It is monstrously wrong that patients cannot ask for euthanasia

Soran Reader, a moral philosopher facing the prospect of losing her life, memory or thought, is outraged that the law bars living wills

January 8, 2009

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.

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