#ClinicSpeak: hospice care the underbelly of MS

Why is death and dying with MS such a taboo amongst MS stakeholders? #ClinicSpeak 

Summary: As multiple sclerosis advances people may enter a phase when the complications of MS become life-threatening. This phase is referred to as the terminal phase of MS. This post discusses a hotline service provided by the German MS Society to help German MSers with advice about palliative care and hospice.

Just over a year ago I bought a pair of rose-tinted glasses to improve my outlook on the world. Several commentators on the blog thought some of our posts were too morbid and not positive enough. I responded that we don’t pull our punches and tell things as they are. If people don’t want to know the truth they can go somewhere else; there are plenty of sights on the web dedicated to alternative facts. 

The following study addresses the underbelly of MS, its terminal phase. It describes the experience of a German MS hotline dedicated to palliative care and hospice care. The hotline received 222 calls over a 27 month period; i.e. ~8.2 calls per month. Germany is a large country with a population of ~83 million, therefore this is probably the tip of the MS iceberg. What this study shows is that there is a need for information and advice about terminal care. 

Just yesterday I was asked to comment about a person with MS who was locked-in and was being managed in an intensive care unit as a result of severe brainstem disease. This person was in her late 50’s and had MS for ~20 years. The patient was conscious and was actually not quite locked in as she could still twitch one of her fingers. She was using this finger twitch to communicate. I made the point that this is the exact situation when having an advanced directive or living will in place is helpful.  It provides clear instructions to your family and medical team years before they need it to guide their treatment decisions in the future. I would recommend you all address this issue in advance. The NHS Choices has very good advice on end-of-life issues and advanced directives. 

End-of-life issues that are highlighted on our MS Tube map that possibly need consideration are:

  1. Palliative care
  2. Legal aid
  3. Social services
  4. Hospice
  5. Respite care
  6. Dignitas
  7. Assisted suicide
  8. Funeral planning
  9. Dignified dying
  10. Mortality (cause of death)
  11. Living will

Did you know that one of the MS Society’s asked me permission to use my tube map, but wanted to remove the terminal line? They felt it would not be appropriate to inform or remind pwMS that MS has a terminal phase. On principle I said no; if they wanted to use the map they needed to take it as is, warts and all. Was I wrong? I feel the days of the patronising HCP, deciding what information to give pwMS, are over. To be honest, life has a terminal phase and the issues being discussed here are not unique to MS and apply to everyone so I am not sure we need to be overly sensitive about these issues.

The following is an example of an advanced directive to refuse treatment at the end-of-life. This can be adapted for MS. 

Strupp et al. Evaluation of a palliative and hospice care telephone hotline for severely affected Multiple Sclerosis patients and their caregivers. Eur J Neurol. 2017 Sep 19. doi: 10.1111/ene.13462.

BACKGROUND: Palliative and hospice care (PHC) still highly focus on cancer patients.

OBJECTIVES: To connect severely affected Multiple Sclerosis (MS) patients and caregivers to PHC, a nationwide hotline was implemented facilitating access to PHC.

METHODS: The hotline was designed in cooperation with the German Multiple Sclerosis Society. Self-disclosed information given by callers was documented using case report forms supplemented by personal notes. Data was analysed descriptively.

RESULTS: 222 calls were documented in 27 months. Patients’ (mean age 51.12; range 27-84) mean illness duration was 18 years (range 1 month to 50 years). Inquiries included information on PHC (28.8%), and access to PHC (due to previous refusal of PHC, 5.4%), general care for MS (36.1%), adequate housing (9.0%), emotional support in crisis (4.5%). 31.1% of callers reported “typical” palliative symptoms (e.g., pain 88.4%), 50.5% symptoms evolving from MS, and 35.6% psychosocial problems. For 67 callers (30.2%), PHC services were recommended as indicated.

CONCLUSIONS: The hotline provides insight into needs and problems of patients severely affected by MS and their caregivers, some of which may be met by PHC. Future follow-up calls will demonstrate if the hotline helps improve access to PHC beyond providing information. Overall, our hotline seems to be easily accessible for severely affected MS patients whose mobility is limited.

Addendum: Results of blog surveys done in the past related to this topic.

22 thoughts on “#ClinicSpeak: hospice care the underbelly of MS”

  1. I have never had this discussion with my neurologist or practice nurse. I would be interested to hear if others have. Is this something that is taught to you in medical school?

    1. I have found 3 surveys we have done in the past on this topic and have added them to the post. I think they answer the question you posed. I must be getting old in that I can't even recall what surveys we have done on the blog.

  2. The other documents for PwMS in the UK to consider setting up are Lasting Powers of Attorney. There are separate documents for Health & Welfare and Property & Financial Matters.The Lasting Power Attorney (LPA) is a legal document that allows you to appoint people you trust (known as attorneys) to make decisions on your behalf when you are unable to.You can have both an Advance Decision and LPA for Health and Welfare. If you do, the one that you made more recently will take priority when a decision needs to be made about your treatment and care. Make sure that you tell your attorneys about your Advance Decision and give them a copy.If you make an LPA after the Advance Decision your attorney will be able to override what’s written in your Advance Decision if you gave them the power to make the decision in question (eg they can make decisions about life-sustaining treatment).If you make an Advance Decision after an LPA your attorney won’t be able to override what is in your Advance Decision. But if a decision needs to be made about something that you haven’t detailed in your Advance Decision, then your attorney will still be able to act on your behalf.As someone not squeamish about thinking about my end of life, one of the hardest parts of setting out my wishes was to find objective information about such things as the effects of withdrawing food and fluids.I would welcome the MS charities, the Barts blog or others providing some guidance on the most common end of life scenarios to help those of us with MS who want to set up Advanced Directives etc to understand the issues and decisions that might need to be made

    1. A really beneficial post. I'd like to echo the request/wish that there was more information provided for PwMS covering what should be included in Advance Directives. The requirement is that you are specific about what treatments you wish to refuse. I've been doing my AD in a piecemeal fashion for several months now, and some of the contents were informed by the Alzheimer's Association End-of-Life Decisions. Rather spookily I was googling yet again on Friday this very subject when I found some valuable information in a document aimed at health care professionals: A Guide To MS – MS Society, in which there was some description of end-stage symptoms, complications etc.I'm hoping to produce a clear, accurate and comprehensive AD and can't help but think it's a shame we have to draw on other conditions: even this excellent post using a cancer charity as an example of an AD format. Btw I wasn't aware of MS causing locked-in and wonder is this a result of degeneration or is is something that can happen spontaneously?

  3. Prog G, i wonder if you need to see a heart surgeon to ask if they could provide one to you. On your twitter account you say that you hope to be still running at 80 – lucky you. My mother died of MS aged 61. She spent 5 years in a manual wheelchair, 3 years in an electric wheelchair and 7 years in bed. Her life really ended 15 years before she died. Her passions were travel, tennis and rambling – all lost to MS. Her grandchildren never saw her walk. The disease destroyed my father and any retirement plans he had. She was unrecognisable at the end kept alive by anti-biotics and peg feeding. I hope you never have to experience someone close to you being ravaged at such an early age. The neurologists did nothing. The MS nurse tried her best. Any charitable donations I make will be to the nurses from Marie Curie. Sorry what was your question – why is MS and death such a taboo!

    1. But when her mother was diagnosed with MS, or did she already have the disease and was discovering it many years later? Did you ever do any type of treatment to treat MS or palliatives? Like pwMSer that I am, fully aware of how far the disease can reach and "take me", and I know it is a disease without cure so far, and is still misunderstood in many ways, but now has some medicines that can slow the action of disease, such as high-efficiency DMTs. So this is not Team G's fault, or whoever it is, it's that devastating disease itself.

  4. Thank you for this post. A few points.First, I think that there is a general lack of quality research on the terminal phase of MS. Looking at natural histories of progression, there tends to be a framing in terms of progression from EDSS 1 to 3, 3 to 6 and 6 to 8. This is fine, but what is lacking is the nuanced detail. How long, for instance, does the average MSer exist at 8 before it gets to 9 before it gets to 10. The case study you mention of the brain-stem lesion: was she EDSS 3 one moment and then EDSS 9 the next? If I knew that I was likely sentenced to, say, spend 10 years of 'living' at EDSS 9, would I choose a one-way ticket to Switzerland when I hit EDSS 8? Perhaps. The devil is in the details, Prof G. Yes, we are all heading in one way or another to EDSS 10, the questions are – how do we reconcile ourselves with that, and how do we choose the paths ahead of us. With a disease that takes and takes relentlessly, perhaps choosing the time and the place of our EDSS 10 is the one thing left to us.My second point is that of fear. As a far wiser man than me once said, a warm man can never know what a cold man is feeling. Likewise, most people with MS can't really envisage a situation where they are locked-in. So you can post as much as you want about end of life choices, but the reality is that the majority of people reading this blog are a long way from that framing, and so we read it like we watch a car crash on the news. Terrible, but thank God it isn't us.Third, if you do address MS as a terminal disease (which I think we should) then we shift the paradigm. If we replaced the word MS with, say, cancer, would there be more funding made available, would there be more aggressive early treatments offered? I think yes. The slow tick and the slow tock of this disease puts off the urgency of the now. There is no flurry of drama and referral and treatment. There is no: "Perhaps you have 3 months left, get your things in order" conversation. And this means that we – the patients – are told that we can see our Neuro in 12 months time, then we are left to the inner demons of our own devising. Some people say that they'd rather have cancer than MS: at least that gives a chance of kill or cure: as opposed to slow, slow, slow degeneration. In light of this, yes, we should talk about death, but we should also say this: if you are keen for patients to 'own' their demise (as we should), then we should also be listened to when we ask for hard hitting early intervention. Rather than consider HSCT as the 'new CCSVI' I think you should reflect your own musings back at your own framing of MS. We know HSCT has risks, but we also know that it has benefits. And who is to say that the figures of progression post-HSCT are less bad than they would have been: you say that interferon slows down progression and yet you don't aknowledge that HSCT might slow it down even more.So yes, let us talk about death. But let us also talk about the options of fighting that ending of the light.+++Do not go gentle into that good night,Old age should burn and rave at close of day;Rage, rage against the dying of the light.Though wise men at their end know dark is right,Because their words had forked no lightning theyDo not go gentle into that good night.Good men, the last wave by, crying how brightTheir frail deeds might have danced in a green bay,Rage, rage against the dying of the light.Wild men who caught and sang the sun in flight,And learn, too late, they grieved it on its way,Do not go gentle into that good night.Grave men, near death, who see with blinding sightBlind eyes could blaze like meteors and be gay,Rage, rage against the dying of the light.And you, my father, there on the sad height,Curse, bless, me now with your fierce tears, I pray.Do not go gentle into that good night.Rage, rage against the dying of the light.

    1. Hi iaino, you're quite a writer hey? And thanks for the Dylan Thomas :)Funny, I've thought a few times with all the comments on this blog, things like 'but what about the risk of cancer with drug x, y or z' that a cancer diagnosis would be a welcome relief. It has an end. And people say how brave you were. Unlike the horrible dark MS abyss beneath to be suffered to the end. And people shake their heads sadly and say how you had no life. You fight cancer, you suffer MS.

    2. my partner had cancer before ms. i can tell you with certainty she wants neither. and in particular, she def doesn't want the breast cancer back. every ms step she takes is consulted with her neuro, oncologist, breast surgeon and haemo. every step, every time. she doesn't want the cancer back. you fight cancer hoping the fight will end in your favour. but cancer never really ends, even if you beat it. the fear remains forever and the chances of the cancer returning are high, the treatment side effects often remain and life becomes a waiting game (when is it coming back, which one is next?). she says ms is more insidious than cancer, but i know she's fighting with all her might both ms and cancer.

  5. I haven't had an opportunity to discuss this with a HCP. I really don't know how I am going to feel in the future. I don't know what the treatment options are for the numerous states I could find myself in later, and they may change anyway. I can see the sense in making an ADRT but I am ill prepared to do so.

  6. Surely we need a right to die option in England.It'd be like having total control. If MSers have DMT options, then this will be another option. I have PPMS. I will only get worse, suffer and then wallow. The outlook medicinally is not good enough. I deserve options.I'm in no hurry to die, but I should have total say. Neurologists do not have MS, I do.

  7. what a poor poor ms society. who are they doing a favour, cept themselves?my partner and i had the talk a long ago. if/when she reaches the point where enough is enough, she needs to let me know. what else will she do? live in misery, for me? we are only as happy together as each of us is happy separately.we are privileged. i can get her to whatever country is needed if she ever wanted to pull the plug. plus, out state is close to assisted suicide laws being brought in.shame on people who aren't prepared to talk about it (other than if they are sufferers themselves – only they should be the ones who decide if they want to talk about it).

  8. I love your tube map Prof G! Do not remove the terminal line, it is always better to be honest. 'fear of a name increases fear of the thing itself' Albus Dumbledore (Harry Potter and the Sorcerer's Stone, J K Rowling)

  9. It would be useful if we knew how many people with MS, as a percentage, are actually going to end up in this phase? I was always under the assumption that the majority of people with MS, 75%, never lose the ability to walk, but would require a stick?

    1. Please Dr. G, address this? U Penn on their website makes the same point, and notes that you are "more likely to die of something else sooner, like stoke or heart attack."

  10. 'If you're reading this – then I'm already dead': Grandad reveals why he has ended his life at Dignitashttp://www.mirror.co.uk/news/uk-news/if-youre-reading-im-already-9427571

  11. "The patient was conscious and was actually not quite locked in as she could still twitch one of her fingers. She was using this finger twitch to communicate"“If you sacrifice your art because of some woman, or some man, or for some color, or for some wealth, you can't be trusted.”― Miles Davis

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