Medical ethics: what happens when the specialist becomes the patient?

What’s your speciality?

I am a specialist in medical ethics. I work on wards and in clinics as well as doing research and teaching.

When there’s a moral question about what a clinician might do, or about what a patient wants, people come to me.

High-profile cases include the Charlie Gard case, where the parents disagreed with the clinical team about the care for their very sick child. I wasn’t involved in that, but it’s an example of what people in my field do.

What’s the Radio 4 programme Patient Undone about?

In autumn 2017 I was diagnosed with breast cancer, and I started to think very differently about what I’d been doing for 25 years. I thought I’d made up my mind about things like choice and consent, and autonomy – the ability to make decisions for yourself.

But I was struck by how frightening I found it to give consent, and I was surprised that things that I’d always really argued for, like copying patients in to letters, could actually be very difficult to bear and might not be as much of an unmitigated good as I thought it was.

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Can you tell us more about your experiences of choice, consent and autonomy as a patient?

My experience was that I both wanted that power and struggled with it, all at the same time. It’s that contradiction that’s at the heart of Patient Undone. There was still a very rational part of me that absolutely believed my body, my choice, my life. I needed information to make decisions.

But there was another bit of me that was frightened, overwhelmed, and emotional. I really didn’t want to have anything to do with prognosis, risk-benefit analysis, or statistics about dying. I just wanted to stick my hands over my ears.

I thought consent and autonomy inherently empowers people, but what I’ve learned is that it might sometimes make things harder, and that really surprised me.

I thought, ‘Well, what does this mean for anybody trying to get consent from a patient? How do we manage to accommodate these different versions of ourselves?’

Did that change over the course of your treatment?

It settled and changed over time, and there was a rhythm and I got used to things. Again, I hadn’t ever really thought deliberately about time and its significance: how you might change over time, and what clinicians can do to recognise that you might feel differently after a month, six months or a year than you do at the beginning.

How can you make ethical guidelines that fit all the patients at all times?

I came out of this thinking, ‘Oh my god, have I spent my career doing a thing that isn’t possible?’ But I concluded two things: I think it’s difficult, but not impossible, and the way to do it is to have a really explicit acknowledgement and discussion of the contradiction, the complexity and the changing nature of patients’ feelings.

At the moment we tend to say these are the four elements of valid consent: given by a patient with capacity to make a decision; who is sufficiently informed; gives consent voluntarily; and can withdraw consent at any stage. But we don’t talk about emotion and rationality colliding.

All of that is implicit rather than explicit, and I think the challenge for me now in my work is to think explicitly about that complexity, even if people aren’t talking about it. Especially if they’re not talking about it.

Listen to the Science Focus Podcast:

Are there ethical guidelines governing doctor-patient communication?

There are oodles and oodles of them. You can’t move for guidelines and courses. There are things you can learn, about body language and listening and expressing empathy, but there also has to be a real commitment by both people to make the consultation as effective and supportive as it possibly can be, and that’s an attitude that’s more difficult to learn or teach.

My surgeon was the person who told me I had cancer. In the programme he talked about the need to get it right, because you’ve only got one chance at this.

As a patient you’re hyper-sensitive, and I will remember every nuance and every piece of non-verbal body language, every word that was spoken, and he recognises that. It’s not that he’s following good communications guidelines, it’s that he goes further and recognises the significance of the conversation, and he cares enough to get it right.

Have your professional views changed because of your experience as a patient?

I still think that autonomy is still the cornerstone of Western medical ethics, but I also feel now that autonomy is complex, that you have to attend to the emotional and the rational and the contradictions of both.

I think about honesty differently. I still believe in honesty, of course, but I don’t think necessarily that being honest means you say everything all at once, and I don’t think it necessarily means that you have to put the focus on risk or potential harms.

Now, I could stop teaching everything I teach and just rock up once and say, ‘be kind, no exceptions’, and that would cover it.

Listen toPatient Undone on BBC Radio 4

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