Palliative care hotline: do you need it?

Does knowing that MS can become a terminal illness useful or not? #MSBlog #MSResearch

“Since producing my holistic approach to MS tube map below it has had over 1 million views on SlideShare and I have had many requests for other people to use and adapt it for their own use. I personally think it is out of date and in a serious need of an update; unfortunately, I don’t have the time at present but made do in the near future. A particular MS Society asked if they could use the map but wanted to remove the ‘Terminal Line’ as it mentions palliative care and assisted suicide; they didn’t want to expose newly diagnosed MSers, and those with minimal disability, to the harsh reality that MS itself can lead to death. Most mortality studies estimate that between 50-75% of MSers will die from MS-related complications. Do you think it is right to shield MSers from this information?”

“The study below focuses on an unmet need in MS services, i.e. palliative care. Although this is only a pilot study of a palliative care hotline it addresses a unmet need for MSers with advanced disease and their families. A simple call and assessment on the phone identified that 10 out of 15 callers were deemed eligible for palliative care and appropriately referred. In the UK we screen our patients and refer them to the palliative team for assessment if we think is necessary. The problem with palliative care services in the UK is that they tend to only want patients with an estimated life expectancy of less than 6 months and the service tends to be dominated by cancer patients with pain relief being high on the agenda. This is why a bespoke MS palliative care service is needed with a different life expectancy cut-off; i.e. I would guess 2-years would be more appropriate for MS. Why? A large part of palliative care, is respite care, that gives their carers much needed time off. Being a full-time carer of someone with MS, or any other disabling disease, is a 24-hour job and one of the most stressful  on the planet. The 2-year time window will also allow an appropriate time to reflect on the situation and discuss and put in place advanced directives. These are essentially ‘living wills’ that instruct the medical team on how to treat a patient when they are admitted to hospital with a life threatening MS complication, for example aspiration pneumonia. It perfectly reasonable to state in your living will  that if this situation arises you don’t want assisted ventilation, nor do you want to be admitted to an intensive care unit. Similarly, you can state you don’t want to be tube fed. Do you have a living will? Do you think you need one?”

Epub: Knies et al. A palliative care hotline for multiple sclerosis: A pilot feasibility study. Palliat Support Care. 2014 Sep 5:1-8.

Objective: Research findings suggest that MSers severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counselling hotline for severely affected MSers and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study.

Method: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semi-structured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care).

Results: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers.

Significance of results: Based on our pilot feasibility study, the hotline seems to be a valuable service for MSers severely affected by MS and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.

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.


  • I'm all for honesty, but your posts seem to focus on all the worse case scenarios of MS. Yesterday you posted on rectal dysfunction and today is end of life issues. You were the one who dreamt up the idea of rebranding MS as a dementia. I might do some research to examine the hypothesis – does Prof G increase anxiety and depression among users of his blog? When you are in Boston can you find something positive ie research being undertaken by teams to improve the outlook of MSers eg repair trials, work to stop progression. You might have time to reflect o what it is like for someone with this disease – the losses, the hopelessness, the doom that's awaiting them. Your tube map is very clever, but hasn't given any comfort to me or my family. They and I know the future is grim, but I must continue to put on a brave face. When you collect your air miles and enjoy Boston, wonder what it's like to be a doctor gives patients their lives / health back. My living will makes sure that some gifts will go to worthy causes such as cancer research and macmillan nurses where real strides are made and dignity is provided. Will actrims / ectrims surprise me with real breakthroughs and hope – I won't hold my breath.

    • Re: "I might do some research to examine the hypothesis – does Prof G increase anxiety and depression among users of his blog?"

      Please note that we report on research as it come online. Our motto is interpreting good, bad and other research news. I strongly believe that if MSers don't know how bad MS can be they would shy away from early effective treatment with high-risk drugs.

      I suppose I could wear rose-tinted spectacles and paint an unrealistic picture of what MS is and then you would get angry for me for creating biased blogging! In the post above and the accompanying questionnaire I am probing the issue of whether or not we should shield MSers from bad news. Let's see what the survey produces.

    • Who is shying away? Last time I saw my neurologist, I was informed they is nothing beyond copaxone for someone like me, as the focus has shifted to people with progressive MS. As for copaxone, I tried it for a few years, it made no difference to my relapse rate or brought any changes except weight gain and lipoatrophy. So not in my opinion that effective. I'd be more than happy to try a more high risk DMT with a better chance of effectiveness.

    • " if MSers don't know how bad MS can be they would shy away from early effective treatment " is an irrelevant statment for progressive MSers

      They know how bad MS can be and I wish there was a way of un-knowing or forgetting it.
      For their mental health it's best they avoid reading anything about how bad MS can be.
      Living will be easier

  • RRMSers are the same as CISers going by the survey Q, well, I never knew that? When did that happen or has it always been that way?

    • Re: "RRMSers are the same as CISers going by the survey Q, well, I never knew that? When did that happen or has it always been that way?"

      80% of CISers go onto develop MS within 20 years of disease onset. So they are not necessarily the same disease. In this survey I am simply lumping them together as an index of non-relapsing attack onset disease. I am interested to see if those with CIS/RRMS respond differently to the survey compared to MSers with SP and PP MS.

  • I recall a court case where permission was gained by a Trust to insert a PEG into a patient lacking capacity with very advanced MS. This was despite the family strongly opposing and stating the patient would not have wanted it and had verbally said as much to them previously. Definitions of best interest and quality of life differ greatly and I think it’s wise to get one's own ideas of this down in writing.

    I am disappointed but not surprised an MS charity wanted to amend your chart. I attended a newly diagnosed event run jointly with a charity and my local Trust not long ago. We were told MS does not kill you and does not affect life expectancy. After the event I spoke to both the specialist nurse and charity about it and the response I got was the same as yours, they don’t want to scare people.

    I think this paternalistic approach is doing MS patients an injustice. Painting a rosy picture will not prompt patients to push for DMT’s and neither will it raise the profile of MS in the media. Many neurologists seem to take the same line with the “lets wait and see approach” and I think this is equally damaging as while it lasts denial is a nice place to be in. People need information to manage their health and naturally assume their medical team and specialist charities will give accurate data.

  • Professor Giovannoni you frighten people and maybe that is your aim .I am on Tysabri and you frightened me about the rebound effect with one of your own patients without giving full context and history understandably for privacy and I was so glad I could talk to my own neurologist.Yes MS sucks and it is bloody serious but people have to live the best lives they can Perhaps I am an optimist but I'd rather enjoy each moment now than being anxious and worrying all the time about a future that may not happen it might and I will deal with it then.A living will is in theory a good idea but not just for us who have MS And we all know how bad MS can get cos we research it and we frighten ourselves. we need doctors for their expertise balance and old fashioned hope.

  • I think you'd get more replies to this if you changed the title from palliative care to living wills/ advanced decisions.

By Prof G



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