Covid-19: A Swedish care home doctor’s perspective

covid swedish care home doctor's perspective

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.

Eric Bertholds
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.

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37 thoughts on “Covid-19: A Swedish care home doctor’s perspective”

  1. As I expected from the very beginning.
    I have a similar story life: My mother worked in hospital half of her life and when she was diagnosticated with cholangiocarcinoma refused to be treated in hospital. She learned me to make morphine and others injected drugs and she did leave longer that expectancy for her illness (double time).
    It was the best decision she have ever made even if for me was painful to look everyday in her eyes and know that I will loose her. But she spent her last months in the garden with her family and friends. She never regret for hospital or healthcare, no single moment until the end.
    We should have the right to choose the way we die. My mother had 58 years at that time so I imagine for someone at 90 it is more easy to decide.

  2. Dr Rushworth, love your columns. Thank you very much for posting them. Concerning the use of oxygen therapy in the care homes, I’m a bit confused. I live in Florida in the US where we have a whole lot of retirees. It is not unusual at all to see people with an oxygen bottle either in a shoulder bag or strapped to a motorized wheelchair out shopping at Walmart — there is even one lady who rides a local paved bicycle trail with one on her motorized cart. They have a thin tube stretching from the bottle to a nose clip. It would seem a simple — and fairly inexpensive — thing to try just on the off-chance it might help. Is this sort of thing not done in Sweden, or does ‘oxygen therapy’ have a more specific meaning that requires a hospital stay?

    Dr Bertholds’ column gives a nice view of the other side of the care home experience. People tend to have unrealistic expectations of what doctors can achieve.

    1. Hi Geoffrey,
      Dr. Bertholds is talking about oxygen therapy for acute illnesses, like covid, in frail elderly people who are already very sick and close to death. This doesn’t apply to oxygen therapy for chronic illnesses, like COPD, which can often be appropriate.

  3. Very moving indeed! I wish all healthcare workers would emulate this noble approach to life and death.
    Thank you so much for translating the article.

  4. Dr. Rushworth, I very much enjoy your blog and topics, many of which are of great interest to me. I was sent this link to an article which attempts to claim that Sweden’s handling of the virus has been out of step with accepted practice of the rest of the developed world, not that other countries have a stellar record to tout. After reading it, I certainly see a bias from the author, however, my question to you is how you may see this from your perspective?

  5. After dad died, mom lost the will to live. She was 92 at that time and on painkillers due to her osteoporosis. She also was deaf, so communication was difficult to say the least. She simply felt alone, even though we took care of her at home. She demanded more and more painkillers, which I denied, because I am not a medical professional. She did not want to see her family doctor either but eventually asked to go to the hospital. They put her on morphine right away to make her feel comfortable. Even though we went every day, we noticed, she felt even more lonely. It only took another 10 days, she passed away shortly after her 93rd birthday – about 5 months after dad died.

  6. Very moving and realistic!
    Thank you so much for translating and sharing the article and thanks a lot to your colleague, a pious person and dedicated to his profession.

  7. Thank you very much, Dr Rushworth, for taking the trouble to translate and publish this article on your blog. Very little has been heard, at least here in the UK, about doctors’ experiences of working with the very old during the time of coronavirus, and so this account is valuable. This man is clearly a very compassionate doctor. I hope very much that when the death comes for me, I will meet with such gentle treatment as he is giving his patients.

  8. Dr Rushworth, thank you for replying. I did understand he was talking of the old and frail with regards to oxygen therapy. He was talking about the therapy in the context of sending the patient to the hospital which would obviously be traumatic. I guess I would assume they’d have tried something like a COPD setup in-house and found it was not helpful. I was just curious because it sounded like an all-or-nothing choice — hospital or no supplemental O2 — with no middle ground. Then again, I was a computer engineer, not a doctor!

  9. Thank you for that very interesting artlcle.
    I’ve had this sort of experience with my mother in our local Hospice. Kind, caring, gentle and sensitive care at the end of her life – and the inclusion of myself and the rest of the family in that circle of care.
    My greatest sadness, with all the cruel and thoughtless ”rules” that are being foisted upon us in the name of ”safety”, is that dying people cannot be surrounded by those they love, and that those loved ones have to suffer the anguish of loss, blighting the rest of their own lives.

  10. Geoffrey, I too don’t understand what the piece said about oxygen. I believe that the use of ventilators is now seen as less desirable and less necessary than it was at the beginning. But I thought that supplemental oxygen, either by means of a nose clip or by a CPAP machine, had been found to be useful and is often seen in news reports. But as you say, that can be given in the community or care homes, not just in hospital. As I understand it the extra oxygen makes it easier for a person to breathe whilst they wait for their immune systems or other treatments to cure the covid infection. But I too am not a medical person and would welcome some clarification.

    1. Hi,
      The thing about oxygen is that it is a medical treatment, just like any other. And if you give it, it has to be for a reason. What the author is saying is that in very frail old people with covid pneumonia, giving oxygen does not increase their chances of surviving the infection.

      So if it doesn’t increase survival, there needs to be another reason to give it, for example for symptom relief. But our bodies are not able to sense lack of oxygen until the saturation drops very low, 60-70%, so giving oxygen to someone with a saturation of 85 won’t do anything for their shortness of breath. Morphine, on the other hand does decrease the feeling of shortness of breath. So if you are not prioritizing survival, but are instead prioritizing symptom relief, morphine is better than oxygen.

  11. The whole article is a biased propaganda piece from Big Pharma, aiming at promoting untested, dangerous, but very profitable vaccins. No proofs, statistics or real facts were presented, or provided, only very biased opinions, making me suspect the athors have more than a little invested interest, in that very same Big Pharma.

    If you look at the real facts and statistics, there is plenty of evidence that Sweden has herd immunity by now, for example, the actual death tolls in Sweden for September (or any of the last 4 months), or look at the actual death curve (SCB) in Sweden for 2020, or the actual number of severely ill Covid patients in the EMR at the hospitals. That is of course to look at the real world and the real numbers, not what the Big Pharma want you to do.

    There has been several scientific studies done by now, that conclude that the face masks are very dangerous to wear due to reduction in O2 by up to 20%, an increase of CO2 way past a poisonous level, severely restricts your breathing ability, and doesn’t prevent any virus-spread.

    To confuse an increase of new covid-cases with a second wave, when it’s been proven time and time again that the PCR-test is deeply flawed, with around 80% false positivs, further shows that this article was a hit-piece. Why do we even test people who are healthy, who are NOT sick? it doesn’t make any sence, at all. Unless of course, you WANT the numbers to increase, you WANT the laissez faire approach to fail, and you WANT to use a manipulation tool, (the PCR-test) to confirm your dark agenda.

  12. Thank you Sebastian! This is perhaps not for you to answer for, since you are not the author of the original article. But what strikes me as odd is the reluctance from elderly care homes to give oxygen therapy on site. It is claimed that this therapy can only be given in an emergency hospital, for reasons somewhat unknown. I would expect that a patient that survived covid with a saturation of 81% would have less discomfort of their illness with oxygen supplementation therapy. Sometimes it is appropriate to actively shorten the patients life expectancy by withholding them oxygen therapy and giving morphine to reduce symptoms of dyspnoea when some acute illness with hypoxemia occur (i.e. dementia with severe anxiety/agression, or late stage cancer with chronic pain), but this would be a minority of cases. Oxygen would probably resolve dyspnoea as good as morphine in those with a covid infection, with less risk of opioid induced hypoventilation. I used to work as a doctor (a short time) caring for elderly homes in Sweden, and imagining a scenario with covid in my care home I would have made sure they had access to oxygen tanks.

  13. Dr Rushworth, how can the difference in number of deaths in Swweden compared to other Nordic countires best be explainded?

    1. Hi Håkan,
      I think the main explanation is the unusually low number of people who died in Sweden the previous year. This meant that there were unusually many very fragile old people living in Sweden at the beginning of 2020.

  14. Would that explain such a big difference in deaths? I had a quick look at EUROMOMO graphs and it’s hard to see such a big diffenence compared to our neighbours.

    1. I think that is the main explanation. I think the fact that Sweden has a bigger dark skinned population could also be part of the explanation, since people with dark skin seem to be affected worse by covid, probably due to worse vitamin D levels, and its also possible that these countries lockdowns had some temporizing effect.

  15. Hi Martin,
    Just an opinion. When Covid hit Sweden, no homecare had logistic with oxygen therapy. So, on that point, oxigen therapy was only in hospital where we all know that protocol used was mechanical ventilation rather oxygen therapy if oxygen saturation was very low.
    The person which only need oxygen therapy (and not mechanical ventilation) will survive anyway, without. And here is my experience when oxygen saturation was around 86- 87 and even if I had 40 episodes only 10 recoveries was in hospital, the rest of them was at home without oxygen therapy. And I can say that even was unpleasant, the recovery was more quick then those hospitalized. It is an anecdotical experience but medicine is not white and black and most probably, Sweden have had the same amounts of deaths even if all has been hospitalized.
    The big problem Sweden had, was they did not protected the vulnerable for the beginning.

  16. Although those with darker skin have been more affected by covid they are generally younger than average, hence not a big part of total death count. So that effect can only be marginal.

    And any temporary lockdown effect is still there, the neighbours are still not catching up out death count.

  17. I don’t know, that’s why I’m asking in the first place. Numbers seam to be all over the place and definitions are vageue, do we even know what we mean with Covid death or Covid cases? So diffrences in definitions is one possible explenation, as is our poor preparedness as well as differences in organisation and leadership styles. But again, I don’t know but i want to understand.

  18. The difference between Sweden and the other Nordic countries is indeed remarkable and it would be nice to understand the reasons. Maybe Sweeden has payed a price in “covid deaths”, but saved other lives?.

    You cannot critisize the swedish course without taking the costs of lockdown etc into account and that is NEVER done.

  19. @Martin Agerhäll I am not a doctor but I am glad that I read your opinion which confirms my gut feeling that if possible one should always give oxygen in most cases not morphine. It honestly shocks me to read this article, esp. the casual attitude about it.

  20. My feeling is:
    When in a happy married couple one of its member die, the other member dies in half a year.
    If the marriage is just and only socially successful, after the death of a member the other survives years.
    That’s not science. Only it is ‘looking’.

  21. I always thought that a low arterial O2 content increases the mechanisms to overcome it.
    As dispnoea and polypnoea. I will never sedate anyone who is ‘hungry for air’ mostly if I do not understand ‘why’.

  22. My father also died in April, in a care home in the UK. He already had a DO NOT RESUSCITATE order with him, should he become desperately ill. He was 93 yrs old and felt that he had lived his life and felt quite calmly it was time to move on. He was a very active person up until 2.5 years before his death, but the loss of his ability to drive and various bodily pains meant that his quality of life was limited. He had constant infections as is normal for people of his age and in the end they asked us if we wished him to go to hospital every time he had an infection as it was very disturbing for the patient and confusing, a fact that was confirmed for me by another resident to whom I chatted to one day. She said it isn’t nice to go to the hospital especially if the patient has some level of dementia and there is so much going on they just feel confused and scared.
    Even though he had a large family who loved him he felt he didn’t want to keep being brought back from the brink. Everything was discussed before hand, as the care home he was in didn’t want there to be any misunderstanding in the time when difficult decisions needed to be made and they wanted to take into account how he felt about things. I absolutely loved the care home he was in they were so caring and respectful even to the very end.
    People do feel scared of death or think it is terrible if you can let someone go who actually is quite happy to. There is also the fear of misuse here which is understandable.
    I miss my father a lot especially as I was not able to be there at the end or go to his funeral. I live overseas and hoped to come home in November to spend a little time in his house before that goes, but it looks like that wont be possible now with further lockdowns. Sorry but I feel there are people who are responsible for this mess and I hope that something will be done about that.
    None of this is normal.

  23. Yes Steve, the article is poorly researched. Look at the e-letters posted (in Science, one of the sheets) for better context.

  24. Did you know there is NO recommended medication in the UK that stops common flu which is an RNA virus as is covid from progressing to Pneumonia which is what actually kills the patient, especially the elderly. In 1918 an old drug called quinine saved thousands, the modern version is Hydroxychoroquine which is used by millions each day to treat Rheumatoid Arthritis and Lupus, this drug is used by these patients over decades and is totally safe. The drug together with zinc sulphate and the antibiotic Doxycycline stops that progression in over 90% of cases, if used within 5-7 days of symptoms, the 3 drugs are antivirals even the antibiotic. Hydroxycloroquine was banned early in the covid epidemic by the UK government as it would compete with the fast tracked covid vaccine. search the term ( Zelenko protocol )

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