Right to Die: Is it ever justified? – one scientist’s perspective

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.

Syringe by bocian - 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.

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

24 thoughts on “Right to Die: Is it ever justified? – one scientist’s perspective”

  1. That’s a heart-breaking story but I’m not sure I agree that euthanasia should be legal when the person in question is not consenting, i.e. when they are suffering advanced dementia. I think it would open doors to roads we, as a society, do not want to go down. Do they actually want to die? Who are we to decide whether they should live or die*? Where do you draw the line? When tackling this issue, I think the onus should be on drastically improving care for the elderly rather than legalising euthanasia, but that’s just my view.

    *from an ethical stand point, not religious.

    • I would counter argue – who are we to decide that someone who is suffering a miserable existence does not have the right to a comfortable easy death (assuming that is what they want).

      Although there are certainly situations where it is not appropriate (when consent is either not given or coerced), I believe that if an individual has expressed the wish (whilst still of sound mind) that they want to end their life in a dignified manner that is the least society can do for them. I.e. If someone knows they have Alzheimer’s, or for that matter any devastating disorder from which there is little to no chance of recovery, why should their only option be suicide, hunger strike (technically a slower version of the same thing), or a long drawn out death.

      I would go as far as arguing that we treat our pets better than we do our elderly, at least if an animal is suffering we have the decency to put them to sleep and end their pain.

      Again like Louise I may be bias since I have seen this type of suffering and the effect a hunger strike has on an individual who just doesn’t want to live any longer. The situation is devastating for both the family and the individual, there must be another option, at least I certainly hope this is the case when I reach that stage in life!

      – Sarah

  2. @Biofluff: I agree with you that euthanasia shouldn’t be legal in the case of advanced dementia. However, my argument is that should be able to state BEFORE SUFFERING from the disease whether you wish for someone (your children/spouse/close friend or whoever) to decide to end your life when you are unable to.

    There is of course the question of whether you’ll change your mind, and what can be done when your mind is too far gone to be able to change it? I suppose that’s up to the discretion of the person who ultimately makes the decision. I know that many people will resolutely stick to their decision once it’s made (i.e. Tony Nicklinson) and as a practice in countries where euthanasia is legal, the doctor asks the patient several times whether they really want to do this. I suppose for dementia-related euthanasia, you’d have to ask the decision-maker the same question several times.

  3. Great article and totally agree, I think it’s really important that no one should be able to tell you what you can and can’t do with your own body (as long as that doesn’t affect anyone else’s right to do the same of course). As morbid as it sounds ideally it should be a lot more common to think about wills etc. when you’re still entirely in control of all your mental faculties so that you can clearly decide, if it came to it, how you would like to die.

  4. I appreciate your well thought out perspective. I think that the dialogue has to be started in terms of policy. I see a lot of families who are spending more to keep a grandparent alive who would be horrified to see the state he/she is in now than it costs to send a child to a very good college. I am a compassionate person, heck I’m a vegan, and I think keeping someone alive beyond mental capacity is cruel, especially if it’s against their express wishes.

    Science is a miracle of hard work and innovation- now health care is capable of keeping the body alive, while the mind is gone. End of life needs to be in sync with technology’s advancements, morals & society. Right now there is a Huge business built around keeping people alive past mental capacity and a man can’t take his life legally. I think you highlighted good concerns, while providing sound reasoning on why it need to be talked about.

    Thank you.

  5. Ethics is framed by the people and it is incorporated into religion as a part of many issues in the practice of religion. When a person with dementia/any incurable disease and has the faculty to recall or decide to live or die should be left to the person to decide and when not in a position to do so, should be left to the care givers or the guardians of the patient. A person is born by accident with definite end in death. When such is the case one should not feel for death when it is not worth to live. In a way legalizing euthanasia has to be encouraged to relive the the person and the close ones from seeing the miserable suffering of the person in question. One question arises here, the fraud that may be committed to do away with a person who may not be suffering, for gains. As the author has stated that the near ones were relieved after the death of the persons who died naturally indicates that they were also feeling that the death should come early to do away with the suffering of the person and the care givers.
    There should not be any sentiments here. All living kind has an urge to live though many cannot express it. But we humans kill them for our food or for game to enjoy. Though we cannot compare the human beings with other lives since we have developed our ethics keeping ourselves at higher level, under situations like the one here it is necessary to take a decision to end suffering. Here I want say that the Hindus do not worry for death either oneself or the near ones since there is a great belief that they are going to be born again. Some see that the person died is born in the same family again.

  6. As a caregiver for 10 years, I saw hundreds of people in nursing homes, hospitals, and private houses that should have been put to rest by euthanasia. Like what is explained in this article, this helpless old men and women(many of them were known personalities whose dignity were so dignified) are like dead bodies whose hearts are still beating. I can’t imagine why their dignities are repeatedly trampled by “Caring people” who were forced by their own conscience to look the other way and pretend the people they are caring for are just logs – and not humans.
    “Judges should stay in those nursing homes, hospitals, and places where these “Aliens” are being cared for to learn and feel for themselves, what’s the better way than euthanasia to deal with them – because if none, then save their dignity by letting them rest- peacefully.”
    The one thing I am afraid of when euthanasia will be applied for those “Aliens” is that many of them got sick of dementia because of the results of medicines given to them or simply misdiagnosis by so-called medical pundits. Until now, I am praying that NGOs should take a very close look on how many sick of dementia got the disease. I know because my own ward was said to be sick of dementia, schizophrenia, etc without taking into account the complaining wife made him very angry everyday by doing things her husband didn’t like. And to make him calm they give him pills that made him like in high heavens, and cannot walk, drooling, and don’t talk at all. People might say I am one isolated case. But it is amazing to see hundreds of young-old people sick of the disease which is very rare in my poor country. One thing I know, when you have the money and insurance, or even without money but with Insurance – you are insured to have the disease especially when you demand too much….

  7. I have spent my adult life caring for grandparents and parents who suffered from dementia as they inevitably deteriorated toward death. They all would have been horrified at the physical and mental toll and the stress their conditions (often decades-long) placed on family members — if they had been aware of it.
    In America, the financial costs can send families into deprivation and bankruptcy. I have seen families lose their family’s farms, homes and finances — their ability to support their own children — as they tried to pay the bills related to institutionalized care when they could no longer physically manage care themselves. I have seen healthy family members lose their own health as a result of trying to care for an aging parent. I have sat in nursing homes and looked over a sea of faces and bodies who have no idea who they were or are and no hope of ever getting better. Every year, that sea grows larger as we have more ability to prolong those so-called lives — excuse me, existences.
    And I see the high turnover as the care takes its emotional toll on the workers as well. I understand in Japan they are building robots to be able to take care of these elderly. I know in many cases it would not matter; these individuals trapped in their aging bodies, minds deteriorated, are often past that personal touch.
    I am not uncaring; I have been there. The people who make the laws against euthanasia have not been the caregivers who have been there on the ground. They should try it for even a month.
    As one person said, “We aren’t getting out of this life alive.” Criminals get better treatment than our elderly; they at least get a last meal request and someone to comfort them the last hour of life, if they choose.
    I applaud an aunt, who recognizing the symptoms of her own dementia early (and having lived through taking care of her mother), put all her affairs in order, checked into a nice hotel, wrote a loving explanation to her husband and family, then took enough pills to put herself to sleep permanently.
    We should have a better option, the option of dying with our family around us, their own physical and mental health and finances still in tact and not in tatters. That should be our legacy to the next generation. Why can’t we choose an ending when and where we please, through advanced directives, while we are still able? I’d rather sign off with a little dignity — listening to Mozart (or The Who, if you prefer) and drifting off after reading a few good poems and writing a thank-you to my friends and family rather than being the cause of years of financial destruction, physical indignity and personal grief.

    • You have written after your experience as a care giver and it is true and valued. Let us not be hypocrites by pretending to be humane to treat the BODY which has no means of responding to the surroundings including the very affectionate dear ones. Why a person lives after birth? It is to have a social life,to experience the pleasures and pains in the society every time responding to the surroundings . It may be religious or social or adventurous to respond. When a person fails to respond there is in no way the person is one with the society. Since as human beings, we have developed the attachments to the others ,relatives or friends or call other members of the society. Thus it is true we have the sentiments to part with the same person who closely interacted with us in many ways during our life’s journey. Any way, as death has to come one day or the other and one cannot stop it with any amount of one’s ability. This DEMENTIA is worse than death as the latter fades away with time and the former lingers on with recurrent pain without any promise to get back the person to an active life. Euthanasia should be dignified and it should not be misused and permitted after properly diagnosed the condition of the person.

  8. Wot i feel….human beings are made by God n these diseases too…so we should interfere in nature’s cycle of birth and death..

  9. Are we more density to a dog to a human, we put the dog down for no more sofer , wen I want to die is for me and god, no other is may body and don’t want to sofer long dizises.

  10. I am a 64 year old woman who was diagnosed with frontotemporal dementia in 2007 and has done exhaustive research on the subject (clinical, medical, caregivers, support groups). FTD clearly is a death sentence and it lasts for years while the patient watches pieces of herself disappear bit by bit, losing essential abilities for a productive and independent life. While this degeneration is happening and unstoppable; however, the hell is just beginning because concurrently the individual is also changing into a behavioral monster (research the symptoms if you are not familiar with FTD’s progression). Now I am in the horrible (and clinically unusual) position of still being relatively aware of my progression and wonder constantly if the logical solution is suicide to prevent the people in my life from the inevitable “I wish she would just get it over with and die” (this is my family ONLY to which I am referring). The only thing stopping me is fear of the destiny of my soul, rational or not. I am, regrettably, the product of a Catholic upbringing.
    I know that many of the people reading may be surprised at my level of communication but, a) it has taken me several hours of rereading and editing, b) it has been my lifelong forte, and c) I’m a rare FTD case.
    Just thought you might want to know a patient’s story . . .

    • Hi, I don’t yet know if I am developing dementia but suspect that I am. This is ironic because it has always been my greatest fear. My son made me go to the GPs to get it checked out and I am only at the stage of waiting for blood test results. I am already struggling to converse but yesterday was talking to him and said that I do not want to live past the point of knowing who he is, of being able to feed myself or look after my own physical needs. I want to keep my dignity, I want to have the right to choose the point of my own death. I would like to be able to draw up a legal document whilst still of sound mind, stating this and have the confidence that my wishes would be carried out with love when the time came. An act of compassion, as someone above has already said we have more consideration for animals in this respect.

  11. Hi d christian,

    Thank you for being so brave and sharing your story. I’m very sorry to hear about your condition. I do think it is important to share experiences of dementia so the effect it has on patients and their families is better understood. The more information there is about this sort of thing then the easier it will be for decisions to be made regarding assisted suicide/the right to die by both the public and the government. Thank you again.


  12. The first time I heard this being said, it opened my eyes.
    ” ‘I just want to die with a little dignity.’
    ‘There’s no such thing! Our bodies break down, sometimes when we’re 90, sometimes before we’re even born, but it always happens and there’s never any dignity in it! I don’t care if you can walk, see, wipe your own ass… it’s always ugly – ALWAYS! You can live with dignity; you can’t die with it!’ ”

    Can you understand? Can you also see how Belgium legalized euthanasia to patients in the terminal stage who are able to decide for themselves… just last year they legalized it for children their reasons being that “it is already practiced”. First they believed that only those that can comprehend what euthanasia will actually do to you, now they say pretty much anyone(rules can be looked around with excuses. Even some parents that may not want to take care of their terminally ill children because it is a burden.)
    Every time I hear that people just want to die with dignity, by doing suicide, by euthanizing, I cannot see any proper reasons. Even a person who is no longer responsive but it would take them 3 months to die of terminal illness would still rather want to live if he knew that in 2 months time a cure might be found or a miracle might happen. That should also be what the family should be thinking. They should not be thinking anything along the lines of how the family member should be allowed to die with dignity and not be burdened with the illness anymore. THAT, is not the patient wanting death, that is the FAMILY wanting to kill the patient for their OWN benefit, so that THEY are not burdened with caring for the patient or having to wait until they die.
    Just look at how fast it was legalized in Belgium and it won’t stop there if once again countries like Netherlands and Luxembourg also allow the children murder by euthanasia.

    Most people think that unbearable pain is the main reason people seek euthanasia, but some surveys in the Netherlands and USA showed that >>>LESS THAN A THIRD<<< of the requests for euthanasia were because of severe pain.
    Instead of giving the patient an option to die people should be giving them an option to live, to strive, to survive, to enjoy life rather than give up on it.

    • I’m just curious if you’ve ever dealt, long-term, with terminal patients or patients with dementia.

  13. To add to the grief of late stage disease. I have witnessed, as an RN, severe beatings of female patients by male patients. The whole process of this disease,( after the patient cannot recognize loved ones and unaware of anything resembling being aware of their surroundings,) is very distressing. If a patient has had the wherewithal to put in writing, which is notarized, their wishes to end their life at the point of obvious ‘no return’, I consider it a sin to keep the patient alive against their wishes. I would also think it was a good idea to videotape their wishes, have them on file with the doctor, and the next of kin along with the facility.

  14. I’m a 76-year-old caregiver for my 90-year-old husband who has dementia. Is it fair that I spend my elder years doing this? My husband’s daily life consists of eating and sleeping and occasionally going with me to a store or an exercise class, which he does not comprehend. Is it fair that this once very active man live in a world that he doesn’t understand and can’t participate in? Is it fair that one or both of us might soon need care from professionals that will empty our bank accounts and push economic hardship on the younger relatives? I don’t think so! It’s not what either of us wanted. I cannot let this happen.

  15. My Mother is in the later stages of dementia, and despite us having a living will which she wrote many years before she developed dementia, the local hospital chose to ignore it and continue the every day torture that is her life.
    The one 2 things she only ever wanted out of life was to make her own decisions and die in her own bed – due to dementia this has resulted in these 2 wishes being unobtainable.
    I am a nurse myself and despair at those in my profession who inflict their own religious views and desires on those who they are trusted to provide CARE for. In my Mother’s eyes, care is caring enough to consider her wishes and not prolonging the agony, not making her live long beyond the point where she has any pleasure in life.

    If my mother was a prisoner of war the Geneva Convention would be breached as her existence, to her, in her lucid moments, is absolute torture…………

  16. It is time for a number of very basic questions about being alive and functional and being alive with no quality of life eg not being able to move around at all screaming with frustration and pain Exposed to more and more surgery with no guarantees Squeezing the person to exhaust all their funds and then what about the spouse……………are they used for spare parts My heart is very sore that these things don’t get discussed oroperly Not enough questions are not asked about how the patient stands to benefit from modern science and none are answered properly If it’s your time to go let no surgeon or other medical people turn you into a “research” case God knows your time

  17. Focus should be also be directed at ending the process of medically keeping people alive when their bodies are ready to die. If God meant for that person to die THAT’S where we should be hands off with our medical interventions, which in my humble opinion fall short of the respect for life in it’s most comprehensive definition. Not just physical systems. Let nature takes it’s course. The Balance of Nature is a graceful and complex force we are not quite equal to in our attempts at controlling Life. Not even close!
    I also think that it is ultimately each person’s choice to not be duped into prolonging a torturous life of iatrogenic sufferings. The system just makes insurance companies and pharmaceutical companies rich, so we can’t expect the system to protect our particular rights. Buyer beware! We must choose a natural cycle of life and insist upon it as consumers if we don’t agree to playing the long suffering pharmacy patient and just want to die naturally. Of course it is everyone’s right to choose their own course, but with knowledge of what they are choosing. . .

  18. My Mother has now progressed to the point where she is unable to do anything for herself at all, has lost the ability to move or feed herself, is totally incontinent, and is a skeleton covered in flesh, and they still keep her alive by shovelling unwanted and unneeded disgusting food into her.

    Is the fact she is self funding driving their desire to keep her alive and keep the money coming in?

    I think it is…………..

    Caring would be to grant her wish to die, but it’s just not going to happen is it, because we live in a self righteous ‘civilised’ society that pays greater heed to the pain and distress of an animal than it does to a sentient human?

    If I am diagnosed with the same disgusting disease I will end my life within 12 months, as I have seen all the future holds……

  19. I have bvFTD with constant visual hallucinations (Unlike someone with schizophrenia I know my visual hallucinations are not real and do not have auditory ones), ASD (Autism Spectrum Disorder), severe SPD (Sensory Processing Disorder) with daily sensory overloads and Chemotherapy related brain damage (Chemo Brain). Trust me when I can’t take it anymore there is nobody on earth that will be able to stop me from “Eating the lead pill”. My life My choice!

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