Sunday 13 July 2014

I get it: but I'm still against assisted dying


As I sit here writing, my back on fire, my feet feeling like they have shards of glass inserted deep into the tendons, I want to say this: I get it. I have understood since I asked my mum to remove the razors from my hospital bathroom. There is a desperation, a hopelessness of facing a life where your current, terrible situation is unlikely to improve that moves beyond depression into profound despair.

I am not pretending that I understand (yet) what it is like to be in a wheelchair, though I sometimes need to use sticks to walk. I am not pretending I know what it is like to be unable to wipe my own bottom, though there are days when I can barely get off the toilet and feel chained to it. I often have to make an unenviable choice between passing the day in bone-deep, strength-sapping pain or taking pain killers that dull the body and mind (not great when, as a PhD student, my primary occupation is thinking). So no one can and should accuse me of not understanding, of lacking compassion.

Because my fear is that this is where the assisted dying debate is heading. In his recent article reversing his opposition to assisted dying, former Archbishop of Canterbury Lord Carey cites the need to prioritise "compassion" over "doctrine" as being one of the key reasons for his change of stance (http://www.dailymail.co.uk/news/article-2689295/Carey-Ive-changed-mind-right-die-On-eve-Lords-debate-ex-Archbishop-dramatically-backs-assisted-death-law.html). There seems to be a growing, insidious assertion by some promoting the assisted dying bill that those in opposition are only against the bill because they cling to outdated principles ("dogma", as Lord Carey calls it) and place those principles above their compassion for fellow humans. "If only you experienced or witnessed the suffering," the argument goes, "you would surely change your mind."
This argument, whether made overtly or covertly (and indeed deliberately or unconsciously) is deeply patronising. "I am further down the road than you - if you had seen what I have seen, experienced what I have experienced, you would come to the same conclusions as I have."
 
To which I say: no. I live in chronic pain, with little hope of long-term relief. I sometimes can't get off the toilet. I have trouble walking. I sleep for ten hours a night and still feel like I am wading through treacle. I know what it is like to suffer. Yet I am against assisted dying, in spite of the fact that there are days when I think: why go on? If this is it for the rest of your life, why continue?

My personal answers to those questions are based heavily on my faith in a God who loves us and is in control over what happens in our lives (a faith which, incidentally, is stronger now than it has ever been, not in spite of but because of the suffering I am experiencing). But even without such faith, there are strong arguments against ending your life. And crucially, there are stronger arguments against changing the law, which, we should not forget, is the primary issue which is currently being debated in parliament.

The main reason, as the current Archbishop of Canterbury Justin Welby has pointed out, is the precedent that a change in the law would set, such that many elderly and vulnerable people would feel duty-bound to end their lives (http://www.telegraph.co.uk/news/religion/10963362/Archbishop-Welby-Assisted-dying-is-sword-of-Damocles-over-vulnerable.html). To those who dismiss this fear, I say this: I am a young and independent person, yet I have sometimes fretted about the burden of worry and distress I place on my loves ones, and thought in my darker moments that it may be better for all concerned if I were to die and allow people to mourn and get on with their lives. If this has crossed my mind, how much more so those who have severe disabilities which place a great burden of care on their loved ones?

Up until now, premature death has not been an option. But if this bill were to pass, it would open up the possibility, which would be enough to cause great disquiet and distress in the minds of countless people who feel themselves to be a burden. Lord Carey argues that his change of stance is motivated by the desire to minimise anguish and pain, in accordance with the Christian message of hope. What about the untold anguish for countless numbers who would, if this bill were to pass, need to face the impossible decision of whether to end their own lives or continue living and being a burden on their loved ones? Surely this bill would compound the distress of themselves and their family in an already difficult situation? (For an excellent reflection on what this might look like, see Giles Fraser’s blog: http://www.theguardian.com/commentisfree/belief/2014/jul/04/assisted-dying-triumph-market-capitalism)

The pro-assisted-dying argument that counters the above assertion goes as follows: “this law would only apply to a limited number of people, and strict safeguards would be put in place”. But we can see from other countries such as the Netherlands that such laws rarely stay limited in this way (see the comments of Dutch Professor Theo Boer, a former advocate of assisted dying: http://www.dailymail.co.uk/news/article-2686711/Dont-make-mistake-As-assisted-suicide-bill-goes-Lords-Dutch-regulator-backed-euthanasia-warns-Britain-leads-mass-killing.html)

“But why should people in intolerable pain suffer for the sake of what might or might not happen further down the road?” Let me flip this argument on its head: why should the many disabled and vulnerable people who currently live in this country be put at risk of harm and distress for the sake of a few, understandable though their wish to die may be?

The quality of life argument is also an interesting one. Lord Carey argues that it is quality of life, not number of days, which is important. I agree. But poor quality of life is not something set in stone; an impairment can be mitigated by societal and personal factors. A person with chronic pain undoubtedly has reduced quality of life due to their condition; however, the support of family and friends, the use of medications and the development of new technological interventions can go some way to counterbalancing this (see here for an awesome new invention designed to help people who are paralysed: http://www.bbc.co.uk/news/health-27828553). Poor quality of life is not a hopeless death sentence. Can we not focus on improving people’s lives, rather than ending them?

I argue against assisted dying in spite of my current state of chronic pain, for the sake of others who cannot speak for themselves, and because ultimately all life is precious. You may disagree with me. But please don’t say that I will only change my mind if I could have experience of suffering. I have this in abundance.


6 comments:

  1. Hannah, your words are gracious and powerful and full of truth- thank you. I've felt helpless as I've watched my husband suffer from chronic nerve pain and the countless medical procedures and operations he has endured over the years, and I've also been enchanted by the hope he has in Christ even in the pain. Grace and peace to you- Gloria

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  2. I am sorry for your pain and full of admiration for how you face it and find the courage and faith to carry on. Long may you find joy in your life and in the people who love you and who you love. Is there a but, for me there is. Just as I believe it is your right to fight for your life and to live it to the fullest extent possible, I also believe it is the right of others to make their own choices and not to be forced to live by someone else's rules. The state makes choices every day about who should live and who should die, most of which come down to money. We are horrified in an individual case where treatment is refused, but in reality we know there must be limits to what we spend and choose to look the other way and let someone else make those hard choices for us. I want the right to choose for myself, and if I ever become unable to choose for myself I want those I love to choose for me, knowing they will do so with compassion. Death is not the worst thing that can happen to you, and one day it will come for us all whatever we do. In the meantime I try to respect my fellow travellers whatever beliefs they may have about God, Life and Death and hope they will respect mine in return.

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    1. Thank you so much for your post. I totally agree that respect and compassion should be foundational in the way that we relate to one another on this issue; this is necessary in every debate I think, but all the more so in the context of an issue that is so emotive and has the potential to affect people's lives in a profound way.

      I would like to add a comment if I may - in addition to the point made by Alan, which I think is very valid, I would like to expand on a point you briefly reference in your argument: the distinction between withdrawal of treatment and assisted dying.

      When speaking of withdrawal of treatment, we are talking about something legal under current law. From what I understand (not being a doctor myself, but having had extensive experience of the hospital environment), patients currently have the right to request that further treatment is not undetaken, and that they are simply made as comfortable as possible. This often happens already in palliative care settings; when the limits of modern medicine are reached, patients can make an informed decision with their doctors and family members not to continue with medical intervention. What we are talking about with assisted dying, by contrast, is a direct intervention which hastens someone's death. I think it is very important to remember that currently, there are palliative care options open to people (i.e. they are not forced to accept treatment if they don't wish to).

      There is another question I would pose for discussion in response to your assertion that people should not live by the rules of others: what about the medical professionals who do not wish to assist someone to die? Will they be forced under this law to go against the Hyppocratic Oath and their own conscience? Assisted dying, while in some ways a very personal choice, has a profound impact on those around you, and cannot be viewed simply as a personal decision which affects no one else.

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  3. To Anonymous:

    You say that "it is the right of others to make their own choices and not to be forced to live by someone else's rules", but Hannah made two points relevant to this that I would respectfully ask you to consider:

    1) that if the option of assisted dying became available then it would impose on vulnerable people a strong expectation to take that option

    2) that the number of people in this position would be many, in contrast to a few who actually wish to die prematurely

    In other words, legalising assisted dying would for practical purposes push many people into accepting it against their real desires for sake of a few who actually want it. If your stated ideal is that people should not be dictated to by others, then on your own terms a change in the law would be worse than the status quo.

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  4. Hi Hannah, we'd love to speak to you here at BBC Newsbeat - are you able to get in touch with me today on 0203 614 1110? I'm Tarik :)

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  5. In principle, I am against taking the life of any higher, sentient animal, including that of a human, or of taking one's own life, with or without the assistance of another. Despite this long-held principle, some months ago I participated in the killing by lethal overdose of one of my two beloved animal companions, because he was suffering so much from an incurable cancer.

    I have thought about killing myself almost every day of my life since I was just four years old. I haven't yet because I believe that only cowards kill themselves, because I know my suicide would cause others to suffer, and because I believe that God wants me to try to persevere for as long as possible to fight the good fight in a world that I have always hated and despised. Certainly, if and when the day comes when I do decide to throw in the sponge, I won’t be asking anyone else to help me.

    Nonetheless, anyone who has seen close-up the workings of the criminal law of England and Wales knows that the law is an ass. The criminal law is for the most part a very black, sick joke. It does little to protect the weak against the strong; to sustain those who suffer every day of their lives; to deliver justice on this earth. There is no justice in this world. There never has been and there never will be because humans, almost without exception, are fundamentally greedy, stupid and cowardly. I doubt that the current law of England and Wales that makes it a criminal offence to kill another human, even when the latter solicits such help, does anything at all to protect the most vulnerable. The evidence to date is that all that it does is to give incentives to those who want help in dying to seek other methods. The criminal law is a blunt instrument at best. It should be used only to punish during their time on earth the many evil humans who maliciously and capriciously destroy the lives of others, who wreak havoc, suffering and everlasting pain in their capricious vanity and greed. The criminal law should have no application when it comes to a human helping another human to die as painlessly as possible because the latter has given up the fight.

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