`decent death’
What do you do when a patient asks for `help at the end’? Bert Keizer gives his response
THERE has always been a mad fringe around the euthanasia debate, which could make you forget that behind all the nonsense there must be the possibility of a sensible conversation about the subject.
About a year ago, I was interviewed for a BBC Radio 4 religious programme. While talking, we strolled around the nursing home where I work in Amsterdam. The reporter was favourably impressed by the level of care, the dedication of the staff, the facilities offered to the patients. He asked me: “It seems to me that the people here are being cared for in an exemplary fashion: now isn’t that a contradiction of your euthanasia policy?”
I was stunned. What did he expect? That I was going to show him a gas chamber in the basement? There’s always a whiff of Auschwitz in the air when certain questions are raised about euthanasia. Later, as we were walking down a staircase, he asked: “Just when, if you could date such an event, would you say that you left religion behind you?”
“Well, Trevor, it was seven minutes after my first erection. No sooner did my libido rear its tiny little head, than God dashed from the premises. Striking, ain’t it?”
Now he was stunned and almost fell down the stairs laughing. But said: “I’m sorry, but I can’t leave that in. This is a religious programme, you know.”
I know. But the preposterous suggestion that in Holland doctors are killing their patients could stay in.
Let’s move beyond the nonsense and try to get a glimpse of death and dying. One of the problems surrounding death is that so few of us have any clear idea about it. I don’t mean that we don’t have any clear (or foggy) ideas about being dead, but most of us have no idea of what dying is like. We are in a comparable position on the subject of birth; most of us nowadays attend only two or three deliveries during a lifetime, either as onlooker or main performer, but always in a pent-up emotional state that hardly predisposes to quiet observation.
The same goes for deathbeds: the average late-20th century European doesn’t attend enough deathbeds to arrive at any sort of appraisal of the process of dying. Death on screen is always a very obvious business: either abrupt and violent, or preceded by a sweet preamble in which the dying woman goes through a bout of restlessness, sends one more piercing glance to the world, utters a grammatically correct sentence, neatly closes her eyes and places a full- stop at the end of her life.
This is so grossly beside the truth that it is not even wrong. Most people die unknowingly. At the end, we slip into unconsciousness all unawares, in precisely the way we fall asleep. People usually look on death as the one last horrible task they have to perform at the end of what has often been a pretty heavy and difficult journey. Usually it is nothing of the sort.
What I am saying does not imply anything about the nature of being dead, or about where we go when we are dead. I am only trying to say that, in most cases, dying can hardly be described as a horrible event for the person in question.
This means that requests for euthanasia or physician-assisted suicide are often based on groundless fears and can almost always be answered by a sincere promise to alleviate suffering in the last stages of a disease. By “euthanasia” I mean physician- assisted suicide, and not any of the other palliative measures taken to alleviate suffering. May I describe one case to show you what those last stages of a disease can be like?
I had known Horace D for several years when he was diagnosed as having lung cancer. He was then aged 78. Immediately I told him the diagnosis, he asked me: “Will you help me at the end?”
Without a moment’s thought I said, yes, of course I’ll help you, don’t worry. A few weeks later, he reminded me once more of my promise. He was afraid, not of death, or even of dying, just afraid. I wondered if he worried about what might befall him after death. No, it wasn’t that, “because I don’t believe in anything”, was his disarming comment. He was losing weight at an appalling rate; he always felt exhausted and had no appetite. When he looked in the mirror he was frightened, he was so ill and pale and worn out. Again he asked me: “You’re not letting me down, are you?”
“Of course not,” was my glib but rather meaningless reply. This was in 1984, and it was the first time that I was face to face, inescapably, with a request for death. I didn’t have a clue what to do.
Horace’s grand-daughter telephoned one day and asked what exactly I had promised her grandfather. “Well, I said I wouldn’t let him down.” She suggested we stop going round in circles and face the issue. “My grandfather wants you to help him die. And he wants it soon. He’s been asking long enough.”
Now she really got me scared. It’s true I had promised, more or less, but I didn’t know how to do it. In the first place I didn’t know what medication I should use, and I was afraid to ask my colleagues, who I knew were opposed to euthanasia. They wondered if he was really suffering. I wondered why Horace had to get to the stage of abject misery before we took his request seriously.
Another week went by in which I kept wavering, and avoided Horace. I had it out with my colleagues once again. They told me to procrastinate, put it off indefinitely. The underlying thought was: he’ll die anyway, without you getting into trouble.
They suggested I should try to make him feel better by giving him steroids. This was precisely the dose of cynicism and duplicity I needed to make up my mind, and I went straight to Horace to tell him I was ready when he was. He was pleased, and asked who should be present.
“Well, don’t look at me,” I said, “it’s your death.”
When I came into his room on the appointed evening he was sitting on the bed with his two sons. They embraced for a last time and said farewell. I was very shaky, and as I gave him the injection, he said: “Thank you for doing this. Don’t be scared, will you? It’s all right.”
Then he lost consciousness and we laid him on the bed. After 45 minutes, he was dead.
Horace’s case is not untypical. The patient is insistent, because he knows that time is running out. The patient is asking for death, not the doctor offering it. On the contrary, the doctor is scared, and tries to avoid the whole situation, or clutches at steroids.
There are always, and will always be, people like Horace, asking for death, and not for palliation, in the last stages of their lives. They do not want to linger on.
There will always be doctors who want to help their patients in these circumstances. It is of the greatest importance to regulate this kind of help, because you wouldn’t believe the messing around in situations where these things are not above board. To mention some aspects: most doctors do not know what medication to use.
Furthermore, the need for secrecy inevitably leads to shoddy performance. The doctor will spend more energy trying to cover his tracks than helping the patient die in a decent manner. He might avoid being there in person when the patient dies. But his presence is vital at such a difficult time.
Opponents suggest that anyone asking for death is disturbed or depressed, and therefore needs treatment instead of an overdose. I cannot answer this, because it is the perfect Catch-22 clause: asking for death is taken as a proof that you cannot ask for death. Horace was not disturbed; he was depressed, but not within the Prozac range.
Now for the slippery slope arguments. There are two. The first is the danger that more and more sufferers will consider themselves eligible for such assistance. Quite right. Holland is a classic example of this: as the debate goes on, more and more categories apply the rules to themselves. So we move from the terminally ill, to people with disabling chronic disease, to a psychiatric patient who wants to be helped.
In all these cases, the same criteria should apply: unbearable suffering, a persistent death wish, no chance of recovery, a second opinion, no treatable psychiatric condition, and a truthful report to the coroner.
The other is that if you’ve been involved once, the next time you’ll be much less thoughtful. And after 10 cases, you’ll be doling out lethal doses over the phone.
In the foreign press, I read reports of an extraordinary number of eager killers among my esteemed Dutch colleagues. I have never met any, nor do patients know where to find them – a recent survey by the Dutch Voluntary Euthanasia Society reported that it is not easy to find a doctor willing to consider a request for death.
I know how much fear and trembling a
doctor goes through to help a patient reach a decent end, I tend to recoil. I cannot think of any colleague who would rather face a request for death than one for an appendectomy.
Bert Keizer is the author of Dancing with Mr D (Bantam), a book about his experiences in a Dutch hospice. In Holland, doctors who follow careful guidelines may grant their patients’ death wishes