Clinic Speak: reluctance to share bad news

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.“

"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."

Most of us, including neurologists, see the glass as being half-full.

"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."

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."

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."

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."

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

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