And then I had unmistakably changed into an old and experienced doctor. Looking back over thirty years of geriatric medicine, I would like to steer away from any pronouncements on the wonderful progress we have made in fighting this, that, and the other. The mortality rate of human beings is still 100% and we may hope it stays that way. Gerontologists who are looking for ways to make us die at a much later age only add years to what I find the least attractive stage of human life, the years beyond ninety. To such progress my answer is: thank you, but no. Call again when you can make me carry on being forty for forty years, which is an incomprehensible desire, so let’s forget it.
There is one aspect of medical practice where I’ve noticed only the slightest progression in the past thirty years; I mean the way doctors behave around dying patients. More specifically, the way doctors deal, or refuse to do just that, with euthanasia on the one hand and dying patients in general.
First, the scary subject of euthanasia. To avoid any misunderstanding: euthanasia, as I am defining it, is the handing or administering of a fatal overdose to a patient by a doctor on the patient’s request. This includes Physician Assisted Suicide. We shall not here go into all the terms and conditions attached to such an act here in the Netherlands. Suffice it to say that it is quite a procedure and not something that is arranged overnight or on the whim of a patient or a doctor. In the United States, the administering of a lethal medication by a doctor is never allowed, but under certain conditions Physician Assisted Suicide is allowed in five statesOregon, California, Washington, Maine, and New Mexico and may be on its way to legal status in Vermont.
It is often said that it takes courage to perform euthanasia, and a colleague described to me the other day why he finds it so difficult: “It feels somehow as if the very foundation of my existence is being undermined. The thought of it causes an experience of vertigo. A request almost seems to set me dangling above an abyss.”
I find this a very convincing description, because that is precisely what we feel when faced with the possibility of a predetermined, explicitly arranged death. It is a fearful business, but I don’t quite understand what it is we are so afraid of. Being courageous means that you realize the danger of a situation. A puppy trying to play with a lion is not courageous; the poor thing doesn’t see the danger. In Melville’s Moby Dick, the whalers descend into a tiny boat to approach the whale, a risky undertaking which took courage and skill. That is why the first mate, Starbuck, tells his crew: “I will have no man in my boat who is not afraid of a whale.”
It is precisely this fearful awareness that is necessary in medical practice, where many situations harbor terrible risks. But the doctor’s fear of euthanasia doesn’t fit into this scheme of knowing the dangers. In the case of euthanasia, it seems that the doctor is as worried about its going wrong as he is about its being successful.
Yes, you wouldn’t think it, but euthanasia too can go wrong. Your IV can turn out to be blocked, or the injected drugs could end up subcutaneously instead of in the bloodstream, or the patient can get a coughing fit while trying to drink the medication, or one of the bystanders might faint at the critical moment.
But behind the faltering IV, the fainting bystanders, and the coughing fits there lurks another fear, a deeper anxiety. It is not the fear of the justice department or the police or the law in any guise. Even if the act of supplying or administering an overdose has been approved in advance by all the authorities, then still the act remains as fearful as ever. This deeper fear has to do with the incomprehensible enormity of an explicitly planned death.
And that is such an enormity because of the absolute irreversibility of the procedure. After every other medical intervention, there is always the possibility of communicating with the patient. But not after euthanasia.
Even when the wrong leg has been amputated or the healthy kidney removed, there is the possibility afterwards to talk with your patient so that you can admit to having caused a disaster which obviously you never intended.
Euthanasia is different. You did cause a disaster, the patient died, and that is what the patient wanted. But did he? What I experience as one of the most unbearable aspects of euthanasia is the fact that there’s no meaningful assessment possible with the departed. Well, maybe there is that possibility when, against all odds, you saunter into heaven after your death. But I am not counting on anything in that direction.
I think that much of our mental, philosophical, ethical, and legal wrestling with euthanasia stems from the fact that you can only do it once. There is no way back. You cannot retrace your steps. It is, in Philip Larkin’s phrase, The anaesthetic from which none come round.
We’re talking plain old fear of death.
There are many lessons here, but for now I would point out but one: a doctor should never have to go it alone in this area. When a doctor has never been involved in such a process before, he should look for an older colleague to guide and support him, or search out a kindred medical soul to share his fear of this mission. Because the vertigo, the unfathomable depth I spoke of, is a dreadful experience. As a doctor performing euthanasia, you are moving dangerously close to the edge of the abyss of oblivion. You are actually helping a person to climb over that fateful ridge in order to leave humanity forever.
The unsettling knowledge that one day we ourselves will also vanish into the void weighs heavily on all our maneuvering in the area of self-willed dying. Doctors who don’t find euthanasia upsetting don’t seem to realize just what is at stake. I prefer doctors who find it hard to overcome their deep reluctance.
And doctors who will never do it, because of all the reasons summed up here, have my sympathyas long as they don’t think that doctors who do perform euthanasia have an easy time of it.
So much for our fears around euthanasia. Luckily it is a rare occurrence, and I am more worried about a much more widespread fear which is a hindrance when it comes to proper palliative care. Death and the doctor form an inseparable duo. (Though most doctors carefully avoid even the most perfunctory acknowledgment of his ubiquitous presence.) Virginia Woolf wrote, “Death and death again, woven into the violets.” But he is not only botanically busy, he is woven into our very tissues.
In the lives of all patients there comes a day when you’d better let Death in when he knocks, since if you do not let him in through the door he is quite capable of removing the front of the buildingbecause inside is where he will end up, whatever you do.
Palliative care is that largely unwritten chapter of medicine in which we try to teach ourselves how to guide our patients in a gentle and gracious manner towards the end of their journey. I speak of a largely unwritten chapter because in modern-day medicine there is a very harmful divide between curative medicine and palliative care. Remember that if you want to die in an acceptable manner, you have to actually try to escape from the hospital to a hospice.
This is not just embarrassing, it is scandalous. However, raising the intensity of description will not alter the circumstances. Therefore I will try to be more specific.
Young doctors find it very difficult, not to say impossible, to organize a humane deathbed. They feel as if they are being asked to arrange a fatal accident. They are scared of giving sufficient amounts of painkillers because they think they might be hastening death, or even causing it.
Last year my oldest sister, seventy-nine years old, died of cardiac failure. She was prescribed 2.5 mg of morphine every six hours in case of discomfort. This meant that the duty nurse had to decide whether she needed morphine. The nurse wasn’t going to make any decision on that point, and my sister was deeply uncomfortable, the more so because she slipped into a classic terminal delirium. I had to move heaven and earth in order to have her looked after properly, which ruined the last night I spent by her side. Instead of just sitting there and sharing her misery as a brother, I was out in the corridor arguing with panicky colleagues who labored under that fatal combination of fear and ignorance.
You might think this is exceptional, but I’m afraid it is not. The other day I was called by a friend who was in despair at the bedside of his dying father-in-law, a man of eighty-six years who had been felled by a severe stroke. There was really only one thing to be hoped for and that was that he would succumb instead of regaining consciousness in a horribly debilitating state. So they urged the neurologists not to do anything: no food, no intravenous fluids, no treatment that would prolong life.
A feasible proposition, you might think, but then you underestimate the rigidity with which people cling to a protocol under such circumstances. A bitter confrontation ensued between the family and the doctors, during which the doctors sank so low as to exclaim, “But if you don’t want any treatment for your father, then why did you come to the hospital in the first place?”
The children prevailed in the end, but now they sailed into new trouble. My friend called me and said, “They aren’t giving him sufficient painkillers. He is fidgety, restless, mumbles all kinds of things and is at times fighting for breath.”
It turned out they gave him 5 mg of morphine every four hours, a bit more than was given to my sister, but apparently not enough.
I told my friend that he was probably dealing with a very young or a very religious doctor. Protestants think one shouldn’t overdo the alleviation of suffering. God doesn’t like it; even when you are dying you are not meant to have a good time. The underlying motto is: suffering is part of living. The very young doctor is quite as bad, but for a different reason. He is afraid that the patient might die a couple of minutes sooneror hours even, or maybe a whole daydue to the morphine.
I advised my friend to opt for 10 mg of morphine every four hours, but between you and me, my personal preference is 20 mg. And the underlying motto here is that life is bad enough as it is, there’s no need to make it worse.
Bert Keizer studied philosophy in England and medicine in Holland. He is the author of Dancing with Mr D., among other works, and has translated Emily Dickinson's letters into Dutch.