ClinicSpeak: end-of-life care in MS

What metric should we use to measure the quality of our MS services at the end-of-life? #ClinicSpeak #MSBlog #MSResearch

“We have debated end-of-life care and advanced directives on our blog posts many times before. The consensus has been that MSer choice is what is important in driving key decisions around end-of-life issues. I therefore find it odd that some of of you think we should include the issue of end-of-life care in any quality standards/metric that involves the care of MSers. The following excerpts from a recent perspective piece gets to heart of the problem; it was written in response to an Institute of Medicine report of Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (2015)’. I believe strongly in the holistic management of MS and to do this properly we need some kind of metric in relation to end-of-life care; simply having it as part the quality debate will get healthcare professionals, and MSers, to think about it and consider their role in the management of MS in its terminal phase. A lot of end-of-life care is futile, expensive and undignified. Don’t we all deserve the right to choose a dignified death?”

Pizzo & Walker. Should We Practice What We Profess? Care near the End of Life. N Engl J Med 2015; 372:595-598.


….. Physicians should be in a better position than people without medical training to judge the likely value of health care services available near the end of life. Yet several studies have revealed a disconnect between the way physicians themselves wish to die and the way the patients they care for do in fact die……

….. A 1998 survey of participants in the Precursors Study, which enrolled 999 physicians who graduated from Johns Hopkins School of Medicine between 1948 and 1964, revealed that 70% had not had a conversation with their own personal physician about end-of-life care. But 64% had an advance directive that they’d discussed with their spouse or family, and more than 80% indicated that they would choose to receive pain medication but would refuse life-sustaining medical treatments at the end of life….

….. Similar preferences were expressed in a 2013 survey of 1147 younger academic physicians (a group that was more diverse and included more women): 88.3% indicated that they would forgo high-intensity end-of-life treatment..

…. Complex social, cultural, economic, geographic, and health system factors and impediments contribute to this discordance between how doctors treat their patients and how they themselves (and the majority of surveyed Americans) wish to be cared for at the end of life…..

…… In Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life, an Institute of Medicine (IOM) committee (which we cochaired) concluded that the U.S. health care system is poorly designed to meet the needs of patients and their families at the end of life and that major changes are needed…..

…… We need to begin by fostering patients’ ability to take control of their quality of life throughout their life and to choose the care they desire near the end of life…..

….. The IOM committee concluded that “federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life.”…..

….. Physicians can also work to ensure that their patients have access — in all care settings — to skilled palliative care or, when appropriate, hospice care….. 

….. Ideally, physicians would initiate discussions about advance directives with their patients at key milestones throughout their lives….. 

…. Changing the culture in these ways will require intervention at all stages of physicians’ education….

….. Physicians’ experiences with medical care and dying patients have helped crystallize their desires for their own end-of-life experiences….

….. As Dying in America makes clear, physicians should now practice what they profess, to ensure that their patients have the same options that they themselves, and a majority of Americans, would choose and that they honor patients’ preferences at the end of life.,,,,,


Delivery of care: Government health insurers and care delivery programs, as well as private health insurers, should cover comprehensive care, including palliative care and hospice care for persons with advanced serious illness who are nearing the end of life.

Clinician–patient communication and advance care planning: Professional societies and other organizations should develop standards for clinician–patient communication and advance care planning that are measurable, actionable, and evidence-based. Payers and delivery organizations should adopt these standards and their supporting processes and integrate them into assessments, care plans, and the reporting of health care quality.

Professional education and development: Educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and health care delivery organizations should establish appropriate training, certification, and licensure requirements to strengthen the palliative care knowledge and skills of all clinicians who care for patients with advanced serious illness who are nearing the end of life.

Policies and payment systems: Federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of high-quality care consistent with patients’ values, goals, and informed preferences. Insofar as additional legislation is necessary to implement this recommendation, the administration should seek and Congress should enact such legislation. The federal government should require public reporting on quality measures, outcomes, and costs and encourage private payers and delivery systems to do the same.

Public education and engagement: Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups, health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide fact-based information to encourage advance care planning and informed choice based on individuals’ needs and values.

The full report is available at

13 thoughts on “ClinicSpeak: end-of-life care in MS”

  1. "Management of MS in it's terminal phase". We keep me told MS is not a terminal disease and only shortens life by 6-8 years…. Then we hear about late stage / end stage MS. When I was diagnosed my coldhearted neuro wrote to my GP saying that I appeared anxious about my diagnosis. I had a look at the Quality Standards and my overall assessment is that I couln't care less about them. More bureacracy for the NHS, more tracking, more monitoring, more auditing. Waste of time and a waste of public money. What we need are two simple things (i) caring / knowledgeable young neurologists who strongly advise their patients to take highly effective treatments to reduce brain damage; (ii) a quicker more pragmatic drug licencing / approval system which has the patient's interests at heart and does not hide behind the issue of safety (when the danger of a serious disease way outstrips the fear of getting a headache or a skin rash). In the age of austerity we should be streamlining NHS paperwork not creating a raft of reports / monitoring. A neuro dealing with MS patients needs three things (i) highly effective anti-inflammatory; (ii) neuro-protective agent; (iii) repair agent. This combo would allow a neuro to deal with all forms of the disease. Standards won't make me better, better treatments and neuro who are focused on their patients' best interests will.

    1. Yes, I agree with you in principle, but there are a large number of MSers who have missed the early effective treatment option. Most chronic diseases have a terminal phase, including life itself. The fact that MS reduced life expectancy by 6-8 years tells it all. Most MSers develop MS in their 20s and 30s and if they live into their 70s they will be living for a long time with a potentially very disabling disease. Putting our heads in the sand and ignoring these facts is not going to help the management of MSers in the late stages of the disease. In medical school I was taught that life was a sexually transmitted disease with 100% mortality.

  2. Is the theme of today's post death? This one is about end of life care and the one below is about death rates in France. Any chance of some good news e.g. result of the Inspire trial, some analysis showing what MS treatments might be like in 5 years time. I saw an article about an MS nurse in Australia. She said that she hoped that in ten years, the treatments would be that much better that she would not be seeing the same level of disability i.e. treatments would prevent MSers getting disabled or massively delay the onset of disability. We must be getting nearer to this prospect (Ocrelizumab?) and possible some neuro-protective drugs. I don't want to see through rose tinted glasses, but surely the blog can do better than keep reminding us that we are on the slippery slope to death from MS! What happened to your epiphany on Sunday – all seemed so hopeful?

  3. I'm not reading any more death posts. I'm not dying or dead yet. When I get there, I'll sort it out.

  4. Agree with S above. I don't want to die with dignity, just want to have a good run of a reasonable quality of life. MS research across the world seems to be in the doldrums. Tthis blog is about research which I interpret as work that increases undestanding of this disease or trial results. It looks to me like the MS researchers are waving a white flag and saying "it's all too difficult". It must be bad if we are asked to comment on NICE quality standards or the book choice of the week is death in America (I'll stick to Harry Potter if you don't mind). Where the hell are the Inspire trial results? Where's the impetus for advancement / change. It looks like Professor Hauser's work on B cellls is delivering – Ocrelezumab on its way. But what hell have the MS resarchers in Italy, Spain, Holland, Sweden…. been up to for the last decade. Too many grants, too many worthless EAE research papers. MD2 thinks 2015 has been a good year for MS research. I don't agree. We can deal with our own deaths, surely the role of researchers and neuros is to make our lives better.

  5. I get the impression that a lot of MSers have unrealistic expectations about how far we are in terms of genuinely combating this disease. I also get the sense they're not being grownup about how things are, citing things like "epiphany on Sunday " and "Harry Potter", which to me demonstrates that we prefer to live in a world of fantasy when it comes to dealing with the realties of life and illness.

    1. Perhaps some of our expectations were fuelled by programmes such as Promise 2010 which included claims such as "rolling back the ravages of MS", "protection and repair"… We were sold a pup as the millions spent did not deliver. Life with MS is a nightmare if you had health and dreams. We live with the realities of the disease every day. It's just a pity that the researchers claims in the grant applications are never delivered. My Harry Potter reference was just a joke. A reaction to the sometimes thoughtless posts that find there way on to this blog – "Dying in America". We all know MS turns out bad, but I can't see the point of keep telling us that. We are trying to do the best we can as we climb up the EDSS scale.

    2. Not entirely sure what you mean by unrealistic expectations here? I think we are getting much further in research than what I've observed/experienced in 30 plus years. However, I can understand why many people are frustrated and do not see this as them living in a fantasy world. I find that quite insulting. I have nothing to complain or be frustrated about as I have very good MS services and on a highly effective DMD but this seems to make me one of the exceptions not the rule in MS care – just looking at the comments on the treatmeright website and I can't think for a second that my experience is the norm. It is unjust, it is crap and it is peoples' experiences so I don't think you can negate them with your comment here. We all deal with MS differently, and even if it is not your way or experience, I do not feel comments such as your one above helps.

    3. There is nothing "thoughtless" about dying, anon 2:31pm.The only advice I can give you is to just go with things. They may find a cure for MS tomorrow. They may never find a cure for another millennia. Everything is half chance in tis life. Just go with it.

    4. "Perhaps some of our expectations were fuelled by programmes such as Promise 2010 which included claims such as "rolling back the ravages of MS", "protection and repair"… We were sold a pup as the millions spent did not deliver."Not true, Promise 2010 is bearing fruit, the phenytoin trial result is just the start. Hopefully, if enough can be recruited the Proximus trial will advance things further and there are more in the pipeline such as MS SMART but you have to have the basic research in place before you embark on clinical studies. It's never as quick as we'd all like but the pace increases year by year.

  6. Thanks for this. As this applies to ms, what I see is a lack of caring staff who are given sufficient time and resources to do their job. Bed sores should be 100 % preventable. People with arm weakness should be carefully helped to eat. All this takes time which requires budget.Re end of life decisions generally, it's a very tough issue. If doctors are not going to make these decisions themselves, than they need to be a lot more blunt and open about prognosis. Overall I am very much in favor of patient autonomy re treatment decisions and preferences. But the old doctor knows best model gave the doctor the power to use experience and judgement to decide when to provide or withdraw treatment at the end of life. It was probably kinder.Patients and their families don't know what it means to resusitate or intubate someone. On medical television shows cpr works to save lives and the patients return to health. If doctors are going to ask families to make those decisions than they need to be much more direct about the chances of meaningful success. To a non medical person, if a doctor says do you want us to try to save your grandmother, the obvious answer would be of course, yes. We don't expect to be offered treatments where save translates to a few more weeks of hard core suffering. Yes doctors should offer palliative care, but without the intimate knowledge of what is and isn't possible it is really hard to make those decisions, especially for someone you love.

  7. I posted a long message yesterday (sorry) and feel strongly that there should be no targets for completion of advance care directives. This is not the same as saying that there should not be any standards for these conversations. It's the metrics that are the problem.What is important is for doctors and nurses to be confident in their conversations with patients (for many illnesses/long term conditions, not just MS) and to be more enquiring about someone's concerns for the future, how they are coping etc. Asking if they want to talk more about their illness and asking if they have views on their treatment and management if/when they become more unwell. The problem is that some people are desperate to have this conversation and others are deeply offended and even frightened. Setting targets is a one size fits all tick box. Who is that target for?I have overheard a lot of conversations that start with "I need (!) to ask you if you want to be resuscitated" or "I need to ask you where you want to die'. So harsh and clumsy.Maybe targets should be about staff training in communication about end of life conversations.

    1. This is a tricky domain and until clinicians actually do a dedicated service for this they don't get the full picture. So last year, I lead on an MDT neuropalliative care clinic – it was my first experience leading on a service that is perceived a domain of oncologists, and it was the first time for the oncologist in the team to think about MS in the same line as palliation. Lets just say it was hit and miss, and there is no prescribed answer, however I strongly believe that there is a window period in which the conversation can be a two-way discourse between the patient and clinician. What I'm alluding to here is capacity. A persons capacity to make a decision for him/herself is based on the following – they are able to understand the information relevant to the decision, to retain the information, use/weigh the information as part of the decision process, and communicate the decision. In my usual analytical slant I realized that I was not able to meet this requirements in those with an EDSS greater than 7.5 (you should understand that this class VII evidence – i.e. a consensus between myself and oncologist). But raises a lot of issues, least of which are relations seeking power of attorney. At some stage the discussion though sensitive needs to happen whilst the person in question still has capacity, granted experience helps, but it's a continuous process with decisions happening over 6 months + and its a multidisciplinary effort.

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