Thursday, 29 March 2018

Guest post: Alasdair Coles on An Instinct for Kindness

Prof G asked me to listen to An Instinct for Kindness and offer some comments. As I was mulling over what I might say, I read the posts about the play on this blog: some appreciative, some angry, some disturbed. 



I received a similar range of responses to a lecture I once gave to people with MS on “life and death in multiple sclerosis”.

I too feel uncomfortable about death. I did not enjoy speaking with my elderly parents about a power-of-attorney. But one way to help make a death good is to talk about it beforehand. My wife knows what I would like for my funeral and I have joked with my daughter about her job as caterer for the party afterwards (Bourbons and custard creams only, “it is what he would have wanted”). 

Of course, this is easy for me to say: I am not facing imminent death. Nor do I have significant disability, which is more to the point. Allyson, in the play, chooses death because “I don’t want to die, but I don’t want to live like this”. The woman who loved dancing became the woman who could not leave her house because of immobility from multiple sclerosis.

Over the years, three people have asked me to help them die: two with multiple sclerosis and one with motor neurone disease. They saw themselves become increasingly disabled and dependent on others, and they hated the prospect. Just as I would. I understood. One did take his own life and that still haunts me.

But I did not help them to die, and I would not have supported Allyson’s trip to Dignitas, for three reasons. Firstly, suicide leaves deep wounds in those who are left. For me, the most moving passage in the play was Allyson’s son, crying down the phone to her in Switzerland, “this must stop now”.  I wonder how he feels now. Secondly, I worry that legalising assisted suicide will – inadvertently – lead to pressure being felt by vulnerable people who “don’t want to be a burden”. But, most importantly, I want to offer another hope: a hope that life with disability and dependence is worthwhile and valuable, that all life is precious. This is the hope that comes with faith.

After lots of ups and downs, I have come to believe that I am loved by God. This is not dependent on how much I achieve or how independent I am. I hope that my faith will stay strong when I face illness, death and disability, as I have seen in others. It has certainly brought me into a wider family of believers, all ordinary folk held together by an extraordinary God. This family encourages me and supports me. We believe we are all loved by God.

At this time of year, Christians remember the awful betrayal, torture and murder of Jesus; and his magnificent return to life. I do not fully understand what happened all those years ago. But I am sure that, in part, God wanted to share in the pain and despair of people like Allyson; and to show that death is not the end.

It seems that Allyson did not have a faith and I am sorry for that. She did not feel the reassurance and peace of God’s love. I understand that talk of God may seem ridiculous, old-fashioned or fanciful; but for me it is as real as anything I know. And it leaves me praying for life in all its fullness, for everyone, including all the people I meet with multiple sclerosis.

Alasdair Coles



Alasdair Coles is a neurologist who has been researching treatments for multiple sclerosis since 1994. He was part of the Cambridge team that developed alemtuzumab (Campath). He now is working on trials of a remyelinating therapy in multiple sclerosis and immune treatments in people with psychosis. He is also a priest in the Church of England.

33 comments:

  1. Thank you for doing this. It is rare to get this kind of perspective from a a neurologist.

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  2. Thankyou so much Alasdair for taking the time to write this article. Your words of hope and encouragement have been a real blessing today. I highly
    recommend a book I am currently reading from my local library: 'I choose everything - embracing life in the face of terminal illness', written by Michael Wenham and the late Jozanne Moss (published in 2010); all about their experiences of living with Motor Neurone Disease. Such an inspiring read.

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  3. Many thanks for this. My histopathological work on the search for the earliest lesion in MS is crucially based on tissues from MSers who have taken their own lives on being told the likely diagnosis, needless to say a very very rare event. I continue in hope that the clues in these tissues may be an 'Easter' for all MSers.

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    1. Frederek, we're keeping our fingers crossed!

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  4. Choice! That is what those of us who wish to see assisted dying legalised believe in. As a UK citizen I have enjoyed and benefitted from a whole wealth of choice: whom I dated and married, where I was educated and in what subject, employment, where I live, children etc. Within that were the refined choices: marriage in a church and the birth of our son at home. Now, as a PwMS the choice of treatment and management of how my disease presents.
    Choice that I, as many others, would like to see extended to how I die. I remember being given a guided tour of the local hospital and being told I could change my mind at anytime and have the delivery there instead of at home. I remember others saying they couldn't contemplate a home delivery and those who challenged me: what if something went wrong ? How would I live with that and the impact on my husband? But the choice was there and it was as right for us as a couple as it would have been profoundly wrong for others. Having the option of assisted dying means exactly that - options for each and everyone of us. Having been blessed with a lifetime of choices I'd like the same for the end of my life.

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  5. With hope comes faith, we need hope to continue to have faith. I have thought on more then one occasion of taking my life. I don't want to be a burden, don't wan to live like this and all of the above and more. I am not a depressed person, I have a depressing disease. No disease, no depression .......faith will reutun

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  6. Is this post satirical? I know that you Brits do that kind of thing.

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    1. No it is not satirical. We asked Alasdair Coles to provide a different perspective on assisted suicide.

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  7. Some patients who are suffering from incurable illness may find comfort in religion but this should not be the reason for becoming a Christian, Buddhist, Muslim etc. etc.

    “I became aChristian because I can no longer bear the burden of a progressive neurological disease and I need to find some sort of emotional and physical support.”

    Religion out of desperation is not true faith. What is needed is treatment options from medical research.

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  8. I see where prof Coles is coming from and I totally understand and respect his point of view. I also believe that religion can make vulnerable people feel stronger and more hopeful.

    However, for those of us who don't believe in God, all these things do not help. I cannot say to myself that 'from now on you are a believer', I cannot switch like that. Therefore, I cannot get any help/assurance from religion that I'll be protected against suffering a painful death.

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  9. Thank you for having the courage to post this.

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  10. I thought this blog was a scientific research one

    Is this post coming because of easter season?

    Ok ...Next week business as usual

    Ps: No money to be made is a cure ,or death...

    Obrigado

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  11. I would rather those influenced by their own religious belief did not make choices about patients' welfare and end-of-life decision making.

    A 'life in its fullness' means being able to bring it to a close when you want to.
    Our life is ours alone, and the choice must lie with the individual concerned. Everybody should be able to end their existence when it is no longer bearable for them, and to deprive them of this wish is simply inhumane.

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    1. Couldn't agree more! I have always supported assisted dying, long before I knew I had MS and long before I watched my mother's tortuous decline and miserable, painful end of life.

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  12. We need to keep an open mind about the role religion plays in supporting people with chronic disease. In my experience religious people have more social capital, larger support networks and hence a lower chance of becoming socially isolated.

    Social isolation was one of the reasons Allyson sought assisted suicide as the solution for her depression, poor quality of life and suffering.

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    1. Just over a year ago I bought a pair of rose-tinted glasses to improve my outlook on the world. Several commentators on the blog thought some of our posts were too morbid and not positive enough. I responded that we don't pull our punches and tell things as they are. If people don't want to know the truth they can go somewhere else; there are plenty of sights on the web dedicated to alternative facts.

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    2. AnonymousSaturday, September 23, 2017 11:43:00 am

      Prog G, i wonder if you need to see a heart surgeon to ask if they could provide one to you. On your twitter account you say that you hope to be still running at 80 - lucky you. My mother died of MS aged 61. She spent 5 years in a manual wheelchair, 3 years in an electric wheelchair and 7 years in bed. Her life really ended 15 years before she died. Her passions were travel, tennis and rambling - all lost to MS. Her grandchildren never saw her walk. The disease destroyed my father and any retirement plans he had. She was unrecognisable at the end kept alive by anti-biotics and peg feeding. I hope you never have to experience someone close to you being ravaged at such an early age. The neurologists did nothing. The MS nurse tried her best. Any charitable donations I make will be to the nurses from Marie Curie. Sorry what was your question - why is MS and death such a taboo!


      http://multiple-sclerosis-research.blogspot.com/2017/09/clinicspeak-hospice-care-underbelly-of.html#comment-form

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    3. I would like to know the extent of your experience in comparing the social capital and size of support networks of religious people vs atheists. How many of each ? Do you ask each of your patients about this ?

      Many of the more disabled PwMS I know would describe themselves as religious but are extremely isolated. People have told me about feeling they have done something bad and that they have been cursed.

      Lots of atheists have great support networks - perhaps you should meet some more of us.

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    4. There is a large body of evidence demonstrating that religion increases social capital and health outcomes. The following is a nice article to start with.

      King & Furrow. Religion as a Resource for Positive Youth Development: Religion, Social Capital, and Moral Outcomes. Developmental Psychology 2004, Vol. 40, No. 5, 703–713.

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  13. what an incredibly strange article from a clinician scientist. Prof AC you clearly believed in alemtuzumab and pushed for articles to be published in the Lancet and NEJM. If you believe in Jesus returning back from the dead why aren't you trying to publish this in a bigger journal. this should be front cover of nature, science and cell. You should be consistent in how you act.

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    1. Well said:


      'Cause Jesus he knows me
      And he knows I'm right
      I've been talking to Jesus all my life
      Oh yes he knows me
      And he knows I'm right
      And he's been telling me
      Everything is alright

      You see the face on the TV screen
      Coming at you every Sunday
      See that face on the billboard
      That man is me
      On the cover of the magazine
      There's no question why I'm smiling
      You buy a piece of paradise
      You buy a piece of me
      I'll get you everything you wanted
      I'll get you everything you need
      Don't need to believe in hereafter
      Just believe in me
      'Cause Jesus he knows me
      And he knows I'm right
      I've been talking to Jesus all my life
      Oh yes he knows me
      And he knows I'm right
      And he's been telling me
      Everything is alright

      I believe in the family
      With my ever loving wife beside me
      But she don't know about my girlfriend
      Or the man I met last night
      Do you believe in god
      'Cause that's what I'm selling
      And if you want to get to heaven
      I'll see you right
      You won't even have to leave your house
      Or get outta your chair
      You don't even have to touch that dial
      'Cause I'm everywhere

      Michael Rutherford / Phil Collins / Tony Banks

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  14. Religious people do indeed tend to have good social support networks, but you don't need religion or faith to address social isolation.

    Improving social care, wider social services and providing an infrastructure that actually helps support local communities care for their most vulnerable and marginalised needs much greater long term investment than the current provision.

    It should not be left to religious groups and charities to pick up the pieces of chronic underinvestment in our public services.

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  15. Thank you for saying what you have said, it was fair, and reassuring. A religious perspective is one that I rarely consider, and there is something very unique about this perspective from a medic.

    I don't agree with you. Death should be a choice when your quality of life is equivalent to that of someone who is dead. Several studies have shown that many MS patients have a QoL worse than death.

    Many thanks again, and I hope you all enjoy your Easter celebrations.

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  16. The usual story of religion suppressing democracy through guilt. Nope.

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  17. As usual religion generates a marmite response. Not sure religion and science mix. Best to align this blog with science and leave religion to the believers.

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  18. When did the Barts MS Blog become a pulpit? I don't see how lying to people , telling them something that they can't ever possibly know, is ever going to help more than just being compasionate, caring, loving etc. And what arrogance to think you would know the mind of a God - that you believe they have an interest in you. Keep to the Science .

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  19. Anybody looking for a good antidote to this post: Richard Dawkins' "The God Delusion".

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    1. Or Christopher Hitchens "god is not great- how religion poisons everything"

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  20. Let's take religion out of the equation and consider spirituality. The best discussion of this I have found from a neurologist is from Peter Fenwick....fear not....there are plentiful indications dignitas may have taken her to a better place...

    https://www.youtube.com/watch?v=rlXK68tMm7Y

    gp575

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  21. I've agreed with all the anti-religious posts on here, apart from the ones saying that faith is not a subject that should be discussed here. Doctors that have a faith will let this affect how they treat patients. They may approve peg feeding for pwMS who anyone else would see should be allowed to die.
    I've always found it contradictory that Christian doctors are so keen to keep people alive when their life has reached a horrible place - surely the Christian doctors should let people go to heaven?
    I also wanted to say that I particularly appreciated the innocent American/Canadian comment:
    "Is this post satirical? I know that you Brits do that kind of thing." and that Gavin felt this comment needed a response. #beyondsatire

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  22. Thank you for all your comments, which I have read carefully.
    I agree that some people suffer with such disability that assisted suicide seems kinder than continuing to live. Perhaps that is right for the individual; I am just not sure that the cost to others is reasonable.
    And it is important to have choice; but no one argues that "choice" should dominate over every other consideration.
    And I do not believe that Christian (or any other) doctors should prolong a life of suffering, if the person concerned does not wish it. For me, there is an important difference between letting a disease take a life from actively ending it.
    None of these issues are easy and I respect the many people with different views to mine.
    Please understand that I was not trying to change anyone's mind! I was just replying honestly to an invitation from Prof G.

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  23. As someone who replied concerning 'choice' I want to endorse your reply Alasdair that it shouldn't dominate over every other consideration, especially as we are all aware,via the media, of cases where 'choice' is appropriately withdrawn or withheld.
    Having options allows for individuals and those involved in their lives, both personal and professional, to make valid and informed decisions. Something that represents a sad truth for me is that, whilst clinicians are not actively ending lives they are actively sustaining lives. Consequently I've had too many experiences of family and friends overwhelming angered and distressed by the way in which their loved one was kept alive to die more slowly and more terribly. It hit me hard to have two friends, independently of one another, describe the pain their loved one was in and say 'you wouldn't treat an animal like that!' and both were referencing hospice care! This can be described as the other side to your focus on 'not sure the cost to others is reasonable' I feel the need to assert that there can and is huge cost to others via the modern medical worlds capacity to prolong life. This is one of the things that underpins my belief in the need for as wide a range of options as possible, that are valid and safely implemented, to ensure a good quality of life and death as is possible. I have discussed with family and friends my feelings and wishes and established theirs in regards to as many possible forecasts of my future as we are alert to.
    What I didn't add and wish to now, is that personally I do appreciate your post and the open and candid account of your perspectives, based on such profound faith as it is. The Blog has repeatedly addressed the issue of Advance Directives and Asssisted Dying etc and I wish to echo others who have said that there is validity to including the religious view in this.


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