This is the story of my role in the death of a friend, and of the painful issues of dignity, autonomy and privacy that we encountered along the way.
It’s a story that needs to be told, even though any form of assisted suicide is a deeply controversial. These are difficult issues that are central to the intimate privacy of many people in distress. The friends and family of those people should be prepared to deal with such issues – not run away in terror.
For the moment, Rafael was still functional and sentient but no matter what path the future took it would have led to an undignified and awful death.
I had known Rafael for much of my early life. He was not my closest friend or even my closest colleague, but we were constant and trusting over many years. We’d done mad things together for much of that time: working in rubbish-tip villages in the Philippines, organising street demonstrations in Thailand and being stupidly provocative to police in the US. Those were good times.
Now he told me the brain cancer was terminal and inoperable. Cognitive functioning was impaired and each day brought new challenges. Add to this a raft of serious financial concerns and Rafael had made a calculated decision that it was time to die.
From any rational point of view this appeared to be a valid choice. For the moment, Rafael was still functional and sentient but no matter what path the future took it would have led to an undignified and awful death. The moral question was whether he should decide on the time and manner of his own passing, rather than dragging the process out in a state of escalating pain and distress.
Rafael was older than I – around sixty at the end. He was married (recently separated) to a remarkable woman who was still a great support even after she had remarried. They had two daughters who seemed to have a solid and healthy relationship with their parents. Both girls had families and professions and were doing well.
He was a gentle man by nature, though fiercely passionate and angry when he saw injustice. Intelligent and creative, he caused a lot of grief for authority. Rafael was a great support for my own work and had always done whatever he could to make the world a better place. While I was focused on building the emerging privacy movement, he was raising hell on issues of poverty and discrimination. However our paths crossed many times.
Rafael had spoken to a couple of friends and, predictably, they went to pieces and tried to talk him out of it. In some bizarre way they saw his intent as a betrayal.
Needless to say, Rafael’s suicide plan hit a brick wall regarding his family. How does a dad tell his kids that he intends to end his life? For that matter, how does anyone tell close friends and family? Rafael had spoken to a couple of friends and, predictably, they went to pieces and tried to talk him out of it. In some bizarre way they saw his intent as a betrayal.
Many readers will have encountered others who have expressed an interest in suicide. The instinct is to talk them out of it – to argue that in the clear light of morning things will be better. But what of a situation when you both know that the clear light of day will bring deeper troubles? There is no hope, just a downward path that leads to a terrible end.
We sat and talked all night over cups of tea, agreeing that the whisky would be opened only after we had shaken hands on a way forward. Rafael was exhibiting positive behaviour. He said he’d gone through two months of emotional turmoil and achieved acceptance of death only when he realised that he could have control over its manner.
Precisely how he was to die was a matter that we agreed should be discussed after everything else had been worked out. Secretly I hoped he wouldn’t go through with this scheme, and I planned all sorts of disruptive points of view to achieve that end. However I finally realised that he had arrived at this decision as a rational being who had worked through all the choices and consequences. My role, clearly, was to be supportive when nobody else could be supportive. Easier said than done.
There were many ethical considerations that went beyond the law. In less than two weeks this man would be a corpse, and by helping him with basic emotional support – and not calling in the authorities – I was assuming a great deal. I’ve spoken with others who have been in such a position, and they all report an eerie dread and a sense of impossible confusion over the ethics of the situation.
The second task was figuring out a farewell note. Going through this process was an important element of ensuring that he was doing the right thing.
We drew up a list. First item: the children. Rafael needed to know there was someone who would act as his ambassador in death to help the kids through this – to help them understand. Frankly, everything else fell a distant second. We both knew I would become the enemy, with accusations of “why didn’t you call the authorities?” I would be despised.
The second task was figuring out a farewell note. Going through this process was an important element of ensuring that he was doing the right thing. That took us around four hours to complete and involved the expression of much regret, but also a lot of celebration and joy. Only then he he start crying.
“It’s been a real life hasn’t it. Never a moment’s peace, but filled with amazing moments. I spent it well.”
There were many practical considerations. Rafael wanted a seamless end, so that meant sorting out legal and financial issues, closing off accounts, sending various letters and emails, figuring out a place to die. He had choice words to say to some government agencies.
And finally, the manner of death. His decision: starvation and dehydration. Natural, uncomplicated, certain and relatively risk-free. Approximately nine days and then the major organs start shutting down, usually resulting in heart failure. Only basic medical supplies were required such as mild sedatives, moisturiser and lip balm.
And that was it. We enjoyed a final whisky, hugged and exchanged some surprisingly banal final words. He had work to do, and so did I. It was all scarily logistical.
And finally, the manner of death. His decision: starvation and dehydration. Natural, uncomplicated, certain and relatively risk-free.
I learned a few weeks later that Rafael had passed on in the precise way he had intended. There was no indication of distress. It was only then that I gave myself licence to weep.
In some respects this is a dangerous blog to write. My friend had completed suicide, and my role could be viewed in some countries as an unlawful act of assistance (assisted suicide, for clarity, is not the same as euthanasia, which involves actual enabling of the death).
The moral choices that my friend and I had to make would be alien to anyone who hasn’t suffered the misfortune of facing them. It’s not a simple matter of condemning the process we went through as “illegal” or “wrong”. The boundaries are indistinct. Did I “assist” Rafael’s suicide, or did I “support” him? Surely no law on the face of the earth should prevent support. And yet, even in more enlightened countries where assisted suicide is lawful, such definitions are disputed. Support could, for example, be construed as incitement, while helping him plan the deed could be seen as complicity. In some countries failing to act to prevent a suicide may be defined as Homicide by Omission.
Medical authorities in most countries are of little help in such circumstances. Understandably (at some levels) they would reluctantly prefer to see a person become an incapacitated drooling wreck rather than sign off on the person ending life with dignity. Stock phrases used by doctors include “there is always hope” and “a successful treatment could be around the corner” – groundless hype in my friend’s condition.
Medical authorities in most countries are of little help in such circumstances. Understandably (at some levels) they would reluctantly prefer to see a person become an incapacitated drooling wreck rather than sign off on the person ending life with dignity.
This is privacy at its most intense and at its most intimate level. In some respects there’s a parallel to the United States Supreme Court case Roe v Wade, which ruled on a woman’s right to an abortion. This decision created a key element of modern privacy law. The court agreed there was a privacy right to permit abortion, but that this must be balanced against an obligation on the state to protect life and well-being. In the same manner, some countries such as Switzerland, Belgium and the Netherlands have legislated for a fundamental right of a person to decide her own fate, but that the state must exercise a duty of care.
Why this matter is so deeply personal to me is that at a moment when Rafael should have been focused on his own life and family, he was forced to obsess over my own legal position. Rather than concentrating on his own options he was preoccupied with making sure I was protected. That meant, for example, that I couldn’t stay with him throughout the suicide process. He died alone.
There is something about a clinical, calculated plan to die that scares many people. It is seen as a far more significant issue than a spontaneous suicide brought about through despair or depression. Such calculated behaviour could have a contagion effect on others.
As Rafael had observed in our time together, we all do our utmost to avoid thinking about our mortality. We cram our lives with “stuff” so it never surfaces, apart from momentary decisions about funeral plans. The idea that there are people who would take that path is unsettling. That’s why few people will read Rafael’s story. There are rare cases where people have publicly discussed such situations, but they are distressing at so many levels.
Rafael’s actions certainly had that effect on me. I’ve decided that should I ever fall victim to debilitating illness, terminal disease or indefinite incarceration I too will end my life in the way Rafael did.
This is not a unusual decision. More than a thousand people have ended their lives in Swiss suicide clinics, and not all because of terminal illness. Some made the decision because they were weary of life.
There is however a long road to travel before the majority of countries come to terms with their hysteria and deal with the practicalities and the morality of assisted suicide. Until then, many people in Rafael’s situation will continue to suffer more than they should.