A dignified death
He died a good death. He enjoyed a last meal at home with friends and family. He said goodbye individually to each and every person he cared about. In his final moments he was with his best friends and wife, able to say final farewells and write a last page in his diary outside in the autumn sun.
My godfather died with dignity, by his own hand in a clinic in Switzerland. He lived a good life; he followed his passion and founded what became a popular running magazine. He lived well. But early in 2011 he was diagnosed with amyotrophic lateral sclerosis. ALS can sometimes progress slowly. His didn’t. Within months he was in a wheelchair and was facing a slow and painful death. Gradually his body would stop working, he would cease to be able to speak or move any muscles but his mind would remain active. Eventually he might slowly drown and suffocate, but it would be a gradual process as his throat stopped functioning. Already he was in significant pain from bed sores.
Despair engulfed him, this active man for whom athletics and his magazine had been his life’s passion. He could not face dying in this way, unable to move, unable to communicate and, having the means at his disposal, he applied to Dignitas for an assisted suicide. The hope of ending life on his own terms gave him a new will to live his last few months well.
We are all going to die. The only difference is how we die.
In recent months social media has been awash with ice bucket challenges, raising awareness and money for ALS. I was challenged, too, and as I prepared a bucket of water with ice cubes dutifully floating in it I wondered why I was doing it. I enjoy ice swimming, so cold water is not a challenge. It’s great that awareness has been raised and that people have been fundraising on a vast scale, but how much a bucket of water in the face really tells us about what ALS is and how it affects people I’m not sure. So I put down the bucket of ice, Patrick Stewart-style I added the ice to a whisky and toasted my godfather, and I picked up my pen instead.
ALS is a progressive and terminal neurodegenerative disease affecting the motor neurons that provide voluntary movements and muscle power. As motor neurons degenerate and die, the brain loses the ability to control muscle movement until sufferers become totally paralysed. The heart and digestive system are automatic so are not affected. Breathing may seem automatic, but it isn’t: you can choose to hold your breath. ALS eventually takes all choice in movement away from the sufferer.
ALS starts with muscle weakening, especially limbs, speech, swallowing and breathing muscles. When muscles no longer function they start to shrink. There is no cure and only one drug that slightly slows its progress. Some other drugs are under trial but current treatment is mostly about managing the symptoms in order to maintain as much independence as possible and prolong survival. Rates of progress vary wildly; sometimes the disease can progress very slowly or even stop.
Tapio’s story
Tapio’s disease, however, progressed very rapidly. When the initial symptoms started in spring 2010 with his right leg weakening he was optimistic that it might not be anything serious. By December he was using a walking stick, the following February a zimmer frame and by May Tapio was in a wheelchair. When the final diagnosis came in June 2011 it was worse than he had ever imagined. He had never heard of ALS, but as the doctors explained what was likely to happen he knew his condition was incurable. When the disease has run its course, the patient is rendered helpless, unable to do anything for himself, not even breathe. The only thing the doctor couldn’t say was how long it would take. Some people live for years, decades even — Tapio didn’t.
Tapio sank into a deep depression thinking of his bleak end. He wasn’t afraid of the discomfort and pain, or even his dependency on others. The real terror for him lay in the fact that his mind would go on functioning as normal but his body would deteriorate until the only muscles functioning would be the involuntary ones, no movement, no speech, no communication. Tapio did not wish to become a “parcel”, unable to communicate except with his eyes, tied to a ventilator, perhaps for years.
When Tapio heard about Dignitas in Switzerland he said it was as though “a light had been switched on in my heart”.
With hope of regaining control of his life, and death, his depression lifted. There was sorrow, of course; he would never see his grandchildren grow up, but he knew that would not happen now anyway. He was dying. The only difference now was how he lived his remaining days — and how he died.
He was absolutely certain about his decision and made all the arrangements himself. When his wife said “if you go through with it”, he told her word “if” hurt as though she had sworn at him. It was always when, not if. Once the date was finally confirmed — 18 October 2011 — he was a changed man. He had something to look forward to. He became sociable again and made every remaining day count.
He started telling everyone about his decision. Most people were shocked but supportive, although one of his oldest friends did end their friendship on moral grounds. However, Tapio was never alone and in the end his wife, sister and my parents travelled with him to Zurich and helped him through his last days, right to the final moment. My mother said:
They were among the most difficult and beautiful days I have ever lived through.
“There was sadness and pain, but it’s the laughter I remember most.” His sister and wife nursed him but Tapio’s time was spent as if on holiday, talking and eating out.
“Every day he was a little worse, but he didn’t complain. We had to tie him to his wheelchair with a scarf so that he wouldn’t fall off. On the last day, he was ready and down in the hotel lobby well before the taxi (arrived). Even that he had organised himself. He was so impatient we were teasing him that he was afraid he would be late for his own death.”
Coffee on the porch
Dignitas offers assisted suicide to severely disabled people and those suffering from an incurable disease. The Dignitas house is in the countryside in a small business park. A nondescript wooden door in a wooden fence opens on to a small garden. In the middle of the garden is a small, blue, purpose-built house. Nobody lives there.
Staff welcomed Tapio and his companions with coffee and chocolates on the porch as though they were house guests. “It was a beautiful autumn day, crisp and the impression of gold raining down as leaves fell around us.”
Everyone was talked through the procedure in detail to make sure they understood. Tapio had interviews with two doctors. One of them spoke to everyone who accompanied him, making sure that no one was pressurising him and a camera filmed everything. Tapio was asked if he knew what would happen when he drank the lethal drink. He nodded and said calmly: “I will die.”
Tapio’s suicide could not be delayed. His muscle power was failing badly and if he had waited would not have been able to hold the drink.
There was a lot of chocolate on the table — to take away the bitter taste of pentobarbital and juice that would be his last tasting experience in this world.
Even that was very clearly pointed out so that he would know exactly what to expect. Staff advised: “Even after I have put the drink down in front of you, you can still walk away. If you do decide to go through with it, nobody can assist you. If one of you as much as lays a hand on him, we will stop the process and there will be no second chance.”
Tapio had use of the house the whole day, but he wanted to get it over with as soon as possible. He was given stomach-settling medication to stop him retching at the taste of the bitter drink and spoiling his chances. That left him about half an hour.
He wrote the last entry in his diary, and when it was time staff placed a drink in front of Tapio and stepped well clear. He held the small tumbler with both hands and drank it in one go, leaving him three or four minutes. Tapio faced his companions individually, shook hands with everyone and said a few words to each. He even managed to make everyone laugh in his last minutes.
With a final farewell — “Love endures. Now it’s starting to get dark…” — he leaned over the table and was gone.
My mother recounted: “We all touched him now and said our final farewells. In the garden, on the side of the house, there was a beautiful pond with goldfish swimming around it. We gathered round the pond, silent in our own thoughts.
“Afterwards the police came, viewed the filmed evidence and talked to everyone. A doctor also came to examine Tapio’s body to make sure there were no signs of violence.
“Tapio was dressed again in his own clothes, his favourite shirt that he had chosen, and we had the option of seeing him again. He looked like he had just thought of some brilliant idea. The coffin came, Tapio was placed in it and we watched the hearse drive away. The whole thing was as beautiful as it was dignified.”
Tapio died well, he chose to save his own death because he couldn’t save his own life. Death is incurable. We all die. We just don’t always know how. We don’t talk about it and we hope it won’t happen, although it inevitably will. Tapio chose a good death and a shortened but happy life for his remaining months over what he saw as a terrifying life and a horrific death. He was going to die, as we all are, but he knew how, he chose how. And by doing so he chose how he lived his final days. He lived them well and spent them with the people he loved.
Continuing the debate
Tapio’s final wish was that the debate on assisted suicide would continue. His wife said: “The discussion has been very black and white. I have even heard euthanasia compared to Nazi Germans’ ideology.” But euthanasia and assisted suicide are quite different. Euthanasia is the deliberate killing of a patient in order to end suffering. Assisted suicide is deliberately helping someone to end their own life. Tapio’s decision was entirely his own. He researched and prepared for it alone and only talked to his wife about it when he had made his decision. His situation was hopeless as far as he was concerned and the idea of a “dignified death” was what kept him going through his final days.
Tapio was fortunate to die in the company of his family and friends, but few have the means to travel to the Dignitas Clinic in Switzerland. Switzerland is the only country in the world that will allow foreign nationals to seek assistance in death and it must be of their own free will and at their own expense. As much as Dignitas strives to make the house a home, it is still a long way from home for those that visit.
Tapio was influenced in his decision by the story of Dr Anne Turner who had a similar degenerative disease. A documentary about her story helped his wife understand how he felt. Anne travelled to Zurich with her children and ended her life in a Swiss clinic. Because she had to be sure to be able to swallow the medication and be fit for travel she had to die earlier than she would otherwise have wanted to.
Anne said: “If I knew that when things got so bad, I would be able to request assisted suicide in Britain then I would not have to die before I am completely ready to do so. I know that I am more fortunate than many other people in my situation, in that I have the knowledge and the finances and the support of my family to make assisted suicide in Switzerland possible.”
To die with dignity should be everybody’s right.
To prevent coercion from others, be it family who don’t want the burden, or a health service that can’t spare the expense, a decision to seek assisted suicide must be the patient’s own deep conviction that it is the right way for their personal situation. Tapio’s wife said: “The sufferer must feel it so deeply that he is prepared to do all he can for his cause with no outside help. I promised to help Tapio with nothing but practical matters that he was unable to carry out himself, like posting letters. All other arrangements and communication with Dignitas were his sole responsibility. ALS does not rob a person of their capacity to think.”
Assisted suicide has been criticised as giving those that are simply tired of life a way out, when perhaps some counselling could change their outlook. This is not representative of the experience Tapio and his family had with Dignitas. The decision to grant Tapio assisted death did not come easily; every detail about his condition had to be submitted to the organisation and right to the end Tapio was asked over and over again if his decision still held.
Choosing assisted dying is not a decision that comes easily, and once a decision is made it should be a firm conviction. In Tapio’s case assisted dying was the result of a thorough process; he never wavered once he had made his decision. Tapio’s wife said she sees it as an option only for cases like Tapio’s where there is no hope.
Assisted suicide remains extremely controversial. Our instincts are to prolong life for as long as possible, but no life can be saved forever. Dr Katherine Sleeman in her talk “How to Have a Good Death” discusses the need for good palliative care, something healthcare professionals and society avoid talking about. In medical school doctors are taught to save lives, so when a life cannot be saved doctors feel like failures. There is a sense that if a patient moves to palliative care then it is an admission of failure, even though it increases the quality of life for terminally ill patients.
We want to die well. As a society we need to stop whispering about death and start talking about it.
Palliative care is crucial for terminally ill patients, if death is imminent then the final days or weeks should at least be lived well. As Dr Sleeman puts it, what about “saving deaths?” Dr Sleeman focuses on palliative care rather than assisted dying, and it can save many people from misery, but as Tapio’s case demonstrates, sometimes in extreme cases, saving the living breath destroys the life that could have been lived.
For my godfather choosing his own death freed him from a prison sentence within his body that he could not face, it freed him from depression and saved the remainder of his life by allowing him to live well and die well. However, he had to fly to a foreign country at great expense for that freedom. I don’t argue that it is always the solution, far from it, but at the moment many of those who want to die face slow starvation in this country, where the only option available to them is to refuse medication and sustenance as in the case of Efstratia Tuson: “My mother took the only decision available to her to end her life as quickly as possible, and that was to starve herself of all food and liquid.”
There are risks with legalising assisted suicide, though not as great as with euthanasia. Firm checks need to be in place to make sure that people are not pressurised into ending their lives. But for those who need the option and are able to make the decision themselves, like my godfather, a dignified death offers real hope. His life, his choice. He lived and died on his own terms and would that we should all be so fortunate.
Originally published at www.contributoria.com.
