Assisted Dying: Who Makes the Final Decision? E-Book

• Herausgeber: Peter Owen Publishers
• Kategorie: Geisteswissenschaft
• Sprache: Englisch
• Veröffentlichungsjahr: 2014

Seitenzahl: 491

Beschreibung

Assisted dying is perhaps one of the most divisive issues of the modern age, generating endless headlines and moral debates. Published in conjunction with the organization Dignity in Dying, this important new book provides a forum for expert commentators in a variety of fields, including religion and medicine, to explore whether the most humane response to the torment and helplessness of certain severely incapacitated individuals is to assist them in their wish to die. The foreword to this book is by Sir Terry Pratchett

Leseprobe

ASSISTED DYING

Who Makes the Final Decision?

Assisted dying is one of the most highly debated issues of the modern age, generating countless headlines and moral questions. Published in conjunction with the organization Dignity in Dying, this important new book provides a forum for expert commentators in a variety of fields, including religion and medicine, to explore whether there is a more humane response to the suffering some people may encounter in their final weeks or months of life and what a more compassionate approach might be.

It is edited by two proponents of greater choice at the end of life, and all the contributors support the need to change the law. Starting from a position that the current legal situation is untenable, case studies shed light on the negative consequences of legislation that prohibits assisted dying as well the lack of choice for dying people who may be suffering intolerably. The case studies punctuate chapters by a variety of authors who consider different aspects of the issue, and attempt to address the concerns raised by the frequently moving true-life accounts.

CONTRIBUTORS INCLUDE:

Jo Cartwright, Campaigns and Press Manager, Dignity in Dying

Reverend John Cartwright, Congregational minister and philosophy tutor

Sir Graeme Catto, President of the College of Medicine, former President of the General Medical Council and Chairman of Dignity in Dying

Lesley Close, Patron of and spokesperson for Dignity in Dying

Andrew Heenan, former nurse and retired journalist on Nursing Times, Journal of Wound Care and Professional Nurse

Davina Hehir, Director of Legal Strategy and Policy, Dignity in Dying

Sir Terry Pratchett, author of bestselling fantasy books and Patron of Dignity in Dying

‘This book reminds us that to embrace life we must also prepare to embrace death when it comes. The time, the moment, often cannot be chosen or predicted, but we can prepare. However, if through illness or accident life has become intolerable and there is no hope of recovery, then we should embrace the dignity of choosing, within the law and with the help of a supportive medical professional, the moment when the light goes out and the longed-for night takes us.’

Sir Patrick Stewart,OBE Patron of Dignity in Dying

‘Society trains millions to kill others with skill and precision. Yet it denies the freedom to individuals to take well considered and dignified steps to end their own lives in order to avoid overwhelming misery and suffering. This book, much of which is an account of deep love and understanding, will help to redress this monstrous injustice.’

Professor Heinz WolffBrunel University

‘This book is aligned with the deepest human values of love, compassion and respect. Issues which any civilized community needs to explore are discussed with clarity and integrity. Christians with the courage to think beyond the traditional position will find this a very challenging read.’

Reverend Canon Rosie HarperMember of Inter-Faith Leaders for Dignity in Dying

About the Contributors

JO CARTWRIGHT has worked for Dignity in Dying since 2006. She joined the organization as an intern while completing an MA in Human Rights. Her first degree, from the University of East Anglia, was in Bio-medicine. Now Dignity in Dying’s Campaigns and Press Manager, her interest in end-of-life issues goes back to those days in Norwich. Part of her undergraduate studies involved working as a nursing assistant. In that role she witnessed first-hand the horror that can occur when an individual does not have the choice of an assisted death. She cared for Clare, a woman of twenty-seven who suffered from juvenile Huntington’s disease (HD) and cancer. When the two women first met Clare made it clear that she didn’t want to suffer as her father (who died of HD) had done. Tragically, without the option of an assisted death, Jo witnessed Clare suffering unimaginable pain, distress and anguish before she finally died, despite being given the best possible palliative care. During her time at Dignity in Dying Jo has worked closely with families affected by the same issues. She has learnt that her experience with Clare was, sadly, far from unique and has vowed to challenge the law in memory of Clare and the many others who have suffered and continue to suffer because the current law does not allow people to exercise choice and control at the end of life.

REVEREND JOHN CARTWRIGHT is a Congregational Minister who earns a living as a freelance tutor, mostly of philosophy. Believing that freedom to choose in all aspects of human life is an important constituent of believing in God has directed his attention to thinking about assisted dying, as has his experience of being with those close to death. Among his qualifications, he has an MA from Nottingham University, a PGCE from Cambridge and he completed his ministerial training at Mansfield College. He is also a longstanding member of Mensa.

SIR GRAEME CATTO is President of the College of Medicine and Chairman of Dignity in Dying. A former President of the General Medical Council, he was Vice-Principal at King’s College London, Dean of the Guy’s, King’s College and St Thomas’ Hospitals’ Medical and Dental School and Pro Vice-Chancellor, University of London. After graduating in Medicine with honours from the University of Aberdeen, he obtained a Harkness Fellowship from the Commonwealth Fund of New York to study at Harvard University. He worked as a physician with an interest in renal medicine and has published widely on different aspects of nephrology and immunology. Formerly Chief Scientist at the Scottish Health Department, Dean and Vice-Principal at the University of Aberdeen and Governor of the Science Technology Park in Qatar, he is currently Emeritus Professor of Medicine at the University of Aberdeen.

LESLEY CLOSE was born in Oxford, the youngest of three children. Her life was changed completely by her brother John’s assisted death at Dignitas on 26 May 2003. Subsequent media appearances, telling John’s story and arguing the case for changing the law gave her the confidence to write a book about a good friend who is a talented textile artist and teacher. Having proved to her own satisfaction that she was up to the task she decided to write about the subject which has become her passion, assisted dying. Her e-biography of her brother, published on the tenth anniversary of his death, is available on Amazon, and she is working on another book. Lesley has been a spokesperson for Dignity in Dying since her brother’s death, and was made a Patron of the organization in 2009.

ANDREW HEENAN started work at his local psychiatric hospital in 1970 with no intention of remaining longer than a brief work experience before university. Three years later he emerged as a registered mental nurse. He went on to take the registered general nurse course, intending to return to mental-health nursing. However, he then took three years out for university, returning to the NHS to study cancer nursing. This eventually led to commissioning a bone-marrow transplant unit, primarily for people with leukaemia, before leaving the NHS for several years to be a journalist. His first role was Clinical Editor of the Nursing Times. He then became launch Editor of the Journal of Wound Care. He went on to be relaunch Editor of Professional Nurse and launch Editor of NursingTimes.net. He returned to the NHS as a staff nurse, closing his career as a senior screening practitioner for the NHS bowel-cancer screening programme.

DAVINA HEHIR is responsible for developing Dignity in Dying’s policies on end-of-life care and assisted dying and for developing the organization’s legal work. She led the Dignity in Dying team that worked on the Debbie Purdy case. This resulted in the important recognition that, in certain circumstances, people should not be prosecuted for helping a loved one to die.

SIR TERRY PRATCHETT, OBE, is the acclaimed creator of the global bestselling Discworld series, the first of which, The Colour of Magic, was published in 1983. In all, he is the author of fifty bestselling books. His novels have been widely adapted for stage and screen, and he is the winner of multiple prizes, including the Carnegie Medal, as well as being awarded a knighthood for services to literature. Worldwide sales of his books now stand at eighty-five million, and they have been translated into thirty-seven languages. Sir Terry has been a Patron of Dignity in Dying for some years. He wrote the 2011 Dimbleby Lecture on the topic of assisted dying and fronted the BBC documentary Choosing to Die.

PHILIP SATHERLEY has a background in healthcare research. He was a researcher at Cardiff University in the School of Nursing for ten years and has worked for Dignity in Dying since 2009. His interest in evidence-based practice has strongly influenced his views on assisted dying, believing that the best quality research should inform the debate.

PROFESSOR RAYMOND TALLIS is a philosopher, poet, novelist and cultural critic and was until recently a physician and clinical scientist. Born in Liverpool in 1946, one of five children, he trained as a doctor at Oxford University and at St Thomas’ in London before going on to become Professor of Geriatric Medicine at the University of Manchester and a consultant physician in the Healthcare of the Elderly in Salford. Professor Tallis retired from medicine in 2006 to become a full-time writer, although he remained Visiting Professor at St George’s Hospital Medical School, University of London, until 2008. His national roles have included Consultant Advisor in Healthcare of the Elderly to the Chief Medical Officer; Chairmanship of the Royal College of Physicians Committee on Ethical Issues in Medicine; Chairman of the committee reviewing ethics support for front-line clinicians; and membership of the Working Party producing a seminal report Doctors in Society: Medical Professionalism in a Changing World (2005). In July 2011 he was elected Chair of Healthcare Professionals for Assisted Dying (HPAD). He is a patron of Dignity in Dying.

This book is dedicated to all those who have travelled to Dignitas to be given help to die. It is also dedicated to the countless other people who have suffered intolerably because they could not have that same compassionate help to die in the UK. Above all, it is dedicated to my late brother, John Close, for the action he took which started my journey into an understanding of the issues surrounding assisted dying and the need to change the law in the UK.

Lesley Close

I would like to dedicate the book to the people who make the campaign important – all those who have suffered and are suffering because there is insufficient choice at the end of life – and specifically to Clare Forder, my inspiration to be part of the fight.

Jo Cartwright

Acknowledgements

This is the book I have wanted to help bring into existence since John’s death. I cannot thank Jo Cartwright enough for suggesting that we could make it happen by working on it together. I would not have been able to write the life stories of those facing death without the help and support of my partner Michael. Above all, I am deeply indebted to the families who agreed to share their stories with me. Julie and Kay Clinch, Lizzie Love, Kelley Marriage, Heather Pratten, Liz Smith and Pamela Tuson all gave freely of their time, and their words moved me to tears on more than one occasion. Thank you for teaching me so much, for your deeply touching honesty and for setting me off on an emotional rollercoaster when you agreed to let me write about your beloved relatives.

Lesley Close

I would like to thank my father for encouraging me to think, Mamma C. for teaching me to care, my brothers for giving me no option but to learn to fight, Elliott and Jack for forcing me to stop and play, Andy for his unwavering support and Abi for reminding me that it’s important to look good while you’re doing it. Above all, I am incredibly grateful to Dignity in Dying for allowing me to spend my days doing what I love and to Lesley for making what initially seemed impossible possible.

Jo Cartwright

Foreword

I don’t fear death, but, like many other people, I do fear dying badly.

This book explores assisted dying by looking boldly at the historical, medical, legal, philosophical and ethical aspects at the heart of the matter. It punctuates these with the stories of real people’s deaths, of real suffering and the fight that has been inspired in the people living with memories of those deaths.

Some of the people in this book, much like Peter Smedley who invited me to witness his assisted death at Dignitas, died too soon to ensure that they could die well. In years to come people will look back, aghast, at a time – this time – when people were forced to choose between living on and dying well.

This book will undoubtedly move the debate forward and help us get to the stage when the choice to die as we wish is one that we can make at home, surrounded by the things and people that have made our lives what they are. That’s a time to look forward to, when the fear of dying badly will have been consigned to history books.

Sir Terry Pratchett, OBE October 2013

Contents

Introduction by Lesley Close and Jo Cartwright

1. A Death at Dignitas John Close: ‘More like a thing than a human being’

2. A History of Assisted Dying in the UK by Jo Cartwright

3. Three Suicides, Three Reasons to Die Liz Smith’s parents: ‘We just sat there, waiting for this great moment’ Neil Love: ‘Time to go while it’s my choice’

4. A Faith View of Assisted Dying by Reverend John Cartwright

5. Aiding and Abetting Suicide Nigel Goodman: ‘I am suffering and I want to die’

6. Assisted Dying Around the World Today by Davina Hehir and Philip Satherley

7. Voluntarily Stopping Eating and Drinking Efstratia Tuson: ‘Talk to the captain; they can just drop me overboard!’

8. A Nurse’s Perspective on End-of-Life Care by Andrew Heenan

9. Good Care But a Bad Death Colin Marriage: ‘Another week? I can’t do another week!’

10. The Future for Assisted Dying in England and Wales by Sir Graeme Catto

11. A Recent Death at Dignitas Ron Clinch: ‘Want to share this one, Brian?’

12. The Right to an Assisted Death by Ray Tallis

Notes

About the Contributors

Useful Addresses

Index

‘We are told that suicide is the biggest act of cowardice and even, in a completely meaningless phrase, that suicide is “wrong” when it is apparent to everyone in the world that there is nothing over which a person has an indisputable right more than their own life.’ – Arthur Schopenhauer

Introduction

Some of the people you will read about in this book died when a terminal illness became intolerable. Others died prematurely: they feared life would become intolerable if they did not take control while they were still physically able to do so. They did not know how long they might continue to suffer, with no control over their fate, if they waited for their illness to reach its conclusion.

That is an important point. If assisted dying, as described in this book and as campaigned for by Dignity in Dying – assistance to die for competent adults who are already dying – was legal in the UK, it would only be available to people who were in the final stages of a terminal illness. Not all of the people in this book would have been able to choose an assisted death at the time they chose to die, even if it had it been a legal option.

Two days after his wedding Colin Marriage cried when he was told that he could expect to live for a few more days, not because he wanted to live longer with cancer but because he could not bear to suffer any more. His sister Kelley, who had not seen him cry since he was a child, heard him pleading with doctors to carry out a procedure that was intended to relieve his suffering but which would have ended his life. Kelley is adamant that he would have asked for help to die if the law allowed. Even if this book contained just one story, Colin’s, it would demonstrate the need to change the law. It highlights the limitations of palliative care which, despite repeated assertions to the contrary, can neither prevent all suffering nor provide a peaceful death for every patient who is terminally ill.

Efstratia Tuson’s decision to stop eating and drinking to bring about her death is an option that is open to anyone regardless of physical infirmity. I wrote her story while my partner’s ninety-year-old mother lay in a hospital bed, apparently suffering from the early stages of dementia and refusing to eat or drink. Because of the emotional torment of that situation I found it very difficult to write about Efstratia’s mentally competent decision to bring her suffering to an end, but her story is an important one. As her daughter reminded me, no one who is mentally competent can be force-fed against his or her will, but, even with palliative support, starving oneself to death can add to one’s suffering. If professional medical assistance were available to someone like Efstratia – who, of her own volition, had made the mentally competent decision to end her life to put a stop to intolerable suffering – such extreme measures would not be necessary.

Liz Smith’s mother Barbara was terminally ill with dementia when she decided to end her life with her husband Don’s support. Don later committed suicide when his suffering with cancer became intolerable just a week after a hospice nurse told Liz that her father had weeks to live. Don took an overdose of medication to end his life, but if he had been able to call on professional help he would not have been obliged to guess – wrongly – how many tablets he needed to take to end his life quickly. It took two days for Don to die, and Liz is still haunted by the terrified expression on her father’s face every time he regained consciousness during that period. If Don had known that he would be able to talk to his doctor when he was ready to die he might have lived a little longer. What is certain is that his daughter would have found his assisted death less difficult to witness than his suicide. The law in its current guise meant that the deaths of Barbara and Don were made even more difficult for them and for their family by the lack of choice.

Heather Pratten pleaded guilty to aiding and abetting the suicide of her son Nigel who had Huntington’s disease. Family experience of the condition meant that Nigel knew what lay ahead, and he had reached what he considered to be an acceptable life span with the disease. He took the decision to end his life while he was still capable, physically and mentally, and Heather watched him take an overdose of heroin then lose consciousness. She fell asleep beside him, and when she woke up, some hours later, she realized that his suffering was not quite over. To hasten the inevitable end of Nigel’s life she held a pillow over his face. She is comforted by the memory of his peaceful expression once his intolerable suffering – and his life – had ended. In my opinion that’s not aiding and abetting a suicide or ‘mercy killing’ – it’s compassion in action.

The nature of Neil Love’s illness meant that his prognosis could not be given with any accuracy. The doctor who carried out his post-mortem told his widow Lizzie that Neil was probably just a few months away from death when he committed suicide. I find it almost unbearably sad that because Neil, an expoliceman, was aware that his wife might be implicated under the current UK law if he told her his intentions she was unable to say goodbye to the husband she adored. The guidelines issued by the Director of Public Prosecutions following Debbie Purdy’s appeal would have alleviated some of that anxiety.

I am certain that my brother John Close was only a few weeks away from dying when we made the journey to Dignitas. He was almost completely helpless and would probably have died in his sleep, peacefully, but I would not have been with him to say goodbye. Because I was with John when he died I have no unanswered questions about his death. Without the helping hand that Dignitas was able to extend to him my memories of the end of his life could be very different.

John’s decline was, I am convinced, so far advanced that any physician would have judged him to be living through the final weeks of motor neurone disease. Ron Clinch would certainly have died very soon without Dignitas’s help, which he received almost nine years after my brother, but he chose to travel to Switzerland rather than suffer any longer. I had promised John that I would do whatever I could to change the law, and it was frustrating to hear the familiar details of Ron’s story because they showed the lack of any real progress in the intervening time. People are still forced to travel abroad to die rather than be at home supported by their loved ones.

One significant change that has occurred is that the subject of assisted dying now appears in fiction, drama and comedy in a way that suggests it is becoming an almost acceptable part of life. This change highlights the fact that, despite public opinion polls finding overwhelming support for decades, it is only recently that people have felt able to talk about the subject openly.

The circumstances of the deaths described in this book are very different from one another, but they share a common theme, that of unnecessary suffering and anxiety at an already terribly difficult time. Jo and I have chosen to write about people from a variety of backgrounds and with a range of clinical histories to show that a law permitting assisted dying could make a positive difference to determined people across the board. That is one characteristic which came across very strongly in the interviews I conducted: everyone spoke of the dying person as being adamant in their desire to do whatever it took to achieve as peaceful and dignified a death as they could at the time of their choosing, but they wanted to avoid risking their choice having legal implications for those they loved and were leaving behind.

Whether or not they were able to achieve it, another thing these people had in common was the desire to avoid prolonged and intolerable suffering. They were all determined not to reach the stage where their lives became a burden to them – not to their family and friends but to the person who was dying. Colin did not achieve that aim, sadly, and the deaths of Barbara and Don were both marred by efforts to reverse their actions. But it gladdens my heart to know that Efstratia, Neil, Nigel, Ron and John died before being alive became intolerable.

These deeply personal stories all revolve around death, but they are, essentially, love stories. Each of the people I have written about had the love and support of at least one close family member at the end of their life, even if, like Neil, they died alone. Each of them was, in a phrase my elderly and frail mother used in a message to her dying son, surrounded by a world of love.

I believe that one of the most loving acts you can perform for someone who is dying and suffering intolerably is to help them die with peace and dignity. If someone in that situation asks for your help to die it is easy to live with yourself afterwards because you gave that person what they asked you for.

As it says in Colin’s story, nobody’s life is taken in those circumstances – the dying person is giving away something they no longer want.

Lesley Close

When the publisher Peter Owen approached me to discuss the idea of writing a book on assisted dying my initial thought was: Surely it has been done before? I have spent my working life immersed in the issues surrounding assisted dying and have experienced at first hand the horrible situations created by a lack of choice and control at the end of life. As a result I was convinced that other people were just as interested in this issue as I was, and I felt certain that someone must have produced a book about the many reasons why the law should be changed.

It turned out that no one had written at length in book form on the subject – at least, not taking the comprehensive approach suggested – since Peter Owen last looked at the issue back in 1986. Recognizing that this could be a very important contribution to the debate, I decided I must find a way to make it happen.

I already had a more than full-time role as Campaign and Press Manager at Dignity in Dying, and I was aware that this was too important a task to get wrong, so I wanted to involve a trusted colleague and friend as co-editor. I approached Lesley Close, with whom I have campaigned for as long as I can remember, and she was very enthusiastic. I knew that Dignity in Dying has a wealth of experts and friends who could write eloquently on various aspects of the issue, and I knew enough people who are – or whose loved ones were – adversely affected by our current compassion-free laws to write a book rivalling War and Peace, at least in terms of the word count!

While Lesley worked to ensure that the families of some of those who have suffered under the current law had a voice, I drew up a list of people I could approach for contributions on different aspects of the debate. I wanted to know how professional and personal experiences had affected their view of the issue, and not one of them – colleagues, contacts and experts in the various elements of the debate – let me down.

The Reverend John Cartwright, a member of Inter-Faith Leaders for Dignity in Dying, philosophy tutor and Congregational minister, explores the doctrine of double effect and how his God fits into the assisted dying debate. Davina Hehir and Philip Satherley, Dignity in Dying’s two experts on the policy surrounding assisted dying, give an insight into how practices differ around the world and what impact those countries’ legislation might have in the UK in the future. Palliative care nurse Andrew Heenan looks at his own experiences in caring for the dying

Sir Graeme Catto – Dignity in Dying’s Chair, former head of the General Medical Council, member of the Commission on Assisted Dying and a doctor with more than forty years’ experience – seemed best placed to look to the future. He explores what he feels is the way forward so that people no longer have to turn to Switzerland for an answer to unbearable suffering at the end of their lives, to take matters into their own hands or to ask loved ones to help them to die. Professor Ray Tallis, philosopher, writer and Chair of Healthcare Professionals for Assisted Dying, shares his views on the issue as a whole in his conclusion – and Sir Terry Pratchett offers his take on the subject in a way only he could.

With my knowledge of the history of the assisted dying debate and, having played a part in some of the more recent legal history, I was keen to tie all the research and case law into the human stories in my chapter on the history of assisted dying in the UK.

Writing and editing this book has further strengthened my view that a law to permit safeguarded assisted dying is both necessary and long overdue. I am certain that we must not rest until everyone who is terminally ill and mentally competent can exercise choice and control over the timing and manner of his or her own death.

Jo Cartwright

1

A DEATH AT DIGNITAS

John Close: ‘More like a thing than a human being’

My brother John Close’s penultimate conscious act was to push down on the plunger of a feeding syringe that delivered, straight to his stomach, the overdose of barbiturates that would end his life. He carried out that act with such determination there was no room for doubt: by that stage of his motor neurone disease John had only a few weeks of life left, but he wanted to die more than he wanted to live.

His last act was typical John. He smiled a warm, loving and heartfelt ‘Thank you and goodbye’ to the four people who were with him: me, his younger sister, our older sister Margaret, my partner Michael and John’s loyal friend Peggy. We were lucky to be with John because knowing how he died has brought us comfort ever since, but he achieved the peaceful and dignified death he sought, at 4.30 in the afternoon of Monday 26 May 2003 only because he had help from Dignitas. That meant that we were forced to travel over five hundred miles from Milton Keynes to Zurich. Tragically, John could have lived a few weeks longer if he had been able to ask his GP for help to die in England. Dying at home would have relieved him of the need to be physically able to make that final journey. He could have tolerated allowing his body to deteriorate a little further before choosing to die.

John was nine when I was born, and a monochrome photo taken when I was tiny shows him cradling his baby sister with a tender smile on his face. My parents appointed him to be one of my godparents, and I believe he carried the weight of that responsibility all his life – albeit in a secular capacity. We were very close, and, in a reversal of the usual state of affairs, John often turned to me for advice which I seldom felt qualified to give. His diagnosis with motor neurone disease (MND) did not change our relationship. In many ways it just brought us closer. Almost two years after being given the devastating news that he was dying, and before he had taken any steps towards contacting Dignitas, he asked me, via the personal organizer with which he communicated, what I thought about having help from the organization to end his life. I said that it was his life and that I would help him do whatever he wanted with it. His reply was typical of his sense of humour: he typed, ‘But not tonight. I want to watch Lord of the Rings.’

I was ridiculously proud of my big brother, who was handsome with dark curly hair and slightly olive skin. I was thrilled to follow him to a grammar school where his name was remembered with affection and a degree of awe. Among other things John taught me to ride a bike and to play the guitar, and he cheerfully taught me the lyrics and chord sequences of songs I liked. He even explained what a honky-tonk woman was and why it was not an ideal song for a teenage girl to perform in public.

Our mother was eighty-six when John found out about Dignitas. She was frail and living in a residential home, so there was no question of her travelling with us to Zurich. His decision to seek an assisted death broke her heart, not just because he was the apple of her eye. A more important consideration was that John’s decision to end his life meant that he would not be allowed into heaven. She was certain she was going there, and the thought of being deprived of her son’s company in the afterlife was acutely painful. She continued to feel this way even after I reminded her that John was dying and that he was suffering intolerably in the process. I saw her almost immediately after I returned to England, when he had been dead for three days, and she asked whether he had turned to Christ as he died. She was disappointed when I told her that, apart from the four of us who supported him as he died, his comfort had come in the form of the nurse from whose hand he accepted the medication to end his life.

John was divorced at the time of his death, and the heartbreaking end of that marriage, like the end of other relationships before and after it, had inspired him to write some beautiful songs. Song-writing was what defined him for many people, although he had many different jobs, mostly in information technology after Michael and I introduced him to computers in the 1980s. From the late 1960s playing the guitar and, later, fiddle and keyboards and composing songs was what he really loved – and lived – to do. He was a self-taught musician who carried on learning his craft until he stopped writing music. That day occurred only a couple of months before he died, by which time playing a keyboard had become too difficult. Even then he spent all his time listening to music.

By the time he died John had been out of bed for almost twelve hours, and I don’t think he had slept very much in the previous thirty-six hours. I got very little sleep after Michael and I said goodnight to him around midnight on Sunday 25 May 2003. Our readiness for sleep was not helped by John’s suggestion that the three of us should watch the funniest bits from his favourite film, Monty Python’s Life of Brian, one last time.

In the final week of John’s life Michael and I looked after him because his social-care arrangements had descended into chaos. The three of us found that the enforced closeness made it a difficult time, but Michael and I also found it a privilege that John trusted us to look after him when he was so vulnerable. Like me, Michael derives comfort from knowing how John died: we both feared that he would die alone in his bed while asleep. This is a very common death for MND patients; it occurs because the diaphragm is weak and breathing is difficult, especially when lying down. My fear was not that John would die without waking: if he had been unaware what was happening to him death would have been peaceful. My worry was that he might have woken, alone and afraid, as he struggled for breath as his life ended.

The three of us watching a funny film the night before John died had not been part of the plan. During the week leading up to his last weekend John had decided that Sunday would be a quiet day with no visitors and that he would have an early night so he could be up with the lark on Monday. But things seldom work out as planned, and, although there were no visitors, Sunday had been a busy day.

Saturday had been even busier because John invited his friends to join him at his wake. Michael, who shared his sense of humour, knew that John would love the idea of attending his own wake and suggested it shortly after John got his date for Dignitas. John was initially concerned that the emotional lability which was part of his disease might lead to him crying and that his tears might be misinterpreted by guests who did not understand his illness.

Emotional lability had led John’s GP to prescribe tranquillizers before his diagnosis. John had found himself crying in meetings at work, and he was diagnosed with stress. In fact, inappropriate emotional displays are a common symptom of MND. The sufferer may experience involuntary episodes of crying or laughing. John retained an appropriate ability to laugh right up to the day he died, but he would cry inappropriately frequently and freely.

John’s informal wake was held at the pub nearest to his home in Middleton, Milton Keynes. He chose it because we could easily push him there in his wheelchair. Despite the poor acoustics of the outdoor setting next to Willen Lake we were privileged to hear many fine singers perform excellent versions of beautiful songs in his honour. We returned to the flat at around six o’clock and spent the evening at home.

On the last Sunday we made a final trip to the huge Tesco store a mile or so away. The shop’s café, with its level entry and wheelchair-friendly seating, was one of its redeeming features. It was the nearest supermarket we could reach on foot. John could not get in or out of a car, and we could push him there in his wheelchair. While Peggy, Michael and I watched, John pretended to be Eric Morecambe and played the fool with some sunglasses he and Peggy had found at Willen Lake a few days earlier. Peggy, who met John when he started playing gigs in a Milton Keynes wine bar with her ex-husband in 1975, tells me she still wears those sunglasses.

After the three of us had a drink and a snack John indicated that we would take a different route home. He had lived in Milton Keynes for almost thirty years, so we had no worries about letting him navigate. As we followed his route, which was beautiful and tranquil, it started to rain. Undeterred, we wrapped John in a selection of carrier bags and recycling sacks to stop him getting too wet and cold. It was only when we were close to home that John complained of his legs feeling cold. The swift application of some Deep Heat medication to his limbs soon remedied this, and we carried on.

Later that afternoon Michael and I had something to eat, and we gave John some water. He did not want to eat – by that stage ‘eating’ meant that someone would give him several large syringes full of a liquid diet called Ensure through a feeding tube.

That had been John’s main food source since the previous autumn. He had the operation to insert a percutaneous endoscopic gastroscopy, or PEG, in August 2002 while he was living in a nursing home. When he returned to his room after the operation he was greeted by two jolly nurses telling him that they would fix up the drip and he would remain connected to it for several hours. John was horrified by the prospect and threatened to rip out the PEG.

I had seldom seen him so angry since his diagnosis with MND eighteen months earlier, but his impatience was understandable. His enjoyment of life was already limited by the disease, and he wanted the feeding process to be over as quickly as if he was eating with a knife and fork. He clearly had not been told everything he needed to know about the PEG, and he hated the idea of being restricted in this way. The staff could see that he was furious, so they left Michael and me to calm him down and prevent him damaging his stomach by interfering with the site of his recent surgery. John had always enjoyed eating. The thought of never eating normally again was profoundly depressing. Link that to the prospect of being connected for several hours to a pump delivering gloop instead of real food and one could understand why he was so agitated.

After we had been on our own for a while and he had calmed down another nurse entered. He told us about the ‘bolus’ feeding method which uses a huge syringe without a needle. It was so simple I could have cried with relief. All John had to do was to empty a sachet of Ensure into a jug, put the syringe in the gloop and pull up the plunger. After connecting the syringe to the end of the PEG tube he undid the clip on the tube and squirted the mixture into his stomach. A few syringefuls sufficed. The process took minutes rather than hours, and John liked the bolus method much better than the drip.

At the time he had his PEG surgery he was still eating normally, although he took great care to avoid hard or flaky food as this made him choke. Because he always tried to anticipate the progress of the disease he was prepared for the fact that sooner or later he would have to stop eating ordinary food. He was well informed about the illness and appeared able to predict what was coming next. He was always ready for the next loss, the next development in the progression of his illness.

John’s speech was one of the first symptoms that led to his diagnosis. He joked that he could no longer say ‘rhinoceros’, so he – and we – introduced the animal into as many conversations as possible to make us all laugh. He tried using a Lightwriter but found it slower than using an organizer or his computer: he was very tech-savvy and decided that the Lightwriter technology was designed for people who were not! He had a limp when he was diagnosed, and, within a year, it had progressed to his being unable to walk. Within eighteen months he could not support his already considerably reduced weight on his legs, so standing to transfer between his wheelchair and shower chair or from a wheelchair to his bed became impossible. John’s occupational therapist provided a smooth wooden transfer board that solved the problem, as it enabled him to slide sideways. Eventually he was given a hoist, because he could no longer bear his weight during those transfers.

Once he had been hoisted into bed we would arrange his body so that he was comfortable. This was always the same position to start with, lying on his side with a pillow between his now bony knees. During the night, by making a superhuman effort, he could roll on to his back, but then he was stuck like a beetle and sometimes needed help during the night to get comfortable once more. He had a urine bottle by the bed so that he could relieve himself without disturbing his carer, but after being hoisted out of bed the following morning he would require assistance to get on to the shower chair or to use the lavatory.

MND is a horrible illness. David Niven, who died of the condition in 1983, said, ‘Whatever you do, don’t get this bloody awful disease.’ It could almost be described as a family of illnesses, as it takes a different course in every individual who is diagnosed with it. Some people with MND can speak and swallow until the day they die. The first symptoms can be very varied and may include rapidly progressive weakness, muscle atrophy and fasciculations (twitches under the skin), muscle spasticity, difficulty speaking (dysarthria), difficulty swallowing (dysphagia) and difficulty breathing (dyspnea). The progression of the disease cannot be confidently predicted, and the prognosis John was given was six months to five years. To start with he lived as if he had been given six months, doing everything he considered to be important straight away. These tasks included organizing the recordings he had made of his own songs as well as their lyrics. While he was in hospital and that life-changing diagnosis wasn’t even a shadow on the horizon he wrote some beautiful love songs. By the time he had the PEG inserted he had been living with a diagnosis of MND for a year and a half and had already had several simple pleasures taken away from him, including making himself understood verbally, singing, playing the guitar, walking and eating pretty much anything he fancied.

The last time John ate chips was in a Woolworths cafeteria. This was during a dreadful period from April to October 2002 after he was evicted from the room he had been living in very happily in Stony Stratford. He was offered a room in a nursing home which he accepted because it was intended as a short-term refuge while work on his newly built disabled person’s flat in Milton Keynes was completed. On being made homeless he had been told that the flat would be ready in about two weeks, but every time we asked when it would be available we were told that it would be another two weeks. If we had known how long it would take to complete the work we would have made our home as John-friendly as possible and moved him in with us. But at least the nursing home was close to his friends and allowed them to visit him easily, whereas taking John from Milton Keynes to our home in south Buckinghamshire would have removed that possibility.

Every Saturday Michael and I would take him away from the ceaseless roar of televisions in the rooms of comatose patients and the constant clamour of bells ringing to summon carers who were rushed off their feet. On the day John last ate chips we had driven him from the nursing home to our house when he decided that he wanted to visit High Wycombe. Because we arrived there at lunchtime we ate at Woolworths, not for its fine dining but because there was step-free access – via a lift – to the first-floor café and a reasonable amount of room at the tables. I will never forget the look of panic on John’s face as he started to choke on a chip. By then the three of us had experienced a similar situation many times, and we knew what to do. Michael and I swung into action: I administered back slaps while Michael handed John some serviettes to hold in front of his mouth. Diners around us looked horrified as John coughed and spluttered ineffectually for a couple of minutes before the problem was resolved.

I have a vivid memory of where and when I first saw John choking. About six weeks before he was diagnosed with MND our mother started a trial stay in an Oxford residential home. After two weeks she decided to make the move a permanent one by moving out of the family home where she had lived as a widow for five years. We, her three children, were very relieved that she had accepted her need for full-time care, and we decided to celebrate by holding a dinner party in the family home before it was sold. I offered to cook supper, and we met at the north Buckinghamshire house early one Saturday evening in mid-February 2001. At one point John choked on a lump of food which he had not chewed properly. He had been having difficulty swallowing for a few months, and his doctor had told him it was stress-related and prescribed more tranquillizers.

On this occasion he could not clear his throat by coughing and was becoming distressed. He went to the sink, probably in case he was sick, and I followed him. I slapped him on the back but to no avail. As a trained first-aider at work I knew the Heimlich manoeuvre but had never used it in a real-life situation. I remembered what I had been taught and wrapped my arms around his fairly stout middle. As my hands grasped each other at the front I pulled back and up, hard, several times until eventually the air in John’s lungs forced the obstruction out of his windpipe.

I was relieved, but I recalled an old saying: if you save someone’s life you are responsible for them. He was diagnosed with MND about two weeks later, and much later a part of me wished I had let him die by choking that night, but throughout the course of his illness I did my best to live up to my responsibility. This was my big brother. This was the man who had taught me to ride a bike and play the guitar, and he was dying. The least I could do was help him to live as well as possible until the end of his life.

On the last morning of John’s life, Monday 26 May 2003, Michael and I got up at four o’clock and showered and breakfasted. We knocked on John’s bedroom door an hour later, and his cheery smile greeted us as it always did in the morning. He had made carefully planned changes to his routine – no food since Saturday, very little fluid after Sunday, no laxative on Sunday night and no bowel-stimulating leg exercises on Monday morning – to avoid having to empty his bladder frequently or open his bowels. For the first time in ages he took a couple of doses of codeine on Sunday, for their constipating effect as much as for pain relief, and he had more first thing on Monday morning.

Having hoisted John out of bed and dressed him in a long-sleeved casual top and tracksuit bottoms for the journey to Zurich we did a few minutes’ filming for the BBC’s Video Nation project, to which we contributed several films, while John had a breakfast of painkillers in a small amount of water – he wanted to reduce his need to pee. Shortly after five Margaret arrived with John’s friend Peggy. They were accompanying us to Switzerland.

John was as cheerful and comical as always, despite the hour and the occasion. The taxi arrived on schedule at 5.30, and John was helped inside. The journey to Luton airport was straightforward – misty fields and low sun made it poetically beautiful – although John’s right leg was painful and the thirty-minute journey seemed interminably long.

We arrived at the terminal at around 6.15, ahead of time, but there was already a long queue. At this point John was not afforded priority treatment, so we joined the queue and checked in at around 6.50. We were told that John and I would travel from the gate to the plane in a vehicle called an Ambi-lift and that the others would have to take their chances. The budget airline’s free-seating policy meant a tremendous scramble for seats, and there was a real danger that we would be separated during boarding. The boarding passes John and I had been given had a gate and a time, 7.15, but even though those of Michael, Margaret and Peggy did not they came with us to Gate 9.

The designated time came and went, and eventually someone asked us to come with them for boarding. ‘Can we come, too?’ asked Margaret, and we almost cheered when the official said that they could. Just outside the gate, not far from the plane’s nose, the Ambi-lift was waiting, and we were hoisted into it by a tail lift, first John and me and then Michael, Margaret and Peggy. We sat down, and John’s wheelchair was secured in place.

After the three others had boarded, an aisle wheelchair was brought into the Ambi-lift. It was narrow, with very little refinement, and I pointed out that John could not keep his feet on the very thin foot strap. He was lifted between wheelchairs, a woman at his shoulders and a man at his legs, and his legs were supported as he was steered on to the plane through the door opposite the normal passenger entrance. I followed, clutching the folder of documents that John and I had taken great trouble to compile for Dignitas.

Michael, John and I sat in the front row of seats, the only place where there was room for the transfer. With our baggage stowed in the overhead lockers there was plenty of room to lift John in his seat to make him more comfortable and to give him water via the PEG. John had been transferred to a window seat so that he would be out of the way in the event of an emergency, while Margaret and Peggy sat in the row behind us.

On the flight John looked out of the window and enjoyed the scenery, pointing out boats in the Channel until the view disappeared beneath clouds. I lifted him once and gave him some water, but for the rest of the flight we did very little. John wrote in his organizer (including the joky message to me ‘You can have my seat on the way back’), and Michael shot some footage for Video Nation, but mostly we just sat, with Margaret’s and Peggy’s hands coming through between the seats to pat John’s shoulders – he put his hand up to pat back – or to ruffle his hair and mine reassuringly.

Take-off was awful, simply because I hate flying, and John held my hand as I wept terrified tears. I had only told him when we were on the ground, buckled up and waiting for the last passenger to board, how much I hate flying. His comforting hand was wonderful, as was Michael’s on the other side of me. John and I had never been abroad together before then, so there was no way for him to know about my dislike of flying.

There was some turbulence – but very little – and we had a smooth landing at Zurich. The aisle wheelchair and Ambi-lift procedure was repeated, and we were driven across the apron to the terminal building where we were whisked through very efficiently. In no time at all we were in the arrivals area, and there was Ludwig Minelli, the founder of Dignitas. He approached us, smiling and with open arms and an extended hand. He greeted John first, then shook our hands in turn. He had ordered a wheelchair-taxi which hadn’t yet arrived, so we chatted while we waited. Mr Minelli was charming, kind and very friendly.

The taxi arrived, and Michael and I squeezed into the vehicle with John, while Margaret and Peggy travelled in Mr Minelli’s car. We drove out of the airport and round the edge of the city. Very soon we were in lovely countryside. John looked around and smiled his approval. The scenery was beautiful – long fields of green running away to stands of trees with hills beyond them. We drove through a couple of little villages with huge farmhouses whose wide eaves sheltered stacks of logs for the winter’s fires. Old wooden doors and window-boxes gave the houses a picture-postcard appearance, and in different circumstances I would have taken photographs. I just held on to John’s left foot instead.

Eventually we turned off the quiet main road and headed to the hills with some brief glimpses of Lake Zurich behind us. We passed a couple of fields of cream-coloured cows wearing traditional bells around their necks. The sight of them made John smile, but what made him really happy was the knowledge that we were heading for Forch and Mr Minelli’s home which acted as the Dignitas office.

His home had a lift that led to the first floor, a light and airy piano nobile. Mr Minelli and I travelled up first, then John with Michael, followed by Margaret and Peggy. Our host invited us to sit at a long table standing alongside a large floor-to-ceiling window. The table would have comfortably seated twelve people, and it was almost entirely covered with books, papers and photographs. More books – on art, history and law – lined every wall except one: on that a collection of teapots was displayed. To their right was a large collection of videos, and an archway led to the rooms beyond.

Mr Minelli offered us tea and biscuits. John wanted indigestion remedy and pain relief as well as plain water. We sat round the table, and Mr Minelli told us that there were some formalities to go through. He required evidence of John’s identity and asked John a series of questions about his physical and mental health. At the question ‘Are you tired of life?’ John paused and considered. He wrote ‘No’ on his organizer and then went on to clarify that he was tired of living in that useless body, tired of living with MND.

Mr Minelli asked the four of us to give our names, addresses and phone numbers in case the authorities needed to contact us. He then left us alone while he typed the information and photocopied John’s documents. We sat and chatted. John looked tired. He kept asking what the time was, anxious that the next stage, the appointment with the doctor, should not be missed.

At around one o’clock we left the house and drove back down the hillside to Kusnacht, a sleepy lakeside village. The wheelchair-taxi disgorged us outside a block of flats. Dr Hans-Ulrich Kull’s consulting-room was on the ground floor up a short flight of stairs. There was no lift, so John was carried in his wheelchair by Mr Minelli, Dr Kull and Michael. The doctor made it clear that he needed to talk to John alone for a while, so we left them together.

Margaret, Peggy, Michael and I sat in a waiting-room before the heavy door opened and Dr Kull asked for John’s sisters. Margaret and I went in. I sat next to John and held his hand, while Margaret sat beside me and I held her hand, too. The doctor said how good it was to see the four of us there with John and how sorry he was that he was so ill. He asked Margaret and me about our attitude to John’s wish to die. We explained that we fully supported it. Then he asked about our family in the UK, and we described our mother’s frailty and generally poor health. He enquired about John’s marital history, and we told him that he was divorced. He then asked some questions about the progression of John’s MND, and I gave the best answers I could, checking the details with my brother.

Eventually the doctor seemed satisfied, and he said something I will never forget: ‘My first duty as a doctor is to preserve life, but I also have this extra duty I can perform here in Switzerland. I am ready to do that for you. I will write the prescription for you to end your life, Mr Close.’

He left the room to write the prescription. The three of us were very relieved to have passed this hurdle. John was tired, and he sat still with his eyes closed. After about five minutes Dr Kull came back with an envelope in his hand. ‘This is the prescription I will give Mr Minelli,’ he said and escorted us into the hall where we rejoined Michael and Peggy. Mr Minelli arrived at the same time, and we were on our way to the Dignitas flat.

We drove on down the hillside through more fields until we came to a busy road and signs indicating that we were near Zurich. Soon we were driving in fairly heavy traffic, Mr Minelli ahead with Margaret and Peggy and the rest of us in the taxi. We crossed the River Limmat which flows into Lake Zurich and passed the market square.

We drove between neat blocks of flats with window-boxes before stopping outside a nondescript creamy-grey block four storeys high and with steps up to the front door. Erika Luley, tall and grey-haired, was Dignitas’s Dying Assistant. She had arrived at the same time, and we greeted one another on the pavement in the late spring sunshine.