Thursday, 9 June 2016

ClinicSpeak & PoliticalSpeak: dying well

Will an assisted suicide bill get another hearing in the house of commons? #ClinicSpeak #PoliticalSpeak #MSBlog

"My family dragged me off on Sunday night to see 'Me before You' a tragedy, with a bit of comedy, about a young banker who has a spinal cord injury and is paralysed (quadraplegic), who despite falling in love with his new carer opts for assisted suicide at the Dignitas clinic in Switzerland. The film is a real tear-jerker and has been heavily criticised in the UK media for two reasons. Firstly, the director was criticised for not casting a disabled actor in the main role and secondly for 'condoning assisted suicide' of a disabled person. The critics claim the movie suggests society is rejecting disabled people by offering them assisted suicide. I think the critics miss the point of assisted suicide; it is about personal choice. By not legalising assisted suicide you deny people the choice and instead you create a tourist industry in assisted suicide. The tragedy of the latter is that it only the well off that can afford the trip to Switzerland; in other words you have a two-tiered system the haves and have-nots. The latter is against the founding principles of the NHS; that is if you consider assisted suicide part of healthcare, which I do."

"I remain ambivalent about assisted suicide; I want to have the option open to me and my family, but I don't want to go near it as a healthcare professional. It is clear that the debate on assisted suicide is beginning again and I suspect it will only be a matter of time before another bill gets tabled on this issue. I have a handful of patients with MS who have registered with Dignitas; I had to write factual medical reports for them. To date none of them have taken up the option of travelling to Switzerland."


"Earlier this week, I attended a meeting that was focusing on how to change the behaviour of neurologists, and other healthcare professionals, to allow pwMS more say over their treatment decisions. As part of my talk I presented by London Tube Map worldview of MS; i.e. a one-way train trip to the terminal phase of the disease. I have mentioned to you before that one of the major MS Society's has previously asked me to leave off the terminal stop, in particular the issue of assisted suicide. Therein lies the problem if you don't tell pwMS that MS has a terminal phase, and has potential solutions, how the hell do you expect them to way up the risks and benefits of treatment with the risk of the disease?"

"However, much more important that the debate about assisted suicide is issue of dying well. To do this you need to have an advanced directive, or living will, and have discussed things with your family. The latter is very important, in fact it is critical. If you haven't done this already I urge you to do it ASAP. It is vital that your family know what you want in the terminal phase of your life and how you want to die. The following essay in last week's NEJM is a must read; it is beautifully written and illustrates why dying well is so important. Please read it and reflect on its message."


Katherine McKenzie. Perspective: A Modern Ars Moriendi. N Engl J Med 2016; 374:2107-2109. 

Excerpts:

..... My father the rancher was stoic and taciturn.....

...... I didn’t want him to suffer. I wanted him to have a good death — something akin to the ars moriendi....

...... Latin for “art of dying,” the ars moriendi is a body of literature that originated in Europe during the 15th century, on the heels of the bubonic plague. Its aim was to provide a practical and spiritual framework for the preparation for death. It outlined prayers and protocols for the dying and for their communities. It emphasized the acknowledgement of human finitude.....

....... My father had never heard of the ars moriendi, but I was certain that it was what he would have wanted. In his living will and in past family discussions, Dad had been clear that he wanted no mechanical ventilation, no resuscitation, and no feeding tubes. And he wanted to die at the ranch, if possible.....

....... We arranged for an ambulance to transport him back to the ranch as soon as possible. “We’re leaving the hospital, Dad. We’re taking you to the ranch now.”.......

....... Removing him from the hospital most likely hastened his death. But the days that remained were rich — and in accord with his oft-stated wishes......

....... Voices soon filled the house; friends and family streamed in and out of his bedroom and paid their respects with quiet words and gestures, but with humor and laughter, too. The parish priest, Father Herman, administered the last rites, and a bedside vigil of contemplation and comfort unfolded for 3 days.......

....... In her book Dying in the Twenty-First Century, Lydia Dugdale asks whether we can revive the ars moriendi, despite our highly medicalized approach to dying. Looking at my dad, in his home, unencumbered by medical technology, I thought we had come pretty close. Here he was, embraced at home by the people who cared for him most. No medical teams on daily rounds, no machines to keep him alive. Just the smell of the plains, the comfort of his own bed, the voices of his loved ones......

...... Near the end of our vigil, my sisters and nieces and I were emotionally weary. As we sat with a neighbor in the living room adjacent to Dad’s bedroom, the neighbor inquired about the piano in the living room and mentioned that she played. “Could you play a piece for us?” we asked. Soon, plaintive, melancholy music surrounded us, soothing our sadness as we prepared to say good-bye to our father......

....... His condition continued to deteriorate, and on Thursday morning, my sister told him, “Dad, it’s a beautiful morning. It’s okay to go now.” Shortly thereafter, his breathing shifted and slowed, and then stopped. We held his hands and one another’s, feeling deep sorrow and a reverence for death......

....... In the year that has passed, I have been thankful to Dad for his foresight in preparing himself and his family for the kind of death he wanted. It was a challenge to resist the medical treatment I knew so well. But in honoring his wishes, we shifted our focus from life-prolonging technology to life-enriching community. And we managed to apply 15th-century principles to achieve a timeless outcome: a good death......

10 comments:

  1. Thanks so much for this post especially the beautiful story about dying well. I must and have been meaning to do for ages formulate my end of life plan and share with my amazing husband (who is 15 years older than me and has strict instructions from me not to go first!)
    I've had a wonderful, happy, blessed life but when MS takes me to the point I want to get off the ride I would like to be allowed to do it as peacefully as possible and on my own terms. If that has to involve a trip to Switzerland then so be it. But it would be nice not to have to.
    Why oh why are we so taboo about death and insistent on prolonging life as long as possible?
    It's my life, my decision and my death.
    I blog using my real name/photo and am more than happy to share my view publicly.

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  2. I had to have major surgery so I made my will and power of attorney. my family couldn't even bear to talk about that let alone assisted dying. When I first got MS I didn't see much future and if I listened to the media and the press I would have committed suicide years ago. Unfortunately I've known too many people that have taken their own life and I see what a sadness it leaves. I've watched friends die horrible deaths and suffer. I still cannot decide what is right, so how the hell can the politicians?

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  3. I am impressed with Dr G's honesty on assisted suicide, but a bit doubtful about his logic. This sentence says it all

    "I remain ambivalent about assisted suicide; I want to have the option open to me and my family, but I don't want to go near it as a healthcare professional."

    I can't believe many healthcare professionals would want to assist people to end their lives - it's hardly what they went into the profession for, is it?
    Truthfully, it's easy to end one's own life, with a suicide bag. It's not messy, or painful. As long as you've got the right one, it's certain death. It's time for people to decide that, if they to, they will take responsibility for ending of their own life. People shouldn't be planning to rely on doctors in this country end their lives for them or on politicians changing the law to allow (force?) doctors to do this. People shouldn't feel they have to have the money to get to a Dignitas in Switzerland. Painless DIY suicide is the way forward.

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    1. e: "I don't want to go near it as a healthcare professional."

      What I mean by this is that any decision about assisted suicide needs to made by doctors, or teams of people, who are not part of the diagnostic/management team. Assisted suicide clashes with some of my core principles as treating physician. I have discussed this previously in another post on the Hippocratic Oath. If assisted suicide is legalised I suggest it is done by palliative care physicians; I won't do it!

      http://multiple-sclerosis-research.blogspot.com/2011/10/hippocratic-oath.html

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  4. When my father was terminally ill with a leaking aortic aneurism we were very fortunate to be able transfer him out of hospital to his own home where we cared for him with the assistance of hospice at home nurses who were available 24/7. I previously worked for the charity that provides this care in our local area and I would be very reluctant to live anywhere else because I know that they will be there to support us as and when we need it. It is a great pity that this service isn't available throughout the country.

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  5. We are having a debate in Canada about doctor assisted dying ( please
    don't call it suicide; dying is natural but suicide carries with it a whisper of inadequacy .

    Our house of commons has passed a bill legalizing doctor assisted death but this has been amended in the Senate and sent back . The Senate thought that the bill was too restrictive because death needed to be imminent
    This robs the individual of autonomy and will prolong suffering . If the lower house accepts the Senate's suggestions then Canada will have legalized release from pain and suffering without medical tourism to Switzerland.

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  6. If the doctors who ended up being responsible for assisted suicide turned out anything like DWP's sorry bunch of lying, snivelling "health care professionals" at Atos, I wouldn't let them anywhere near me - not even to finish me off. There is a danger of this sort of work attracting the wrong kind of people, is what I'm trying to say.

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  7. Thank you for the post ProfG. You touched a very sensitive topic, which is usually a taboo for both the patients and their families.

    Regarding Dignitas, I think that one should have a terminal illness in order to be allowed for assisted suicide, am I mistaken? Given that MS can make people suffer, but is not a terminal illness, can Dignitas allow assisted suicide to PwMS?

    Moreover, do you think that those who start having an effective DMD early in their MS course have less chances of suffering from MS after a few decades (and potentially suicide) or is the terminal phase an inevitable reality that many patients will face?

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    1. Re: "Moreover, do you think that those who start having an effective DMD early in their MS course have less chances of suffering from MS after a few decades (and potentially suicide) or is the terminal phase an inevitable reality that many patients will face?"

      MS is definitely not a terminal disease; the results of the Canadian HSCT/BMT, other HSCT and alemtuzumab results suggest we can make a big,big, difference to MS outcomes. Some of these results are getting tantalizing close to fulfilling my definition of what we need to look for an MS cure. I will be updating my tube map in the near future to take this into account.

      MS or not we can't get away from the fact that life is a terminal illness with 100% mortality. Dying well is an issue for everyone, MSers and their families.

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    2. my body my life my choiceFriday, June 10, 2016 7:27:00 pm

      The problem is not many people have access to these life changing aggressive treatments and I cant see this changing any time soon :-(
      I find it so hard to grasp the logic behind this as they must save ££££ in the long run. To know a treatment such as HSCT is out there but out of reach is knowledge hard to bear.

      Knowing what MS can do to you led to me completing an advanced directive at the CIS stage of my disease. I'm a young and otherwise healthy MSer with no disability as yet but I made the decision to refuse any life sustaining or life prolonging treatment a while back as I don't like the idea of living too long with MS.

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