Place of death…when and how to discuss the issue of death

Where do MSers die? Where would you choose to die? #MSBlog #MSResearch

Epub: Sleeman et al. Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study. Palliat Med. 2013 Jun 4.

Background: Little is known about place of death in chronic neurological diseases.

Aim: To examine the relationship between place of death and underlying cause of death in Parkinson’s disease, multiple sclerosis and motor neurone disease.

Design: Population-based study. Proportion ratios for death in hospice, home, care home and hospital were calculated Participants: Deaths in England (1993-2010) with any mention of Parkinson’s disease, multiple sclerosis or motor neurone disease as a cause of death, identified from national mortality data.

Results: In this study, 125,242 people with Parkinson’s disease, 23,501 with multiple sclerosis, and 27,030 with motor neurone disease were included. Home deaths ranged from 9.7% (Parkinson’s disease) to 27.1% (motor neurone disease), hospice deaths ranged from 0.6% (Parkinson’s disease) to 11.2% (motor neurone disease) and hospital deaths ranged from 43.4% (Parkinson’s disease) to 55.8% (multiple sclerosis). In Parkinson’s disease and multiple sclerosis, cancer as underlying cause of death increased likelihood of hospice death (proportion ratio (PR): 18.8, 95% confidence interval (CI) = 16.1-22.0; 8.88, 95% CI = 7.49-10.5) and home death (PR: 1.91, 95% CI = 1.80-2.04; 1.71, 95% CI = 1.56-1.88). Dementia as underlying cause of death increased likelihood of care home death in Parkinson’s disease (PR: 1.25, 95% CI = 1.19-1.32), multiple sclerosis (PR: 1.73, 95% CI = 1.22-2.45) and motor neurone disease (PR: 2.36, 95% CI = 1.31-4.27).

Conclusions: Underlying cause of death has a marked effect on place of death.

“This study shows the majority of MSers are dying in hospital. Why? I assume it is because the main terminal events relate to infectious complications and MSers are being admitted to have these treated. MSers rarely take out advanced directives or living wills and therefore it left up to the medical teams and family members to make decisions about end-of-life care in emergency situations. We have done a formal research project on this issue and need to submit the results to a journal. In summary it shows that MSers want the option to discuss end-of-life issues and in general are willing to complete advanced directives or living wills. Interesting I have had comments back from several professional MS organisations about including end-of-life issues and assisted suicide in my tube map on the holistic approach to MS. What do you think?”

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Surrounded by MS researchers with a bomb strapped to me. They didn't do enough to stp me getting to the grim position so pay back time!

  • Do you Prof G ever think about your death and where you would want to die? The more I read this blog the more I realise that we are a bunch of lab rats – either participants in drugs trials of askign to compelte inane questionnaires. We are all going to die – it's just a pity that the so called doctors responsible for MS, MNS and Huntingtons don't haev a clue as to how to get us better. Neurology is the biggest scandal among the medial profession – telling people they've got a grim disease and they'll dies early / wihout dignity and then asking them how they'd like to die. I'd like to die like a consultant neurologist – 88 years old, cigar in mouth and £1.5 million in the bank. That would be a good way to go!

  • Grateful if you'd focus on life. When the times comes my get out option is already planned. I thought doctors were there to get patients better or not get any worse! As anon said above neurology is the least effective specialism yet attract all the worst diseases. Surely within 10 years we should have treatments which stop nerve loss and encourage some repair! Until you guys can start to deliver real hope to MS patients we'll have to save up for the trip to Dignitas. Perhaps the regulators can join me and test wheth the cocktail I'm given is safe!

  • The readers of this blog always have panic attacks when the subject of death in MS is brought up. All they want to hear is positive news, which is ludicrous. MS is an incurable and progressive disease that gets worse: Get over it!

    We need to have posts of this nature. It brings into clarity what we are dealing with in terms of longitudinal planning. It’s important to have a plan for the worse outcome and be accepting of it. MS does not go away. They can’t cure something that has no known cause. Therefore, we need to think about the nastiest outcome whilst hoping for better news.

    • Anonymous 3.56
      "The readers of this blog always have panic attacks when the subject of death in MS is brought up"
      I know, we feel we owe it to everyone to give all the facts etc, without the rose-tinted filter. We know some won't want to hear it but I suspect the majority are realistic enough to cope with any negatives.
      A saying I often quote is "Life is a sexually transmitted disease, with 100% mortality"!

    • I am pretty new to ms and just found this site. This is the first mention of death I have found. Everything is rose tinted and jogging and yoga and diets… if there's nothing dramatic about ms, then why are the doctors and nurses and radiologists so "kind" and "caring" like I'm terminal? What is the truth and do not say "every patient is different"… I feel like I'm gonna puke with all the rah rah. From the minute I had my first mri and the threw me up on the table, then gently helped me off I knew, KNEW, from their demeaner. Thank you for bringing this out in the light. At least someone is being honest.

    • I'm not afraid of death, just the horrible process that people with MS more often than not have to suffer in life and in the end stages. I'm fed up hearing all about MS doesn't affect your life expectancy blah blah (may be a minority of cases) and fed up with the rose-coloured spectacles approach to living with MS. It is crao, sometimes less crap and sometimes more crap but it is always crap. I'm probably not going to let it get to the worst stage, I've signed up to Dignitas and despite the horrendous costs, unless MS will ever be a condition that comes under the Assisted Dying Bill (unlikely to become law anytime soon and unlikely that MS will fall under this) then I'm off to Switzerland. It's just a matter of judging the right time to do this. Not yet by any means but when my life becomes nearly all crap, then I'm ready to shuffle off this mortal coil.

  • While I agree with anon 3.56, I do wondr why there are doe 4000 MS research published very yer and a group of drugs companies making billions out of y disease. I'm happy to plan for getting out before it all gets too bad. Just aggravated that so many are making a nice living out of MS and then leaving me to do the dirty work.

  • It's actually very brave of this blog to bring this subject, knowing full well it may incur the ire of its followers.

    The chances are that all of us currently living with MS will never be cured of it. That seems to be the reality, I guess. It sucks but such is life. MS is a cruel disease but we all know that, don't we?

    Better palliative care and assisted dying is something that as a nation the UK ought to have in place. I don't want to die before my time but the thought of living in misery is very saddening. I want a get out card for if and when I need it.

    If cracking progressive MS was that easy then it would have been done by now. Neurologists aren't superheroes or gods; they're just humans trying to do the best job they can with the means available to them.

    I hope that if ever a cure comes, perhaps decades from now, future generations learn about how hard it was for us, and the fight we made to better our situation. We are the true heroes.

  • The ethos has been reporting the good, bad and other news. I am sorry if there is bad news…but for some, who are given the options, they have to make hard choices and having information to hand will help them.

    We could spend all our time doing cure of the week…just like the tabloids, but if it did not materialise..then what?

  • Everyone at risk of dying in hospital should think about where and how they want to die. 55.8% is a bad statistic re MS'ers dying in hospital. If knowing this statistic allows people to choose their risks better at the end of life, that is good.

    Thanks for the data.

  • To post things like this on a site is Mentally disturbing . Someone needs help for posting this . Its very sick

  • A cure will never be found while everyone whos posting SICK links on here has time to do this and then also aswell posts links promoting deadly drugs that have killed .

By Prof G



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