By the time of his admission he’d been on the steroids for six months, to counter swelling caused by brain metastases. His wife had stopped nursing at the GP practice in order to care for him.

He had been deteriorating in recent weeks and could no longer be reasoned with.

We couldn’t talk to him, he just stared at us blankly when we asked him questions, his wife had to answer for him.

She described him sitting on the bed eating mandarins spitting the seeds out onto the carpet.
She said that he would be horrified if he knew what he had been doing, as he was the tidiest person she knew and he had always been house proud.

The worst thing that had happened was after he had urinated on the bedroom floor having mistaken it for the toilet. He then slipped on his own urine and fell to the floor, luckily he did not hurt himself badly.

I asked if he had any seizures. She said that at times she had seen his arm going rigid, and then he seemed to be even less responsive. She had thought of seizures, but there was no jerking. She had mentioned it to the Oncologists but they had not looked into it any further.

I was intrigued by this. Could it be non-convulsive status epilepticus – repeated ongoing seizures without convulsions leading to decreased consciousness? His wife agreed to a trial of anti-seizure medication. If the medication didn’t make any difference we would stop it.

The following morning, she told us that he was back. The anti-seizure medication had worked confirming the diagnosis.

How long have I been out? What’s been going on?

What’s the last thing you remember?

The Oncologist told me that the cancer was progressing, that there were no other treatment options available.

Your wife told us that had happened almost two months ago.

What’s been going on since then?

Your steroid dose was increased further, and you’ve been kept on the same high dose ever since.

Why?

Excuse me?

Why are we doing that?

To decrease your brain swelling, otherwise you’d be worse.

Why are we doing that? The Oncologist told me that there was nothing that they could do, that I was getting worse. Why am I still on the steroids?

You don’t want to be on them?

No, I don’t. My wife told me about what’s been happening in the past two months, I don’t want to go on like this, it’s no life, for me or for her. Please stop.

We weaned his steroids down over the next days, while increasing his symptom control medications up.

We kept him comfortable as he deteriorated and he died ten days later.

Lesson learnt:
People do not always have a chance to decide what they want to happen. Treatments may be started when they are too unwell to take part in decision-making. There is a danger of becoming stuck in a bad moment and existing, though not really living, in a poor quality of life situation which affects their caregivers too. Trapped in a prison they can’t escape. There may be a point where treatments are no longer prolonging life, but may in fact be prolonging dying, and postponing death. If our really unwell patients could speak for themselves what would they say?