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It is monstrously wrong that patients cannot ask for euthanasia
8 January 2009
Soran Reader, a moral philosopher facing the prospect of losing her life, memory or thought, is outraged that the law bars living wills
Last month I was told I had a brain tumour - a low-grade glioma in my median temporal lobe, to be precise. It is in what the neurosurgeon called "a very eloquent" part of my brain - the part responsible for speech, sensation, thought, memory. It is very mixed up with the surrounding tissue, so surgical removal is not an option.
As this edition of Times Higher Education went to press, I was on my way to have a biopsy, due on 7 January. It carries a real risk of serious complications. I might die. I might suffer brain damage. I might lose large parts of my capacities to think, express myself and remember.
I am a philosopher. I specialise in ethics, particularly "at the receiving end" - issues for the done-to rather than the doer, the patient rather than the agent. So it is interesting, in a macabre way, that I of all people have been given this experience.
I believe with Hannah Arendt that our first duty is to think. To face this surgery, I have to think the real but unbelievable possibility that when I come round, I may be unable to think, remember or speak.
In all that mind-blowing horror, though, the possibility that really threatens to break me is that I may be unable to remember my children. I have already had a glimpse of life without those memories. During recent seizures, I lost my memories of when my daughters were born. The loss of mere dates may seem trivial, but the abyss it has opened to thought is terrifying, a glimpse of my life without my connections and my history.
I am certain that I do not want to live on if that happens. I am terrified by the spectre of loss of self. But I am out of my mind with anger that my own country does not allow me to protect myself and my family from this horror safely. I am anguished at the thought that my children, on top of their grief at the loss of their mother, may have to cope with me as someone else, someone lost in the world or in a vegetative state.
Personal experiences sometimes make ethical issues vivid in ways exercises of imagination cannot match. As a moral philosopher, I am learning a humbling lesson. Until the issue was spelt out for me in the terrifying light of this diagnosis, I had no idea how monstrous our country's euthanasia policies were. I had seen the stories on TV of people being prosecuted for helping family members die, of terminally ill people travelling abroad to be put down, but I had never put two and two together.
My diagnosis has woken me from my mindless moral slumber on this topic, allowed me to feel the absolute outrage and moved me to start making the arguments.
It is completely wrong that UK law does not enable me to protect myself or my children from the loss of my self by arranging to be killed if the surgery goes wrong. It is completely wrong that no one on my excellent five-person neurosurgery team can agree a living will with me. My compassionate and trustworthy neurosurgeon John Crossman and oncologist Joanna Lewis can say only that they will "make sure I am kept comfortable" if massive complications ensue, and hint that they will not strive officiously to keep me alive. They cannot assure me that they will put me out of my misery if that happens. They cannot soothe my terror in ways that the law of any civilised country must allow them to do.
The law must be changed so that people facing fatal or self-destroying conditions do not also have to endure this agony of not being able to protect their selves and their loved ones. The necessary changes are not dramatic, obscure or complex. Best methods for euthanasia need to be identified. Patients need to be enabled to state their preferences, the circumstances under which they want to be killed. There need to be witnesses to make sure statements are authentic and considered, not coerced or motivated by psychological distress, fear or ignorance. Medical teams need to be enabled to give effect to the preferences the patients state. Friends and family members who help at any stage in the process need to be assured that they will not have to face criminal accusations at the same time as they are suffering grief and loss.
It is not rocket science. It is obscenely overdue. I may not be in a position to press further for changes in the law after 7 January, but I hope this article will persuade others to get this tiny little cornerstone of civilisation set right before too many others have had to bear this.
Soran Reader is a reader in philosophy, Durham University.
Readers' comments
Dear Soran, I cannot imagine what you must be going through, hang in there. I pray for your miracle. My best,
Soran, you are asking for nothing more than a doting pet owner would ask for their furry friend. Too many people are so hung up about death, and their personal fears about it, that they lose their humanity. Why is it wrong to want to choose a quick, painless death over a protracted, dehumanised and painful one? When we will learn that death is not a disease to be "treated" but a natural part of what we call life? I wish you all the best.
You have surely made research, as a moral philosopher, of quite different arguments regarding euthanasia, as a means to have a complete picture of your subject area. In fact, suicide is not illegal, and you can commit it whenever you want. But you cannot ask other people to commit an assassination: this is against common sense, natural and positive law. Moreover, even if law in your country is against euthanasia, you cannot force other's conscience to kill you. I therefore suggest you , Soran, as a Ph.D. in Moral and Political Philosophy and University proffesor, to await a natural death whenever this occurs. I'llalso meanwhile pray for you and your family: you deserve it. Carlos Martinez-Thiem Universidad de Navarra (Spain) PD. I Had a very harsh traffic accident in 2000, remaining 20 days in 'coma', the following three months unconscious imagining lots of thigs, many of them regarding my own death. Here I am.
RE: Carlose Martinez-Thiem's comment: "Assassination" is a morally loaded word that is here being used rhetorically to beg the question against euthanasia. Even those against euthanasia do not think of it as assassination!
You are in my thoughts as I hope for a miracle, Soran.
Soran Reader has informed us that after she filed the above article, her surgery was cancelled. She writes: “I went in for pre-surgical preparations last Tuesday, but before those happened I was given a second neurosurgical opinion. The second opinion was that I should 'wait and see' for 3 months. The reasons were the difficulty of getting at the tumour and risks to nearby structures, the particular importance to me of language and memory functions, the real possibility that the biopsy might not show anything (20 per cent don't enable a definite diagnosis, apparently), the possibility that the tumour is very slow-growing (he thought this not unlikely, since it is large, smack in the middle of where memory usually is, and my memory function [hitherto] is unaffected - suggesting my brain has had time to re-arrange memory services, thus that the tumour has grown slowly) There is also an outside chance that it may all be inflammation anyway.
“So, having thought I would weigh the two opinions overnight, within five minutes I was on my way home to Durham, feeling very strange, but also feeling this was a wonderful reprieve. I will be scanned again in three months, and in the meanwhile will concentrate on getting the seizures under control and getting to grips with my work-life balance.
“So my news is no news, which may or may not be good news - but in the short term, it is the very good news that I don't have a hole in my head, my language and memory are ok, and I'm back at work and functioning more or less normally.”
Phil Baty
Deputy Editor and News Editor
The problem with Dr. Thiem-Martinez' position - that suicide is legal, but there's no moral right to have someone help you - is twofold. One, there is of course a prohibition on the only humane method of suicide - that is, barbiturates. Doctors are given a monopoly on these drugs. How, then, is it fair to say that we are asking for a doctor's assistance when all we want is a right which the government has taken away from us and specifically entrusted to doctors? If there were a right to get barbiturates, there would be no need for this "assisted" suicide business for able-bodied people. Two, someone in the condition Soran Reader feared she might find herself in would not be able to effectuate suicide. She was not asking anyone to be forced to assist her if that happened - merely that someone be allowed to assist her, provided a person was willing.
Waste no sympathy for this woman who complains about the harsh law now that if affects her. As a moral philosopher, what has she done all the years before on to get the law changed, on behalf of all the others who suffered from it? Has she written articles? lobbied her MP? joined organizations? Or was she too busy or doing more important things as long as she was healthy. As a resident of a jurisdiction (Oregon) where citizens got the law changed to permit 'death with dignity', I know that the efforts of many people are needed to change the law. Not only those people who have now discovered they are in need of such a change, but the healthy also.
Dear Soran, I cannot imagine the pain and finality of your situation without faith in God. God gave you life, why not leave it to God to God bring closure to your precious life? This delay seems to be speaking to you. All good wishes and an assurance of my prayers
Notice the argument form: I am absolutey outraged by X. (You should be, too.) Therefore, X is wrong. This is not a valid argument form. (My outrage could be unfounded, displaced onto X from myself, and so on.) There are arguments to be made for suicide and for physician-assisted suicide (accepted by physicians as early as the 18th century by Scotland's own Dr. John Gregory) that have been accepted as public policy in the US (the states of Oregon and Washington). These arguments merit attention in the UK.
I have been very surprised that the responses to this moving and pointed article have mainly been in disagreement. Implicit in free societies is that we entrust individuals with autonomy over a wide range of matters pertaining to themselves. If someone who freely chooses to die, for whatever reason, unambiguously sets forth that wish and asks someone else to act when the requesting party is unable to, and if that person is freely willing to do so, on what basis should the law prevent this? Where is the legitimate state interest? Since, as an earlier commenter points out, doctors are given a monopoly on barbituates, then doctors will be the ones asked. In the US every recent poll among physicians has shown that a majority would be willing to prescribe barbituates under those circumstances, no compulsion need be involved. It is as wrong to force life on an unwilling person as it is to force death on them. For all those commenters stating their wish to trust the matter of their own demise to God or to availing themselves of the full run of medical treatments, fine, I wish them success. How does a different choice on Ms. Reader's part impinge on them or deprive them of anything?
Mary Kenefick: If there had been a god then that god would have been responsible for the horrible brain tumour. It is utterly obscene as you do to request that someone should give faith to a being that, when imagined consistently, is ones oppressor. Given the problem of evil and suffering there are only two real stances to take in the philosophy of religion: either there is no god or there is an utterly evil god. In both cases, faith in it is not an option. Kevin: Your stance is hard to accept, if applied consistently. If it is wrong to legalize euthanasia for cases where the patient faces permanent and severe mental capacity loss because that risks stamping disabled as having lives not worth living, then the same would be the case for any other measure taken IN LIFE to avoid ending up in a state of permanent and severe mental capacity loss. If a patient is in a car accident and needs brain surgery to avoid such disability then your view entails that such surgery should be forbidden. Another case: a kid falls of his bike and would have suffered such severe mental capacity if not for his bike helmet. Did the parents in buying the helmet do something morally wrong? The "stamping" component is as strong (or rather weak) in all of these cases. You need to supply a relevant difference between them or accept either a negative or positive evaluation of all of them.
This is more than an armchair argument of words. I have faced the loss of memory and speech and at it's worst have contemplated at what point it becomes pointless. This should be in our power to control. I need no other argument.
Dear Soran Reader, like Sluggo above, I have been troubled by amnesia and aphasia and am resolved to add my brick to the wall whether or not it will benefit me. We have to try to do what is proper.
Dear Soran Reader, like Sluggo above, I have been troubled by amnesia and aphasia and am resolved to add my brick to the wall whether or not it will benefit me. We have to try to do what is proper.
It seems very troubling in my thouhts that some one would have to deal and anguish, as the person in this article. The life choice to have tratment, or not is to be in the hands of the patient and the over all outcome of the demise is the Power of the patients Choice.Given the idea that God if there is a God would never let such a thing happen to a good person the life story is "god or God has the ways to make you consider the breath you take moment by moment. If you were God or Jesus what would he do in your Shoes"? Life in the article and in every day events as we all live have the idea of many moments that are out of our control, this one is just the one of the Biggest......... I can t live ...... I can t effectively ask to die......... the system I feel is Letting down the People. Whos life is it....... To force a person to live in difficulty and agony, when death is a peaceful place that they will go soon------ due to the tumor, to make one suffer is canabilistic....... what would Jesus or God have done to help this person...........? on that note i will excuse my self from the topic.. God, Jesus and the religion is one of Love, Not punishment to the innocent ones' but the fact of a patient not being able to request to die in dignity is the Monstrously Wrong in the World.
you can refuse life sustaining treatments in an Advance directive, and they will just terminally sedate you anyway - you appear ignorant of the law in the UK- and hey, my friend was told he had a 'completely inoperable brain tumour' on his hypothalamus 15 years ago - by an NHS surgeon - he just went to the USA and had it removed, and was out of hospital in a fortnight. UK medics, particularly surgeons, are about 10 years behind of advances, and don't even have the right equipment to perform procedures that are routine in the states -