Generation O; paternalism dressed-up as misguided optimism #ClinicSpeak #MSBlog #MSResearch
“This post is in response to a comment left in unrelated comments yesterday.”
Question: “How
does reluctance by doctors to share bad news factor in to the neurologist – MS
patient dynamic? With my own diagnosis, by a general neurologist, it seemed he
did not want to believe I had MS, possibly because he didn’t want me to be ill.
Since then, he’s been more than helpful in facilitating many kinds of
treatment, but much less forthcoming with his assessment of how I’m doing.“
does reluctance by doctors to share bad news factor in to the neurologist – MS
patient dynamic? With my own diagnosis, by a general neurologist, it seemed he
did not want to believe I had MS, possibly because he didn’t want me to be ill.
Since then, he’s been more than helpful in facilitating many kinds of
treatment, but much less forthcoming with his assessment of how I’m doing.“
“The
answer to this lies in the glass-half-empty glass-half-full view of the world.
Evolution has hard-wired our brains to be optimistic. When a gambler goes to
the casino he doesn’t go to lose money; he believes he is going to win. When
someone is diagnosed with cancer they are not the one who is going to die in 2
years, they are determined to be one of the long-term survivors. When someone
is diagnosed with MS they are never the one who is going to end-up in a
wheelchair, they are the one who is going to turn-out to have benign MS. This optimistic
attitude often extends to neurologists and other healthcare professionals; they
tend to emphasise the favourable prognostic factors and believe in shielding
you from the all facts to help you cope in coming to terms with the diagnosis and
help you adapt to your disease. This protective, paternalistic, attitude is
very pervasive in the field of medicine and in my experience is the norm.”
answer to this lies in the glass-half-empty glass-half-full view of the world.
Evolution has hard-wired our brains to be optimistic. When a gambler goes to
the casino he doesn’t go to lose money; he believes he is going to win. When
someone is diagnosed with cancer they are not the one who is going to die in 2
years, they are determined to be one of the long-term survivors. When someone
is diagnosed with MS they are never the one who is going to end-up in a
wheelchair, they are the one who is going to turn-out to have benign MS. This optimistic
attitude often extends to neurologists and other healthcare professionals; they
tend to emphasise the favourable prognostic factors and believe in shielding
you from the all facts to help you cope in coming to terms with the diagnosis and
help you adapt to your disease. This protective, paternalistic, attitude is
very pervasive in the field of medicine and in my experience is the norm.”
“It
is well-known that when someone is diagnosed with a disease, that is viewed
unfavourably by society, that there is a period of shock and denial. Most
people come out of the diagnostic consultation with their neurologist remembering
one thing, that they have MS and rarely recall the other details that were
discussed during the consultation. This is why I am considering allowing, and
encouraging, MSers to record and play back their consultations with me so as to
counteract this problem. I have had some push-back from my colleagues, and our
nurses, on this idea because of of the potential legal and privacy implications
of making the recordings. A compromise would be to study this in a controlled
environment as part of a study with ethical permission to see if it improved
the MSer experience. At present to counteract this selective hearing, or
forgetfulness, during bad news consultations I offer my patients the option of
listening in when I dictate my letter to their referring doctor. I also copy
them into the letter and encourage them to write down any questions they want
answered and provide them with the option of seeing me to discuss the questions.
If they have MS we arrange for them to have a one-to-one session with one of
the MS clinical nurse specialists in a next week, or two, and provide them with
a well-written introductory guide about MS; we currently favour the guides
produced by the MS Trust. We tend to discourage recently diagnosed MSers from reading
to widely about the disease as it can be overwhelming. Once the diagnosis and
basic facts are in place and the person understands the basic facts we have the
foundation to build on with regard to detailed information about prognosis and
treatments. The speed and detail we provide information depends on the
individual and is affected by a larger number of factors including prior education
and other personal factors. I personally don’t believe in hiding any
information from MSers, but I do believe in layering the information and
providing it at a rate and depth that allows one to build trust and confidence
between patient and me; this is what I call a partnership. Please note I am
using the term patient in this context and not MSer; patient seems more
appropriate when discussing people with MS under my care.”
is well-known that when someone is diagnosed with a disease, that is viewed
unfavourably by society, that there is a period of shock and denial. Most
people come out of the diagnostic consultation with their neurologist remembering
one thing, that they have MS and rarely recall the other details that were
discussed during the consultation. This is why I am considering allowing, and
encouraging, MSers to record and play back their consultations with me so as to
counteract this problem. I have had some push-back from my colleagues, and our
nurses, on this idea because of of the potential legal and privacy implications
of making the recordings. A compromise would be to study this in a controlled
environment as part of a study with ethical permission to see if it improved
the MSer experience. At present to counteract this selective hearing, or
forgetfulness, during bad news consultations I offer my patients the option of
listening in when I dictate my letter to their referring doctor. I also copy
them into the letter and encourage them to write down any questions they want
answered and provide them with the option of seeing me to discuss the questions.
If they have MS we arrange for them to have a one-to-one session with one of
the MS clinical nurse specialists in a next week, or two, and provide them with
a well-written introductory guide about MS; we currently favour the guides
produced by the MS Trust. We tend to discourage recently diagnosed MSers from reading
to widely about the disease as it can be overwhelming. Once the diagnosis and
basic facts are in place and the person understands the basic facts we have the
foundation to build on with regard to detailed information about prognosis and
treatments. The speed and detail we provide information depends on the
individual and is affected by a larger number of factors including prior education
and other personal factors. I personally don’t believe in hiding any
information from MSers, but I do believe in layering the information and
providing it at a rate and depth that allows one to build trust and confidence
between patient and me; this is what I call a partnership. Please note I am
using the term patient in this context and not MSer; patient seems more
appropriate when discussing people with MS under my care.”
 |
| The provision of information should be evidence-based and layered.
Peel the layers off the onion too quickly and you will end up crying. |
“The clinical
skill of communication is often referred to as an art, rather than a science.
You learn the theory that underpins it at medical school but you can only
master it on job; this is why there is no substitute for clinical experience.”
skill of communication is often referred to as an art, rather than a science.
You learn the theory that underpins it at medical school but you can only
master it on job; this is why there is no substitute for clinical experience.”
Statement: “It’s worked out well enough, but without this blog and other resources, I
would have known much less about what sort of help might be possible and so
what symptoms to highlight and questions to ask. I don’t distrust his good
intentions or willingness to help, but I do question his honesty with regard to
hard facts. If he’s trying for placebo effect, it may be counterproductive as I
really don’t trust what he says about how well I’m doing at this point.”
“The
really don’t trust part of this comment jars with me. If you don’t trust your
neurologist you need to say so and discuss it with him or her. You have to
realise that in some healthcare systems we have our hands tied behind our backs
with regard to adopting the latest evidence. For example, in the UK the current
treatment guidelines as promulgated by NICE don’t allow us to switch or
escalate treatment based on subclinical or asymptomatic relapses. This is why
your neurologist may be reluctant to do an annual MRI to monitor your disease.
This should not stop you asking the question; it may make him or her question
their own practice and challenge the status quo. How do you think HIVers got what they wanted so quickly? They became activists and demanded action; they
were frustrated with the level of passivism shown by the scientific and medical
community to their plight. They were dying and hence wanted answers and access
to treatment ASAP. They weren’t prepared to take no for an answer and they
certainly weren’t prepared to be fobbed off with misinformation by patronising
consultants. HIV activism changed the patient-doctor dynamic for good. MSers
needs to learn from the HIVers.”
really don’t trust part of this comment jars with me. If you don’t trust your
neurologist you need to say so and discuss it with him or her. You have to
realise that in some healthcare systems we have our hands tied behind our backs
with regard to adopting the latest evidence. For example, in the UK the current
treatment guidelines as promulgated by NICE don’t allow us to switch or
escalate treatment based on subclinical or asymptomatic relapses. This is why
your neurologist may be reluctant to do an annual MRI to monitor your disease.
This should not stop you asking the question; it may make him or her question
their own practice and challenge the status quo. How do you think HIVers got what they wanted so quickly? They became activists and demanded action; they
were frustrated with the level of passivism shown by the scientific and medical
community to their plight. They were dying and hence wanted answers and access
to treatment ASAP. They weren’t prepared to take no for an answer and they
certainly weren’t prepared to be fobbed off with misinformation by patronising
consultants. HIV activism changed the patient-doctor dynamic for good. MSers
needs to learn from the HIVers.”
 |
| MSers can learn from HIV activists. |
Question: “Any thoughts would be appreciated.”
“My
answer to this part of the question is short and to the point. If you don’t
know about the prognosis of MS how can you assess the risk of treatments that
may have life-threatening complications? The benefit and risks of any treatment
need be balanced against the risks of MS. You need to remember that when you are told a fact about MS that 50% of MSers do worse than average and 50% do better
than average. You need to try and work out what half you fall into; neurologists
can never be 100% certain all they can tell you is whether or not you have a
poor or favourable prognostic profile. If they can’t make the call and your
prognosis is indeterminate you need to make sure you are given options and
choices and that your disease activity is actively monitored.”
answer to this part of the question is short and to the point. If you don’t
know about the prognosis of MS how can you assess the risk of treatments that
may have life-threatening complications? The benefit and risks of any treatment
need be balanced against the risks of MS. You need to remember that when you are told a fact about MS that 50% of MSers do worse than average and 50% do better
than average. You need to try and work out what half you fall into; neurologists
can never be 100% certain all they can tell you is whether or not you have a
poor or favourable prognostic profile. If they can’t make the call and your
prognosis is indeterminate you need to make sure you are given options and
choices and that your disease activity is actively monitored.”
 |
| Risk profiling can never be 100% accurate. |
“Please keep this 50:50 rule in mind when you try to interpret the information in this infographic. It is deliberately dark and negative to challenge the status quo. When I get the time I will make an infographic to focus on the positives.”
ECTRIMS 2013 Brain Volume Infographic
I wish this person was my neuro!
Me to!
Thanks Prof G – v useful. If only I saw my neuro more often to start challenging!
Prof G is the best! Period!
I wish that the information you have MS could be given by your GP, who then says 'you've got an appointment tomorrow with a neurologist who will explain all about it and your treatment options' Too often a patient is so shocked by the diagnosis, all that goes through their mind is 'I've got MS', and they don't really hear/take in what the neurologist is saying, and they're out of the door before they've even thought of the questions they should've asked (that is, even if they knew what the relevant questions are).
Wow, that approach would be really refreshing! Here in British Columbia, I have found that two neurologists I saw omitted valuable information that I told them so the info never got passed on to my GP and they also omitted what they said to me. One I was seeing for trigeminal neuralgia even told me that my numb arm was normal, if you can believe that! After a non-urgent MRI with a different neurologist (I fired the first one) showed many classic MS lesions (periventircular, collosal, cerebellar, brainstem) I knew I had MS but that neurologist told me I didn't because I had no problems with my reflexes or motor strength. With our long watilists and the ownership of MS diagnosis by neurologists, my official diagnosis was delayed by 2.5 years as I had to work with my GP to get referred to the MS clinic. All I needed to self-diagnose was the MRI images I had purchased along with the radiology report.
At what stage do you have a prognosis? Is there an accurate method for giving a prognosis at all?