This is a guest post written by a colleague who works as a care home doctor in a small Swedish town. In other words, he is responsible for the wellbeing of frail elderly people living in care homes. He has treated a lot of patients with covid-19. Since the situation may be different in some other countries, I think it is useful to know before reading the article that in Sweden, people stay in their own homes until they are very close to the end of their lives. 50% of people who move in to care homes are dead within six months.
The article was published a few days ago in Svenska Dagbladet, one of the big Swedish daily newspapers. It is fantastic, the best thing I’ve read recently, so I asked him if it would be ok for me to translate it to English and post it on this site, in order for it to reach an international audience. He graciously agreed. The article clearly shows the difference between how the general public, and in particular younger people, think about death, and how doctors think about death. Enjoy.
The media reporting about covid-19 exposes the veritable fear of death that exists in our country. It creates a narrative where health care was denied to everyone in care homes, which caused them to die. It is for example claimed that these deaths could have been avoided with oxygen and intravenous fluids.
The perspective of the doctors working in care homes has been left out of the debate, and it has become clear that we need to communicate our work, since there are big misunderstandings among the population. Let me therefore tell you:
After 36 years working in internal medicine in a big hospital clinic, my last four years have been spent working as a home care doctor, with responsibility for, among other things, four care homes in a small municipality. Up to now, 36 of the patients in my care have been infected with covid.
I had met with all of them earlier, together with their relatives, as part of our annual care planning, where one of the main things we do is to plan what to do in the case of a decline in their health. This avoids meaningless and, for the patient, often tortuous ambulance trips in to hospital, and unnecessary investigations and treatments that don’t prolong life, but rather contribute to a drawn out and often painful process of dying.
Occasionally, covid-19 infected patients were sent in by me to the hospital, for different reasons. But most commonly a decision had been made, beforehand, that if an infection had been diagnosed with a pulmonary focus, with resulting low oxygen levels and malaise, we wouldn’t send old and frail patients to the hospital. Instead we would focus on giving good symptom reducing treatment in the care home. We wouldn’t give oxygen, which for dying patients shows little benefit compared with morphine and anxiety reducing medications.
I knew the patients well and am convinced that for many of the ones that died, death felt like a relief. Several had already during our care planning meetings told me that they longed for death, even though they showed no sign of underlying depression. Thus, it was not because of orders from above, or a lack of beds in the hospital, that the patients stayed in the care home. They stayed because it was decided, together with the patients and their relatives, that staying was in their best interests.
The benefit of oxygen therapy is perhaps the most important misunderstanding circulating in media. It is only in a situation where the patient has decreasing oxygen levels in the blood while still being relatively unaffected in terms of symptoms that oxygen therapy theoretically (there are no studies that prove it) possibly can be of benefit even in frail elderly patients, which is why individuals with this particular constellation should be sent to the hospital for oxygen therapy.
Among those whose general condition declines in parallel with their decreasing oxygen levels, oxygen therapy (and ventilator treatment) provide no benefit, something which was experienced in Italy and Spain early during the pandemic, when even frail elderly patients were put on ventilators. Virtually all of them died, after one to three weeks of ventilator treatment, in induced comas, with tubes in their throats, often without any relatives present, in an ICU – a foreign environment with unknown staff. In the care home they would instead have died after one to three days, in their own residence, surrounded by relatives and staff they know well.
Another misunderstanding becomes clear from the many stories in the media of patients who were first denied health care, only to later on be provided it after relatives demanded it, and then to have survived “because of” oxygen therapy. The experience of myself and many colleagues is that when a frail older person gets a covid-19 infection that goes in to their lungs and causes systemic symptoms, then oxygen therapy and ventilator treatment don’t affect the disease course (and there is no scientific evidence to support that they do).
That it is hard to determine the benefit of different treatment options can be illustrated by one of my patients: an almost 100 year old individual, who developed a mild cold and had an inital oxygen saturation of 98% , which is normal. The covid-19 test was positive. After a few days, the patient also developed a cough and shortness of breath, and the oxygen saturation dropped to 81%, which is seriously low. Since the patient had systemic symptoms, a decision was made not to send her to the hospital, in accordance with the reasoning provided above.
The patient improved spontaneously and was declared healthy a few days later. If the patient had been sent in to the hospital and received oxygen therapy, the newspapers and TV would have reported about yet another successful case of a patient who was saved by oxygen therapy (which the care home had “refused” to provide).
What about the fear of death? Both the media and the general public (and sometimes colleagues) seem to think of death as the health care system’s worst enemy, which always needs to be fought in all situations. Sometimes when a patient during a care planning session tells me that she longs for death, the children interrupt and say “don’t talk like that, mum!”
Usually, I will then ask the children, “why not?”. The patient feels that she has accomplished what she wanted to do, and is due to her illness bed bound, can’t any longer read or listen to music due to declining vision and hearing, suffers from chronic pain and loneliness. Is it so strange in that situation to long for death?
I don’t think so, and neither do many of the patients I meet on a daily basis in my work. These are the oldest and sickest patients, and that is why they live in care homes. Why so many younger people, not least journalists and newspaper columnists, don’t understand this, I have no good explanation for.
Personally, I am convinced that the best thing for many people at the end of life is not infrequently to let the disease take its natural course, and focus efforts on relieving symptoms. I have never met anything other than the greatest gratitude from patients and relatives when I have helped seriously sick and suffering patients, by removing anxiety, pain, and shortness of breath with the help of medications, so that they can pass on calmly.
With that said, we of course have to look at things that haven’t worked so well when it comes to elder care, in order to become better. For example, decisions about palliative care shouldn’t be taken without personal knowledge of and examination of the patient, and the decision should be made together with the patient and relatives.
Home care physician in Tibro
Personally, I was moved by this article. I think it shows perfectly the huge disconnect in thinking that often exists between the medical profession and the general public, and that is why I thought it would be worth sharing.
In the Emergency Room, I often see very old, very frail people, who have been sent in inappropriately from care homes. Instead of being in a familiar environment, surrounded by their own things and people they know, they lie in a crowded emergency room for several hours, on an uncomfortable hospital gurney, surrounded by unfamiliar people, while suffering painful needle jabs. Very rarely do they gain any benefit from the experience.
You might also be interested in reading about my experiences from working as an emergency physician during the covid pandemic, or be interested in reading my article about deprescribing, possibly the most important health intervention there is when it comes to the health of frail older people.