1 Special Interest Group for Philosophy and Ethics Living Well Right to the End Rydal Hall, June 26th to 29th, 2017 2 Contents Living Well Right to the End Introduction 4 Peter Wemyss-Gorman Living with the uncertainty of Cancer 6 Karol Sikora Taking Care of the person in chronic illness 20 Sara Booth Creative approaches to palliative care 35 Kate Binnie Living to die 43 Andy Graydon Coming alive at last 52 Jeremy Swayne To let the patient live and die with dignity 57 Sophie-Freda Borge Contemplative care 65 Narapa Steve Johnson Healing while dying 77 Emmylou Rahtz My recent training in hypnosis 87 Tim Johnson Valuing end of life care 90 Peter Bennett Homeward bound 96 Gillian Bartram 3 Editor Peter Wemyss-Gorman Retired Consultant in Pain Medicine Contributors Karol Sikora, Consultant Oncologist and Dean, University of Buckingham Medical School Sara Booth Honorary Consultant in Palliative Care, Cambridge University Hospitals NHS Trust and Associate Lecturer, Cambridge University Kate Binnie Music therapist and teacher of yoga and mindfulness in palliative care Father Andy Graydon Catholic Priest and hospital chaplain, working in palliative care, mental health and chronic pain Jeremy Swayne Retired GP, homoeopathist and Anglican priest Sophie-Freda Borge Nurse Specialist in Anaesthetics and Palliative Care, Norway Narapa Steve Johnson Buddhist Chaplain and Mindfulness Teacher Emmylou Rahtz Associate Research Fellow, Exeter University Tim Johnson Consultant in Pain Medicine, Salford Peter Bennett Retired senior civil servant, Department of Health. Associate Faculty Member. Science Policy Research Unit, Sussex University Gillian Bartlam Hypnotherapist and Psychotherapist. Professional singer 4 Introduction Peter Wemyss-Gorman I first suggested the theme of this meeting to our steering committee last year after I read the wonderful book Being Mortal by Atul Gawande. He addresses the potential conflict between the successes of modern biomedicine in prolonging life in old age and terminal disease with the need to avoid unnecessary suffering. This led us into the general area of wellbeing and its promotion throughout life, not only at its end. Gawande’s book is written from an American perspective, a country where prolongation of life has sometimes been pursued to a degree that is not only ridiculous but frankly cruel. But I think we do face similar challenges and I have the impression that we are sometimes precariously poised on the brink of the same slippery slope. In his introduction Gawande writes: Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any time in history. But scientific advances have turned the process of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions where regimented routines cut us off from all the things that matter to us. Lacking a coherent view of how people might live successfully all the way to their very end we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers. He contrasts the old age of his grandfather in India who continued to live with his family and remained its undisputed head and that of the family business, and was physically and mentally active until his death at 110, with the last days of people in the affluent West, living in nursing homes where only their physical needs are met. Although medicine increasingly keeps us alive until we are no longer able to care for ourselves, the potential for maintaining independence with mutual advantages to both old people and their families has in fact never been better. Historically, he observes, medicine and public health has transformed the trajectory of our lives. Until relatively recently you stayed healthy until illness hit and then you fell off the cliff.. This could occur at any age from childhood, and for a long time few people survived beyond 40. Then medical progress delayed this until later and later. But the curve for most acute illnesses stayed much the same shape until the last 100 years or so. Even now people with cancer often stay quite well until late in the illness and then deterioration and death are rapid. But for many chronic diseases such as COPD and heart failure, the pattern of decline has changed and looks less like a cliff than a bumpy road down a mountain. Frequent hospital admissions for acute exacerbations are followed by partial recovery, but there is never a return to the previous baseline, less and less capacity to withstand minor problems like a simple cold, until the time comes when there is no recovery. But many of us now get to live out a full life span without following either of these two patterns, and the trajectory becomes a long slow fade to death. 5 As Gawande says: There is no single disease that leads to the end - just the accumulated crumbling of one’s body systems. Medicine carries out maintenance on our joints and hearts etc to keep them functioning as long as possible, but the process is inexorable. We do not fully understand how the aging process works but it is apparent that everything wears out in the long run and there is nothing at the moment that medicine can do about this. Gawande again: No-one ever really has control. Physics, biology and accident ultimately have their way in our lives. But we are not helpless either. Courage is the strength to recognise both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. … Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions and our culture in ways that transform the possibilities for the last chapters of everyone’s lives. There is indeed a universal human need for meaning and purpose. This may be as simple and practical as maintaining independence and self-caring or as complex as a religious faith. It may even include the struggle for survival and length of life, though this may become meaningless as it becomes more futile. Where do our responsibilities lie? Our main preoccupation as clinicians is the relief of physical pain and suffering, so far as it lies within our powers. But is this our only priority? The last word from Gawande: We in the medical professions tend only to be interested in the downhill stretches of these trajectories and fixing discrete problems. We think our job is to ensure health and survival. But is it much more than that? Is it also to enable well-being? - the reasons one wishes to be alive, which matter not just at the end of life or when debility comes, but all along the way? 6 Living with the Uncertainty of Cancer Karol Sikora Let’s look at you – average age in the room: 30, 31? Haven’t got my glasses on! Let’s say 40. The average age for death in the UK is 81.5. That means that you’ve got 41.5 years before you’re going to die. That’s inevitable – not for individuals because there is a big spread. One or two of you are going to get cancer if you haven’t got it already. Many fewer people are dying of cardiac problems now. The healthcare trajectory is changing dramatically. I’ve been in the NHS for 38 years, and you can see that things have changed in one generation of doctors. The fundamental change (and I shall want to point out some of the societal changes as well as the technological changes) is that people have access to information and you can’t hide it. I remember going on ward rounds where you bypassed the patient with metastatic cancer – you talked about mitotic activity, NG for new growth, neoplastic disease - all words to ensure the patient didn’t know what was going on - and the grand team would just walk on to the next bed. There was an old boy at the Middlesex who would just grunt – he wouldn’t even say good morning to the patient who was dying of cancer. Those were different days. We have seen a complete transition in practice. Uncertainty So we’ll take it that you have 41.5 years to go now and we say “you’ve got cancer and you’re going to die within six months because it’s metastatic”. We’re very good at telling people they have cancer but not so good at telling them what it really means; unless they actually ask and surprisingly few people actually ask. Giving someone a cancer diagnosis is easy. What is much more difficult is that if you’ve got metastatic breast cancer your average survival is less than 24 months. Prostate cancer is a bit longer because of the different growth pattern of the disease. But these are of course averages and they reflect a huge uncertainly. I’ve had breast cancer patients who have died within a month of having a lump, with infiltration of bone marrow, vertebral collapse: metastatic disease unresponsive to therapy. In contrast I have a delightful lady who is 87, who is retired to Tenby.