Month: September 2012

For this post I’m going to break from my normal light-hearted blogging to talk about a topic which is very serious and close to my heart – the “Right to Die”.

The “right to die” is the ethical entitlement of someone who is suffering from a debilitating and permanent illness and who has no quality of life to choose to end their life on their own terms often through either suicide or, if necessary, assisted suicide. This is a subject which crops up in the news on a regular basis and there is, understandably, a great deal of controversy surrounding this question.

Recently the “right to die” issue has surfaced surrounding the case of Tony Nicklinson, a 58-year old man who suffered from a condition known as locked-in syndrome. His condition meant he was unable to move or speak, communicating solely through eye movements. Mr Nicklinson went to court in an attempt to make it possible for a doctor to end his life without fear of prosecution. He argued that he was suffering a miserable and undignified life and wanted to end it on his terms. However, his appeal was unsuccessful. The court ruled that it was unable to “usurp the function of parliament” and did not have the power to grant his request. His devastation was clear to see and harrowing to watch. Sadly or fortunately, however you want to look at it, Mr Nicklinson died peacefully of ‘natural causes’ at home just 6 days after the court date, after refusing to eat and finally contracting pneumonia

I believe that the UK government urgently needs to review its policies on the right to die and voluntary euthanasia. This is partly so people, such as Mr Nicklinson, don’t have to suffer needlessly. However science also foresees a bigger problem society may soon have to face, one which is set to cause huge economic and ethical problems: the dementia time-bomb.

I have a personal interest in wishing that the law for euthanasia be changed, specifically with regard to dementia. I have seen two of my grandparents suffer from this devastating disorder – my paternal grandfather and maternal grandmother. In my grandfather’s case, he suffered from a low-level form of dementia for many years, before suddenly and rapidly going downhill. However, just a few months after his sudden deterioration, he died of an infection. When I heard about his death I was relieved: at least he didn’t have to suffer the indignity of full blown dementia for many years. However, this was the sad fate which befell my grandmother.

In 1999 my grandmother was diagnosed with suspected Alzheimer’s disease (the most common form of dementia). Our whole family, including her husband of nearly 60 years, watched her turn from a happy, chatty, busy woman into one who forgot who or where she was. She became violent and confused. She had a long, slow, painful descent into being completely helpless – unable to remember who she was or basic things like how to dress herself. After several years my mother made the heartbreaking decision to move her to a care home, since the burden of caring for her was too much for my 82-year old grandfather, who had been diagnosed with cancer. During her time in care she continued to deteriorate, a process we believe was accelerated by bad practice within the care home (we know she often went without sufficient food since no one ensured she ate her dinner – another simple necessity she had long forgotten the need for). As she descended, she slowly forgot who her grandchildren were, then her children. I still remember the moment she forgot who my grandfather was, when there was no recognition of the man she had married in 1948. This devastated my grandfather; he never really got over it, and began to give up his fight against his cancer, succumbing to the disease in 2010.

My grandmother eventually plateaued, but only after she’d forgotten how to walk, speak, go to the bathroom or do anything other than sit in a chair, constantly grinding her teeth and very occasionally mumbling a nonsensical sentence. Even those things stopped eventually and she essentially became a corpse whose heart happened to be beating … this was in no way a dignified way to live. She finally died in June 2012, after 13 long, painful years. My whole family was relieved when she passed away – she wasn’t suffering any more.

It is this experience which has strengthened my view on euthanasia. I strongly believe that it should be legal for people who are suffering enormously and have no quality of life to be able to end their life on their own terms.

Of course I’m aware of the problems surrounding legalising euthanasia. There’s a huge difference between the case of Tony Nicklinson and my grandmother. Tony Nicklinson was mentally sound but trapped in his non-functioning body, my grandmother was OK physically but mentally there was nothing left. These two cases would have to be treated very differently. The main difference being that, in one case the person is able to state for themselves that they wish to die whilst in the other, they are no longer in sound mind therefore unable to make that decision.

One of the main objections to the legalising of euthanasia is that it may put vulnerable people in harm’s way. Take for example people who are disabled and believe they are a burden on their relatives and carers, or a family who might just ship off their mad old grandma and be done with it, no matter what she may have wanted. These are all very real concerns which need to be addressed, however, I think that the vulnerable can be protected by implementing very strict controls around the process. These controls must ensure that euthanasia is only allowed in extreme cases, such as those mentioned above and that each separate case is subject to an extensive and thorough review. I also believe that interviews and psychiatric assessments are necessary for both the patient and their chosen representative (in cases where another person will ultimately have to make the decision) and that no action should be taken unless two or more doctors agree that euthanasia is the best option. Of course in the case of dementia it will be necessary for the patient to express their wishes whilst still in sound mind, perhaps relying on an advocate/representative to ultimately decide when euthanasia should be performed. It is also important to take into account the wishes of the doctor(s) involved in the process – no doctor should be forced to perform an act of euthanasia against their wishes, much like they cannot be forced to perform an abortion. But what’s wrong with introducing a legally-binding document, such as an advanced directive, stating that “if I get to a stage where my life has become devoid of any quality or dignity due to a debilitating and permanent illness, then I trust a designated person/people to decide when my life can be ended (subject to legal red tape and psychiatric evaluations).

My feelings on this matter don’t just come from my own personal experiences, but have also been formed through my research on Alzheimer’s disease. However, I must stress that I have had many debates with friends and colleagues (including those doing Alzheimer’s research) on the matter and that not all scientists agree with my views. The bioethics behind euthanasia are tricky – most people would only want their lives to end if they knew there was no possibility of a cure. As far as dementia goes, there is a huge amount of research being undertaken into a possible prevention or cure for the disease. A definitive prevention and/or cure is the ideal and if this ever occurs then there will be no need for euthanasia laws to exist. However, dementia is an extremely complicated condition, believed to be caused by a multitude of genetic and environmental factors. A cure still seems a very, very long way off. Clinical trials for drugs take many years from conception to being available on the market, so even if a breakthrough does occur at the research level, it may take ten years before any drugs are freely available. This also isn’t taking into account that dementia takes many forms – Alzheimer’s disease is the most common, but there are many other versions of dementia, including vascular dementia, dementia with Lewy bodies and Fronto-temporal dementia, which all have their own causes.

In cases such as locked in syndrome, the outlook may be even bleaker. A quick search for “locked in syndrome” on the journal website Pubmed doesn’t produce many papers (8124) and few seem to be about treatment. This is a big contrast to papers published on Alzheimer’s (85847) or lung cancer (211982). There is no cure for the syndrome; research is mostly concentrating on helping sufferers communicate. The best hope scientifically would be to prevent the syndrome by preventing strokes, which cause many cases of locked-in syndrome. Although there are a few isolated cases where people have recovered from the disease these cases seem to be rare.

[youtube http://www.youtube.com/watch?v=zYvKxFaDaEo]

Time is something which is not on our side when it comes to dealing with dementia. According to the Alzheimer’s Society, there are 800,000 people suffering from dementia in the UK at the moment. By 2021, only 9 years away, they estimate that this number will rise to over a million. The cost of dementia to the UK is predicted to be £23 billion in 2012, minus £8 billion a year which is saved by people caring for relatives with dementia themselves. Worldwide, there is expected to be 36 million people suffering from dementia, with that number expected to rise to 115 million by 2050(source).

I find those numbers utterly staggering, to me it seems like politicians are metaphorically sticking their fingers in their ears and singing loudly rather than confronting the issue, which is just getting bigger and bigger. Like it or not, in 9 years’ time, 1 million people are going to be suffering from dementia, most requiring round the clock care. This doesn’t even take into account the pressure and emotional stress put on the families of those 1 million people. Maybe a cure will be forthcoming sometime soon, but something needs to be done to combat this rising crisis – through increasing funding for Alzheimer’s research, improving the quality of care (for example, reclassifying from “social” care to “medical” care) and for helping people who are suffering to end their lives with dignity, and on their own terms.

Of course, I’m not saying that the minute someone gets diagnosed with dementia that we should ship them off to dignitas or some future UK based equivalent. This has to be a choice made by the individual when they are of sound mind, stated clearly by them in a legally binding document with assurances that it is not decided under pressure from anyone else. I just think that the opportunity should be there if it comes down to it – I know anyone in my family would prefer to end their lives rather than enduring the indignity my grandmother had to go through. It’s time for the government to at least seriously assess the possibility and consequences of making euthanasia legal. In my opinion, the option of euthanasia should be available to those who require it, but it should not be made easy. So my take home message would be – Make it hard, but make it possible.

Post by: Louise Walker