I first discovered the dishonesty that can be involved in terminal care when I had to care for a man in the final stages of cancer of the colon in the early years of my surgical training. He had undergone an unsuccessful re-exploration of his abdomen for intestinal obstruction and had developed an especially unpleasant complication after the procedure. The anastomoses — the sutured joints we had made between the parts of his intestine that we had cut out — broke down and he developed multiple faecal fistulae through his abdominal wall. In other words, several holes appeared in his abdomen and, through these, faeces steadily oozed out. The smell was truly awful. He had been put in a side room and you had to take a deep breath before going in.
There was nothing we could do to help him. He was wide awake and I am sure that he knew what was happening and that he was dying. He must have seen the involuntary expressions on our faces as we entered his room, steeling ourselves to brave the stench. We started a heroin drip with a pump “to keep him comfortable”, and over a period of many days he died. I had been a doctor for three years by then, but felt utterly unequal to the task of discussing his death with him, partly because we were, in effect, trying to kill him with the heroin, but could not openly say so.
I remember him looking sadly into my eyes as I stood above him, trying to stop myself looking away out of the window, while nurses were carrying out the hopeless task of trying to keep his abdomen clean.
I will never know what he might have said if I had sat down beside him and talked to him openly. Was I frightened that he might ask me to “ease the passing”, as it is called in medico-legal language, and break the law? Was I frightened that I would have to admit to him that that was what I was trying to do? And was he equally frightened of such a conversation? It is always difficult to talk of death to a dying patient, but even now, 40 years later, I feel that I let this man down and was a coward.
There are many ways of dying. It can be fast or it can be slow, it can be painless or painful, it can be horrible, even in the modern age (whatever some palliative care doctors might claim to the contrary) or a peaceful fading away. But only rarely is dying easy, and most of us now will end our lives in hospitals, a few of us in hospices, in the care of strangers, with little dignity and no autonomy — unlike our ancestors, who mostly died in their own homes. Although scientific medicine has brought great and wonderful blessings, it has also brought a curse — dying, for many of us, has become an unpleasantly prolonged and institutionalised experience.
Few of us now will not live into old age, but our bodies and brains inevitably wear out, however much we care for them with exercise, sudoku and healthy diets. Most of us will develop cancer, many of us will become demented. Our ancestors died quickly — usually from infections — and had no choice in their endings. Pneumonia, it used to be said, was the old man’s friend. But medical treatments now keep us alive for much longer than in the past, but often in a debilitated state and at the cost of unpleasant side-effects and prolonged periods in hospital. Not only this, but modern diagnostic technology can now predict our decline and death some time before they come, while we might still be relatively well and independent, whereas our ancestors could continue to live in blissful ignorance, before they succumbed to a short and final illness.
Evolution has equipped us with a deep fear of death, which is surely hardwired into our brains. This fear made sense when our forbears were at risk of dying when young, putting the survival of their children in jeopardy. But how hard should we try to avoid death in the modern age? When the infirmities of old age will have made life a burden for some of us, or when doctors have told us that only dying and little living awaits us? Or if we start to become forgetful and are diagnosed with Alzheimer’s or one of the other remorseless dementias?
Some of us — probably not many — would prefer to bring our death forward in such circumstances. If we are not yet in institutional care, we are always free, of course, to commit suicide, but it is not easy as we have to do it violently — by jumping from a height, cutting our throats, by hanging or asphyxiation, or in the US with a gun, where there are some 20,000 such deaths every year. These unassisted methods are distressing — both for ourselves and for our families.
In several countries — in particular, the Netherlands, Belgium, Canada, Switzerland, India, six US states and, as of next year, the state of Victoria in Australia — it is not illegal for doctors to prescribe a drug (usually a barbiturate) with which people can bring their life to a dignified and peaceful end. (The claim made in parliament in the recent debate on assisted dying that the drugs used could cause great suffering was a monstrous lie.) Various names have been used to describe this action by a doctor — euthanasia, mercy-killing, assisted suicide or assisted dying.
The word euthanasia is probably best reserved for doctors killing patients without their consent, as happened in Nazi Germany. It is crucial to a proper understanding of the debate about assisted dying (the name I prefer) to understand that the possibility of legal assisted dying applies only to people who have mental capacity, as it is called in the law. It does not apply to people with brains damaged by disease or trauma or old age, who have lost the ability to make rational choices for themselves. So “assisted dying” is not euthanasia — it is not doctors deciding when somebody should die, but about people making their own free choice that it is time for their life to end in peace. Why should we deny ourselves and others this freedom?
As Lord Denning once observed, the prohibition against helping somebody else kill themselves is a little odd. How can it be illegal to help somebody do something that is not in itself illegal? But in the UK, a majority of members of parliament and the British Medical Association (BMA) are implacably opposed to introducing such legislation, even though many opinion polls have consistently shown a strong public majority in favour of it, with only a vociferous minority against it.
A variety of arguments have been presented to defend this oddity, with its denial of human rights, and its consequent and cruel infliction of considerable suffering on many people.
The traditional argument, of course, is religious. God has banned suicide. He has “fixed His canon ’gainst self-slaughter” as Hamlet put it. It is therefore wrong to help people kill themselves. But this is a matter of belief and faith, and people who have such beliefs have no right to impose them in a free society on those who do not share them.
The opponents of assisted dying must find other, often surrogate, arguments. One such argument is that people might be depressed or mentally ill, and not responsible for themselves. But surely this problem is easily dealt with by suitable psychiatric safeguards? There is no evidence from the countries where assisted dying is available that this is a problem. Indeed, applying for assisted dying from the Dignitas clinic in Switzerland is a lengthy and expensive business, requiring detailed medical and psychiatric reports, with many requests being rejected. Similar procedures are in place in all the other countries where assisted dying has been legalised. Obviously, people who are suicidally depressed or psychotic should receive psychiatric treatment and not assisted dying, but it is not very difficult to distinguish between severe depression and a considered wish to bring one’s death forward when faced with untreatable cancer, dementia, motor neurone disease or similar problems.
Another argument is that assisted dying is a slippery slope that will lead to euthanasia, as practised in Nazi Germany, of the old and frail, of the disabled and mentally ill. “There will be death targets,” as one senior politician once put it to me. Somehow or other — the proponents of this argument do not explain how — assisted dying will result in the frail, vulnerable and disabled being bullied into asking doctors to kill them, even though it is not what they want. I do not find this a very plausible scenario.
It is true that assisted dying comes in two forms — the first, in America and Canada and in Lord Falconer’s defeated bill, is that it should only be legal if a patient is expected to die within the next six months. In recent weeks we learnt of David Goodall, the 104-year-old Australian scientist who wanted to end his life as he found that it had become an increasing burden. He had to go to Switzerland, as he did not have a prognosis of less than six months. He spoke very clearly at a press conference about this and of his dismay that he could not die in his own home. His family were in full agreement and, rather movingly, crowdfunding enabled him to fly business class for his last journey to Zurich. In countries such as Holland, Belgium and Switzerland, there is an additional qualification for assisted dying. You will qualify for it if you are faced with a future of intractable suffering. A young English man, for instance, left quadriplegic in a rugby game, opted for death in the Dignitas clinic on these terms, as have several senior English physicians I have heard about who had been diagnosed with early-onset Alzheimer’s. In Holland and Belgium, assisted dying has been granted to a small number of chronically depressed patients who have failed all treatment.
The fierce opponents to Falconer’s bill claimed that permitting assisted dying for people with a six-month prognosis would soon lead to assisted dying for intractable suffering as practised in the European countries, and then, they implied, to mass medical murder.
No evidence is produced to justify this fear, so we do not really need to provide any evidence against it either. But surely it is absurd — why should assisted dying lead to doctors killing their patients against their will? Was Harold Shipman representative of the medical profession? We trust doctors with our lives at the moment — why should the availability of assisted dying suddenly turn them into killers? Brian Rix, one of the great campaigners for the disabled, initially opposed assisted dying when it was being debated in the House of Lords as he feared it would escalate into use against the disabled. But when he himself lay dying shortly afterwards, he wrote a most moving letter to the Speaker of the House of Lords, saying that he had been mistaken and that he had changed his mind.
A different argument is that the legalisation of assisted dying will be used as an excuse to provide less hospice care. This has not been borne out in countries where assisted dying is available. The hospice movement is alive and well in the UK (where, in fact, it originated) and I see no good reason to think that it will not continue to be so.
One of the most widely voiced arguments against assisted dying is that greedy children will bully their elderly, vulnerable parents into asking for a suicide pill so that they can inherit the family silver. I have rarely heard a more ridiculous suggestion. Not only does it show a remarkably poor and patronising opinion of your fellow human beings, it is also — at least in my experience — contrary to what I have usually observed in my own work as a doctor.
More often than not, it is the dying patient who has accepted death, but the family who find it hard to let go. Besides, the simplest of safeguards, in the form of the patient being carefully interviewed by independent specialists (who need not necessarily be doctors) over a number of days or longer, would easily prevent this happening. And surely, if there were such a breakdown of a loving relationship between a parent and their children — something very much against normal human nature — isn’t it rather unlikely that the parent would fall in with his or her children’s attempts to get them to volunteer for suicide? Again, there is no evidence from the countries where assisted dying is legal that this happens.
The final argument against assisted dying is that its availability will frighten vulnerable, dying patients and that therefore the right of people to opt for it should be overridden. I find this argument bizarre. It seems to be saying that legalising assisted dying will make dying patients see hospitals and hospices as little different from death camps and no longer places of kindness and care. It is worth repeating yet again: assisted dying is voluntary and applies only to people with mental capacity. It does not give doctors the power of life or death over their patients in any way whatsoever. Why should dying patients think that it might, when it is clearly stated that it does not?
I have a friend, whose opinion I deeply respect, who is a palliative care doctor. She is opposed to assisted dying, but for none of the above reasons. Her objection is that many of her patients, when they are admitted to her hospice, are in a desperate mental state. They feel obliged to do what they believe is best for their family (ie, kill themselves), even when this might not be what they themselves really want. Furthermore, she feels, families may possibly encourage this (with the best, least selfish intentions) because they look at their parent or grandparent dying of cancer and cannot conceive of the state they are in as being anything other than terrible when, in reality, it is remarkable what people can come to terms with. But this, I would suggest, is not a case against assisted dying, but instead an argument against providing it quickly.
Safeguarding interviews will take time, and during this time the dying can try to achieve some kind of reconciliation with those who will be left behind. The fact remains that the patient’s wishes should ultimately be paramount and some people will nevertheless continue to wish for control over their death, and it is simply wrong to deny them this.
Every time I operate there is some risk that the patient will come to harm, but the risk is justified by the possible benefits. Surely the same applies to assisted dying? Even if — and it is a very big if — a few patients are hastened to a premature end by bullying relatives or callous doctors, which somehow the safeguards fail to stop — might this not be a price worth paying to allow the much greater number of patients who wish their lives to end with dignity to do so? Hospices are often wonderful places, with wonderful staff, but not all of us want to die in them. The campaign slogan of opponents of assisted dying is “care not killing”, but perhaps some of us do not want to be cared for by strangers as our life comes to its end. Perhaps we would prefer to die at home, at a time of our own choosing. As it is, hospice care is available only to a small proportion of dying patients and in the UK rarely to the elderly.
There are two further points to be made in favour of assisted dying other than the a priori case for patient autonomy. In Oregon, where assisted dying has been available since 1997, it is reported that many people who express an interest in assisted dying when they enter hospice care in the event do not take it up. The knowledge that, when the end comes, there will be no risk that it will be very distressing is clearly reassuring. As the Belgian palliative care doctor Wim Distelmans has argued in his book In Pursuit of a Dignified Life’s End, assisted dying should be seen as complementary to terminal care and not in opposition to it. In England, where assisted dying is against the law, many hospices and hospitals nevertheless use escalating terminal sedation for the final phases of their patients’ illness. Increasing doses of opiates, ingenuously justified as symptom relief, precipitate respiratory failure and death. As Distelmans argues, this is no different from euthanasia without consent. Might it not be better if the use of such terminal sedation could be talked about with patients and their relatives, and that the patient had some choice in the matter?
The recent events in Gosport surely show this all too clearly. The risk of abuse is much greater when death is hidden with half-truths and euphemisms than if it is openly discussed with patients and families, as would be possible if assisted dying was legalised.
Hasn’t it been said that only the truth sets us free?
It is clear that the opponents of assisted dying are frightened by it — they argue that if it is legalised in England it will bring out the worst in either patients’ families or their doctors, or both, and lead to abuse. They have produced no evidence to justify this dismissive and negative view of human nature. Is it, perhaps, that their fear has a different, unconscious, root?
It has always struck me as somewhat illogical that the most passionate opponents of abortion and assisted dying usually have religious faith, with a concomitant belief in life after death. Surely, if our lives continue after death, abortion and assisted dying are not absolute evils? Why can’t there be room for compromise — that sometimes suffering can justify bringing a life to an earlier, more dignified end, with a speedier entry — hopefully — to heaven, than if nature, which so often now means intensive medical care, is left to take its course? It is as though they think that assisted dying is cheating — that we need to suffer when dying if our soul is to be reborn. Some even claim that dying is a transcendent experience, but I suspect that any transcendence is enjoyed more by the witnesses than by the dying. Perhaps what drives these people is more their own fear of death than concern for what might be best for the rest of us. In particular, fear of the thought — which is such a threat to their faith — that death might be final after all, with nothing to follow.
Henry Marsh’s Admissions: A Life in Brain Surgery is out now in paperback (Weidenfeld & Nicolson £9)