Our Campaign - Personal Stories - My Death, My Decision

My name is Jean Eveleigh, I am 42 years old and I have Ehlers-Danlos Syndrome, a genetic degenerative progressive condition with no cure. This means my body does not make collagen and every particle of my body super-glues to each other ensuring everything works properly but when it is defective, everything is defective and I am unable to move.

I was born with this condition and I have been incurably suffering for over 15 years and unfortunately the only treatment available to me is pain control as my condition progresses similarly to Motor Neurone disease. Soon I will lose control of my bladder and bowels, I’ll be unable to eat, speak and breathe without assistance – I am nowhere near wanting to end my life yet even though there are days when I am in unbearable pain and would gladly accept being completely paralyzed if it could guarantee no more pain, I firmly believe it should be my choice and my choice alone when I am no longer living a quality life, just a quantity existence.

Suicide is not illegal, it is your legal right if you are able-bodied to end your life whenever you choose, Stephen Hawking made an interesting point on the assisted dying debate, that this legal right is denied to some people with disabilities, as no one is allowed to help them to carry out the action when they wish to.

As a disabled person requesting an assisted suicide, you are asking someone to aid you to complete a decision you have taken about your life.

It is no different for me than asking my caregiver to help me on the toilet, or to give me a shower, or a drink, or to help me to eat, or to get from A to B in my wheelchair. I have made a decision about my personal health and well-being that I am unable to act on my own and need someone to help me to complete the action.

I want the legal right to be assisted to end my life when my quantity of life dramatically exceeds the quality I have. I want a safe death, that is medically controlled and I want my family to know I had a good, safe and compassionate death.

Dave’s wife, Christy, died at Dignitas in September 2022, aged 62, after struggling with the impact of Multiple Sclerosis (MS) on her life.

Dave wants to share her story, so that others don’t have to flee their country and they can have peaceful, dignified deaths here in the UK. Christy believed that everyone should have the choice of how they want to live, Dave wants the law to change for her.

Christy was born in South Africa but lived in England and was an academic researcher. She was diagnosed with MS in 1994, aged 35. The early years of her diagnosis were minor and manageable, but Dave recalls the steady decline. She was also diagnosed with epilepsy associated with MS in 2016.

Christy had been forced to retire from a job she loved doing as her MS continued to restrict her and her ability to work. Dave said:

“Christy did remarkably well at adjusting to not being able to do so many of the things she loved doing: hill walking, art, cycling, swimming, and took pleasure in the things she could still do: theatre, music, art exhibitions and of course friends. But she was slowly & steadily losing her independence.”

“It was like she was in a never-ending corridor that was getting narrower and narrower, with fewer and fewer windows and no doors out. Life was closing in with no future other than the knowledge that however bad things were, they were only going to get worse.”

During the first lockdown in 2020 Christy took a steep decline. She had started an epilepsy drug which controlled her seizures but made her MS symptoms worse. She became less able to leave the house, and when she did, there would be a lot of fear and anxiety because of her illness.

Christy, a fiercely independent woman, found it hard as her freedom was slowly being taken away from her. Dave recalls her saying: “I would rather be dead than lose total control.”

In February 2022, Christy applied to become a member of Dignitas. She wrote in her diary: “Feeling an enormous sense of relief at the possibility of assisted dying. Realise I have been under an enormous amount of pressure living under a cloud of fear for two years now. There seem to be new symptoms every week. I’ve been independent all my life. It’s the loss of this (more than the loss of my legs) that is hardest to bear.”

Having to go through the stress of getting the right documentation, from birth certificates to medical records, made the experience even more upsetting for the couple. “Why shouldn’t we have been able to do all this at home? It caused us so much upset. Christy was terrified up until the end that she would have her decision taken away from her by the laws that were supposed to protect her.”

Christy wrote in August: “I don’t feel particularly frightened of the death itself. I am frightened about having to let go of life. I feel I have lived life to the absolute full. And I’m not prepared to go on living this painful and difficult life as it continues to worsen.”

Dave reported Christy’s death to the police once he returned home. He received a call in the middle of the night to say they were going to send someone around to question him. Two uniformed officers spent four hours quizzing Dave. They looked through all of Christy’s emails and eventually referred the case to the community support unit. Dave, who arranged for a solicitor to accompany him, was interviewed by the unit and within weeks, he was told no further action would be taken. Altogether a stressful experience when in the early stages of grief.

Our mother began to notice that her eyesight was weakening with something you could describe as similar to a cataract. She described it as if someone had drawn a net curtain across her eyes. Her appointments with the hospital were routine and a decision was made to do a retinal peel to improve her sight. This is fairly routine with the elderly, she was 71. The first operation on her left eye was successful but provided little improvement but the second operation on the right (stronger) eye was a disaster. She woke to zero vision which the specialists felt was a reaction to the operation, then admitted it was an infection, but much later admitted they did not know why her vision had been lost but agreed is was permanent. However now her sight was severely failing in her left eye and again the specialists were at a loss and eventually reluctantly referred her to Moorfields Eye Hospital. Through a number of visits they tried every test to determine the level of eye activity and confirmed that the right eye was a total loss and they continued to monitor the degradation of the left.

When she began to realise, shortly after the operation on her right eye that she may never see properly again she said to us that without sight she would not want to live. She was an active skier, tennis player, walker, gardener and loved the mountains. Having seen her own mother suffer with a terminal illness living in Switzerland and how calmly and easily she was able to decide how she was going to die, our mother felt that she would like to be fully in control of her life in the same way. This was the first insight into how determined and strong our mother actually was.

She persevered with the advice and tests performed by the specialists but there was no improvement and eventually the C word was mentioned. By this point the sight was now barely 10% of what it was. She had pushed herself to beat these challenges as far as she could but her own body was now fighting her. It was suggested that a cancer was causing her body to attack itself and starting with the eyes it was something they had not seen before and now her body was failing too. Sciatica, involuntary nervous twitching, and difficulty breathing were some of the symptoms. She was by now adamant she wanted to die. We contacted Dignitas.

Throughout this time we fought with her, argued with her. Trying to persuade her that she could still live without sight but the cancer was now proving to be more and more destructive. We had care laid on, 7 day assistance and more but even this was not enough. We knew she was right and continued with her application to Dignitas.

She was not losing her mind, although at times you might have thought she had but she was dying. With the same symptoms I’m sure I would have difficulty at times keeping my head. With the help of a psychiatrist we were able to get the necessary paperwork together to satisfy the application. If we had not helped her with this, we are sure she would have killed herself and we believe she tried, twice. She was also very aware of the legality and she made it very clear that she wanted to die to everyone who she came in contact with, something we would later regret. She later told me that she was trying to protect us even now and that is was her wish and that she was not coerced. I love you too, mum.

After two years of the NHS merry-go-round our mother was almost completely bed bound and the doctors were saying they were convinced the cause was a cancer but then refused to give us the final scans as they believed she was going to use them in order to die in Switzerland. We asked for them under the Freedom of Information Act but were refused as the Suicide Act could be used to overrule the Freedom of Information Act. She needed these scans, more importantly so did Dignitas. She was crushed! Dignitas could not proceed without the scans even though her wish to die was because of her loss of sight not Cancer – a sight that would never return. She was now vaguely given weeks to live.

We contacted everyone for help and through Friends at the End we found another agency in Switzerland, Lifecircle.

Lifecircle were fantastic – run by Erica Preisig, previously a doctor at Dignitas. She was able to look at the whole situation and saw our mother for the unique person she was and her unique predicament. They were able to accept her and her reasons for dying. In their application to the local council they presented the case together with the cancer and mainly her now complete and permanent loss of sight and it was accepted. Our mother was visibly happy.

In Switzerland you can choose to die at home in your own bed, but elsewhere you can’t. At Lifecircle they were professional and kind, and made my mother feel special and the centre of attention. I can honestly say for two years I had not seen my mother happier. She was surrounded by her whole family, normally scattered across Europe but they were all there. She had three amazing days in Basle with us. These were very hard days for me but I was supported by her strength and resolve, we all were. She passed away peacefully, without pain, surrounded by her family. This is what she wanted.

We cannot thank Lifecircle enough for their help.

Charlie loved life, but not his death. He was 90 years old when he finally passed away on 11^th October 2015, after 5 weeks in hospital. He was admitted for Acute congestive heart failure and hypoxia caused by 3 1/2 litres of fluid having collected on his lungs. In essence, he was dying when he was admitted, gasping for breath.

During his 5 weeks of hospitalization he had about 20 visits from his religious colleagues. They understood that his memory was so poor by this stage, probably caused by the prolonged hypoxia, that their visits were quickly forgotten by Charlie so they religiously kept coming back to see him to reassure him.

Whilst in hospital he decided 4 weeks prior to his passing that his life was complete and he knew that it was time to go. He had many reasons to justifiably come to that decision. As a diabetic who had had a quadruple coronary bypass 7 years previously he reckoned he had had a good innings. The consultants agreed that he was perfectly lucid and understood exactly what he wanted for himself as he repeatedly begged for a quick and painless means to depart this world. His Christian beliefs and committed life did not clash with his requests for a compassionate end. Although he appeared clinically depressed his life expectancy was deemed to be so short that anti-depressants would not have enough time to take effect.

Had he been allowed, he could have had a beautiful assisted death in hospital surrounded by his loving family, but the law prohibits this in the UK. Instead he had to endure the added complications of a hospital induced urinary infection caused by MRSA; constipation and delirium; an inability to express himself clearly due to the loss of the relevant words; cardiac pains; loss of dignity; the unpleasantness of intra venous Gentamycin treatment with subsequent loss of appetite; difficulty then inability to swallow; exhaustion caused by sitting out of bed; discomfort in his legs and body in general; a dental abscess; nausea; a terrifying death.

Such was his unnecessary drawn out suffering that I felt compelled to record the details in a digital book for all to download. It is called ‘10/11’ and co-authored by myself Ruth Eyre-Pugh and my father. It is downloadable here.

Having worked as a veterinary surgeon, I know how the correct use of drugs can ease the passage from life to death. The clinical signs are those of a general anaesthetic being administered with pain free loss of consciousness. As humans, there would be no need to fear death if it was explained what to expect, if we ultimately had the choice to take this route. With sufficient safeguards in place no one would be allowed to be coerced into taking this path against their wishes.

Previously Daddy never once discussed any wish for an assisted death; until he needed it, in those last prolonged weeks. Perhaps his experiences as a religious minister with dying people emphasized how things go rapidly downhill towards the end. A good friend of his who had throat cancer, had recently passed away after many unpleasant months. Dad frequently mentioned this to his doctors who thought dad was just grieving for his lost friend rather than hearing him in actual fact shouting, “Help me die!”

Ruth Eyre-Pugh

My sister Anne ended her life at DIGNITAS – To live with dignity – To die with dignity, in Switzerland in July 2015. I was there with her.

Anne was a bright child and worked hard. After university she entered the probation service and her first training was in Armley Prison in Leeds. The prison is near to the old Turner and Newall asbestos factory where 300 workers went on to die from the asbestos-related disease mesothelioma. Fifty years later Anne began to show the symptoms of this incurable cancer.

Anne moved from the probation service to the Home Office and while there she met her future husband Alf. They were very happy together but he died ten years later.

Anne adjusted to widowhood and retirement with her usual no-nonsense energy and drive. She took an MA in law and became a magistrate, a prison visitor and active member of the Parole Board. She also volunteered for the Coram Foundation. She wrote two children’s books and published two novels.

In early 2014 she began to sound breathless after any physical effort and her doctor sent her for a chest X-ray. The results showed a large volume of fluid building in the pleura, her lung linings. An exploratory operation was performed at Harefield hospital and three litres of fluid were drained from her chest. She felt much better. I went with her to meet her consultant at Stoke Mandeville. The surgeon said that Anne had the unmistakable symptoms of mesothelioma, the condition was already advanced. The prognosis was poor, she was unlikely to live more than 15 months. After a brief period of complete shock, Anne set about planning the most effective use of her remaining time.

“Quality of life is more important than its duration.”

Since childhood our family has always debated ethical issues over dinners and at various get-togethers. Anne and I always thought that quality of life was more important than its duration but many in the family disagreed with us. Our mother died aged 97, after a long deterioration into confusion and weakness. Anne completely accepted that our mother had no notion of assisted dying, nor would she have wanted it.

Regular trips with Anne to Stoke Mandeville showed progressive and rapid growth of the tumour mass in her right lung. She had already joined Dignitas and arranged to fly to Zurich to meet a consultant, who would assess whether she was sure of her wishes, and was of ‘sound mind’. Anne was told that her condition was so serious she would be given the ‘green light’ of approval when she felt it was time to go. A year later the CT scan showed that a huge solid mass had taken over her entire right lung. Its weight was pressing down on her abdomen and it was displacing her heart. Her remaining left lung airspaces were becoming compressed. She told her NHS consultant that she had decided to go to Dignitas to end her life, rather than endure the final phase of weakness and complete dependency. The consultant was kind and very open. While making it clear that he could not endorse her decision, he understood her position. We saw him once more and that meeting, with another staff member from the Cancer Unit, was very moving.

Anne told Dignitas that she now believed that her condition was rapidly worsening, and asked if she could make an appointment to go there to end her life. Having confirmed a date there was much paperwork for her to collate. Copies of X-rays, proof of residence, dental records and medical diagnoses were required, together with the Dignitas fee. Knowing her wish, I offered to accompany her. I also knew that my sister wanted a memorial service in her local parish church and I thought that she should tell her vicar about her plans. This she did.

Anne needed to be carried on to the aircraft to Switzerland but once aboard was calm and comfortable. We stayed in a central Zurich hotel where she met the same consultant she had seen a year earlier. He asked about her decision and made the assessment that she was still rational and sure that she thought it was time to die. He made it clear his presence there did not mean she was obliged to end her life. He said that he would write a prescription for a lethal dose of a drug which would be made available the next morning, if she still wanted it.

Our last evening together was a long supper during which she told me about the music and literature which had most enriched her life. By 11.00 pm we both decided to go to our rooms. We met for breakfast next morning before taking a taxi to Dignitas. The man and woman in the little bungalow were kind ordinary people who went through some paperwork to confirm Anne’s identity and to ask her once again if it was her sincere wish to go ahead with her suicide. She confirmed that it was her wish. They explained the process. A dose of anti-emetic must be swallowed at least 30 minutes before the lethal drug. We went for a stroll around their little garden and sat by the pond. A little later Anne said she was ready to go in. She drank the anti-emetic and we played music and talked about our time at home together and our school days. We laughed about the eccentricities of some of the teachers we had known. Anne went to the bed and asked for the drug, a liquid she swallowed in two sips. I sat beside the bed and we held hands tightly with some music by Tallis playing on the CD. Within a minute and a half her grip slackened and she was unconscious soon after. She went into a deep coma and died peacefully. Now it was the turn of the helpers to support me. They were very kind. I made my farewell to my dead sister and set off for the airport and the flight to London.

“It was right for her.”

Her memorial service was held six weeks later. It was very well attended, the vicar spoke at length about my sister’s request to him and people shared memories of their time with her. Most people have been supportive of Anne’s decision, the most common remark is: “It was right for her”. But not everyone takes that view. Some people, even those who knew she was terminally ill, feel cheated of a ‘final goodbye’. Others feel that life has a natural end and a natural death is somehow better for both the dying person and the bereaved relatives. Others believe that God gives life and no one has the right to end it. I understand all those positions but I believe we should have the choice to decide on the basis of our own informed values.

Janet Penton has penned this story about her mother’s life and death:

Margaret was born during WW1. Her father survived his army service. Margaret married and gave birth to her son just a few years before WW2 started. She spent the war years nursing her dying father having been obliged to evacuate her very young son out of London while awaiting news of her husband who had volunteered for service in the army. (He served in the Kings Royal Rifles and was one of a very few survivors of the Battle of Calais only to be wounded later in North Africa where he had served as a Desert Rat under General Montgomery.)

All 3 of Margaret’s children were born before the advent of the NHS. We were raised with a “down- to-earth” attitude to death and dying – probably as a result of our parents’ wartime experiences.

Mother was widowed in 1978. She spent many years caring for her eldest daughter who had been diagnosed with a mental illness. Margaret had a heart attack aged about 70. At that time she happily benefited by resuscitation and good intensive care treatment in an NHS hospital.

Despite a diagnosis of “heart failure” and the necessity to live on her meagre state widows’ pension, she went on to enjoy an independent life in her own house for many years.

Following the death of her son from cancer in 2006 Margaret’s physical health deteriorated – she very nearly died on the same day as he did.

Margaret would sometimes stop taking some of the prescribed drugs for her “heart failure” due to the side effects. The result was that, rather than hastening her death, as she hoped, she ended up in A&E on a number of occasions. This was often because fluid built up in her chest that had to be drained – an unpleasant and painful procedure.

Sometimes she would end up having to stay on a ward to fight off infections which were treated with antibiotics. She also contracted pneumonia, from which she unexpectedly survived.

The doctors seemed to be anxious that her wishes to remain at home should be encouraged and new arrangements were periodically made via social services for home care. She was reluctant to accept people coming into her home. I can understand why ….. elderly people are often treated in a patronising manner and the “home care experience” in my mother’s case cannot be described as a happy one, one carer even borrowing money from my mother, albeit a small amount.

There were multiple outpatients’ appointments in a large hospital necessitating long and stressful journeys. Eventually the consultant responsible for Margaret’s care recognised the difficulties involved and an arrangement was put in hand for a “heart nurse” to make regular visits to mother at home. This worked for a while; then the visits gradually lessened and stopped.

The struggle to support mother at home where she wanted to die became increasingly difficult. She was almost totally deaf so communication was a problem. Her eyesight was good, however, so she was still able to read the newspaper and do the crossword.

Margaret had become fiercely independent, sometimes rather angry at her predicament and reluctant to accept the fact that it was becoming dangerous for her to be living alone at home. On one occasion I found a pan of boiling oil on the stove in the kitchen …… yes, oil – for cooking chips! …… while mother was sleeping peacefully on the settee in the living room!

One Sunday we visited and found mother up and about and in good spirits. Little did we know that this would be the last occasion we would see her in her own home. Monday morning we got a call saying that mother had just been admitted into A&E following a fall at home. She had apparently slipped on some spilt orange juice on the kitchen floor and had been unable to get up. She had tried to pull herself along the carpet (suffering burns to her very thin and sensitive skin) towards the telephone so that she could call for help, but had been unsuccessful. She spent all night on the floor. (She had refused offers of wearing a helpline.)

The duty carer found her on Monday morning and called an ambulance. We rushed to the hospital where we had to search for her in the large A&E department. She was in such a bad state that I didn’t recognise her at first. Her face was swollen, presumably caused by fluid being collected there, hence our difficulty recognising her. There followed a long stay in hospital and it became obvious that she would never return to her own home.

With the help of social services a vacancy was found in a residential care home. There was not much choice as Mother was thought to be near to the end of her life and the need for a bed was urgent.

The care was poor and I knew from experience that this standard was about “par for the course” for the elderly. Mother, understandably, didn’t want me to complain and I didn’t want to worsen her vulnerable position, especially as she was not expected to live for much longer.

In the event, she was obliged to endure nearly 5 years slowly deteriorating in that home – a place where she didn’t want to be, amongst people she didn’t want to be with.

While she was there she fell and had to have an operation at the age of 98 (!) for a fractured femur – an operation from which the chances of recovery were not good. However, mother once again rose like a Phoenix from the ashes! The hospital seemed to act in undue haste following her recovery from the operation and she quickly found herself back in the same care home. The little mobility which she had enjoyed was now totally lost.

Margaret had to suffer another three years before she eventually died of a respiratory infection just a few hours short of her 101st birthday.

She mistakenly believed that, when her time came, she would be helped towards a peaceful death by a compassionate doctor.

In the last years in her own home, mother had often joked that she was “past her sell-by date”. She didn’t want to live such a long life and was unprepared. I was unable to persuade her to put anything in writing about her end-of-life treatment wishes. I know that she wanted to be left alone to die at home. She mistakenly believed that, when her time came, she would be helped towards a peaceful death by a compassionate doctor, as she had witnessed her father being helped many years ago.

It remains a great sadness that I was unable to help my mother achieve the death she wanted when she wanted it. A change in the law to allow medically assisted death, if that is our choice is, in my opinion, long overdue.

I have now taken positive steps to protect myself from a similar fate by updating my Advance Decision to include a DNACPR order (Do Not Attempt Cardiopulmonary Resuscitation) and can recommend the ADA website for more information on this subject.

My parents fell in love as students in the mid 1950s – that intoxicating rare love that was to last a lifetime. They married and embarked on their adventure together as an unbreakable, cohesive unit. My Father was a chemical engineer by profession and then a decade later, after much careful planning, turned his hobby into his work and built a successful business which provided for his beloved wife and their four children.

As a scientist Dad found innovation and technology fascinating and was the ‘provider’ and ‘fixer’ for the family. He was creative, self reliant and immensely practical; he knew his mind, guiding and supporting those around him and always had a plan for the future; above all he protected his family from the tough times. Mum gave up her career to care for the children, managed the house and invested time and effort in the local community. Dad’s business was based at home, so he and Mum spent far more time together than most couples are able to, where at least one person goes out to work. It was a luxury to spend so much time together, but it was also their Achilles heel.

Decisions were taken jointly for both the family and the business. They faced the world together.

The family lived well, had lots of fun and enjoyed life; with everyone blessed with good health. The children grew, flew the nest, and started building their own lives.

Grandchildren appeared. All was well.

In 2011, Mum was diagnosed with inoperable, incurable cancer and, as a result, Dad’s world was ripped apart. I can only imagine how devastating it must be to hear that the person you love most in the world has a terminal illness. The clock had started ticking for Dad…

Treatment was started for Mum – making her feel increasingly sick and unwell. All their hopes were wrapped up in the little pill she was given. Dad devoted all his time to caring for Mum, driving her to her various appointments and trying to fix the unfixable.

At the same time, Dad started to lose his sight – robbing him of so many things he enjoyed doing – including the ability to read the newspaper and books (his source of information on the world and technology). Soon, he was unable to see to send emails (his only private way of staying in touch with family and friends during Mum’s illness). The peripheral neuropathy from the type 2 diabetes made his walking more difficult, slow and unsteady. Gradually his fingers lost their dexterity too. Life was tough. His heart and his spirit were being broken. He suffered carer’s burn out – this proud, strong man weeping inconsolably, completely exhausted with the emotional and physical strain.

How must it have felt to have no control; to invest everything into care for the person you love; and to know that you cannot win? In September 2012, Mum was admitted to the local hospital for an emergency operation unrelated to the cancer. She rallied but then became very poorly and was cared for in a side room on an acute surgical ward. The family gathered, and spent a few precious days saying goodbye. Dad was adamant; he would be with her when she died so we stayed at the hospital taking it in turns to keep vigil with Mum.

A few days later, Mum died, slipping away into a grey dawn – with Dad and the family at her bedside. Dad was desolate. Broken-hearted. Bereft. I didn’t expect him to survive until Christmas. I think I held my breath for nearly eighteen months. He tried so very hard to keep going. A few months later he, his older brother and sister discussed together how they didn’t want to live on forever and would wish to die when they felt life was no longer worth living. The clock was ticking a little faster…

Dad tried hard to make a new life, trying to learn how to cook simple things, to do the washing, and to look after himself. His health continued to deteriorate. His failing eyesight led to him giving up driving – and with it the last vestige of his independence.

The neuropathy meant his walking was now very tottery so he conceded to using a walking stick but his pride in himself as a person would not allow any other aids. He found it difficult to get into and out of the bath. His fingers were no longer able to do up shirt buttons. He struggled with what he called his ‘uncertain’ bowels and the loss of dignity that brought.

During this time, there were thoughts about moving from the bungalow and then there was a decision to downsize and move to a flat in a retirement complex near me. The forthcoming move gave Dad an element of control and a sense of real purpose again – getting rid of furniture and ‘stuff’ as well as sorting through paperwork. He was preparing. The clock was ticking…

Dad’s sister became very unwell and he stopped eating – only restarting when she rallied. The house move was brought forward so that it would happen by the first anniversary of Mum’s death. Dad moved into the flat. After feeling very isolated in the bungalow, he enjoyed the company available in the communal areas of the complex but, at the end of the day, he still had to go back into his flat, close the door and face the aching loneliness without my Mother. Try as he might, he was desolate without her. We soldiered on, Christmas and New Year came and went. The days began to draw out.

Dad’s beloved sister visited at the end of March and they enjoyed a special visit together – it was to be their last meeting. The next day, she fell and broke her hip. We knew there would be no recovery. From that moment it felt like the clock started doing that thing that is shown in movies when they cut the wire on a bomb… whirring round, counting down ever faster…

We were away. I rang Dad more frequently and organised extra visits from friends. We returned from holiday and visited him on our way back. Dad was low, but chatty and interested in news from home. He walked us to the front door – he was very unsteady on his feet. There was nothing different in his farewell or the parting hug – we said we’d see him the next day as we were all going out for Sunday lunch. Later that evening he took his life.

The next morning, I rang the flat and there was no answer. My heart slowed as a feeling of dread wrapped around it. I rang twice more and then drove over on my own. I let myself into the flat and found his body, cold and stiff. Then there were paramedics; police, lots of police including SOCO; undertakers; statements; an air of suspicion. There was a little sweet wrapper, carefully knotted on the bedside cabinet – for me that was the hardest thing to see. It showed the sense of purpose of a man, whose fingers could no longer do up shirt buttons, but whose last act was measured and carefully considered. His letter said that life had become a burden. It broke my heart that Dad had to be alone when he died and that there were no proper goodbyes. But he was careful – oh so careful – to make sure that I wouldn’t be implicated. The police started to treat me as a ‘witness’. A post-mortem. More statements and, eventually, we got to the Coroners Inquest and a line was drawn. I could breathe again.

I feel there is a deep significance in Dad’s ancestry – his mother, my Grandmother, came from a noble Samurai family and Japan is a country where suicide is considered honourable. Indeed, when she reached her 90th birthday, she decided she was ‘too old’ and refused to eat or drink, dying quietly thirteen days later, on my Father’s birthday.

Although she was living with my parents, my Father respected her choice and cared for her as she took that final journey. To me, that shows the deepest love, respect and honour for her choice.

By choosing to die he took control over a life where the purpose had gone and his increasing frailty was removing any joy. He recognised that his health was only ever going to get worse. After my Mother, his sister was the next most important woman in his life and the threat of facing the loss of his beloved sister after she fell and broke her hip was the final straw for him. The options for taking his life were limited – although he was becoming frailer, he was prescribed very few pills; and he no longer had a car. He also knew he would be found (by me) and tried to make everything about his death as ‘tidy’ as possible. But he had to die alone…

My Father had led a full life, enjoying his family and friends, and contributing to society. As a man who had run his own business he was used to being in control and making decisions. His was not depressed, but the aching loneliness following the death of my Mother and the imminent prospect of facing the loss of his beloved sister; combined with his own increasing frailty and a loss of any quality of life, left him no choice.

There was no time to go to complete all the documentation to allow him to travel to die at a Swiss clinic. In this country there was no other option open to him. And he had to be alone. For a man who had done everything to ensure his wife did not die alone, that is something that breaks my heart, that we could not share that final journey with him and that there could be no proper farewell to a remarkable much-loved man. He protected me but, because there were no goodbyes, the impact of his self chosen death has affected the wider family more than he would ever have wished.

I completely respect my Father’s choice to end his life and understand the reasons behind his decision. I strongly believe it was HIS decision to take. I also respect the immense courage it took to die alone. But how was it fair to him or to his family for suicide to be his only option? Therefore, I would like his legacy to be a change in the law so that, with the appropriate safeguards, there is the choice available in this country for a medically assisted death for those who feel that their life is complete.

My husband, Allan, was a wonderful person. Kind, curious, generous, funny. He was a successful entrepreneur and devoted family man. In 2015, he was diagnosed with early-onset Alzheimer’s. Allan immediately knew that he wanted a measure of control over the end of his own life. In the UK, unlike so many other countries around the world, medical assistance to die for people who are terminally ill or suffering intolerably from incurable conditions is illegal. He contacted a Swiss organisation that permits non-Swiss people to choose an assisted death. Allan was definitely not ready to die, but just knowing that he could have that option gave him a lot of comfort.

He consulted a law firm specialising in human rights. The lawyers set out exactly what Allan and I had to do, if he was determined to travel to Switzerland for an assisted death. Allan was adamant – he declared: “I’ve had a good life and want a good death”. Anyone who goes with a person to Switzerland for an assisted death risks prosecution for assisting or encouraging a suicide – and could face 14 years in prison. Allan and I had been together for over 40 years. There was no way I was going to let him die, alone, in a foreign country, without me by his side. He knew we had to take every precaution to demonstrate that Allan had made this decision himself, without coercion, to protect his family after his “good death”.

Allan’s diagnosis of Alzheimer’s was terrifying for him and his family and friends. We would have done anything to keep Allan with us for as long as possible. People think of Alzheimer’s as “auntie getting a bit forgetful”, but that’s so wrong. Alzheimer’s is a serious, terminal, degenerative brain disease that robs a person of all their physical and mental ability in a relentless slide towards a state where you can no longer speak, recognise your loved ones, eat, drink or take care of your personal needs without assistance, becoming unable to move or communicate whether you are in pain or distress.

In early 2021 Allan’s ability to communicate was getting far worse. His spatial sense and motor function were deteriorating. It was plain that Allan still had mental capacity to request an assisted death; he could understand questions put to him and make himself understood, but with travel restrictions in lockdown, we were fearful that Allan’s cognitive state would soon be too much in doubt for him to be accepted by the Swiss clinic. The then Health Secretary confirmed in the House of Commons that travel abroad for an assisted death was permissible in the pandemic.

Then Allan got shingles. Now, he indicated that his quality of life had diminished to the point where death was preferable to him. Two psychiatrists confirmed that Allan was in sound mind to decide how he wanted his life to end – he knew what he wanted, and why. Allan had been so clear that he didn’t want to end his life in an institution, suffering and unable to communicate. Now was the time to go with him to Switzerland.

In the Swiss clinic, Allan moved the lever that opened the flow of drugs. We hugged and we cried. He said: “bye bye”.

That is the finale to Allan’s life and he did get the good death he wanted.

By the time you read this, Richard will have ended his life at Dignitas in Switzerland. He wanted to share his story to shine a light on the iniquity of the law in the UK that forces people to travel abroad to end their lives. This is his story, in his own words **

“It’s humbling to be able to help without trying to, just by being”

I am 70 years of age. Over the second half of a gratifyingly healthy life, I have felt comfortable viewing the body and mind as separate phenomena, though related. This means that bodily discomfort does not need to manifest additionally as mental grief. This is relevant to what follows.

At the end of 2017 I stumbled in the street for no apparent reason. A month later I lost balance and fell doing an exercise I had used for some 20 years. We initially wrote these incidents off as age related. It was only when Dupuytren’s syndrome showed in my hands that I took the package of symptoms to my GP. We know each other quite well in spite of my only having consulted him infrequently.

My GP sent me for neurological tests in Southampton and called me in for the results. He judged correctly that he could tell me – motor neurone ALS* – without my fainting on him. Here my body-mind awareness arose instinctively. The body is a creation of nature, birth and death are routine processes of nature, and none of this needs to disturb the underlying equanimity of the mind. “I” cannot control “my” body. It is not a question of “why me?” but instead “why not me?”.

This was in April 2018, since when I have seen my specialist consultant five times. He confirmed the diagnosis, commenting that my GP had been “brave” to tell me. He regarded mine as a relatively early diagnosis, he said some patients first come to him when the condition is much further advanced. I walked five miles in a desert in March 2018 and drove a (hire) car in June, but soon after that I started to use crutches. We managed a final enjoyable five week holiday in Asia in September 2018, without the adventure aspects we had indulged in – there is a natural end to everything. However much we have done, and may wish still to do, it is empowering to accept that now is enough, there does not need to be any more (especially if there cannot be!).

Crutches served to the end of 2018. A four wheel rollator has done the job since, but a wheelchair is waiting because the legs now seem to have reached the point where they cannot be trusted even on the single level of our apartment.

My wife and I decided to approach Dignitas as soon as we realised what is involved in the natural final stages of MN. My GP and consultant have both done nothing to discourage us from going to Dignitas, but they have understandably not offered direct encouragement either. I received my provisional green light in September 2019 and I have arranged the final journey before the end of the year. Dignitas themselves are very friendly, staff speak German, French and English, and it feels like an efficient and effective organisation.

We judged the final timing based on four physical factors all coming up to a point of significant change at about the same time soon: (1) breathing would need a ventilator, (2) difficulty swallowing would lead to feeding tubes, (3) fading voice would require a voicebox, and (4) difficulty coughing could leave fluid near the lungs. We have opted specifically not to wait for any of these changes. The trip to Switzerland needs wheelchair rather than rollator.

We regard ourselves as very fortunate to be able to afford Switzerland. We are aware that so many who would like to go simply don’t have the means. Certainly our own life insurance is not automatically invalidated by suicide in the form of assisted dying – MN cases are considered individually on their merits. Ours is one of the larger companies, so hopefully others will be as flexible. To speak early to insurers if in doubt may be key to some people’s ability to pay for Dignitas?

My application for Attendance Allowance seemed to receive fast track approval. We will have enjoyed this for eight months, but I probably could have applied earlier. This suitably acknowledges how much my dear wife does to support me, taking over each task as I become unable to do it myself. The application for local authority blue badge runs to over 40 pages, but for terminal illness reduces to just one page. Again delivery was virtually by return, when the notes warn of waiting ten weeks.

Completely independent of MN, Dupuytren’s syndrome has bent the fingers dramatically. However with the focus on MN there has been no incentive to sort that out. Surgery for Dupuytren’s might well have been painful to the body, whereas MN has not involved serious discomfort.”

Richard

*Amyotrophic lateral sclerosis

**Research by the Assisted Dying Coalition, of which My Death, My Decision is a founding member, estimates that at least one British person ends their life in Switzerland every week; and that over 1,500 UK citizens are members of one of the assisted dying organisations in that country.

The number of those who want to subscribe for such help would rise considerably, were it not for the fact that the cost of ending your life in Switzerland is around £10,000. Yet, to date, Parliament has not seen fit to pass a law allowing medical assistance to die, despite research by the National Centre for Social Research showing that close to 90% of the population favour assisted dying in some circumstances.

My interest in assisted dying began in 1985, when my father received what today might be described as ‘non-voluntary euthanasia’. He was seriously ill at home, with a combination of a long-term digestive problem and a chest infection, and I had come to look after him. Late one evening, he was in so much discomfort that I phoned his GP, who fortunately was on call that night. The GP said that he should go into hospital, but my father was adamantly opposed to this. The GP knew my father well. He said that he would give him something to reduce the pain and help him sleep, but that if he wasn’t better in the morning he would have to go into hospital. He gave him an injection of what I presume was morphine. After doing so, he told me that he had given him a strong dose and that it was possible that he might not wake up. His prediction was right: my father died in his sleep in the early hours of the morning.

I suppose some people would have been upset or angry about what the GP did, but I was not. My main emotion was relief (for my father, who was now at peace and wouldn’t have to go into hospital and, I must admit, for myself, since I would no longer have to worry about how to care for him), and I was therefore very grateful to the GP. As a result of this incident, I did some research about euthanasia and joined what was then the Voluntary Euthanasia Society – now Dignity in Dying.

Since then I have learned much more about assisted dying and experienced many other end-of-life experiences, the most traumatic being that of my husband in 2010-2012. The more I have learned and experienced, the more strongly I believe in the importance of choice at the end of life, including the right to an assisted death. However, ironically but perhaps not unusually, the more I learn, the more I realise how complex this issue is and how difficult it is to provide appropriate legislation.

My husband’s experience illustrates many of the problems. In 2010 he had a major stroke. He was 88 at the time – 25 years older than me. It left him partly paralysed, incontinent, unable to swallow or speak and mentally ‘confused’. However, although confused, he was sufficiently compos mentis to know what had happened and the possible implications. We had just bought an apartment in Crete and were planning to move there in a few months’ time. He was really looking forward to this and devastated by the thought that now he might not be able to go. The doctor who was treating him wanted to insert a feeding tube through his nose in order to keep him alive. My husband had an advance decision, which stated that he didn’t want to be resuscitated, so the doctor asked him whether he wanted the tube. My husband readily agreed.

This was the beginning of a long and painful process of ‘treatment’, which ended up with his death in a nursing home two years later. A week after the stroke he was transferred to a specialist rehabilitation unit in a different hospital. There it was decided to replace the nasal feeding tube with one directly into his stomach – something known as a PEG. However, before this could be done, there was an outbreak of C. difficile, a hospital ‘superbug’ that causes acute diarrhoea, in the ward and my husband was one of the first victims. His health deteriorated and he was subjected to strict quarantine regulations, which, among other things, put all his rehabilitation treatment, including the insertion of the PEG, on hold.

Eventually, the quarantine was lifted, treatment was resumed, the PEG inserted and, after nearly four months in hospital, he was discharged and came home. However, less than two weeks after coming home, the C. difficile returned. I tried to care for him at home, but it was too much for me, and so, after what was one of the worst weeks of my life, he was readmitted to hospital. I was then told that the C. difficile could recur at any time. Therefore, after discussion with my husband and with a combination of relief and regret, I accepted the offer of a state-funded place in a nursing home.

My husband and I both did our best to make life in the nursing home as pleasant as possible. He accepted that this was now ‘home’ and, since I spent a large part of each day there with him, it became my second home. However, it was obviously not the way in which either of us would have wanted his life to end. Moreover, the situation could have continued indefinitely. He was severely incapacitated, physically and mentally, but he was not terminally ill. He eventually died quite unexpectedly, not from any direct effect of the stroke or the C. difficile, but from pneumonia, which he developed as the result of a virulent chest infection that swept through the nursing home and caused the death of several residents.

Since he was not terminally ill, my husband would never have qualified for an assisted death under the terms proposed in the Marris Bill that was defeated in parliament in 2015 <https://dev.mydeath-mydecision.org.uk/house-commons-rejects-assisted-dying-bill/>. In his case, the critical decisions that had to be made related to the withholding of treatment. The first and most important of these was made the day after the stroke, when he was asked if he would agree to have a feeding tube inserted to keep him alive. I often wonder whether, if he had known how things would work out – or if he had not been so looking forward to going to Crete, he would have agreed. I never dared ask him – partly because I wasn’t sure if he was sufficiently aware of the sequence of events to be able to answer but mainly because of my own guilt. Although I had not said anything at the time, I had not wanted him to have the tube inserted. I had wanted him to die then, and I felt guilty because I knew that I wanted this not only (or even primarily?) for his sake, but for my own. I didn’t want to have to face what I knew would be a long and difficult process of caring for him.

There were several subsequent occasions when similar decisions had to be made. The first was whether or not to have the PEG. He agreed to this, but at that time it looked as if he would make at least a partial recovery and so perhaps be able to go to Crete. The second was what to do when the insertion of the PEG was delayed for weeks. During that time, he repeatedly pulled out the nasal feeding tube and resisted attempts to replace it. At one point, he became so weak that a doctor gave him a clear choice: we put the tube back or you die. Reluctantly he agreed to have the tube put back. A similar situation occurred when he was re-diagnosed with C. difficile while at home. He was told that if he didn’t go back to hospital and receive treatment, he would die. Initially, he chose to stay at home and die. But as he became weaker and it became evident that I could not care for him at home, he reluctantly agreed to go into hospital – and going into hospital meant getting treatment.

“Maybe I should just turn my face to the wall?”

During his time in the nursing home, his health stabilised and the main question then was whether he was prepared to tolerate such a life. At no time did he actually say he wanted to die. However, at times he appeared to be thinking about it. On several occasions, he said to me: ‘Maybe I should just turn my face to the wall?’ This was an expression he had used before the stroke. He had thought that when his time came, he would be able to just ‘turn his face to the wall’ – in other words, to consciously give up the will to live. However, when he said this in the nursing home, he didn’t seem either to be very sure that he really wanted to do it or to know how to do it.

The situation was complicated by his mental impairment. Much of the time he was fully aware of the world around him but there were times when he was very confused. Moreover, he had very little sense of time. One day, when he had been in the nursing home about 18 months, I asked him how long he had been there. He obviously had no idea, so I asked him whether it was six months, a year or 18 months. He hesitantly suggested six months. This raises another difficult issue related to end-of-life decisions: when does someone have mental capacity? In my husband’s case, it would have been very difficult to assess this.

From this and other end-of-life experiences, I have drawn five conclusions:

I don’t want to end my life in the way that my husband did. In my view, it is the quality of life that is important, not the length. Moreover, I don’t want to be a burden either on my family or on the state. I estimated that my husband’s care after the stroke cost the state around £100,000. Was that the best use of scarce resources?
In my view, assisted dying should, as MDMD proposes, be available ‘to all mentally competent adults with incurable health problems that reduce their quality of life permanently below the level they are willing to accept, provided this is their own persistent request.’
For most people, withholding treatment is likely to be more relevant than assisted dying as a way of controlling how and when one dies.
Advance decisions are thus very important. In the light of my husband’s experience, I have expanded mine to say that I don’t want to be artificially fed or to be treated for an illness that is likely to be terminal or leave me severely incapacitated.
Society as a whole, and the medical profession in particular, needs to change its attitude towards death. I believe that death should be seen as a natural end to life and that the emphasis should be on improving the quality of life, not extending its length.

Note:

I have documented the last two years of my husband’s life in the form of an online book. In order to protect the interests of those involved, I wrote it under a pseudonym and changed the names of people and places. The book is called End-of-Life Experiences: the Story of Thomas. The author is Tina Bernard and it was published online by Amazon Books in 2014. The kindle version is free of charge. It is available here.

Diana Conyers

Two hip replacements and major heart surgery gave Joan a good quality of life until her early ’90’s. She lived in an excellent sheltered housing community and had family living locally who gave her support as she needed it. She had many friends and was active in her church.

By July 2013 it was becoming clear that her failing memory was starting to seriously affect her life – she was losing the ability to remember appointments, write a shopping list, find things in the supermarket, and remember her bank card number. Shortly after this point she fell and dislocated her hip. This event marked the start of her terminal nightmare which lasted over two years. A spell in hospital to reset the hip, and a general anesthetic left her very confused. When she returned to her sheltered flat, she had carers to help 4 times per day. Her worsening dementia, coupled with her strong sense of liking to do things her own way, made this very difficult for her to accept.

Her problems were compounded by a worsening rectal prolapse which gave her periods of extreme pain and discomfort. There were countless GP visits and emergency hospital admissions. Her dementia was getting to the point where she couldn’t retain information about what was happening to her. She didn’t understand who the various people who tried to help her were.

“Make them see sense.”

She was very unhappy with her situation. On several occasions she asked me to help her end her life. After careful thought, I refused. I didn’t want to risk a prison sentence, but more fundamentally, I don’t believe it is the right approach for an emotionally involved person, like me, without medical training, and no professional experience in dealing with end of life situations – (or murder!), to take the law into their own hands. She asked if there was someone else who could help her. I carefully explained that doctors were not allowed to provide the sort of assistance she was requesting. “Make them see sense” was her response.

Things reached crisis point in November 2013. Her prolapse was causing considerable pain more frequently. One day the community nurse happened to be visiting when Joan’s prolapse was out and causing pain. The nurse attempted to push it back – and failed- causing her agony. The GP was called – he tried and failed – causing her agony again. He arranged for an emergency hospital admission. The hospital doctors were about to try the same procedure again without pain killers. I had to break down in tears to stop them putting my mother through agony for the third time in one day. They gave her morphine and replaced the prolapse. She was admitted as an in-patient.

I returned the next day to find her slumped in a chair, crying, and repeating out loud “I want to go to heaven, I want to go to heaven…” It took me an hour to calm her down. I was furious. Every time my mother was admitted to hospital I made sure that the doctors had her advance decision document which clearly stated that she consented to “any medical treatment to alleviate pain or distress”. It went on to say that she maintained this request even if it would shorten her life. I had naively assumed that this would ensure that she would be given appropriate sedation or whatever it took to keep her out of this kind of distress. I talked to the registrar on duty at the time. He asked me what I wanted him to do. (How did he expect me to know? I’m not a medic!) I referred to her AD and suggested some form of sedation to alleviate her distress. He then spent a long time explaining to me that he could not prescribe sedation as “BMA guidelines say that is only for those who are a danger to themselves or others”. I mentioned palliative care and was told “she’s not ready for palliative care, she isn’t dying.”

The following day I met her consultant who told me there was an operation that they could perform for her prolapse, but considering her age they would not perform it until her condition got considerably worse. They were concerned that she might die. He was not impressed by my response that that was what she wanted anyway. I wonder if his private concern was at least in part about how it might affect his operation success statistics. Is this a motivation for doctors to refuse to operate on the elderly – even if it leaves them to suffer?

“It’s like giving up yourself – being a piece of equipment that’s told where to go and what to do.”

Joan was discharged and had to continue enduring the pain and discomfort. She was re-admitted on New Year’s day 2014. At this stage I had discussed the situation slowly and carefully with my mother so that she understood. With my help she wrote a statement to the effect that she would like to have the prolapse operation even if she died in the process, as the pain and discomfort was making her life unbearable. Even this did not persuade the consultant. After a week or so she was discharged again.

A month later she was demanding far more attention from her carers than they could provide in her sheltered housing situation, so I was asked to move her to a nursing home. My mother and I had discussed this. Joan was keen to stay in her own flat as long as she could. Her dementia would have made it difficult for her to adjust to a new location and there was still the possibility of a rectal operation which would change the situation. I contacted Joan’s GP and asked him to negotiate with the hospital consultant as I was getting nowhere. Within 24 hours Joan had been admitted to hospital as an emergency and given a successful rectal operation.

“I’ve never felt so frightened at any time in my life.”

The operation largely solved the pain and discomfort her prolapse had been causing. Her dementia worsened though. Over the following 18 months she continued to live in her flat but was getting more and more confused. By now she was doubly incontinent and was unable to call for help as she could no longer remember how to use the pendent alarm button she wore round her neck. I’ll spare you the worst details, but suffice it to say that Joan had lost all shreds of dignity. She started getting lost around the communal building in which she lived and even around her flat. She couldn’t find the way to the communal dining room. Sometimes she couldn’t even find her way from her bathroom to her armchair within her own small flat. When she got to the stage where she was found wandering around outside at night with few or no clothes on, the sheltered housing manager quite understandably insisted that she had to move to a secured dementia nursing home.

“All I seem to do is to create problems for myself and other people. I just don’t want to go on.”

After a very difficult few weeks searching for somewhere suitable, a place came up in an excellent dementia nursing home where her name had been on the waiting list for several months. However, she never really settled in. She couldn’t tell the difference between carers and residents. She couldn’t find her way around her room to her en-suite bathroom. She couldn’t summon help except by wandering round and asking whoever she met. She hated her condition. At times her frustration vented itself in acerbic comments to carers, and even to occasional mild physical violence towards them. I have no criticism of the carers – on some occasions I observed Joan being totally unreasonable and unpleasant with carers who were being incredibly patient and encouraging. Joan was no longer the gentle, kindly, considerate person she had become as an elderly lady.

Joan died, unexpectedly one evening in December 2015. The official cause was “Frailty of old age”. At her funeral my speech about her life ended:

‘No one should be sad at Joan’s death. It was the release she had been waiting for, for far too long. We had already lost the person we knew.’

‘Our parents teach us many things in life. The last thing my mother taught me was how not to die. Over two years ago, when my mother was often in severe pain, she asked me to help her die on a number of occasions. She prayed to be allowed to go to heaven. She just wanted to go to sleep and not wake up. Although I sympathised and wished I could help, I had to remind her that the current law in this country prevents people helping her in that way. “Make them see sense” she said, “make them see sense”. Her quietly spoken words ring loudly in my ears. She was right. Why should this vulnerable elderly woman, and others like her, be forced to suffer, against their will, at the end of their life?’

Make them see sense”. She set me a hard task. But, driven by what I witnessed; by how my mother was denied the end of life choice she, quite rationally, wanted and by what I would want for myself, without having to go abroad; I have already started doing what I can.’

Phil Cheatle

Coordinator – My Death, My Decision

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