Autonomy and necessity: 10 scenes

autonomynecessity

Scene 1 – Café

Am I happy with the care I received? Nothing turned out as I had foreseen, little was done to me that I actually wanted. Choices…don’t make me laugh. The only choice that would have made any difference would have been the choice not to have this illness. And who has that choice?

Scene 2 – Clinic (a year earlier)

Will it go away?

It’s a chronic condition…long term. It can get better, or go into remission, sometimes for a very long time, but there will always be the risk that it will come back. And sometimes it can get a lot worse…

In what way?

If the bowel becomes dangerously inflamed it can make you very ill, and the types of medication required to calm it down are correspondingly very strong.

But it doesn’t have to be removed?

Sometimes. Sometimes it does.

What?

Colectomy, removal of the bowel, is sometimes needed. But the way you have been up ‘til now, it doesn’t seem likely that you will be one of those patients. I’m confident we can use medication to keep things under control.

You have to. I cannot have a bag. I cannot.

Scene 3 – Emergency Department

How long have you had colitis?

Three months now. It was all going so well.

Who are you under?

Dr Jackson.

And is he thinking about changing your treatment?

He did, three weeks ago. What are you going to recommend now?

You need a few days in hospital, we need to get the inflammation under control again.

Scene 4 – Ward

Well Susan, the injections have worked! It’s time to get home.

It was close, wasn’t it?

Yes. Another two days and we would have had to recommend surgery.

Scene 5 – Clinic

I’m not right Dr Jackson. I’m never normal any more. I’m losing my hair on this drug…

It’s unusual to lose…

Well I am, OK! And I’ve taken weeks and weeks off work this year…

Susan, you know what we need to talk about don’t you. Let me refer to you to one of my surgical colleagues, Miss Baker, she’s very good, very understanding…

No. I don’t want it! Anything but that.

I have to discuss your case in one of our meetings anyway. We all meet up and look at the x-rays, the blood results. I can’t see you going on like this indefinitely. And there are options, believe me.

I don’t want you taking any decisions without me.

Don’t worry, we won’t.

Scene 6 – Meeting

There’s only one outcome here Paul. She needs to accept that she has to lose her bowel. I’ll have a chat with her. It’s not uncommon…I’d try to put it off for as long as possible if it was me too.

OK, I’ll ring her and tell her the offer is there. It’s up to her.

Better to do it now than in an emergency. I could do it in one stage, laparoscopically. No bag.

Scene 7 – Clinic

So you see Susan, that’s my advice. And that’s the advice of the whole team.

I don’t have a choice.

I wouldn’t look at it like that. Your choices have shifted, to a different level. You no longer have the choice not to have surgery, but the type of surgery you have, and when, is still within your power. I know it doesn’t sound like much, but that’s all we can do…guide you through the options and ensure that you are as fully informed as possible. But we can’t take the disease away.

Scene 8 -Ward (two weeks later)

So has it gone?

Has what gone Susan?

The one stage option? Avoiding the bag?

I’m afraid so. The bowel has deteriorated, we can’t make the pouch safely without giving you some time to improve, with a stoma. I’m sorry.

It’s exactly what I wanted to avoid. My husband… (Susan weeps)

This time next year Susan, it will be over. All healed. Not normal, I accept that, but you’ll feel so much better.

But why can’t Miss Baker do it? I know her, I trust her…

We can’t wait for her to come back from holiday. It’s not exactly an emergency now, but it’s getting that way. The operation has to be done before the weekend. You’ve been on these infusions for a week now, they begin to affect the way the body heals. And for the last two days there has been no sign of improvement in the inflammation. It’s time to remove that colon.

I don’t want an operation.

Susan, you have to consent to it. For it to go ahead you must sign the consent form. Is your husband coming in this afternoon?

Yes.

I’ll come back to the ward then.

To gang up on me you mean…

Scene 9 – Ward, next day

So these are the options Susan. I’m sure Miss Baker ran through some of them with you when you spoke to her in the clinic. I can’t predict what I’ll find when I start the operation, but if it’s not too damaged I can either do this (points to one of the pictures he has drawn), or this…

(Susan looks away) I don’t care anymore. Just do what you have to do. I feel so ill, I can’t decide. It’s up to you.

Scene 1o – Café (present day)

And that’s how it was. All those choices, those shared decisions, in the end I just said – get on with it! You know best! My disease didn’t respect choices, it accelerated, deteriorated, pushed me around, took away my autonomy. Me! Someone who had always, always insisted that she was in control! The irony of it.

And you’ve coped, with the stoma bag?

I cope with everything life throws at me. Of course. Next week I go in for the reversal. And in some ways I am less demanding now… I know they’ll look after me, they’ll do what they have to do. I can’t choose how Miss Baker does the operation, how she stitches…I can’t choose what kind of ward I go into, who I am next to, if the nurses and juniors are nice to me. The choices they talk about are, in my experience, not choices at all. They are theoretical. They are forks in the road that look equivalent from a distance, but when you get there, if you are travelling at speed, you have little or no say about which one you go down. To resist the momentum, in whichever direction it seems to be taking you – and by momentum I mean the opinion of your doctor, of the team – is foolish. It’s unsafe. Better to give in to it, believe what they say, trust them. But that’s just my experience. Don’t take my word for it.

(the case is fictional, the patient’s thoughts are imagined by the author)

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