Thoughts on dying/death

Often when I speak to medical professionals about my views on death they are very surprised  and exclaim ‘you are very black and white about that.’ I realise my views on the subject  differ to that of many other people, and they have done since I was a young child. I don’t know if this is partly due to my autism, or just my own weird take on things, so I thought I’d ask on here what other people’s views on death/dying are. To give you a flavour of my views, here are some of my comments on the matter:

I think that we all die so we should get used to the idea sooner rather than later and that’s it’s not worth worrying about as it is inevitable. I wouldn’t care if I died tomorrow. Further, if I was to fall terminally ill I would refuse treatment as I believe in letting nature take it’s course - after all, natural selection has worked well for thousands of years, so why mess with it? If I died prematurely due to illness I would just see it that this was meant to be. This is why, despite being in my early 20s, I have already requested a do not resuscitate to be in place (also, I kind of view CPR as a form of physical assault - having seen it done to others, I certainly wouldn’t want it done to me!) and I said I wouldn’t want a blood transfusion when I had surgery. Don’t get me wrong, I am not one to refuse all medical input and I am very thankful for some of it, but I do draw a distinct line between what I consider acceptable and not.

My grandma is currently in a nursing home with dementia. She literally asked my mum and me to smother her, and she just wants to die because she is no longer able to live at home and do what she enjoyed. The home said she was depressed and tried to medicate her for it. They gave her a medication they new would increase her appetite as she was refusing food. I ended up arguing with them over it, explaining that my grandma wasn’t mentally ill - her thinking was perfectly logical and if I was in her position I would feel the same way. My grandma is very like me, and is very pragmatic about death also, and she hid the tablets rather than taking them, so that demonstrates what she thought about it! Maybe I was wrong to argue with the home, but I honestly couldn’t understand why they were trying to get her to feel different and eat more, as this would only prolong her suffering (aka life) and she just wanted to die! I think that keeping people alive at all cost is truly immoral and if they didn’t ask for it personally, it is selfish of those who did.

Disclaimer: I don’t mean to offend anyone with my views, and I certainly don’t expect others to comply with them. I respect everyone’s views and I know this is a difficult subject for some. I’m just wondering if anyone else thinks like me about death, or if I’m being obscure on my own here! Some may put it down to my current depression, but as mentioned I’ve thought like this from a very young age, so it appears intrinsic (maybe inherited from my grandma!).

  • I think you should feel free to talk about it. I think if there is a good chance a cure for any terminal illness could work and maintain quality of life though, it is worth going for. If cancer is caught in the early stages it can be cured.  If I got TB or plague I'd want those antibiotics right now! 

    But if there is no chance of living well afterwards.......

    My mother used to joke about preferring a bullet to ending up completely gaga. She now has vascular dementia. She has just had another fall, broken Femur. They are fixing it. She is being kept alive.....but she used to say too that she thought in many cases, it might actually be kinder to allow someone who is at "end game's stage to die rather than remaining imprisoned by body as well as mind that no longer works.

    On the other hand, if she is still gaining pleasure from some things....who knpws. There is a famous academic figure of 104 in the news just recently who is flying out to Switzerland to make his final exit legally.....

  • I think if there is a good chance a cure for any terminal illness could work and maintain quality of life though, it is worth going for.

    I agree with this idea in principle, but then I think my views start to differ from others when deciding what a good quality of life is. For example, you mention being cured of cancer and whilst I agree the treatment is very worthwhile for many people, I would personally refuse treatment for cancer as I consider the damage it does to your body to outweigh the benefits (i.e. remaining alive). Perhaps my views here are clouded by the fact my own father has survived cancer, but now cannot eat properly ever again and suffers many other side effects from the treatment. He himself said if the cancer came back he wouldn’t have chemotherapy again.

    I find that I very much weigh risk and reward with any treatment, and due to risks I often say no as I’d rather die healthy than live poorly. However for most people I meet, remaining alive is their top priority, and as such they will suffer any treatment and all of the relevant side effects to achieve this. This is why when I express my viewpoint they often just cannot comprehend it at all, as we have very differing priorities.

    Sorry to hear about your mother’s fall. It is vascular dementia my grandma has also. Her short-term memory is atrocious and that is why she was no longer able to cope at home, but her long-term memory is still very good and she knows what she wants. It’s hard to watch her suffer when her quality of life has gone and she just wants to die, and I empathise greatly with her opinion.

  • I lost my dad to cancer 2 and a half years ago. His whole body was riddled with it, so it was far too late by the time we knew. I xpn't know how your father was affected but it does sound as though he has lost too much. 

    We need to find ways to understand and therefore cope with death better. 

  • My views on death are fairly similar to yours. I've never 'feared' death, even as a child. I remember, as a very young child, discovering that people didn't actually live forever and being quite astounded and fascinated by the idea but not at all scared by it. 

    I think it would be a lot healthier for people to talk about death like this: in a factual, real way long before they're forced into thinking about it's impending reality. That way the fear is addressed separately from the fear of either an illness or of leaving family behind. To me, these are all separate things. 

    Death itself I just see as a perfectly natural process, a point where we simply stop. It isn't exactly known when this point is reached but I think it'll be interesting to find out and to discover if there really is a fading or an abrupt full stop. After that point there's nothing else to consider from the point of view of being me, but I like the thought that all of my atoms and molecules are freed from one another and scatter around forever, endlessly dispersing and changing. I think that has a sort of beauty in it. I'm not afraid of death itself. 

    As to what may cause my death, some of these things I do fear! I believe people should have the right to assisted suicide or voluntary euthanasia if they no longer have any quality of life or if they are suffering from a degenerative or terminal illness. I firmly believe that only the person themselves should be able to make that call though and that's why I support discussion about the subject much more openly than is the norm in our society at the moment. People shouldn't be forced to keep living at all costs, we don't allow animals to suffer in that way and I've never understood why we force people to. The things that would make me want this option are, Dementia, being in a vegetative state, being in a constant high degree of physical pain requiring powerful medication (if there was no chance that this would / could ever be alleviated), or being entirely physically incapacitated with no chance of recovery - in that order. These things, serious illness, I am very afraid of. 

    The final point, leaving family behind, I fear at the moment because my children are still young. I won't know how my feelings may change as I / they get older until it happens but right now I think that I'll feel less scared of them being without a mother once they all have their own lives and are in their late 20's at least. I reserve the right to change my mind on that one when the time comes though!     

  • My views are almost identical to yours and I do't consider myself to suffer from depression.  Those of us on the spectrum have a far clearer view or at least an alternative view of what constitutes reality and this includes most areas of experience and belief, amongst which is death.

    I held power of attorney for three different elderly relatives over the last three years.  In each case their conditions deteriorated to the point where they weren't going to recover and they didn't know who or where they were.  I still had to give explicit directions to the Doctors in charge to stop trying to make them better with antibiotics that weren't working, and to settle for pain relief and allowing them to die with dignity.  One of them was my own father.  It never gets easier though it didn't upset me in the way that I get upset when one of my cats dies.

    Like you I have given instructions that I am not to be revived nor kept alive artificially.  This is totally different from the Eugenics argument as it is a "sane" (whatever that means) adult giving instructions about their own life.

    Be strong and persevere in what you believe, at least one other person agrees with you and I am 65 and living with Congestive Heart Failure (as well as being on the Spectrum) which will kill me sooner rather than later.  People don't believe me when I say that I am not worried about the prospect but I'm not.  I see it as a strength not as a weakness and I would encourage you to do so as well.

  • Personally, I fear the physical process of death. Scientifically, I believe there is good evidence to suggest that, like in a dream, time drags out in those final moments and seconds seem like hours. If that's true I find it very upsetting. I can think of many scenarios where the brain may not die until the body has given up, and worry a lot about being conscious of pain or death for what might seem like hours before it all ends. Even if it's only seconds in reality.

    I try to counter this by remembering that it does, indeed, end. It won't last forever, that awareness, so I will get peace and calm eventually. 

    From an emotional point of view, I don't fear death itself at this stage. To me, the important thing is to go into death knowing that you did the best with your life that you were able to, and that you maximised your happiness. I make that my life goal and at this stage it's achieved. I have a daughter that I love more than anything, and I get to spend so much time with her, so I know that I could go to death today feeling like I'd lived life exactly as I want to.

    I don't want to die yet of course. I want many more years with my daughter. I want to see her grow up, and be there for her. 

    One day, when I'm old (if I make it there) and she's grown and moved out, I imagine there will come a time when I'm mentally and physically tired and have been through so much that I will welcome the eternal rest.

    I do believe that it should be not be a subject we above, though. My girl is 3 and we've talked about death before. She knows that I will die eventually. She knows that when I die, she should always remember that she made me infinitely happy and as a result I've died in the best possible state of mind. That I lived my life well, have no regrets and that she should never feel like there was a hole I didn't have time to fill. I'd rather make talk of death natural for her so that it is never something to avoid or be afraid of. I believe when we fear death, or consider it inherently bad, we don't have those important discussion enough - and as a result we've ended up in situations where assisted dying isn't legal and we can't be sensible about the fact that many people reach a point where they are ready to die and should be able to.

    I know I'd want to go when I felt ready. No easier way to pass than when you feel at ease with it. 

  • I agree with pretty much everything everyone else has stated. I believe that everyone should be given the choice to assisted suicide if they are in a position where their quality of life is severely affected.

    I also find it extremely hypocritical that someone with a terminal illness is prevented from dying with dignity and is forced to live on as a shell of a human being, and yet an unborn child can be terminated before even getting a chance at life.

  • Personally, I fear the physical process of death. Scientifically, I believe there is good evidence to suggest that, like in a dream, time drags out in those final moments and seconds seem like hours. If that's true I find it very upsetting.

    Indeed, that doesn’t sound very pleasant at all, but from all of the near death experiences I have ever read, people usually describe it as a pleasant experience. For example, I know someone who has been resuscitated many times due to respiratory arrest and has had an out of body experience, and this has all actually led her to not fear death at all. I realise many people do not believe in those experiences, but still, what’s wrong about thinking of death as a pleasant experience if we can think of it as a negative one?

    I think it’s great that you’ve already discussed death with your young daughter. There’s no reason for it to be a taboo subject and as you say there is nothing wrong with talking about it, so children should be able to experience that (and ask the wonderful questions they so often do).

  • The final point, leaving family behind, I fear at the moment because my children are still young.

    I often wonder if my own views would change if I had children of my own, or people I was very close to. It’s difficult to say as I’ve never experienced that, and though I do love the children I coach dearly, I know they would move on quite happily in their lives without me, so I don’t really have any ties to anyone that would change my views at present.

  • I also find it extremely hypocritical that someone with a terminal illness is prevented from dying with dignity and is forced to live on as a shell of a human being, and yet an unborn child can be terminated before even getting a chance at life.

    I’ve also struggled with that one myself. It seems illogical after all - you can end the life of a child that has no say in the matter, but not of an adult even if they request as much and have a good justification for it...nonsense.