My 90-year-old mother is demented in the most benign way: she says sweet words to all the people she meets and lives in a world of trees, sunlight, and cups of black coffee where there is no climate emergency, global injustice, Brexit, or, indeed, covid-19. I think that she is fading, and the worry of my brothers and me is not that she’ll die of covid-19, but that she’ll die on a trolley in the emergency department of the local hospital.
As a recent powerful piece in BMJ Opinion has shown yet again, the “standard protocol” makes death in acute hospital highly likely to happen despite the best intentions of health and social care staff.
Hazel, my mother, has been in a nursing home for nearly seven years, and visiting her most weeks has taught me a great deal.
In 2005, when she was 75, my mother wrote in The BMJ:
“I (HS) am 75, fit, and enjoying life, although I lost my husband of more than 50 years last year. I’m not lonely, and being on my own allows me to do things that weren’t possible when my husband was alive—like listening to Beethoven string quartets, which he found tuneless and mournful. But my life is diminished, and the work of my life is done. I have no fear of death, but I dislike intensely the idea of being demented and institutionalised. I’m moderately confident that doctors will be able to handle the pain that may come towards the end of life (although I’ve encountered many examples where they failed), but they cannot counter the loss of dignity, personhood, and control that comes with dementia.
If I feel dementia approaching, I could of course kill myself. There’s nothing illegal about that, but I would be reluctant to involve my family and friends—for fear that they might be implicated in doing something illegal. Yet I don’t like the idea of sneaking off and doing it alone, not least because I might mess it up and end up in exactly the state I’d like to avoid. I’d much rather that my doctor help me—isn’t that what doctors are for?”
We have no doubt that my 75-year-old mother would be appalled by her 90-year-old self, but, of course, the 75-year-old Hazel Smith is not around. Recently I met with Canadian doctors who provide Medical Assistance in Dying (MAID), and it is likely soon in Canada that people like my 75-year-old mother will be able to prepare an advanced directive saying, for example, that if they reach the stage of not knowing their relatives they would like to be helped to die. But, as the Canadian doctors said, who would feel comfortable initiating the process? I certainly wouldn’t with how my mother is now.
The most difficult part of my mother’s decline was deciding when to admit her to a nursing home. She was clear that she didn’t want to go into a nursing home, but she reached a point with her dementia—and particularly her drinking—when she was being found by the police wandering the streets drunk. We contemplated trying to arrange 24-hour care at home, but it would have been a complicated undertaking—so we found an acceptable nursing home, which was not so easy. One of our key requirements was that she would be able to die in the home without needing to be transferred to hospital.
I remember the day that my wife and I drove her from her home in Kent to a home near us in South London. I felt like an executioner. She didn’t know that she was leaving her home for the last time. We explained what was happening, but she forgets what is said to her, or what has happened within seconds.
But the nursing home gave her a new lease of life. The staff weaned her off the alcohol, meaning that she was much more alert if still forgetful. And she ceased to be lonely. Despite what she wrote in the letter of 2005 she was lonely, and the alcohol was self-treatment for her loneliness. As the years have gone by she has come to be more and more “at home” in the nursing home, and these days I begin to feel as if I’m interrupting her life by arriving and offering to take her for a walk and read to her.
For six years we have had a pattern of me taking her for a walk of about three quarters of a mile and then reading to her—first my father’s memoirs, then my brother’s autobiography, and now my brother’s latest book. The walk was the highlight of her day. She would chatter, talk about the weather, and refer repeatedly to the freshness and greenness. But now she is less keen to go for a walk and keeps falling asleep as I read to her. These may be signs of death coming closer.
This possibility has sharpened, yet again, my desire to avoid her dying in hospital and even more so the appalling possibility of somebody giving her cardiopulmonary resuscitation. I’m pretty sure (but not absolutely sure) that we have a “do not resuscitate” order in place, but I’m urgently checking. I worry too that the order might be filed somewhere and unknown to the nurses on duty who are often agency nurses. Ever since she was first admitted I’ve asked the staff to ring me before they call an ambulance if something happens, but they tend to ring the ambulance and then ring me. I’ve spoken to the GP (a registrar who moved on long ago) and written a letter that is in my mother’s file. Luckily, I have managed twice to stop such admissions, but it is the (sadly understandable) default of staff to ring for ambulances, particularly at night.
I’ve also tried signing up my mother to Coordinate My Care, the scheme that stops ambulances automatically taking people near the end of life to hospital if that’s what they or their families request. I’ve even spoken to the doctor who founded the scheme, and she has personally rung my mother’s care home. But I’m not confident that the scheme will work in a moment of crisis. As the ambulance driver said to me on one of the occasions I managed to stop my mother being taken to hospital, “Oh CMC, we’ve talked about that, but there are difficulties in getting it up and running.”
I’m arranging again to meet with the senior nurse, but I remain fearful that if my mother falls or has a stroke she will be whisked off to hospital. It may sound heartless, but if she is infected with covid-19 her illness will start relatively slowly. The staff would not immediately call an ambulance, and there would be ample time for my brothers and me to be with our mother in what might be her final days. My mother wrote 15 years ago: “…my life is diminished, and the work of my life is done. I have no fear of death…” I talk to her regularly about dying, and she is comfortable with the idea and recognises that death can’t be far away. I’ve got into trouble before for describing cancer as the best way to die, but pneumonia, “the old woman’s friend,” may be the best of all.
Richard Smith was the editor of The BMJ until 2004.