A couple of days go I reacted to a Twitter poll which asks the following question: Should patients take more responsibility for their outcomes? I refuse to engage with this kind of question. Here is why.
I reacted to the question primarily because of the word ‘outcome’. I actually don’t think about outcomes. And if I am to be responsible for anything, I would like to share the values/assumptions behind it. And no matter how much I think about it, when I go to see a doctor, I still don’t think about outcomes.
First, it’s because I refuse to condense a complicated experience of illness, of being ill, making sense of it and, hopefully, getting better, in terms of ‘an outcome’. Let me tell you about it on the example of my own illness (still on-going, still….).
I think, as I have already written before, this illness has allowed me to understand quite a lot about long-term illness, about pain, about the process of treatment and diagnosis. It also taught me a little about hope and hopelessness. It’s a host of experiences which have led and still do lead to new understanding(s). And yet, none of it would count as ‘an outcome’, also I have really no idea how you would measure all that. And yet, apparently, this illness has not produced ‘an outcome’, though I am not entirely certain, as outcomes have not been discussed with me.
The second point is about this idea that ‘the outcome’ can be easily identified, standardised and measured. Moreover, ‘outcome’ suggests that treatment is all about the result, the end-product, even in chronic illness in which it might about better quality of life (also clearly identified and measured – which I find quite absurd, but that’s for another blog). For me ‘an outcome’ is a story and it’s a story as much about the result (after all, I do want to recover, be better, healthy etc.), but it is also about the process of getting there, as well as the relationships you have on the way. Focusing on ‘the outcomes’, I think, you lose sight of all these things, which in my view are perhaps not as important as the result, still they are important. For I certainly would have given up the illness, I still am pretty happy with the reflection it offered. It’s a dilemma and I am not going to attempt to resolve it.
And this is why I refuse to think abut outcomes. And as much as I appreciate that outcome researchers want to focus on me, I reject the idea. In a recent article in NEJM, I read
We predict that a time will soon come when it will be hard to believe that measurement of outcomes that mattered to patients was rare in 2016 — and organizations that measured them each did it in their own way.
Well, good for you, but I really don’t care. I simply reject your thinking. So, as much as I understand that you, medics, want to count and calculate everything, including the quality of my life (sorry, it is really funny), please leave me alone. Don’t impose your world on me, as we apparently live in different universes. I really am not interested in how you measure all the outcomes you want. I want to hear what people have to say. Much like on the great Patient Opinion website, where people are asked to ‘tell a story’
Although this statement would need considerable nuancing, I still think these stories offer better insight into what happened to patients than any measure you can take.
But as I was thinking about the poll question, I couldn’t help also thinking about my responsibility for them. I am fairly sure that ethicists have already unpicked the topic many times, but I just want to write about it as a patient. In the article which is quoted in the tweet we read:
How is it my fault if my patient who has heart failure decides not to take his meds and eats pizza and hamburgers every day, or if my patient with five stents doesn’t want to take statins and Plavix and continues to smoke?
It turns out (I kind of knew that) the whole thing is about taking care of myself. Smoking, drinking, eating rubbish are bad for you and it’s good to remember that and not smoke etc.. Just like not stopping the course antibiotics just because you started feeling better. Though, I don’t think about it in terms of outcomes, I take the point. I must take (some) responsibility for my lifestyle choices, and I say it as a person with a very sweet tooth! I also understand how hard it is not to reach for the next piece of chocolate (for those struggling – I have discovered a wonderful solution – I stopped buying it!). However, I also think that it is not beyond human understanding to imagine how you, the doctor, might also be (partly) responsible, but let’s leave it.
You see, I started thinking about psychiatry and things became much more blurred. Let me pose some problems:
Is a person staying in an abusive relationship responsible for their depression? Should you be held responsible for ‘your outcomes’, if you don’t divorce? Are you responsible for your depression, if you lose a job and can’t find a new one? What about a battered child’s anxiety? How would they be responsible for their outcomes?
I can continue with such questions, but, I hope, you get the picture. Let me just say that I fear the answers of the 73 respondents to the Twitter poll. Is a person responsible for their nervous breakdown (regardless of whether a shrink will allow you to have it, given the current diagnostic criteria) and getting out of it? I am really scared that someone might actually say: yes, they are. You should have dumped your partner. Or you should have had a better profession.
I once interviewed a man whose child had been killed in an accident. I met him after his second suicide attempt. He told me how the death of his daughter had simply crushed him. Where would you put his responsibility for his ‘outcomes’?
I am pretty certain I am not saying anything earth-shattering – I have learned to accept that the ethical problems I think of, have already been considered by assistant ethicists. For me, I’d just say that ‘responsibility for my outcomes’ is a minefield. Focusing on eating too many sweets is relatively easy and the above article is full of such easy issues. Life is way more complex.
But the quotes in the article show another aspect of the problem. As the doctors tell us how they wash their hands off some or all responsibility for my outcomes, I think things are more complicated. And the more you absolve yourself of me, the more you undermine a relationship between us. I also hope that our relationship can be free of you blaming me and vice versa. As, for the most part, I doubt very much it can lead us anywhere positive.
And perhaps it’s more useful to sit down and talk not only about the medication I am supposed to take and the responsibility for taking it. How about also trying to understand who I am?