminding their audience that if such care was readily available for all who need it there might be less call for euthanasia. This seems to fit what some of us have been saying for many years namely that ' a plea for euthanasia is a call for better care'. From this I take it that we must remain a pioneering movement, committed to taking the principles of palliative care into clinical practice everywhere, in a sense acting as missionaries with a message of the greatest importance. However, I also see that we must never allow ourselves to be seen as an anti-euthanasia lobby (our role is infinitely greater than that) or be lulled into false security thinking that as time goes by the calls for euthanasia will diminish. They will not! The focus will move from the terminally ill with cancer to the chronically ill, the demented, the deformed and those perceived as draining the limited resources of our society.
From the earliest days of palliative care it has been recognised that 'we either educate or die'. The ethical imperative to share what knowledge and skills we have with all our colleagues was recognised and honoured by many. As a result today we have professorial chairs in several countries, palliative medicine taught in every medical school in the UK, Canada, Australasia and Hong Kong, and countless degree courses in palliative care, ethics, research and nursing. There is reason to be pleased but not satisfied or triumphalist. It is doubtful if more than 1% of the world's doctors or nurses have had a single tutorial on the principles of palliative care. Four fifths of the world's population has no access to strong opioids. Millions cannot even get codeine.
If this was a matter of resource allocation, it would be tempting to blame the politicians and health care planners of the world but it is not! Recent history has shown that, given the incentive, the charismatic teacher and the scientific data to support the teaching, palliative care can be introduced and developed in countries and cultures where, even ten years ago it would have been thought impossible to make inroads. Expressed in bold ethical terms, we have a moral responsibility to bring palliative care to the peoples of the world. If we fail to do so by all means possible, and if at the same time we continue to nurture the expensive, sophisticated, luxury care we now take for granted in the West, we deserve to be condemned. It was for this mission, and for this only, that the International Hospice Institute and College was founded - to ensure that mortally ill people everywhere can enjoy quality of life, know that people still value the life that is waning and find some meaning in their life.
Come to think of it, the ethics have not changed nor did they need to. What has happened is that we have more clearly defined them, come to understand them better, and in the process found ourselves even more challenged than 25-30 years ago.
October, 1999
