{"id":46815,"date":"2020-03-09T09:37:15","date_gmt":"2020-03-09T08:37:15","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=46815"},"modified":"2020-03-26T18:04:45","modified_gmt":"2020-03-26T17:04:45","slug":"richard-smith-my-worry-about-my-mother-is-not-her-dying-of-covid-19-but-her-dying-on-a-trolley-in-an-emergency-department","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/03\/09\/richard-smith-my-worry-about-my-mother-is-not-her-dying-of-covid-19-but-her-dying-on-a-trolley-in-an-emergency-department\/","title":{"rendered":"Richard Smith: My worry about my mother is not her dying of covid-19, but her dying on a trolley in an emergency department"},"content":{"rendered":"<p><span style=\"font-weight: 400\">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\u2019ll die of covid-19, but that she\u2019ll die on a trolley in the emergency department of the local hospital.<\/span><\/p>\n<p><span style=\"font-weight: 400\">As a <a href=\"https:\/\/blogs.bmj.com\/bmj\/2020\/03\/06\/personalised-care-what-matters-to-you\/?utm_source=twitter&amp;utm_medium=social&amp;utm_term=hootsuite&amp;utm_content=sme&amp;utm_campaign=usage\">recent powerful piece in <\/a><\/span><i><span style=\"font-weight: 400\">BMJ Opinion<\/span><\/i><span style=\"font-weight: 400\"> has shown yet again, the \u201cstandard protocol\u201d makes death in acute hospital highly likely to happen despite the best intentions of health and social care staff.<\/span><\/p>\n<p><span style=\"font-weight: 400\">Hazel, my mother, has been in a nursing home for nearly seven years, and visiting her most weeks has taught me a great deal.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">In 2005, when she was 75, <a href=\"https:\/\/www.bmj.com\/content\/331\/7520\/842.5\">my mother wrote in <em>The BMJ<\/em><\/a>:<\/span><\/p>\n<p><span style=\"font-weight: 400\">\u201cI (HS) am 75, fit, and enjoying life, although I lost my husband of more than 50 years last year. I&#8217;m not lonely, and being on my own allows me to do things that weren&#8217;t possible when my husband was alive\u2014like 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&#8217;m moderately confident that doctors will be able to handle the pain that may come towards the end of life (although I&#8217;ve encountered many examples where they failed), but they cannot counter the loss of dignity, personhood, and control that comes with dementia.<\/span><\/p>\n<p><span style=\"font-weight: 400\">If I feel dementia approaching, I could of course kill myself. There&#8217;s nothing illegal about that, but I would be reluctant to involve my family and friends\u2014for fear that they might be implicated in doing something illegal. Yet I don&#8217;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&#8217;d like to avoid. I&#8217;d much rather that my doctor help me\u2014isn&#8217;t that what doctors are for?\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400\">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. <a href=\"https:\/\/blogs.bmj.com\/bmj\/2020\/01\/22\/richard-smith-learning-from-canada-about-assisted-dying\/\">Recently I met with Canadian doctors<\/a> 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.\u00a0<\/span><span style=\"font-weight: 400\">But, as the Canadian doctors said, who would feel comfortable initiating the process? I certainly wouldn\u2019t with how my mother is now.<\/span><\/p>\n<p><span style=\"font-weight: 400\">The most difficult part of my mother\u2019s decline was deciding when to admit her to a nursing home. She was clear that she didn\u2019t want to go into a nursing home, but she reached a point with her dementia\u2014and particularly her drinking\u2014when 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\u2014so 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.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019t 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.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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 \u201cat home\u201d in the nursing home, and these days I begin to feel as if I\u2019m interrupting her life by arriving and offering to take her for a walk and read to her.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2014first my father\u2019s memoirs, then my brother\u2019s autobiography, and now my brother\u2019s 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.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019m pretty sure (but not absolutely sure) that we have a \u201cdo not resuscitate\u201d order in place, but I\u2019m 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\u2019ve 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\u2019ve spoken to the GP (a registrar who moved on long ago) and written a letter that is in my mother\u2019s file. Luckily, I have managed twice to stop such admissions, but it is the (sadly understandable) <a href=\"https:\/\/blogs.bmj.com\/bmj\/2018\/09\/11\/richard-smith-a-small-insight-into-avoiding-some-of-the-pressure-on-ae-departments\/\">default of staff to ring for ambulances<\/a>, particularly at night.<\/span><\/p>\n<p><span style=\"font-weight: 400\">I\u2019ve 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\u2019s what they or their families request. I\u2019ve even spoken to the doctor who founded the scheme, and she has personally rung my mother\u2019s care home. But I\u2019m 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, \u201cOh CMC, we\u2019ve talked about that, but there are difficulties in getting it up and running.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400\">I\u2019m 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: \u201c\u2026my life is diminished, and the work of my life is done. I have no fear of death\u2026\u201d I talk to her regularly about dying, and she is comfortable with the idea and recognises that death can\u2019t be far away. <a href=\"https:\/\/blogs.bmj.com\/bmj\/2014\/12\/31\/richard-smith-dying-of-cancer-is-the-best-death\/\">I\u2019ve got into trouble before for describing cancer as the best way to die<\/a>, <\/span><span style=\"font-weight: 400\">but pneumonia, \u201cthe old woman\u2019s friend,\u201d may be the best of all.<\/span><\/p>\n<p><em><strong>Richard Smith<\/strong>\u00a0was the editor of\u00a0<\/em>The BMJ<em>\u00a0until 2004.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>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 [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2020\/03\/09\/richard-smith-my-worry-about-my-mother-is-not-her-dying-of-covid-19-but-her-dying-on-a-trolley-in-an-emergency-department\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":38422,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[955],"tags":[],"class_list":["post-46815","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-richard-smith"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - 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