I wrote in my last blog that recent advances in treating dementia have shown promise. I said, “Drugs are being developed to target monoclonal antibodies against amyloid β, the protein that seems to be awry in Alzheimer’s disease”. However since writing that blog, I have read that some scientists think that really this was another false dawn. I wrote, “They have not been universally effective in Phase 3 trials with people with mild, prodromal, or even preclinical AD”. If these treatments are to work, they ought to have been effective, so now scientists are wondering whether the amyloid hypothesis itself is correct. There are other proteins that accumulate in Alzheimer’s disease, and it may be that we should look elsewhere for a cure for dementia. Back to the drawing board again, perhaps. So no magic bullet in the foreseeable future, and it is clear that dementia is going to be a tremendous burden on patients, patients’ relatives and economies for years to come.
And there is the rub. I don’t really want to say this, but my experience of being a GP to many of these patients, was that it could be a wicked, horrible disease that robs them of their dignity and causes a living hell. As patients got more and more confused they understandably got more and more anxious, and sometimes were living in torment. Not always of course, many were quieter and more settled, as is usually portrayed in the many dramas, films and documentaries that have been produced. But extreme suffering there was, and even powerful antipsychotics and tranquilizers (frowned on by many patients’ groups and some professionals), didn’t help much. This is not a nice way to die. In fact it is just about the worse fate that I can imagine. And if a cure is not coming for 20 years, if ever, then for me this is a dreadful prospect. My mother and my aunt developed Alzheimer’s as do 33% of the over 85’s and 60% of the over 90s’, so it is quite possible that I will get it too.
So, once you have been diagnosed as having Alzheimer’s disease, or other forms of dementia, what are your options? The first thing to do is to be absolutely sure that the diagnosis is correct. There is no sure way of diagnosing Alzheimer’s disease in life. Alzheimer’s is caused by neuron death and part of the diagnosis is the presence of deposits of beta-amyloid and the formation of amyloid fibrils, whether these are the cause of the disease or the result of other processes as yet unidentified. Absolute confirmation that this disease affects a person can only be given following a biopsy, which is far too invasive to be done as a diagnostic tool. So specialists use clinical interviews, biomedical imaging (TAC, MRI scans of the brain), and so on. There can be signs of brain failure in the very elderly which are not due to a progressive dementia, so it is important to be sure.
When I was working in general practice, I saw many elderly people with acute confusional states due to infections such as urinary infections or pneumonia, metabolic problems including dehydration, or side effects of medication. Almost any serious illness can affect the proper working of the brain, and in the elderly the brain’s reserves can be quite low, so that when people are ill, or very frail, they become confused and drowsy, sometimes delirious. The good news is that once the cause is treated, they get better. So it is important not to assume that such people are suffering from dementia. In the past some people have been incorrectly labeled, as having Alzheimer’s when they don’t have it, and not only those who want to avoid jail sentences. Diagnosing the exact type of dementia (Vascular, Alzheimer’s, or Lewy body dementia) is also important to give a prognosis, as some types progress much faster than others. Once a diagnosis has been made, you should take out a Power of Attorney if you have not already done so, and make a living will to ensure that everyone knows your wishes, and to make sure someone is going to be able to supervise your care and treatment. But after that, and when the disease is progressing? The options would be very limited. The only solution for me personally would be to end my life, after accurate diagnosis but before the disease has progressed to such a level that I would not be able to do anything about it. But of course it is illegal in this country to help anyone die.
In the Netherlands and in Belgium this is possible for people with incurable painful conditions, and just recently Marike Vervoot, the Belgian Para-Olympian athlete has confirmed that she has signed the papers to allow assisted suicide. She suffers from a painful incurable and progressive spinal condition which has paralysed her and caused epilepsy, and though she has fought long and hard against it, and proved that disability can be overcome by physical effort, she takes comfort knowing that when the time comes she can have a peaceful death. In her words, “With euthanasia, you are sure that you will have a soft, beautiful death, and that you can do it with the people you want who stay with you. It gives [me] a feeling of peace and rest on my body that I can choose myself how far I will go”. That surely is something that should be possible for mental health issues as well. The living hell that Alzheimer’s can produce is something that should not be inflicted on people if they say they want to end it.
Over 80% of the population would agree with that sentiment. So why is it so hard for our lawmakers to actually put this into law? The answer is that there are powerful and influential people who are totally against it.Our society is based on the idea that human life is “sacred”, i.e. that there is something different about human life – all human life – that it should be preserved under all circumstances. It is taboo to think of death in any terms other than in saving lives wherever possible. Yet everyone must die sometime, and we all understand that at some level, even if we don’t want to think about it. Religion is very much a part of it, but I don’t think this idea is only a result of religion – religion is the result of this way of thinking as much as its cause. It has been suggested that there is a gene for spirituality, so that if you have it you are more likely to experience self-transcendence, which includes or a feeling of connectedness to a larger universe, and mysticism. This gene may well be selected for, because societies with the ability to organise its people through shared spiritual experiences, are likely to do better than ones with no such “holding glue”. Religion is a way of expressing the idea of human life being paramount, and in the monotheistic religions the exhortation “Go forth and multiply” makes it explicit. (Interestingly, in Judaism it was considered right for rabbis, the most educated and intelligent people in the community, should have the most children, which ensured selection of genes for upright living and intelligence, while Catholicism made sure its priests, equally educated and upstanding, would have no children, thus losing many highly valued genes. In some countries fertility is openly used as demographic weapon, to ensure that one religion continues to be able to dominate another. This is more common in the monotheistic religions; on the other hand, Buddhism has a much more balanced view.
I don’t think there is much doubt that death as an idea is a very unpleasant, even frightening thought. All religions encompass ideas about death, but the monotheistic ones, Judaism, Christianity and Islam, with their emphasis on an after life in some sort of heaven, take human life to be “sacred” in a religious sense, and this reinforces the idea that it is wrong to die, or at least wrong to die at a time not of God’s choosing. I think this is illogical even in the terms of religious belief itself. Could not God choose to help you to commit suicide if this was the best course of action for you? Why should you not go to everlasting glory sooner rather than later? Whatever the rationale for the idea that it is wrong for a person to choose the time and method of ending his life, it is now causing a lot of unnecessary suffering in the world today.
The people who promote life at all costs against a peaceful death at a time of one’s choosing are not only deluded, in my view, but they are also intent on imposing their views on others in a very patronising way. We are not supposing that people who do not want to do it will have it done to them. There will be safeguards in any law passed which will protect people who feel influenced by pressure to die before their time from whatever source. Yes, I agree there will be some people who are motivated by the desire not to be a burden on others, rather than feeling that life is intolerable. But the way to prevent this feeling is firstly, to actively treat a clinical depression, and then to surround them with people who want them to live and feel that their lives are worth something – their family, friends, and caregivers. If these people cannot persuade them, then what right does anyone have to prevent them doing what they want with their own bodies? It is a form of control from outside that goes so against our feelings of ownership of our own fate.
The people who want to prevent it are usually worthy people – champions of hospices, palliative care specialists, nurses and the religious establishment such as bishops in the House of Lords, and believers in religions which teach against it. They may have chosen this work precisely because they believe in the sanctity of human life, and they do valuable work in easing the paths of many of us with incurable diseases. But as a GP I found that many of my colleagues thought as I did. The few that would not support euthanasia however awful the life and however much suffering there was, were religious people, and I respected their views – for themselves. As assisted suicide continues to be illegal, one cannot ask any doctor to support people in any way at all. I attended several BMA conferences in years gone by when the mood of the majority was supportive of legalizing assisted suicide, but lately the BMA has turned its back on it, fearing that it would put doctors in an invidious position. In any case nearly all specialists in the field – oncologists, palliative care specialists, care of the elderly, have a vested interest in making sure that assisted dying would not happen. Not only would they likely be drawn into the process, for instance in “vetting” people for eligibility, but also their specialities would suffer to some extent, as fewer last ditch treatments might be offered if it became legal and more acceptable. In the last analysis a big part of what they do is to influence their patients in the direction of continued life of whatever quality. I do not think that doctors should have any undue influence on what the law says. The law should be made taking into account what the majority of the people want.
I reject this paternalism. I want to be able to know that if I get Alzheimer’s, just as if I get a painful incurable disease like Marike Vervoot, I will either be able to choose for myself the time and place of my death, or if I have passed that point and no longer have the ability to understand the issues, then someone else will be able to do this for me. There is now a new push to get action on this, as Noel Conway, who has motor neuron disease, is spending some of his final moments challenging the unpopular, broken law on assisted dying. Baroness Meacher, writing recently in PoliticsHome, has said that every poll undertaken in recent years shows that the vast majority of British people are in favour of change and no survey has ever reported a majority of Britons opposed to assisted dying, a fact acknowledged by the Ministry of Justice. The law has been changed to allow assisted dying in many countries; in America, Oregon, Washington, Montana, Vermont and California now permit assisted dying, Canada allows it as well as the Netherlands and other countries in Europe. These are all places where there is excellent palliative and hospice care. There have been no concerns about people being coerced into ending their lives. On the contrary, people have said that they will live longer, knowing that they can control the time and manner of their death. I wish them every success. Of course this would only be a start as the new law would not help people without capacity – i.e. who are no longer capable of making the decision, regardless of how clearly they made their views known beforehand. People with Alzheimer’s disease would be excluded from any of these proposed new laws. We need a law which allows us to say in advance that we can die at a time of our choosing, with safeguards, whatever our illness, or even no illness at all.
I need this to happen. The world needs this to happen. The world needs us human beings to stop acting as if human life trumps everything else – animal life, the environment, the life of our planet. We need finally, to accept death.
References
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Elen Samuel, doctor and writer 