Wednesday, 1 July 2015

ClinicSpeak: the right to die

Why is assisted suicide such a hot potato? #ClinicSpeak #MSBlog #MSResearch

"I was touched and humbled by the stories you told in relation to my post on 'destigmatizing the wheelchair'. Several of you raised the issue of suicide. Last week's Economist had a leader on the issue and have come out in support of legalising assisted suicide. We have previously had heated debates on this topic on the blog and on balance most readers have supported assisted suicide. In view of the importance of the topic do you think it is time to debate 
assisted suicide again?"


The Economist. Doctor-assisted dying: the right to die.  Jun 27th 2015

Excerpts:

..... The argument is over the right to die with a doctor’s help at the time and in the manner of your own choosing. As yet only a handful of European countries, Colombia and five American states allow some form of doctor-assisted dying. But draft bills, ballot initiatives and court cases are progressing in 20 more states and several other countries (see article).....


...... In Canada the Supreme Court recently struck down a ban on helping patients to die; its ruling will take effect next year. In the coming months bills will go before parliaments in Britain and Germany.....
...... The idea fills its critics with dismay. For some, the argument is moral and absolute. Deliberately ending a human life is wrong, because life is sacred and the endurance of suffering confers its own dignity. For others, the legalisation of doctor-assisted dying is the first step on a slippery slope where the vulnerable are threatened and where premature death becomes a cheap alternative to palliative care .....

...... These views are deeply held and deserve to be taken seriously. But liberty and autonomy are sources of human dignity, too. Both add to the value of a life. In a secular society, it is odd to buttress the sanctity of life in the abstract by subjecting a lot of particular lives to unbearable pain, misery and suffering. And evidence from places that have allowed assisted dying suggests that there is no slippery slope towards widespread euthanasia. In fact, the evidence leads to the conclusion that most of the schemes for assisted dying should be bolder.....

.... many doctors help their patients die even if the law bans them from doing so. Usually this is by withdrawing treatment or administering pain-relief in lethal doses. Often doctors act after talking to patients and their relatives. Occasionally, when doctors overstep the mark, they are investigated, though rarely charged. Some people welcome this fudge because it establishes limits to doctor-assisted dying without the need to articulate the difficult moral choices this involves.....

..... How, then, should assisted dying work? For many the model is Oregon’s Death with Dignity Act. It allows (but does not oblige) doctors to prescribe lethal drugs to patients with less than six months to live who ask for them, if a second doctor agrees. There is a cooling-off period of 15 days.

..... The hardest question is whether doctor-assisted dying should be available for those in mental anguish. No one wants to make suicide easier for the depressed: many will recover and enjoy life again. But mental pain is as real as physical pain, even though it is harder for onlookers to gauge. And even among the terminally ill, the suffering that causes some to seek a quicker death may not be physical. Doctor-assisted death on grounds of mental suffering should therefore be allowed......

..... The most determined people do not always choose wisely, no matter how well they are counselled. But it would be wrong to deny everyone the right to assisted death for this reason alone. Competent adults are allowed to make other momentous, irrevocable choices: to undergo a sex change or to have an abortion. People deserve the same control over their own death. Instead of dying in intensive care under bright lights and among strangers, people should be able to end their lives when they are ready, surrounded by those they love......

29 comments:

  1. No need for a debate Prof G. This is a personal decision, nothing to do with law. If I get to a point where MS robs me of too much I will end my own life - nothing to do with the government or doctors. It would be easier if a doctor could give you a pill or injection. The bigger issue is getting the MS research community to really understand the cruelty of this disease - losing function either quickly or slowly. Neuroprotective agents and repair agents would radically change the outlook for MSers, particularly in the progressive phase and would reduce the rates of suicide caused by this disease. New approaches to getting such agents to the patient is the key. Unfortunately, the current system is not delivering - a good example is simvastin. Cheap drug, relatively safe, demonstrated a neuroprotective effect - going nowhere.

    ReplyDelete
    Replies
    1. I hear on the grapevine efforts are under way to get a phase III trial of simvastatin off the ground. You might still ask and then what, but if this is successful could open a new pathway of introducing effective yet cheap drugs for progressive MS.

      Delete
  2. March 2013 my late wife was rushed to A&E having multiple seizures and admitted to ITU for 24 hours then to HDU where I was told that because of the damage to her caused by chronic progressive MS. As the registrar put it Clinically they could do nothing to save her, after 5 days she was transferred to a standard ward, where she picked up pneumonia, and on the 16th day was allowed to pass away. Before being admitted to hospital she had been confined to bed for 5 years due to having no mobility, loss of speech, swallowing food formula and medication via a tube. My wife and I talked about EOL care in others and she said it wasn't for her, she would go when ready. Vicki became a full time powerchair user in 1998 and loved being independent doing what and when she wanted.

    ReplyDelete
    Replies
    1. This is a great post, I'm sorry for your loss. EOL/right to die isn't for everyone but I feel it should be available for those who wish to have the option. It can be a source of comfort to many who do have the option that it is there, should they consider their position to be intolerable but many don't choose to take it. Just having the option is enough for many.

      Delete
  3. Aplogies if this is a duplicate post but my last post vanished when I pressed "submit" The right to die is another "elephant in the room", with MS. Sometimes with MS it feels like there is a herd of elephants in the room. Let's hope they don't stampede. I'm signed up with Dignitas and if my cognition gets worse, then I'm off. It is a "security blanket" for me. I wish it was simpler and could happen in the UK, with checks and balances, so not as terrifyingly easy as it seems in Belgium. It is a personal decision, as everyone has different points from wheelchairs, to unrelenting pain to cognition. And one cannot judge if someone is of "sound mind", when that point is reached for that individual. But I think there needs to be a debate, not least to raise the real picture of MS, that it is not just a "jolly" group of people in wheelchairs, which is how it is often perceived.

    ReplyDelete
    Replies
    1. There not only needs to be a debate, there needs to be legislation. That there hasn't been so far can be blamed on not only political cowardice but reluctance in the medical profession to address this.Charlie falconer in the Lords is pushing for change (to his huge credit), I hope he succeeds.

      Delete
  4. It’s hot out there, ain’t it, Don Giovannoni?

    One senses it’s about to heat up on this blog of yours too when you keep telling your readers they’re gonna be reduced to using powered wheelchairs and craving pricy barbiturates to end their sufferings.

    I read those comments on your ‘destigmatizing the wheelchair’ post and felt thoroughly ashamed of the readers. It was like they viewed their disabled MS community with contempt and umbrage. It was almost as if they equated them with evil, a symbol of imperfection and ruin. It speaks to a much greater problem in British society whereby disability has been spun into a malevolent rhetoric, wheelchair users being seen as takers of time and resources that are burdensome to us all. That is scary, baby. We ought to be more brave and caring of each other.

    Mate, I’ll hazard a guess that those saying stuff like “MS robs me of too much I will end my own life” and “Nothing frustrates me more than the photos on MS websites of the happy MSer sitting in their wheelchair smiling doing the thumbs up sign!”, are not helping themselves because they’re filling their minds with anger and chagrin. Chances are these commentators are also the ones that won’t kill themselves if their MS progresses as I have witnessed MSers say stuff like that and decide their lives and family connections are more important than induced death. They may seriously surprise themselves.

    Yup, legislate for the right to die. On the plus side for the Tory government, it’ll probably eradicate 500,000 ILF claimants overnight. It’ll be politically savvy in this age of demonising the vulnerable and needy. I, however, think we need a cultural shift in the ways we view the disabled. We need to be more altruistic and understanding. We need to do away with our fear of disabled dudes.

    On an end note, Debbie Purdy, the poster girl of UK assisted suicide, hasn’t helped the matter. Her campaign was demented and wrong footed. Sure, let’s have a proper debate on the matter and let’s get behind it if that is what we believe. But Purdy seriously messed it up, starving herself live on camera to get her point across. She claimed that the Dignitas fees were too costly and that starvation was her only option, but that is nonsense. Her profile was so big that a crowd funding whip-round will have generated more than enough money. But she didn’t want to do that, and in the process very much contributed to the image of MS being terminal and hopeless. It put back the MS cause by decades.

    Let’s rethink our approach to these matters, bredrins. Peace out!

    ReplyDelete
    Replies
    1. I love you, Dre. You nailed exactly what I felt but was afraid to say. Thank you.

      Delete
    2. "I, however, think we need a cultural shift in the ways we view the disabled. We need to be more altruistic and understanding. We need to do away with our fear of disabled dudes."

      Totally agree, I too was quite shocked by the comments. I'm not in wheelchair but it doesn't mean I have any animosity towards or treat people like they have some contagious disease that are using wheelchairs. Quite the opposite. Without sounding trite, I admire how people using wheelchairs manage in this discriminatory society. It must be blood hard not to get frustrated and angry/depressed or a combination of all these factors and more. It must be doubly grating to be dismissed and treated as less than human so much, even by people who have some understanding of the difficulties MS brings. And yes, I was also thinking we need a cultural change in how disability is viewed.

      Delete
    3. Wow, what brilliant comment by Dre. A lot of the 'Destigmatizing the Wheelchair' comments were saddening. They were brimming with hate.

      Delete
    4. I didn't see the posts as brimming with hate against disabled people, they were brimming with hate for a disease which can make people disabled. No one in their right mind would want to be in a wheelchair. Most of us with MS will fight like mad to avoid this situation. Those with MS were healthy before - this blog opens us up to pictures of shrivelled brains, wheelchairs and high level of divorce and unemployment. I would never blame someone faced with this scenario for being scared.

      Delete
    5. Anon: 3:06pm

      How will you "fight like mad" to avoid progression when there is the likelihood that even those on new DMTs develop SPMS? It has happened.

      We an only hope for the best but prepare for bad outcomes. You can't control life absolutely.

      Delete
    6. Bless you dre. You're on the money, pal.

      Delete
    7. Excellent post Dre. I appreciate your commitment to the blog and contribution to the debates. Thanks.

      Delete
    8. Yep, me too. Well done Dre. Time for a regular gig here perhaps?

      Delete
  5. Dr Dre,

    These were my comments. Disability is crap - let's not beat about the bush. No badge of honour. I don't want it - never asked for it. I don't like fakery - hence the comments about MSers in wheelchairs doing the thumbs up sign. There a before MS and after MS. I certainly prefer the former. Too right I'm angry. Wheelchairs, hoists, peg fed, nappies.... not there yet, but have seen how others have fared after their "brave fight against MS". Maybe I will chicken out of the big S when my fears become realities. Take a look at the website of Jim Sweeney (Comedy Store Players). See what MS does - am I wrong to be fearful?

    ReplyDelete
    Replies
    1. Life is hard and unfair, Anon 1:29pm. Deal with it. If you're that petrified of your existence chances then you must be in so much pain. You must already hate your life and the world and its people. So sad.

      Delete
    2. Anon 2:07 I'm surprised your thoracic cavity can contain such a huge cardiac volume.

      Delete
    3. I wonder what anon 1:29 makes of all the suffering in the world? Should we eradicate the peoples of Syria and Libya because they're not 'faring well'?

      Life incurs hardship, some of us having more than others but less than some.

      Delete
    4. I love how Anon 2:07's take on this is that the guy must hate everything and everyone. It's amazing that human beings can be this insensitive.

      Delete
  6. One of the things that I find very interesting and - to some degree - concerning regarding the general research into MS is that, it seems, the conversation peters out post-wheelchair when it comes to treatment and prognosis.

    It seems that all hope is lost.

    Sure, we all end up EDSS 10. But is that leap from EDSS 6 to 10 or EDSS 8 to 10 or a simple shift from EDSS 9 to 10. I'd like to know how many people, at death, were at EDSS 9. If most of us with MS end up at EDSS 9 then perhaps assisted dying is something we can consider at EDSS 7 or 8 - more in the absence of hope than anything else.

    Isn't assisted dying, surely, just that - a matter of despair and loss of hope. If there is a fundamental belief that this burden is, regardless, unto EDSS9 and then unto death, then the space in between the agony of a bed bound patient and the bliss of nothingness that death might promise is a very attractive option.

    So it is natural people may choose the potential promise of death more than the agony of the living?

    But this raises two things.

    The first is this. If neurologists were able to provide some form of hope that is realistic to those with advanced MS (plasma exchange? HSCT?) then perhaps people would choose the outlier hope than the certainty of a lethal pill.

    The second is - and this is controversial - the issue of what happens after death. How do we really know what happens to us? The Catholic church would have us believe that suicide is a mortal sin and would lead you to the fires of damnation. People might sniff at this - even ridicule it - but what happens if there is a life after death and that life is, somehow, influenced by the manner of your dying. Of course we can scientifically prove that death has occurred - but we can't scientifically prove the existence of hell, purgatory or heaven. I don't buy too much into these constructs but.... what if I am wrong? What if we are wrong? What if?

    So - the promotion of hope and the philosophical contemplation of death.

    Two things that might stop the transference of a moment of crisis of the soul to a less lethal outcome.

    At what stage does a Dr say yes to that moment of crisis? EDSS 4, EDSS 6, EDSS 8? Who is a doctor to dictate the manner by which someone meets their maker? And would some choose suicide simply because they do not know that there is pharmacological help that might assist?

    To be, or not to be: that is the question:
    Whether ’tis nobler in the mind to suffer
    The slings and arrows of outrageous fortune,
    Or to take arms against a sea of troubles,
    And by opposing end them? To die: to sleep;
    No more; and by a sleep to say we end
    The heart-ache and the thousand natural shocks
    That flesh is heir to, ’tis a consummation
    Devoutly to be wish’d. To die, to sleep;
    To sleep: perchance to dream: ay, there’s the rub;
    For in that sleep of death what dreams may come
    When we have shuffled off this mortal coil...

    ReplyDelete
  7. I would like to have the choice for doctor assisted suicide to be there, just in case. I'm not suicidal or depressed or anything. It's just an option.

    This week my friend went with her mum to meet with her oncologist. My friends mum has very advanced MS. She can only move the fingers on one hand and from time to time has terrible TN. The oncologist asked her to describe her day to day life. When she had finished the doctor said that if that was her, she wouldn't treat the cancer, basically offering a form of doctor assisted suicide. My friend, her mum and I were furious. She gave no indication that that was something she was thinking about and she definitely wants to fight it. She still sees value in her own life.

    That's exactly how I feel. And that's not in conflict with me being open to assisted suicide. It just has to be on my terms.

    The conundrum then becomes at what point do you identify that you see assisted suicide as an option for you? I would be concerned that if that had been on this lady's file, the oncologist would think she had already "given up" and only offer palliative care for the cancer.

    Of course, the oncologist is in no position to judge what one person finds acceptable as their own quality of life. She goes to work every day and holds down a career and so on. My friends mum has had over 30 of MS gradually taking away bits of her QoL and has adjusted to each stage as it has happened. She fully enjoys her life.

    My own EDSS is up to 8 now. People tell me that they couldn't cope. I have a great life, within the parameters of my MS. Maybe there will be a point where I can't cope, but only I will know when I reach that limit.

    ReplyDelete
  8. How ironic that the same governments that refuse patients the right to die are the same ones that complain about the tax revenues needed to keep them alive?

    ReplyDelete
  9. Great comment Dr Dre!! Everything is run like a business in UK- from NHS, universities to social services- lets keep death out of it !!!

    ReplyDelete
  10. With PPMS, of course I have thought about my own personal threshold of suffering and whether I would ever want to end my own life. I still don't know the answer, because my will to live and my love of life is as strong today as it ever was. I can't know how I might feel in the future IF things get a lot worse. Likewise, I can't know how things are for someone else worse off than I am.

    I think that, if I did want to die, I personally would want to be able do it all myself, alone. The idea of someone giving me a hand leaves me cold (no pun intended).

    Thought: If suicide was as easy as pushing a button, how many of us - even physically healthy people - would still be here?

    ReplyDelete
    Replies
    1. I think for many, just having the option would be a source of comfort and many would not choose to exercise it.

      Delete
    2. Possibly. As I said - I cannot speak for others. But I do think there may well be far-reaching consequences for society's attitudes towards disabled or ill people, and possibly even for the "general suicide rate" as killing oneself becomes less taboo.

      In some parts of Scotland at least, suicide cases were even buried outside the churchyard walls in unhallowed ground, which is despicable nonsense, of course. But for euthanasia to become acceptable will certainly cause some deep shifts in society's perceptions. I'm not sure they will all be pleasant and innocuous. Not at all.

      Delete
  11. Dre's comment is astounding. He's changed my thinking on the matter. Seriously.

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.