On Euthanasia: a family guide.

Just before Christmas in 2008, my brother Edzer Onsman, known as Eddie, chose to be euthanased because his body was so racked with pain that he had to drink liquid morphine just to get through the day. He was no longer in any condition to live and there was no hope that the tumours growing in his brain could be removed. When he died, there were no angels crowding around the sterile bed on the third floor of the hospice where he lay clear-eyed, and the kiss from God came through a sterilised hypodermic needle inserted by the sure hand of the doctor. She knew what she was doing. So did he.

There is a specific expectation about how a man should behave as his brother is dying. The Bible describes the ideal in the story of two of the most venerated brothers in all Levantine religions: Moses and Aaron. Moses represents truth and righteousness whilst Aaron represented mercy and peace. Moses took on the leadership role while Aaron became the high priest. To Moses God gave the Ten Commandments, the rules, the dos and don’ts but to Aaron He gave the eternal flame. Each was immensely proud of the other and in Psalms 133.1 it is written: “Behold how good and how pleasant it is for brethren to dwell together in unity!” Together they were the earthly manifestation of what brotherhood can be. As a reward for a pious and peaceful life, Aaron’s death was tranquil. Led onto Mount Horeb by Moses, Aaron lay down willingly on a bed surrounded by angels. And then his soul departed as if by a kiss from God. Moses comforted his dying brother and the comforting was good for both.

Neither my brother nor I have ever accepted the Bible as a blueprint for life, and neither of us wants that degree of fraternal involvement in our dying. But while I do not expect angels around my deathbed either, I am quite taken with the idea of a tranquil death. It may be that making the decision to die is easier if you have no one else to be responsible for and no one to answer to. It may be that death is easier to handle on your own, that not having to worry about anyone else’s reactions to your demise would be enough to make you choose to die alone with dignity and control. On the other hand, having close friends and relatives go through it with you, allowing them to sit by your bed and to hold your hand during the vigil; giving them a chance to feel as if they are doing something supportive as well as allowing them to keen at your passing, may be the ultimate act of kindness to your nearest and dearest. Perhaps it allows them to feel part of the whole dying process.

I first learnt of my brother’s illness a decade earlier via an email I received in response to one I sent telling him I was about to visit him in the small village near Amsterdam where he lived and worked as a chef. Never one for dwelling on details, he mentioned in passing that he’d had a tumour removed from his throat, an operation that had cost him his beard, his teeth, “plus a couple of other odds and ends, like most of my sense of taste and smell, plus the ability to eat fairly solid food”. Not good news if you are a chef; worse if you’re his customer.

Cancer of the throat is one the most virulent forms of the blooms that exists. People who were inflicted with it have tried everything from chemo to mystical alternatives to overcome it but nearly all cures quickly prove to be useless. Once cancer gets into the throat it usually means you are going to die fairly quickly. In fact, when my brother was diagnosed he was allocated a support group of six other sufferers. Five of them died within the year. One other hung on for a full twelve months and then he too died. The chance of survival is somewhere in the region of the odds of winning the lottery.

I was convinced that by the time I got to Amsterdam, he would either be dead or wasting away in a bed in a hospice somewhere. I assumed that without his senses of taste and smell he would no longer be able to work as a chef and that the restaurant’s website information was out of date. I imagined that he was …

When I arrived, he came down from his flat above his place of employ, wearing his chef’s outfit.

“How are you going?” I asked him.

He mumbled something.

“What?”

More mumbles. I couldn’t understand a word he said.

“Talk slowly, for Christ’s sake. I can’t understand you.”

“Sorry,“ he said. “They cut half my tongue out and it keeps rolling around in my mouth when I talk.”

After a while I could understand most of what he was trying to say. He’d had the right half of his jaw removed. It was replaced by what looked like fifteen centimeters of motorcycle chain, which allowed him some movement. It didn’t improve his looks. I told him it was a good thing he’d never been good-looking because he was really pug ugly now. He laughed and said at least he had an excuse, but that I didn’t. Fair point.

He had smoked two packets of cigarettes a day for nearly forty years and only Keith Richards can do that without consequences. As a concession to the cancer, he had cut down to about ten a day; which sounds insane but may have been better than stopping completely because his body needed all it could muster to force it into some sort of balance, a homeostasis, which would allow him to go on living. Coping with the withdrawal of nicotine could actually kill him.

He had lost a lot of weight and his face was a mess. But he had survived, and I was glad that he had. To me at least he looked all right and we’d had a pretty good time during the visit. It was good that he still could cook and that he was doing so. It would have been understandable for him to give up but it would also have been the end of him. It was largely thanks to the owners of the restaurant who nursed him through the trauma and kept him on as chef that he kept working. All, it seemed, was well and we went back to living on opposite ends of the world.

Five years later the tumours came back with a vengeance. They had started to re-surface almost a year earlier but he hadn’t told me until I phoned to let him know I was on my way again, because he hadn’t thought it to be all that important. The conversation had been difficult because over the phone his speech impediments were much more of a barrier than when we talked face to face. I thought that he was telling me that the surgeons had given him until Christmas this year, when in fact he was telling me that they had given him until Christmas last year and that he had exceeded expectations already.

He was in a bad way physically because two very large tumours had developed: one in his brain and another in his throat. I shook his hand carefully, feeling the sparrow like fragility of his bones in my grip. Determined to show me that everything was under control, he insisted on going downstairs to the restaurant to get me a glass of beer. As he got up to go, I could see that his body looked like a Holocaust victim, just a bag of bones. His belt had extra holes punched into it, and his skin was white, almost translucent. Under the circumstance his determination to be a good host was telling and must have cost him a lot of energy. When he came back we sat on his couch and I prattled away. As I reached for my beer, he reached for a plastic ampoule of liquid morphine. He could barely drink the fluid, needing to twist his head to squirt it into his mouth. I knew what he was drinking because I read the labels on the box when he’d gone downstairs.

He was his usual reticent self, simply telling me the medical details without divulging anything personal but the physical and mental devastation was evident. Exploratory operations on his brain tumour had cut through some of the nerves on the left side of his face, making him look like he’d had a stroke. His left ear looked like it was held in place only by a large wad of bandages: it seemed to be hanging about five centimetres below his right ear. The surgeons had told him that it was inoperable – and if their exploration left that much of mess, I could understand why. The tumour in his throat was more or less a recurrence of the earlier cancer that he’d managed to keep at bay for almost a decade.

“I won’t make this Christmas. The tumours are too big now.” I had to concentrate hard to understand what he was saying. With a white handkerchief he wiped away the dribble spilling out of the corner of his mouth.

“Surely they can do something?” I was looking at him, trying to take as much in as I could, desperately looking for something to anchor this unimaginable situation to.

“Why should they? I don’t want to live any more. I’ve done everything I want to do, seen everything I want to see.” He looked at me defiantly, challenging me to argue. “It’s my choice!”

There was something underlying the adversarial tone. It was as if he was trying out an idea on me; listening to how it sounded and seeing how I’d react. With each declaration he grew more confident.“There’s no point living like this, is there?”

You can’t build a castle on a foundation of fighting dragons. One part of me wanted to shout that of course there is a fucking point: where there is life there is hope. The other part of me knew that there was no point if you needed to drink opiates all day long just to dull the pain. I didn’t say anything for a while because there was nothing I could say.

After that pause, I asked whether it hurt.

“No, not really,” he said. I looked at him and wondered if that was true. Was the analgesic cocktail really that effective?

The barmaid brought up another beer from the bar downstairs for me. I went to the toilet. When I got back he’d lit up. Not much point in stopping now, I suppose.

We chatted for an hour or so and I could see him getting increasingly tired. Wanting desperately to keep the visit normal even though it wasn’t, I used the excuse that I had to get back to the bus stop to continue on to Utrecht and from there to The Hague to stay with one of our aunts. He didn’t ask which one. As I got up I said that I’d see him next visit and that he’s have to keep in touch. He showed me that he had my address on his computer and he promised to mail.

We shook hands as I left.

Afterwards I was angry with myself for prattling on nervously. Despite the overwhelming evidence, I couldn’t really accept that he was dying but I sure as Hell could see the pain he was in. But still, I thought. He had defied all odds in the past and I was sure that he would again. I considered taking a photograph, as I had done every other visit, but didn’t. Maybe I didn’t want a record of a dying man.

Although it seemed it couldn’t possibly get much worse, over the next month his condition deteriorated. The oncologists had told him fifteen months earlier that he probably wouldn’t make Christmas that year. Now he told them that he definitely wouldn’t make it this year. After the due and lengthy consultation with both his GP and the specialists, he decided that 11.30 on Monday the 22nd of December was the most appropriate time to die. This was nothing I had ever encountered before; there was no reference, no anchor, no real understanding. And knew that there was no time for me to fly over, to be of some avail.

On the day I rang the hospice to see whether I could have a last word with him. A nurse answered and although it wasn’t allowed, she took the phone to where Eddie was. In the seconds of waiting to be connected my brain was exploding. What do you say to someone who is about to die? When that person has decided to die at exactly 12.30 pm and it is 11.00 now? When he is half a world away in a palliative care ward on the third floor of a large hospice and you are connected by the slender means of a telephone line and through the generosity of a nursing sister who is prepared to bend the rules a little? When he is your brother?

In the event, he didn’t want to talk to me. I could hear him in the background, saying that I wouldn’t be able to understand him. The nurse was apologetic but she didn’t need to be: he was probably right. I asked her to pass on that I wished him strength, and hung up.

For me, my night’s darkness here would pass and the light would re-appear tomorrow. I tried to grasp that for him the light would be extinguished forever. I don’t know how much strength he would need to let himself fall into a sleep from which he would never wake again, but I hope that he had enough. In the end it didn’t really matter that he didn’t want to talk – what was there to say? Letting him know that I cared was my assuagement.

A little time after my call, when a small knot of his closest friends, those who had supported him throughout, came to say goodbye, he was lying in bed looking at the images on the BBC news channel. He asked them to get out of the way of the television because “I’m watching that!” He seemed a little bit angry. After the farewells, they left.

Held up by the opiate drip stand that was connected to his arm by a thin clear plastic tube, he got up and shuffled across the spotlessly clean linoleum to the smoking room at the far end of the ward for a last cigarette. A frail bundle of bones in a bag of translucent skin, he would not allow the cigarettes to win.

He came back, lay down on the single bed in the pristine room and waited. There were just a few tears.

Twenty minutes later the doctor came in and he told her to prepare the needles; he would be ready when he got back from the toilet.

And when he got back, he was. First the doctor administered a relaxant, Pethidine or some such, and comfortably and calmly he went to sleep. Then the doctor injected a drug that stilled his heart and he had no more pain, no more pain greater than his capacity to bear it.

He was my brother, now unable to answer the questions that I had been unable to ask. Did he never waver? Not even at the very end – was he that sure, that strong? Euthanasia, like love, is a desire realised and maybe like love it is a desire you have to be consumed by to understand. Or maybe he didn’t really believe it was happening, that everything would be all right.

That is one way the brain can cope with comprehending its own non-existence during the dying process: assuming that in some way it will survive. Perhaps the prediction that we will awake is the mechanism that allows us to go to sleep. We assume, however, that we will wake up in more or less the same condition that we were in when we went to sleep. That assumption may be nothing more than wishful thinking when we go to sleep with the room spinning because we have had one too many brandies but in that case the alcohol befuddles the thinking. When we are drunk we seldom anticipate the aching head that being drunk inevitably causes because we are drunk. Such, to cite Ned Kelly, another who was about to die, is life.

The inspiration to countless Goths, Emos and other confused teenagers, the poetess of omnipresent death, Emily Dickinson, was pathologically obsessed by it. Indeed, much of her oeuvre was focused on it. She saw it as an ever-present shadow closing in, and spent much of her life waiting for the tap on her shoulder. She worried mostly about the process of dying:

After great pain a formal feeling comes–
The nerves sit ceremonious like tombs;
The stiff Heart questions –

We have no way of confirming that death does necessarily involve a great pain: well, not to the person who died, anyway. But we generally assume there will be some sort of affective trauma associated with it. In that case, surely it makes comforting sense to make use of an easier option, should that be available, when death is inevitable? The current champion of atheism, Richard Dawkins, argues in The God Delusion that euthanasia is an enlightened privilege not available to the majority:

When I am dying, I should like my life taken out under general anaesthetic, exactly as if it were a diseased appendix. But I shall not be allowed that privilege because I have the ill-luck to be born a member of Homo sapiens rather than, for example, Canis familiaris of Felis catus. At least, that will be the case unless I move to a more enlightened place like Switzerland, the Netherlands or Oregon. (p357)

The main commonality between Switzerland, the Netherlands and Oregon that serves as a defining characteristic of Dawkins’ idea of enlightenment is that the terminally ill there have the possibility of electing to end their lives at a time of their own choosing. But there is another commonality: all three are predominantly religious states. Dawkins acknowledges the point and asks whether there may be some connection. On the other hand he also suggests that the most religious are those who are the most fearful of death; a point also made by Julian Barnes’ insidiously elegant essay on death entitled Nothing To Be Frightened Of – albeit that Barnes makes the point much less stridently and much more beautifully than Dawkins.

The word euthanasia comes from the Greek and means literally good death and so it isn’t really accurate because death is not same as dying. Being dead has no alternatives, no plan B, no other possibility. Dying defies itself. Dylan Thomas could exhort his father not to “go gently into that goodnight” because where there is life there is hope, even if that hope courses through the hearts of those who are left behind. What if his father had sat up on his deathbed and told his son to fuck off and let him go in peace and anyway, boyo, you won’t be too far behind?

It’s the dying that is too hard. Being dead is relatively easy after that. The problem is that most of us who are capable of thinking about such things logically do not want to die. And not only do we generally not want to die ourselves but we don’t want those we love to die either. And yet we know that they all will, no matter how much we would wish it otherwise.

It may well be fortunate then, that for most of us having to make the decision to die regardless of our circumstances is withheld from us. A combination of the medical profession’s oath to never terminate life (well, not exactly but in principle anyway) and the most dominant of the organised religions’ claim of proprietary ownership of the afterlife (if there be any) have stymied any chance of people making up their own minds. In most countries the Law breathed a sigh of relief that Science and Religion actually agree on something and quickly outlawed euthanasia. It is a curious rejoinder to those who assert free will that as humans we have no say in either our creation or our termination.

Is it communal enlightenment to afford sentient human beings who have no desire to go through an inevitably long and painful, debilitating process of dying the opportunity to slip painlessly into non-existence? Given that there must be a rigorous set of checks and balances, a plethora of hurdle requirements based on the impossibility of a reasonable quality of life in the offing, what does it profit a person to suffer stoically and painfully until life leaves of its own volition? The philosophies, the psychologies, the physiologies and the potentials that underpin those questions are universal: both in the sense of being for all to consider and in the sense of being almost too immense to contemplate.

But what if it is not a proposition or a hypothesis? What if it is about a real man, your brother who had chosen to die? Philosophy does not apply to immediate family. Whereas we might praise the unknown person who chooses to end his misery, we weep when it is one of our own. And when the weeping is done, we might quietly wonder from where the foundations of that decision were quarried. If someone with the same genetic imprint as me could do it, could I?

I doubt that my brother thought he was actually going to meet his maker when he felt the drugs flow into his veins at 12.30. Many years earlier we had agreed that being dead was akin to not yet being conceived. But now I know that there is a difference. No one else is involved in your not (yet) being conceived but a lot of other people are involved in your being dead. Your being dead will inevitably play a greater part in me being who I am than your not having been alive. I could even ignore your being alive but your being dead is something I can’t argue with. Your being dead changes more than simply the tense.

Death, depending on how you look at it is either the only unverifiable prediction one can make or it is the ultimate prediction that no one can avoid making. I don’t mean the “everyone will die” prediction that is ultimately tautological but the “I am dying at this instant and will be dead thereafter” prediction that only those who are dying or at least are irrefutably convinced they are dying can make but never verify. Dying gives the brain too much to do whilst it is doing it.

The problem with observing your own death, the gathering of information through the sensory organs and its interpretation by the brain is that things are shutting down as they are being observed. It’s little bit like the children’s song about being swallowed by a boa constrictor that starts off with “Oh no, he’s swallowed my toe” moves through “Oh fiddle, he’s swallowed my middle” and ends with “Oh dread, he’s swallowed my … !” The song illustrates the point that the observer part of the dying person is somehow removed from the observed part of the dying – as if the deceased could turn to the mourners after the event and say, “Well, that wasn’t too bad after all.” In fact, that is more than likely to be an illusion caused by disbelief. The brain does the best it can but there are limits. What? Dying? Me? You must be joking! And we tend to assume that anyone who doesn’t need but wants to die is not thinking straight. But in truth, deciding to die when living is protractedly, irretrievably and purposelessly painful is entirely sensible and rational.

There must be a law written somewhere that at every funeral in the Western world, Vivaldi’s “Four Seasons” has to be played whether anyone requests it or not. At the front of a neat and tidy little room, my brother’s coffin was covered with red roses and a small statue of an eagle. To the side a large painting of an eagle and a small table on which were the white flowers I had sent on behalf of his siblings. The bouquet appeared inconsequential and a little mean. The painting missed the point. Rather than being overly fond of raptors, Eddie was amused by Michael Edwards, the British athlete dubbed “Eddie the Eagle” by the press for his ineptitude at ski jumping at the 1988 winter Olympics in Calgary. Edwards was short, fat and extremely myopic, which meant he had to wear glasses when he jumped. Because they fogged up, he actually couldn’t see where he was going. Perhaps there was an element of self-deprecatory identification with his namesake’s public ineptitude but mostly our Eddie found it funny. He certainly didn’t identify himself with Edwards as a person or an athlete.

There were fewer than twenty mourners; restaurant staff and a handful of relatives. Despite Eddie’s wishes, there was a speech made by an employee of the funeral home. It was as full of the standard platitudes as it was free from insights about the man in the coffin. He told the mourners, “Eddie will live only in our memories from now on”. These things have to be said, I suppose but was I to ring him up tonight and ask him whether Eddie was still living in HIS memory, he would not have a clue who I was talking about. “The red roses symbolize love; the thorns symbolize the vicissitudes of life and the green leaves symbolize the eternal hope that drives us on.” Perhaps he hadn’t realised that Eddie was dead and that nothing would be driving him on. Is that an unreasonable response on my part? Maybe – perhaps the speech comes as a package deal with the Vivaldi CD.

The man did say one interesting thing though. In the bit about my brother preferring his own company and being difficult to get to know, he mentioned that he had actually met him earlier that week in the hospice and had spoken briefly with him and the conversation had concluded with firm handshake. This, according to the man, was an unusual occurrence and was a manifestation of his strength at the end. Actually, on every occasion we met we shook hands on parting. Was the man simply uninformed or did my brother and I have a unique relationship? Or perhaps most people in palliative care wards lack the physical strength to shake hands. Was there an implication that Eddie was too strong for euthanasia; that he could have gone on a while longer?

The music faded and the man was back at the dais, telling us that we all had stories and that my brother had been an amazing person, having survived horrible cancers for eight years, and asking the mourners to form a semi-circle around the coffin whilst listening to the last piece of music. Jesus wept! The man obviously didn’t know him at all because my brother would never have wanted this kind of carry on. I needn’t have worried. My brother had sorted it out himself. The song he chose to go out on was “Always Look on the Bright Side of Life” from Monty Python’s “Life of Brian”. Great choice and I hope he looked on the bright side of death just before he took his terminal breath!

Less than fifteen minutes after it began it was over, and the mourners filed out.

So now, a decade after his euthanasia, when I am older than he was, do I understand my brother’s actions any better? Do I have any greater insight into how and why he could decide to die and then actually go through with it? I still have no doubt whatsoever that he made the right decision, that if angels exist they lifted his soul gently from his body and soared Heaven-wards. But I don’t believe in angels or Heaven. For me, it is now exactly as years before in an email he had said it would be. “There was a man. He lived, he died. That’s all.” Allowing for gender differences, that is all any of us will have done when the lights go out and the stage fades to dark. Exeunt omnes – beware of bears. My brother was a man who having lived, was being battered by great pain when he was given a choice of how and when to die. For that we are both still grateful.

Andrys Onsman
2008/2018