Telling me you don’t know is ok, 2020, Wong

[Andy]

Mark Wong describes how the openness and honesty of health professionals about their uncertainty provided him with reassurance during a difficult diagnosis

When I arrived at the emergency department my movements were uncoordinated, I had difficulty balancing, and my speech was slurred. Over the past week typing had become increasingly difficult and I was suddenly unable to walk without stumbling. Initially I had attributed these symptoms to fatigue, but once my speech began to slur I started to fear the worst. After many tests and examinations, health professionals couldn’t find a physical cause for my symptoms. I was given a diagnosis of functional neurological disorder and told that it was probably caused by stress and would resolve with enough rest.

The diagnosis filled me with confusion …

Paywall, https://www.bmj.com/content/368/bmj.l6803
Sci hub, https://sci-hub.se/10.1136/bmj.l6803

 

[Hutan]

A great one page article.

I was given a diagnosis of functional neurological disorder and told that it was probably caused by stress and would resolve with enough rest.

 

[Kitty]

The medical profession SO MUCH needs to start offering career advancement to doctors prepared to say 'I don't know', instead of those who don't know but make something up without any evidence!

 

[Lisa108]

From the article:

The doctors eventually suspected I had a viral infection and this was subsequently treated successfully.

 

[rvallee]

From the article:

FND/MUS/BPS guidelines guarantee this would not have been found and resolved had they been followed as advised. This ideology isn't just anti-science, it is anti-medicine, even anti-patient.

 

[Subtropical Island]

Good article.

Glad it’s going to be used for educating doctors.

***

The article has a shortlist of lessons to take away from this experience.

Although the first part is fine:

What you need to know:
• Sharing uncertainty around a diagnosis or treatment can provide patients with reassurance
• Simply acknowledging patients’ symptoms can help them to feel empowered and supported
• Uncertainty is best shared by openly acknowledging, recognising, and discussing it with patients

The second part misses the point:

Education in practice:

• How could you best communicate any uncertainty around a diagnosis?
• For this patient, acknowledgment of his symptoms helped him to feel supported. How else could you support patients through uncertainty about their diagnosis or outcomes?
• What reassurances could you give patients if their diagnosis or outcomes are uncertain?

We don’t need platitudes and reassurance. We need collaboration.

The following two quotes are the point I think was missed in the education in practise section:

We discussed the thinking processes behind possible diagnoses. They also included me in the discussions about potential treatment options. This open communication helped me deal with the lack of control and feelings of helplessness I had experienced since the symptoms started.

Looking back, managing the uncertainty was more challenging than the severity of the symptoms. What I needed wasn’t necessarily a definitive answer—the recognition of my symptoms and the impact these were having on me was reassuring enough.

 

[Kitty]

We don’t need platitudes and reassurance. We need collaboration.

...and that collaboration includes recording properly how disabling the symptoms are. Patients' pain and suffering is quite bad enough, without being multiplied by not having enough medical evidence to get financial support when they find themselves completely unable to work.

 

[Hutan]

We don’t need platitudes and reassurance. We need collaboration.

Actually, when I read this:

What reassurances could you give patients if their diagnosis or outcomes are uncertain?

I interpreted that as leading the reader to think

• assure the patient that you (the doctor) understand the impact of their symptoms and that you will stick with the patient, doing what is possible to understand what is causing the problem
• assure the patient that you will keep them informed and collaborate with them, and value their input
• assure the patient that you will do what is possible to help them live as well as possible (i.e. offer pain relief; facilitate applications for social welfare benefits; inform family and employer if needed)

rather than thinking that the answer that was expected was 'give the patient platitudes'.

But you are right SI, many doctors respond to uncertainty with platitudes, arrogant obfuscation and dismissal of the patient.

 

[spinoza577]

The medical profession SO MUCH needs to start offering career advancement to doctors prepared to say 'I don't know', instead of those who don't know but make something up without any evidence!

It´s not human.

When I got to meet this abuse I thought, they do so b/c otherwise everybody could come and tell they are ill. But in fact doctors are adroit enough in finding out if it is true what you are sa... if you really have issues.

 

[Subtropical Island]

Actually, when I read this:

I interpreted that as leading the reader to think

• assure the patient that you (the doctor) understand the impact of their symptoms and that you will stick with the patient, doing what is possible to understand what is causing the problem
• assure the patient that you will keep them informed and collaborate with them, and value their input
• assure the patient that you will do what is possible to help them live as well as possible (i.e. offer pain relief; facilitate applications for social welfare benefits; inform family and employer if needed)

rather than thinking that the answer that was expected was 'give the patient platitudes'.

But you are right SI, many doctors respond to uncertainty with platitudes, arrogant obfuscation and dismissal of the patient.

I would hope you’re right.

What I was getting at is that if I were able to provide input to the people who publish these things I’d hope to amend one of those three education points to better reflect the article (more than assurances about uncertainty, it needs to emphasise collaborating with them, involving them in the process of considering possible diagnoses and then later treatment options (or even just discussing the lack of them)) etc.

[ETA: these sorts of sheets are often written in a collaborative way. The original article was written by the author but sometimes the bullet points are written by someone else to complete the format. I don’t want to introduce new points, just to emphasise the very good points that the author himself made. And clarify those last bullet points to reflect what he said about his own experience of what works.]

Because the sheet is about educating doctors, it needs to make sure the take home message is clear
and reminds the doctor what they may not remember to do:
to include the patient in the process of figuring out what’s going on.

Because when nothing is discussed, but lots of sympathy and assurances are given, I can say from my own experience, it’s not very helpful. (Seems nice at the time but leads to more uncertainty).

It’s less important to tell me that you’re going to keep me informed than that you do.

It’s too easy for doctors to assume we all understand the process behind their decisions or that we don’t need to. But this article rightly points out that it’s worth taking the few minutes extra to make it clear, and to discuss, not just to inform.

To be clear, I’m not criticising the piece, I’m critiquing the detail in its final bullet points. Something I would do for a friend or collegue. Because it is good and deserves to be excellent.