Learning to Say His Wife's Name

A man who would not engage

He came to us about a fortnight after a significant stroke. Dense weakness on one side, a severe expressive aphasia — he understood a great deal and could produce very little — and a swallow that needed modifying.

For the first five weeks he was, in the language of our handovers, poorly engaged with rehabilitation.

He would do what was asked in physiotherapy, more or less, without any appearance of caring. In speech and language therapy he was worse than passive; he was actively finished. He would turn his head away. Twice he pushed the materials off the table.

We did all the things you do. We reviewed his mood, reasonably enough, and started treatment for what looked like a post-stroke depression. We adjusted his timetable so the hard sessions were in the morning. We had a family meeting and explained the programme again. We wrote, more than once, that his rehabilitation potential might be limited by engagement.

And we set goals, because that is what we do, and our goals were good ones: independent sitting balance, then transfers with one assist, progression to a less modified diet, functional communication using a chart.

Every one of those goals was clinically correct. Not one of them was his.

How we found out

A speech and language therapist — a newly qualified one, which I think matters — got it, and she got it by abandoning the session plan.

She had been trying to work through a functional vocabulary set. Bathroom, drink, pain, yes, no. The essential, sensible, dignity-preserving words we always start with. He was refusing, in the flat way he refused everything.

So she put it down and got out a photograph from his bedside, of him and his wife, and she asked him to tell her about it.

He could not, obviously. That was the whole problem. But he tried, for the first time in five weeks he genuinely tried, and what he was trying to produce — over and over, with enormous effort and no success — was two syllables.

Her name. He had been married thirty-eight years and he could not say her name, and she came in every single afternoon and sat with him for three hours, and he could not say her name.

We had spent five weeks trying to get him to say "bathroom" to a stranger. He was not refusing rehabilitation. He was refusing our goals, which had nothing in them he wanted.

What changed

We put her name at the centre of the programme. Not instead of the functional vocabulary — alongside it, and explicitly in service of it. The rationale we gave him, and I think the rationale was true, was: the work that gets you to her name is the same work that gets you to everything else.

He became, within about a week, the most motivated patient on the unit.

The physiotherapy changed too, because we asked the same question about it and got a similarly specific answer. He did not want to transfer with one assist. He wanted to walk into his own kitchen, where he had cooked every meal for both of them for decades, and stand at the counter. So we photographed his kitchen and worked backwards from standing at that counter, and the intermediate goals were all the same intermediate goals we would have set anyway, and he did them.

He said her name about three weeks later. I was not there. I am told the whole bay heard about it.

What I think we got wrong, structurally

I have been doing rehabilitation medicine for a long time and I do not think that team was careless. I think we were doing exactly what we are trained and audited to do.

Our goal-setting paperwork is built around functional independence, because functional independence is measurable, generalisable, and correlates with discharge destination. All true. But it is our taxonomy, and we hand it to patients as a completed document to consent to rather than a blank one to fill in.

And when a patient does not care about our goals, our vocabulary for that is "poorly engaged" — which locates the problem in him. In five weeks of notes, across a large multidisciplinary team, nobody wrote "we may have the wrong goals". We wrote that his rehabilitation potential might be limited. We were describing our own failure of curiosity as a feature of his brain.

There is a particular trap with aphasia that I want to name. A man who cannot speak cannot tell you your goals are wrong. All he can do is refuse, and refusal in a patient with a communication impairment gets read as a symptom rather than as a message. The people least able to correct our assumptions are the people about whom we make the most.

What we do now

The first question in our goal-setting meeting is now: what do you want to be able to do that you cannot do today? Asked of the patient, with whatever communication support it takes, and with the family in the room to help translate rather than to answer on their behalf.

The answers are almost never our goals. They are: drive again. Hold my granddaughter without being frightened. Go to the mosque. Make a cup of tea for someone else rather than be brought one. Stand at that counter.

Our clinical goals turn out to be, nearly always, the same intermediate steps. Sitting balance, transfers, grip, swallow. It genuinely does not matter to us what sits at the top of the ladder. It matters enormously to him.

He went home. He walks with a stick and his speech is effortful and he cooks, apparently, though I am told more slowly than he would like.

Published with the patient's and his wife's written consent. Names, ages, location, occupation, the specifics of the stroke and the timeline have all been changed or removed. The photograph described was not retained by us.