EONS 2012

Involving patients in care decisions

Dr Vikki Entwistle – University of Dundee, UK


Getting patients involved in cancer care is a big issue, it’s one that’s very important judging by the conference here. But exactly how do you get patients involved and do they always want to be involved?

I think that’s a really good point. It is a big issue, there are lots of senses in which patients can be involved in their care and indeed there’s a very trivial sense in which there can be no care unless a patient is involved. But what policy makers and increasingly professional groups are particularly interested in is more active forms of involvement, making sure that rather than just doing things to patients, as if they were lumps of meat, that clinicians need to be working with patients as persons.

It sounds a noble idea but what do you actually mean?

There are issues, for example, of encouraging people or enabling people to participate in decisions that are being made about their care. For example, if there are several reasonable treatment options, who decides? And perhaps some consideration, more consideration than has been given in the past, should be given to what the patient can contribute to the selection process, to deciding between treatments.

Many patients would think that the clinician is in a better position to judge, I suppose that may or may not be true.

That’s right and often clinicians have the know-how, have the knowledge, about what the treatment options might be, what their different outcomes might be and so on and so forth and we often think, yes, but sometimes the different options have different risks and benefits, they have different effect profiles. The best treatment for one patient will not necessarily be the same as the best treatment for another patient so we need to attend to patients’ preferences. One way that’s suggested for doing that is to give the choice to the patient but, as you say, just informing patients about “Here are three options, now which do you prefer?” often puts far more responsibility on to the patient than the patient is equipped to handle or wants to handle.

We’re moving into an era of guideline based therapies, targeted therapies, therapies which depend upon molecular features. It’s beginning to look as if the patient doesn’t really have much choice.

I think there is a danger of thinking it looks as though the patient doesn’t have a choice or shouldn’t have a choice. I think I still feel very strongly that there still are different outcome profiles and it’s important that the individual patients’ personal characteristics, life circumstances and, yes, preferences should be taken into account. We need to look more creatively at ways of ensuring that clinicians can support patients to contribute to that decision without necessarily having responsibility for making the decision themselves. So if a doctor is to have a conversation with me that asks me what matters to me, I can communicate the kind of things that would be issues for me in treatment without having to process what matters and align it to a particular treatment outcome and option selection.

Let me ask you about something else that’s being talked about quite a lot here at the conference in Geneva – autonomy. What exactly does it mean in this context and what do we understand by autonomy?

I think for me, personal autonomy is basically a matter of being able to be my own person, to shape my own life to some extent rather than, so the contrast is with, being under the oppressive control of other people. I think what has sometimes happened in thinking about healthcare ethics is that the issue of autonomy gets reduced to one of autonomous choice and then we come back to the problem if we think of autonomy as autonomous choice, we think what clinicians need to do to respect autonomy is to give people information and leave them alone to make the decision. That exactly is where I think the problem has been, I think we need to look at a richer understanding of what personal autonomy means and how our interactions with clinicians can both support and undermine our capabilities to exercise autonomy. It’s those kinds of issues that we need to be encouraging clinicians to think about rather than just a narrow focus on choice.

I suppose there’s a lot of appeal to the patient of feeling in the driving seat, feeling as if the team is his team or her team and that helps him or her along.

Yes, I think that can be a helpful analogy but, again, the patient might not always be feeling as strong and as confident and as knowledgeable to be able to dictate where we’re going and I know how to operate the engine or the vehicle, what have you. So, again, I think it’s very important to keep patients included, to keep an eye very, very strongly on what matters to them, what matters to the patient, but the ways of finding that out and incorporating that into the team decision making needs to be done in such a way that the different expertises of the different teams are all harnessed and that we can use all of them but for the interests of the patient and attending always to what matters to the patient.

I’d like to distil out of this some of the simple dos and don’ts, what are they?

Listen to patients, really listen to patients, and perhaps make sure that we do explicitly ask questions – what matters to you, and take those issues seriously. That we give patients safe space to ask questions to raise concerns and to feel that they are both supported and enabled in our communication.

And how much of an improvement do you think that could make in cancer care?

I think it could vastly improve patients’ experiences of care, of being cared about as well as cared for and their experiences of being treated as a person as they go through healthcare, which is something that not all patients do experience consistently enough at the moment. I think by being involved and enabled to understand, it can ensure that people are better able to contribute to their own care as it proceeds, to identify if there are concerns that they need to get addressed. So I think there are lots of ways in which it could be radically important for healthcare outcomes.

Thank you very much indeed.

Thank you very much.