ClinicSpeak: questions your neurologist should ask you

A section from Atul Gawande’s ‘Being Mortal’ that impressed me was the questions Palliative Care physicians ask their patients. These questions are equally relevant to people with chronic disease. Therefore I would encourage all of you to ask your neurologist to ask you these questions:

1. What do you understand your prognosis to be?

2. What are your concerns about what lies ahead?

3. What tradeoffs are you willing to make?

4. How do you want to spend your time if your health (disabilities) worsen?

5. Who do you want to make decisions for you if you can’t make them yourself?

I sure this list can be expanded on; some of you may have some suggestions. What this list does it refocuses the doctor-patient relationship and puts the patients will and desires center stage.

11 thoughts on “ClinicSpeak: questions your neurologist should ask you”

  1. I don't think my neurologist would have time for these questions. And I would find them a bit odd:1. With PPMS, who knows? 2. What's the point in worrying about things I can do nothing about?3. Heh?4. I'll see if/when I get there.5. Nobody.

    1. Totally agree. I don't think they're relevant to MS. What happened to being positive? I've seen too many young patients leave the clinic in tears.

    2. Positivity is indeed so important in coping with the uncertainties of MS. I went through a very depressed phase wondering how I would cope if my PPMS started to impact my right hand to the point I could no longer draw – something which is very important to me. So I sought the advice of others with PPMS, asked how they cope. They told me that MS may affect my right hand, but equally it may not, and to concentrate on what I can do today and not to worry too much about tomorrow. They told me that if I am prepared to accept and adapt, I will still have a sense of control. Since receiving this wise counsel, my fears faded away. The more I think about what it takes to cope well and _live_ with the uncertainties of MS, the more ill considered the suggested questions seem to me personally.

  2. My responses:(i) can't you tell me as you trained for seven years and get paid well(ii) why don't you look at the EDSS chart or think about the Debbie Purdy case – that will give you a good sense of my concerns(iii) happy to risk one in five chance of death to stop me being disabled(iv) I'll be heading to Switzerland if it gets bad – no need for you to worry(v) I won't be around if I can't make decisions for myselfI think these questions are a waste of time. Once again neuros hide from their responsibilities. They should be guiding patients to achieve the best long-term outcomes. I've been in consultations with oncologists and they are in a different league. The conversation ran as follows – the results show that you have xx cancer. Survival rates are improving but the survival rate at five years is xx per cent. There are three treatment options x' x and x. From my experience I would recommend getting you started on x as soon as possible. I have a number of patients who have been on x for 9 years and are doing very well. I'll give you some information on all three treatments. We'll meet in a week to discuss the way forward. This is a much better use of a specialists time than running through a bunch of questions which won't help the patient at all. For RRMS there are treatments available which put the disease in remission. Neuros should be directing patients down this route not pushing back on patients and asking them questions which will illicit answers which are just guesswork.

    1. MS isn't a killer disease unlike cancer. Furthermore, disability is not clinically viewed to be as bad as death, hence why neurology doesn't present comparable scenarios.

  3. What my answers would be if the neurologist asked these questions:1. What do you understand your prognosis to be?YOU ARE SUPPOSED TO TELL ME THAT DOCTOR2. What are your concerns about what lies ahead?CONCERNED ABOUT THE PROGNOSIS. OTHER CONCERNS ARE PERSONAL3. What tradeoffs are you willing to make?NEED SOME INFORMATION AND ADVICE ON THIS4. How do you want to spend your time if your health (disabilities) worsen?HOW DOES THAT CONCERN YOU? WHAT CAN YOU DO ABOUT IT ANYHOW?5. Who do you want to make decisions for you if you can't make them yourself?NOBODY. WHEN I REACH SUCH A STATE I WANT PEOPLE TO RESPECT AND FOLLOW MY PREVIOUSLY STATED WISHES

    1. I totally agree. The starting point for ALL MS patients is that don't want to get any worse / would like to get some function back. If only neuros / researchers could focus on this and steer away from all this psycho-babble. We are ill / we are patients – I want a neuro to advise me / provide me with treatments to keep me as healthy as possible. It's not rocket science. Ten minutes on an MS site shows you how bad MS can be. Surely even the most cold hearted neuro can understand our fears relating to mobility problems / incontinence / job loss….

  4. I think they are excellent questions to ask actually. They will quickly establish how much the patient knows about MS and push HP's to highlight the risks of the disease – the latter is often lacking and given a rosy spin in my experience. Exploring a patient's understanding of MS, their take on risk, personal value base and priorities is surely a requirement to partnership working and personalised treatment / care plans. Other questions I'd like to see asked are: What is your understanding of the options / services available to you?What support / service do you feel would be of most benefit to you right now and in the future?What role would you like to take in the planning / monitoring of your care?

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