Souls in cages

“Some are like souls in cages. Like, you can see they're there, but they look like they don't want to be.” He tries to elaborate, can't take it much further, but—for a 17 year old on work experience in a nursing home and wanting to be a doctor—perhaps he's done quite well already.

Where do they come from, these souls in cages? Not sure, but I see too many of them: too often and too easily we fail the souls and build the cages. In the rush and glamour of acute care, in the busy system that is designed to cure and doesn't like to lose, there are priorities that may take insufficient account of the worse-than-death outcome—the helpless, stabilised, damaged survival—that so many of us dread. And too often families are summoned for the grimly absurdist routine: “We've saved your father's life… But now he's blocking a bed.”

The sorrows can endure for months or years. The death averted is a bereavement suspended, the caged soul lingers, and people remain upset. Is it about regrets, or a strange injustice, or a wider and far more worrying dysfunction? Who knows, but it seems to happen quite a lot.

Yesterday my mother was well. This morning her neighbour rang me to say she was not: “She kent me, but she couldna talk, and she couldna get up.” I speak some Scots and know some neurology. It's very bad. Three hours later, in the emergency department of a decent district general hospital, I see her. Everyone has been kind and efficient, but she is now, in her grandson's words, a soul in a cage.

She was 90 in October and greatly enjoyed her birthday bash. Yesterday she logged yet another great grandchild into her fearsomely well organised birthday book, and had ordered but not yet collected her first walking stick. She had ticked all her boxes—two careers, bringing up her children, burying her husband—and since then has greatly enjoyed her bowling, her voluntary work, and a lively extended family. She cannot move her right side and cannot speak.

She is dying but she is lucky: no nasogastric tube or PEG (percutaneous endoscopic gastrostomy) feeding for her. A few months ago she tidied up her life, perhaps anticipating eternity, and made her wishes clear. I pass them on and a wonderful district general hospital team respects them, cares lovingly for her, and will not cage her soul.