Medical Truth Telling in an Age of Fake News

 

“What’s your understanding of what is happening with your health right now?” I asked my patient who had come into A&E feeling quite breathless. I knew something of the context here: the man had advanced cancer and was probably experiencing a complication caused by further spread of the disease. “Oh, you know, I’m just getting on with it as best I can” he replied, adding that “the specialist is reviewing things in a few months’ time I think, and said they will repeat my CT scan then”. This caused me some alarm. You see, my understanding of the situation, having read the patient’s medical file, was that he was in the last weeks of his life. His most recent CT scan, done after a rapid deterioration in his condition, showed significant disease progression involving spread to several organs including his heart. So why had the specialist doctor offered to review the patient in 6 months’ time when life expectancy here could be measured in weeks? And why did the patient not know this to be the case? The specialist is a clever, talented professional and the patient is of sound mind. However, the truth was clearly missing. Unfortunately, I’ve noticed situations like this one arising all too frequently.

It sometimes feels like “The Truth” is becoming a precious commodity these days. Scepticism is creeping into news reporting, with some media claiming to “fact check” their broadcast, only to subjectively highlight preferred ‘facts’ while obscuring less convenient ones. Then of course we have claims of “fake news” which just muddy the water even further. Truth is the casualty here. Sharing the truth can be hard, while fiction is relatively easy. Distortion can slip off the tongue, but still appear clever or nuanced. Such clouding of the truth or “putting a spin” on it is in the realm of politicians - but surely not that of doctors?

In healthcare, the truth is of the upmost importance. Honesty and transparency are the cornerstones of medical ethics. In a trusting doctor-patient relationship, there is an assumption at the outset that
the truth is being told. This is especially important when the patient is in a position of vulnerability, such as when they are seriously ill.

Why would a doctor put this precious trust at risk by withholding or obscuring the truth? If a patient suspects that their doctor is doing this, it will inevitably lead to uncertainty at best and a complete breakdown in the relationship at worst. Mistrust will also filter into the broader healthcare system. I don’t believe a doctor would do this with malicious intent. Rather it’s perhaps coming from a place of their own uncertainty, discomfort, or a desire not to upset their patient. That said, where there is an intention to somehow spare the patient from the truthful reality of a given situation, terms like “therapeutic privilege” or “benevolent deception” have been used in the past. I find both terms loathsome. Doctors really need to do better.

In the 21^st century, doctors are being encouraged to move away from notions of medical paternalism or “doctor knows best”. In Scotland, the Chief Medical Officer has espoused “Realistic Medicine” which includes a move towards involving the patient in much greater detail with choices about their own health and planned treatments. Truthful conversations are key to this happening. Yes, some patients will still defer to their doctor to decide, but research has shown that most people want to be involved. They want to know what’s happening with their health. They can make better choices, and their families can plan more appropriately for the future.

I recently heard a very senior doctor say that she would not disclose the truth about a life limiting

condition to her patient out of “fear of removing hope”. This for me is deeply misguided. Doctors are neither the guardians of nor the distributors of hope. We shouldn’t be blunt or harsh with the truth, but we should at least gently offer to outline it fully. Again, research here shows that while a minority of people “just don’t want to know”, and that’s okay, most people do want to know. The truth can reshape hope, rather than remove it. Rather than hoping for an unrealistic cure, hope is directed towards maximising quality time. There can be a liberation and empowerment with the truth. If time is short there can be a focus on resolving unfinished business, tying up loose ends or sorting legacies. Time to say, “I love you”, “I forgive you” or “please forgive me”. Here we find real hope, comfort and purpose.

When confronted with the reality of a life limiting diagnosis, most patients want to know their prognosis in terms of “How long have I got?”. This is challenging because it can be difficult to know the timeframe with any useful degree of accuracy. Rather than thinking of prognosis as just a guess at a number of months, I encourage clinicians to talk about prognosis more as “What happens next”. This can be described with three things: the worst case, the best case, and the most likely scenarios. I have found this approach to be helpful and is appreciated by patients and their families.

So, back to my patient at the start of this article. I asked him if his last CT scan results had been explained to him. His recollection was that they hadn’t, or at least he had no clear understanding of what he’d been told. “Would you like me to describe what’s happening, even if it was bad news or could be upsetting?” I asked him. He assured me that he definitely did want to know, so I sensitively outlined the truth and summarised what I thought was likely to happen next. He was a little shocked at first, but quickly stated that “I kind of knew that already, I can see what’s happening with my body”. The initial discomfort was replaced by a sense of relief as he went on to describe how he’d been “trying not to upset” his wife and three adult offspring but felt that he could “get it all out in the open now”. The truth here provided something that had eluded my patient for some time - clarity.

Mahatma Gandhi once said, “Silence becomes cowardice when occasion demands speaking out the whole truth and acting accordingly.” In this age of fake news, spin and ambiguity, I would encourage fellow clinicians to get more comfortable with offering the whole truth – and encourage patients to ask for it.