Friday, 4 July 2014

Clinic Speak: getting it wrong

Getting it right when giving the diagnosis of MS. #ClinicSpeak #MSBlog #MSResearch

"On Tuesday I got it wrong and need to apologise. I work in a teaching hospital and tend to have several medical students or visiting fellows in my consultation room at any one time. In addition to the medical students I supervise at least two other doctors who have separate consulting rooms. Hence, I am in and out of my room and people come and go during consultations. On this particular occasion I was giving someone the diagnosis of MS and was disturbed three times during the consultation. Although this particular patient was expecting the diagnosis - she had previously been diagnosed as having CIS - she was still very upset and simply needed my undivided attention and not divided attention. On reflection her experience of this consultation must have been terrible. What prompted me to write this post is the very sensitive and moving article below that I read on the Tube going to work yesterday. Although it was about dying with dignity in ITU it covered several issues about compassionate care; reading it made me realise that I have to improve the way I deliver care in my current working environment. What this blog, and interacting with MSers outside of clinical practice, has taught me is how poor neurologists are in general, in giving MSers the diagnosis of MS; me included."

"Several of the points in the table below summarise what compassionate care is all about and is not only relevant to the dying patient, but to someone who is being told that they have MS or any other life-changing diagnosis." 

Cook & Rocker. Dying with Dignity in the Intensive Care Unit. N Engl J Med 2014;370:2506-14.

Examples of the ABCDs of Dignity-Conserving Care.*

Attitudes and assumptions can affect practice.

  • Reflect on how your own life experiences affect the way in which you provide care.
  • Be aware that other clinicians’ attitudes and assumptions can affect their approach to patients.
  • Teach learners to be mindful of how their perspectives and presumptions can shape behaviors.

Behaviors should always enhance patient dignity.

  • Demonstrate with nonverbal methods how patients and their families are important to you.
  • Do not rush; sit down and make eye contact when talking with patients and their families.
  • Turn off digital devices and avoid jargon when talking with patients and their families.

Compassion is sensitivity to the suffering of another and the desire to relieve it.

  • Elicit the personal stories that accompany your patient’s illness.
  • Acknowledge the effect of sickness on your patient’s broader life experience.
  • Recognize and relieve suffering.

Dialogue should acknowledge personhood beyond the illness.

  • Explore the values that are most important to your patients.
  • Ask who else should be involved to help your patients through difficult times.
  • Encourage patients and their families to reflect and reminisce.
* Adpated from Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. BMJ. 2007 Jul 28;335(7612):184-7.


  1. When my son was in hospital and was diagnosed with transverse myelitis, the doctor told him it was most likely a 'one off' and to go home and forget about it, but if he had more problems later, it could turn out to be a demyelinating disease. He went home, and before his next consultation with his neurologist, he got a letter from the hospital ( a copy of the one to his dr.) about their findings and that he'd been warned it could turn out to be multiple sclerosis. He was shocked as he hadn't realised that's what the doctor meant. Perhaps his neuro didn't want to worry him. When he did get his consultation and diagnosis of ms, he did get a long undisturbed chat with his neuro (but he wasn't an msologist).

  2. I imagine that the job of informing the patient of the diagnosis is much easier than it was 15-20 years ago.

    As someone who was diagnosed by an old school neuro (no empathy / no hope / little information / condescending attitude i.e. don't get yourself too worried etc.) I would suggest the following approach:

    “[Don’t say I’m sorry to inform you] The test results have confirmed that you have relapsing remitting MS. We’ve made great strides in relation to treatments for this disease, and there are now effective treatments available which can really impact on the disease i.e. they can shut down disease activity such as relapses. Other treatments are in the pipeline. Whether to start a treatment will be your choice, but I’d strongly advise that you begin one of the highly effective treatments as soon as possible. This approach will hopefully significantly reduce the impact of the disease on your life i.e. you should hopefully be able to get on with your life as normal. I’d like to see you in the next couple of weeks to discuss treatment options. Here are some leaflets about the disease and the treatments which are currently available. I will get an MS nurse to contact you in the next couple of days. There is a lot to take in, but I want you to know that the treatments currently available, and those in the pipeline, really give hope that we can get on top of this disease and you can get on with your life. Are there questions you’d like to ask me now?”

    PPMS and SPMS are a different kettle of fish – need treatments to give people hope.

    1. That's all nice and well but we RRMS-ers know from the start that one fine day our disease will for sure turn into SPMS for which there are no drugs at all - so that the relatively tranquil phase of RRMS is spent fretting and counting days until the apocalypse.

    2. I like your script too. My neuro used the words, "I have something interesting to show you ..." then brought up my MRI and told me I had MS. Then he said that if you have to have a neurological disorder, this is one of the better ones. And, later when I was getting a steroid infusion, he came in, looked at his iPhone, and said, "If you can hold out 5 years, MS treatments are going to be dramatically more effective."

      This was late 2011. I think he must have been reading about alem, rituximab, anti-lingo.

      He's hopeful, and that makes me hopeful. I appreciate his approach.

    3. Thanks :-)) Good luck to you Tony.

    4. Bennie, he was trying to cheer you up - the line 'MS is one of the better ones' is as old and as untrue as ever (I was told it too). Virtually everyone who gets an MRT for some symptoms fears MS or a tumor. MS is absolutely horrid because it hits you in your prime and nullifies your life prospects to wheelchair (if you are lucky) or utter degeneration.

      I envy all the 70 year olds who get Alzheimer's - at least, they had time to live their lives, form relationships and careers - in most cases MSers didn't even have a chance to have one of the above.

      And believe me, I got diagnosed five years ago - the only improvement is that I don't need to inject but take pills - otherwise my health is equally bad.

  3. Well, when I compare the words you used to me with what my previous neuro had said (= joky, shoulder-shrugging, small talk, fidgety), for my money you're there already. Integrity will shine through even with interruptions.

  4. I got my diagnosis by letter - cold, beaurocratic and impersonal i.e. making it all the easier for the doctor but not for the patient. Unfortunately, even today, the attitude described above from 20 years ago prevails.

    MS is an expensive disease and I often feel almost apologetic if I ask for extra options - and am often refused them.

  5. The best thing you could do is contact this patient and apologize and spend some time on the phone answering questions. I'm sure she has some to ask as she has had time to think about her diagnoses.

  6. I had MS double vision as my first attack. I received a phone call with my MRI results to say yes I have a swelling on the brain (MS was not metioned) by the neurology registrar. I was informed I could pick up steroids in a few days. I saw a GP to get the prescription and she said I had demyelination on the brain which may or may not be a sign of MS. She seemed put out she was was the person giving me my diagnosis and that it should have been the hospital doing this. In my opinion it would have been much much better for me to go to the hospital to discuss my MRI results with the registar or one of his colleagues and then to get my prescription from the GP.

    1. It's now happening with other illnesses too. Even the clinic letters are vague. I can't see how GPs are meant to look after us when the specialists are passing the buck.

    2. I don't think it's right or fair on the patient to get a phone call with results like that. It really should have been a face to face appointment to discuss my MRI results with the hospital. The registrar asked me in this phone call how I felt. I replied "like i've been in a car crash", he didn't ask me what I mean by that.


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