Thursday, 14 December 2017

Dying on your terms: is it possible?

The Australian state of Victoria has become became the country’s first to legalise assisted dying or suicide. Is dying a better euphemism? 




Victoria’s Lower House ratified the euthanasia bill last week. Starting in mid-2019, the law will allow Victorians with a terminal, incurable illness — and, in most cases, a life expectancy of less than six months — to obtain a lethal drug within 10 days of requesting it.

Will MSer ever be able to show they have a life expectancy of less than 6 months? 

Victoria joins the Netherlands, Canada, Belgium, Colombia and Luxembourg in legalising euthanasia.  Is euthanasia a better term than assisted suicide or dying? 

Several other countries — and states and jurisdictions in the United States, including California, Washington, D.C., and Oregon — have passed laws allowing assisted suicide, in which doctors, in certain cases, may prescribe or suggest a means in which patients may end their own lives, without directly assisting in the act.

The critics will claim 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 abroad. In other words, we 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 am becoming increasingly appalled about inequality, particularly in healthcare!]

At a personal level, 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 will continue and I suspect it will only be a matter of time before another bill gets tabled in parliament 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 has taken up the option of travelling to Switzerland.

I have attended several meetings in the last 12 month that have focused on how to change the behaviour of neurologists, and other healthcare professionals, to allow pwMS more say over their treatment decisions. When I talk at these meeting I tend to present my 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 can we expect them to way up the risks and benefits of treatment with the risk of the disease?

However, much more important that than the debate about assisted suicide is the 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 essay in the NEJM is a good 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 humour 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 neighbour in the living room adjacent to Dad’s bedroom, the neighbour 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 goodbye 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 honouring 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......

ProfG    

24 comments:

  1. I didn't know M&S had a terminal phase...is this definate for all MSers?

    I mean, I'm on Tysabri with hardly any debilitating symptoms, I genuinely can't see MS my self in a wheelchair or even with a walking stick let alone terminally ill because of the disease.but I'm also in my early 20's so this may change over the years.

    I think you should change that to some people with MS transition to terminal. Rather than MS has a terminal phase full stop.

    Apart from that, I fully support assisted dying and I think people should be able to choose how they go as long as they have the capacity to make that decision.

    ReplyDelete
  2. " Will MSer ever be able to show they have a life expectancy of less than 6 months? "

    All patients had advanced disease
    (median disease duration 25 years, range 10–54 years),
    expanded disability status scale >6 and the majority had
    primary or secondary progressive MS (22 of 25, 88%).
    Leading cause of death was legally granted euthanasia for
    11 of 27 (44%) patients.
    DOI 10.1007/s00401-017-1744-4

    Obrigado

    ReplyDelete
  3. It would be not literally true to say "this brought tears to my eyes" but certainly it is metaphorically true.

    Curiously it is the *exact opposite* of the trajectory that I was on. My wife, who I love deeply, stopped working the very day that I did. She did this, and I owe being alive seven years later to her for doing so, in order to do what her Dad did for her Mum.

    Keith cared, at home for Jean - who had MS - *until the last three days* when she finally went into hospital. That would have been my lot if my beginning to have seizures, two of which led to me dying at home and being CPR'd back to life by Ros, had not led to the medical opinion that I would be safer in the Aged Care that is now my home.

    As an aside here I should note Daniel, who was on the team that researched the genetic aspect of MS in Melbourne University and told me that this non genetic link, MS Mum, MS husband was statistically, at 20%, "way beyond chance". Another research topic?

    Yet another research topic is the notion that I'm "safer in Aged Care" because I am not. There is no monitoring of vital signs that could lead to the, almost immediate, CPR that could save me. I would be found "dead in bed" Unpicking that one has led me to discussions with two companies that make a cheap, portable, Bluetooth enabled, "pulse oximeter" (measures blood oxygen levels - the lowering of which is a sure sign that breathing has ceased).

    In these discussions I am trying to lead them, beyond their understandable commercial caution, to the development of a new product. That would be a device, fundamentally similar to the one they make already, that would have no battery-draining display and would clip on to one's ear lobe. Physiologically the ear lobe circulation is more reliable, the device would be less in the way, and it could be accessorised and marketed as "life saving jewellery"

    ReplyDelete
    Replies
    1. I think your story is much more representative of the normal.

      My Aunt had MS, after the death of my Grandparents (her carers) she agreed that she would be best served by residential care, despite being only 65. Whilst appearing quite serene about this arrangement, she proceeded to take her own life only 1 month after moving into a residential care setting. She most certainly had a very painful death. With hindsight, it was a dreadful mistake, as a family we allowed a social worker to manipulate a very vulnerable person into feeling she was not wanted in the family home (there was no acute risk such as seizures, but she was largely hoist transfer).

      It's a shame this isn't an open access article, or even written for the lay person and put in mainstream media. It is an important message. As a society we need to be more honest about our goals for quality over quantity of life; particularly in the setting of chronic incurable diseases.

      Delete
    2. bed, the voices of his loved ones.
      Sometimes I wondered whether
      I’d made the right decision.
      Modern medicine has made it
      possible for patients to live after
      a stroke, although often with
      significantly compromised function.
      On his second day home,
      Dad began to cough and became
      febrile, and I suspected that pneumonia
      had developed. As a physician,
      I knew an antibiotic would
      be an appropriate and relatively
      low-risk intervention, but we withheld
      that treatment along with
      the others. He received medication
      to alleviate his discomfort,
      and that was all. But despite his
      clearly stated desires, I knew well
      what was theoretically available
      to keep him alive.
      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

      Delete
  4. There is a misunderstanding in the editorial about our new law - for people with progressive neurological conditions, including MS, an estimated life expectancy of less than twelve months will meet the criteria for voluntary assisted dying. The six months applies to most other terminal conditions, but not progressive neurological disease.

    ReplyDelete
  5. It's inhumane to not let people die. A complete irrational, nonsensical, illogical stance by those who aren't in the situation as those wishing to not live.

    It's as ridiculous and as harmful, as the mindbogglingly stupid stance on stem cell and embryo research.

    Pseudo, faux, wooly patronising cruelty imposed on people who suffer, by those that don't.

    ReplyDelete
    Replies
    1. I agree. When I get to the point where I don't want to carry on - that's really my decision.

      I don't think the fact it may make you confront an aspect of your personality that makes you feel uncomfortable should remove my access to it.

      On a personal level, it's not an argument about how society treats its disabled, more a question of who decides what quality of life is acceptable to you - you or someone else.

      Delete
  6. Is this post really good for morale? Given stress plays a important role in progression of MS? In addition given DMD like Alemtuzimab, haven't we changed the natural course of MS? So is this post relevant? Lastly, I feel like dying when hangover is it wise to allow sick people to choose to live or die? Mind you it'll make great savings in NHS Budget!

    ReplyDelete
    Replies
    1. We're not fans of the ostrich strategy round these parts ;-)

      Delete
    2. Ok. Given sick people are already vulnerable to charlatans with miracle cures or have emtional quilt about being a burden on family. Do you think they are not aware ending their life resolves these problems? Is this article really necessary or for that matter assisted suicide? It's not about ostrich. We are all going to die but when you dwell on how to die. You stop living for the short time you are alive. Hey, good to have different views. I just happen not to agree this time round.

      Delete
    3. I hope I'm not the only one who believes that there's real empowering benefit to doing both: living your life, and preparing to die, as well as possible. Consequently I am able to say that as a woman who turned 54 yesterday (yikes!) that I'm as active as possible, eat a reasonably sound diet, use mindfulness, enjoy the company of family & friends etc, etc. I'm blessed to have a great life!
      I've also completed an Advance Directive and am going to sign up with Swiss sister organisations lifecircle and Eternal Spirit, so as to have the option of asssited dying available to me if I want or need it.
      I have also been blessed by having received Alemtuzumab (Lemtrada) from the NHS, as a UK citizen. I don't know, ProfG, does this quality of DMT mean we don't know what the future trajectory of MS will be? Whatever, the potential future for those of us around the world fortunate enough to have access to DMTs, it seems to me that the ars moriendi approach is spot on! There's a huge focus on living well and making the most of life, why not the same approach to the end of life and dying? Before being diagnosed with MS two years ago, I would laughingly say that we've done to dying and death what the Victorians did to sex: 'covering the piano legs' : making it scary, alienating and verging on the obscene' I'd like to thank you ProfG for the posts on this subject. Though you focus on MS, you're not the only one trying to impress on everyone the need to/benefit of producing a Will and an AD (or ADRT) Any fan of Martin Lewis and his money saving site will know he frequently flags it up. It's important to understand that it's about losing capacity to make decisions about your care and treatment as much as about being terminally ill. A number of my friends and relatives are now doing ADs after I pointed out that the main cause of traumatic brain injury affecting capacity is, apparently, falls!
      Hope I'm ok to add this, but for those of you who are going to respond to this post by looking into making an AD, please know that there are lots of legitimate UK sites offering forms for you to complete. As you have to state specifically what treatments you wish to refuse, I found the Alzheimer's Association end of life decisions helpful on the treatment options of such things as artificial hydration and CPR. It's is available online.
      For those who have the mind for it who wish to know more details about endstage or terminal MS there's plenty available via an online search and I found some aimed at healthcare professionals the most illuminating.
      The other kinda nice thing is that having found myself comfortable and confident that I'm as sorted as possible for a good death, I'm not dwelling on it, I've been able to park it and focus on living well, for how ever long I'm alive.

      Delete
    4. Actually, to be totally accurate Martin Lewis focuses on making a Power of Attorney - also worth considering in case of losing capacity, in regard to finances etc.

      By the way Hope you're doing ok luis

      Delete
    5. Thanks FI. Some good points to consider. I like your last comment "park it and focus on living". I'm 49 year old with mild ms. Yes it could get worse. Than why bang on about DMT on this site and talk about reversing
      The pyramid. Stopping the decline. As comment below said. Is it all fairy tale? I come to.this site for hope. Not to be demoralised and then be told not fans of ostrich!

      Delete
    6. "We're not fans of the ostrich strategy round these parts"

      Debatable.

      Delete
    7. Oh, you don't know just how wrong you are.
      Details to follow................................;-)

      Delete
    8. Just going by what I've read here over the years.

      I have humility. I know my wrongs. But Barts have such a laissez-faire self preservation approach, it's truly irrational.

      Delete
    9. Is this the HSCT zealot coming out of the closet?

      I have been following this blog for sometime now and bearms, as a commentator, must come closest to the true definition of a zealot.

      zealot = a person who is fanatical and uncompromising in pursuit of their religious, political, or other ideals.

      Delete
  7. (Edited)
    At the end of the day, we’re all on a one-way ticket to the oven/work food, with or without MS, but I’d agree with the earlier comment that the MS tube map needs to have a fork for early effective treatment which - if we’re to believe what we’re repeatedly taught on this blog - holds some promise for giving us back normal lives without terminal/progressive MS.

    Or was that just a fairy tale...?

    ReplyDelete
    Replies
    1. But the tube map does have an early effective line; it is the dotted line that is under construction. It has three stops under construction: (1) long-term remission, (2) MS cure and (3) normal ageing.

      https://goo.gl/bULdK2

      Delete
  8. It lifts my heart to know there are youngsters like first comment anon, twenty something and straight onto natalizumab. Plus so many others with early alemtuzumab, cladribine, ocrelizumab and AHSCT. Amazing NEDA is now accepted as a target and there are so many effective treatments available. Fingers crossed this group will far outlive their MS and die naturally in old age (whenever that might be).

    I also take much encouragement from all the dedicated researchers and cannot thank every one of you enough.

    Sincerely hope we are the last generation to be facing the MS early terminal line. Out of interest what is early? 55+(definitely) 65+(probably) 75+ 85+ ? As average life expectancy has increased are we expecting too much of MS to last the test of time? My personal hope is to draw my state pension at 67 although they keep raising the bar with this ;-)

    All that said, I would far rather plan a good death on my terms than stick my head in the sand :)

    ReplyDelete
    Replies
    1. And when the time comes, I hope to be able to do the same.
      All the best for the festive season to you and yours ;-)
      MD2

      Delete
    2. Hope I'm not impertinent MD2 when saying that 'when the time comes' is something none of us, with or without MS know - hence my earlier point about falls.
      My appreciation of everything from researching for my AD and Power of Attorney means I now think everyone over the age of 18 should get on and produce at least a Will and one or both of the other two. My super fit and active 22 year old son is now talking to his Dad and I about doing this for himself - Please don't think because you're well and/or not elderly it's ok to leave it for the future!

      Delete
  9. Assisted suicide seemed to me a no-brainer until I witnessed what happened to my terminally ill brother-in-law in an NHS hospital. He needed 24-hour care, couldn't feed himself or get out of bed and was utterly helpless. One would have thought that he would qualify for NHS 'Continuing Care' funding, i.e. to pay for nursing care in the terminal phase of his life. He didn't qualify and my sister was faced with a huge weekly bill to pay for care in a nursing home. Sort of a happy ending, though - by chance, the nursing home received a spot check inspection by the Quality Care Commission. The inspector looked at A's notes and on the spot reversed the Heath Authority's decision not to fund. My sister was spared the cost and her husband was too ill to know the ins and outs, but it convinced me that a patient's decision to take their own life could well be influenced by the NHS funding rules. I strongly suspect that if euthanasia had been available, my brother-in-law would have demanded it to spare his wife the huge financial liability.

    ReplyDelete

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