The dignity of dying at home I regret surrendering my mother to hospital

But, Spiegelhalter went on, we don’t know why this change is happening as it “hasn’t been studied sufficiently”. We keep no records of why someone died at home. It might be by choice — most people will, like my parents, state a preference for dying at home when asked — but relatively few individuals set out their wishes in a formal Advanced Decision.  Even when they do — my parents had three each, including one in a pot in the fridge — there is no national protocol for dealing with them.

Looking at causes of death does not help much, either. Most people take Covid to hospital. A little of the increase, we are beginning to learn, comes from the ambulance not arriving on time, but not much. The great majority of deaths at home derive from the same sort of slow, chronic conditions that end most lives in hospitals: heart disease, cancer, old age. The leading causes are dementia and Alzheimer’s disease, with diabetes being the most common contributing factor. There is no special reason, there, for a sudden and lasting change in behaviour.

Perhaps we should be looking elsewhere, not with the patient but with the carer. Anyone dying of dementia at home needs an especially dedicated one. And diabetes — imagine, as my mother would have said, the washing. (Domestic work was always on my mother’s agenda. I never did it to her satisfaction.) Think, my mother would say, and my mother always had a point, of the sheets. Think of the woman washing the sheets.

The sheets matter because it may well be the carer rather than the patient who decides the place of death. They are the ones who call the final ambulance, whatever their loved one or their Advanced Decision may say. They may do it because they hope to give their loved one more time, or a pain-free death, but they may also do it to relieve the unspeakable strain on themselves, and to love, not just care, for someone in their last days. It’s not just the sheets. Modern, post-Shipman, deaths are more prolonged than my grandmother’s. Without that morphine shot, longer and more demanding nursing might have been required.

If a carer can’t cope with that though, there is now often little alternative to hospital. “It’s always been the National Hospital Service, really,” my mother would say, meaning that emergency and high-tech medicine had always taken precedence over social care from the inception of the NHS. Almost in step with her aging, she had seen first the doctor with the black bag disappear, then the remnants of the cottage hospitals and district nursing system. In her ever more frequent stays in hospital, she had seen the bed-blocking results; she had been, to her rage and sorrow, a bed-blocker herself. Here life was saved in hospital by high-tech medicine, but she also experienced loneliness and loss of agency which made her never want to go back. That was what the Advanced Decisions chilling in the fridge in 2020 said: no resuscitation, no interventions, and above all, please, no hospital.

But how were we to achieve this? More particularly, how was I, isolated with my parents by lockdown, to achieve it? In 2020 there seemed to be nothing at all between an isolated, high-tech death surrounded by people in space suits, and one at home with — what? Only horrified, squeamish, cack-handed me? Surely not. I tried not to think about it, but my parents did, most days. I promised, often, to try my best.

But when my mother’s health went into crisis in January, at the very height of the 2021 Covid spike, the GP called an ambulance and I put her in it. My mother consented on the grounds she was only going to have her heart checked in the day ward. I consented because I was too scared not to. It wasn’t just that I was far out of my depth with the nursing — and the sheets. I wanted a hospital not for her but for me: a place where the responsibility, moral and practical, would be taken from me, where people more expert than I would know the right thing to do.

My mother never came home. Separated from us, her documents, and her own mind as she floated off in an infection, she was subjected to everything she had stipulated against — operation, ventilation, feeding tubes — before contracting Covid and dying alone. We saw her once more, on a visit during which my father also contracted Covid. It was the very opposite of what she had wanted: a death in your own bed with your daughter downstairs talking to the doctor, your daughter making the tea, your daughter managing, for once, the sheets.

Hundreds of thousands of people died in similar fashion that year: in hospital, alone, relatives at best on an i-pad; an unknown, gloved hand to hold. Their families suffered, according to a thoughtful study by the Marie Curie Trust in 2021, “complicated grief”: trauma, degradation, loss of agency and connection, guilt. Complicated grief is a good phrase. I don’t have one of my own. At the time, I experienced extreme helplessness, while my father talked of my mother’s departure as the “kidnapping”.

But perhaps complicated grief could also be called iron in the soul: when my father, a few days after my mother’s death, collapsed with what I now know was myocarditis, I was able to refuse hospital care. I had his exquisitely clear Advanced Decision in my hand; I’d talked it through with him many times, but it may have been my mother’s experience which actually stopped me. I still wanted to call the merciful hospital, but my complicated grief told me it no longer existed. My complicated grief steeled me instead to do the work, practical and emotional, of letting someone die at home.

There must be hundreds of thousands of us in the UK with complicated grief, an epidemic of it. I wonder, even, if there are enough of us to be causing the change of national habit that Sir David Spiegelhalter spoke about; if experience of post-lockdown hospital is making 90 extra people a day unable to surrender their relatives to the hospital. I think it’s possible. I’d join the Marie Curie Trust though, in thinking we should examine the increase in deaths at home rather than hospital. It’s a choice we all come to, and we shouldn’t be making it in despair.

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