A careful death
Euthanasia is one of the most painful ethical issues. A moving report by Dinyar Godrej from the Netherlands.
'My patients can be sure that I will not let them suffer unnecessarily alone. That is my goal and duty as a physician.'
I am talking to Dr Gerrit Kimsma, a general practitioner and philosopher who teaches medical ethics at the Free University of Amsterdam. In his 20 years of practice he has had to perform euthanasia six times. This man, who insists that he can provide euthanasia only if he feels he can handle it psychologically, couldn't be further from the Dr Death figure familiar from tabloid headlines.
'Having the option of euthanasia makes it possible to concentrate not on the anxieties of suffering but on what people really want to do before they are going to die - like reconciliation with family members, saying their goodbyes,making a last trip downtown or out of the country. It really takes care of the burden of potential suffering that hovers over their head like a shadow.'
Frequently patients whose doctors have agreed upon euthanasia gain such peace of mind that they die natural deaths after all. 'Euthanasia is not just about ending someone's life, but about how a life ends, and how well-prepared the family members are to resolve their grieving process and the conflicts they are going through during that process. The real frame of reference for me is not the discontinuity of life, but the continuity of life.'
He stresses he can only continue performing euthanasia 'because it occurs very sparingly. Because it is very unnatural. As a human being you are taught not to end the lives of others and as a physician my goal is to help people. So from a moral and professional point of view I am convinced that euthanasia is a good thing. But from an emotional and psychological point of view it is also very contradictory - there is a conflict of duties between my profession's goals of conserving life and preventing suffering.'
It is just such a conflict of duties which provides the legal defence for euthanasia in the Netherlands. Though euthanasia and physician-assisted suicide remain illegal and punishable by law, doctors aren't prosecuted if they follow established guidelines. These include a persistent, informed and voluntary request by the patient who is aware of all the treatment alternatives, the presence of relentless suffering, and an independent medical appraisal by at least one other physician supporting the decision. After euthanasia is performed the doctor must fill in an exhaustive questionnaire and inform the coroner who visits to view the body and verify the facts. Then the Ministry of Justice decides whether to prosecute or not. The degree of caution this demands is unlikely to make it a murderer's charter.
High taxes and a strong welfare system means that everyone in the Netherlands qualifies equally for palliative care regardless of the cost. Euthanasia is not 'instead of' palliative care but despite it, when it proves futile. The Dutch tradition of the huisarts (literally 'house doctor') ensures that needy patients get frequent home visits, and trust between doctor and patient is reflected by the virtual absence of malpractice suits. Dr Kimsma pays daily visits to patients in the last stages of their lives at home - where the majority of people choose to die in the Netherlands - and pain relief and treatment options are continually discussed and reviewed. 'If I ever ended the life of a patient because I had performed inadequately in the area of palliative medicine, I would feel guilty and ashamed.'
Death in our age can come too late. At times the prolongation of life seems more like the prolongation of death. And no amount of technological sophistication can disguise the fact that some people still face horrible deaths.
In fact the Dutch euthanasia guidelines evolved after a doctor gave her mother, who was in unceasing pain in a nursing home and begging for death, a fatal injection of morphine. The case came to trial in 1973 and despite support from local physicians, the people of her village and ten Mennonite ministers,the court had no legal option but to find her guilty. She received a suspended sentence of a week's imprisonment. Desperate relatives and physicians in similar situations around the world are forced to take matters into their own hands and face the consequences. Euthanasia is practised covertly by doctors everywhere;in recent studies, one in eight Australian doctors admitted to performing it,and 18 per cent of Catholic doctors in the US provided it on request.
In the Netherlands, more than 20 years on, the issue of euthanasia is under constant public scrutiny. It dominates practical medical ethics. Attempts to improve the law make headlines and the moral issues are actively debated, even though public support is strong for voluntary euthanasia. The essential premise that euthanasia can only be carried out for the sake of the person who dies is written in stone.
Public concern is highest regarding the 950 cases per year of euthanasia where there was no explicit request by the patient or where such a request wasn't possible. Doctors are afraid to report these cases even though they claim that in 91 per cent of them life was shortened by no more than a week. But in a society which prizes personal autonomy and openness such cases sting. However,with no figures available from other countries where involuntary euthanasia also occurs, comparisons are impossible.
The Netherlands does not use the pointless term 'passive euthanasia' for deaths caused by stopping extraordinary medical treatment. In many cases these deaths can be less than happy - for example,taking someone off a ventilator means asphyxiating them - and more active interventions would be preferable. The question of ending the lives of severely damaged new-borns divides doctors and parents here as much as anywhere else.
None of this detracts from the case for voluntary euthanasia, which rests upon an assertion that ultimate moral authority rests within oneself. Being able to choose a dignified exit is the opposite of devaluing life, it is an assertion of its worth. Euthanasia is never an easy process. It is a severe test of selflessness for doctors and close relatives; they must face pain in order to ensure that the suffering of the person who dies is ended peacefully. Dr Kimsma believes it should hurt for physicians and social anxiety about it should remain, so that it never becomes routine.
Rob Niessink, a Dutch Formula 3 motor racing team manager, whom I meet to talk about his partner José, agrees. He believes the process of checking and counter-checking they underwent was absolutely essential. This is his story.
'José was diabetic from the first year of her life. Even though she had the worst possible form of it, she was very strict with her diet and could manage it quite well with insulin injections.
'She was 15 and I was 18 when we first met, volunteering for a programme that organized holidays for poor people. We went steady for three months and then split up. Just kids, you know. Her parents weren't too keen about my lifestyle then. Now, after what happened, we are very close.
'We met a few years later and fell in love again, ending up living together for about seven-and-a-half years. As I was out a lot due to racing, we split up again. But we kept in very close contact almost like sister and brother, asking each other's opinion about other people we met.
'It took two years for us to realize it was better to live together because we were too much in love. We decided to get married in August 1992 - something we normally didn't see the point of - to underline our choice and how sure we were of each other.
'At the end of the year we were having dinner with some friends and José started to throw up. It looked like food poisoning, so halfway through the evening we went home. She got into bed and more or less never came out again.'
It was the beginning of a harrowing sickness that was to prove untreatable. At first their doctor thought it might be stress or pregnancy or linked to her blood-sugar levels. But as she kept vomiting anything she ate or drank, a series of hospitalizations began. She spent a total of seven months in hospitals over six stays. Her weight, normally around 70 kilos, kept dropping dramatically.(She was 42 kilos when she died in May 1994.) Finally an internal examination revealed that due to nerve damage caused by diabetes her stomach had all but stopped contracting. When she ate, digestive juices would be produced but no movement in the stomach. The food would begin to rot and she would throw up.
The doctors had no answers. José took part in a drug trial, tried alternative therapies and nasal feeding, Rob rang every specialist and academic hospital, and even foreign embassies to get contacts.
'Because you are desperate, you think this can't happen. When she died she was 30 years old. You see on television incredible operations being performed and you think this can't be true. They put a new heart into people, a new kidney or whatever and my wife's gonna die! You are so messed up, you want to find the one person, the only person who can help.'
José eventually underwent an operation by which a tube was inserted in her intestine and she had to feed herself with a pump and liquid food. But food from the intestine would seep back into her stomach and the vomiting continued, with José unable to keep down even a few sips of water.
'She tried talking about euthanasia about six months before it was actually done. In the beginning I thought, well this is too early. You shouldn't give up- try to fight. Which was of course easy for me to say. But she realized that it was very heavy for me and her parents to cope with the fact that she wanted to end her life.'
The turning point came when her specialist had no more alternatives to offer. Unable to handle her request for euthanasia, he urged her to try anti-depressant medication even though she wasn't clinically depressed. 'When we went back home I said: "What you must realize is that euthanasia is the point of no return. I'm not sure I can manage if I think we haven't tried it all, up to the last possible treatment." So we discussed it with her parents and she said: "For sure I don't believe in it but I'll try the medication." Looking back I think she did it just to convince us.'
The pills left her groggy and unresponsive and it soon became clear they were not helping. That's when their local doctor, who was a frequent visitor and whom Rob describes as 'absolutely ace', said he was willing to consider performing euthanasia.
'Funny as it may sound it was a kind of relief, because José felt she had to prove to all the world how sick she really was and that it wasn't a game. She was happy with the fact that somebody had at last told her he would help her when the time came. Then she said: "OK I'll work up to it." We discussed it very frequently, almost constantly, with family as well. We both cried buckets-full of tears. We had a very open and honest relationship and when she got sick we fought it like hell together. But in the last few months the relationship went sky high emotionally. It's amazing how far it can get.'
Their doctor consulted his colleagues, the doctor appointed by the justice department for such cases, and an independent doctor who gave a second opinion.A psychiatrist had to attest to her mental clarity. They had to wait four months due to unforeseen delays, which completed their acceptance.
When the time came José had made all her final decisions and planned her funeral service. The euthanasia was arranged for 8.00 pm on a Monday.
'José was amazingly cool. She was releasing her control over life, releasing people and attachments. On Saturday she had the last visit from her parents and on Sunday and Monday we were just the two of us. On Monday she rang up a few people just to make sure that she heard their voices. She dressed up the way she wanted to be cremated and did her hair. We sat and watched a few U2 videos - her favourite group - and smoked a few cigarettes.
'I asked her: "How does it feel when you know you are going to die." Because you actually look at the clock and think: my life ends in eight hours.Is it possible that a mind can handle such a thing. "The question is: do you still fully agree that you want it to be done?"; And she said: "It's very restful, it's very peaceful. I can't give you the answer, but it's a good feeling. I did my trip, I fought my fight."
'Around eight o'clock she said: "Well, I think I want a coffee because it won't come out now." She was on the couch with her coffee and cigarettes when the doctors came. Our doctor said he expected to enter a room full of emotions and sadness with family crying. He said the obvious acceptance and serenity actually made it easier for him.
'After the doctors finally checked there were no doubts, she said: "Well, I'm ready."'
Then Rob and José spent a few moments alone. 'What do you say? "Thanks alot, have good trip." But much more personally. I had to cry a lot. That was the strange thing, she comforted me. She said: "It's going to be alright."'
Finally they called the doctors and with Rob holding her hand she was given a narcotic to make her sleepy and then the fatal drug.
'Life continues but everybody has their own little voice and José is part of mine. She agreed to watch over me and I still think of her every day. She is there in very simple things like the furniture.'
Looking at the large, slightly grumpy-looking teddy bear that sits at the dining table Rob says: 'When she was very sick and in hospital at one stage I bought the bear for her because she had seen it downstairs in the shop. I'll never give it away.'
Rob remains convinced that José's decision was sound and came at the right time, before organ failure increased her suffering. Her illness and death has been an education in feeling for him, because in their struggle the frames of reference fell apart and feeling was all they had to act upon. Now that he is back in the rational, competitive world of motor sport, he finds he has to work to keep it alive.
It's late and 12 degrees below freezing when he drives me to the train station. I am lost for words to thank him for what he has shared. 'Have a good life,' he says. I know that he means it.
Dinyar Godrej, a former NI editor, lives in Rotterdam.