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How Sweden Abandoned Its Most Vulnerable – And Its Principles

Kelly Bjorklund catalogues the personal impact of Sweden’s laissez-faire approach to the Coronavirus pandemic

Anders Tegnell, chief epidemiologist at Sweden’s Public Health Agency. Photo: Frankie Fouganthin / Wikimedia Commons

How Sweden AbandonedIts Most VulnerableAnd Its Principles

Kelly Bjorklund catalogues the personal impact of Sweden’s laissez-faire approach to the Coronavirus pandemic

Sweden’s self-proclaimed role as a humanitarian superpower has died, along with the country’s nearly 8,000 COVID-19 victims. 

Despite the ‘precautionary principle’ being a cornerstone of Swedish democracy, the country’s authorities chose not to enact early or effective protections to shield its most vulnerable. 90% of Sweden’s COVID-19 deaths have been among people aged 70 and over; half of whom lived in long-term care facilities.

“Most of the elderly die without ICU (intensive care unit) care,” Anders Tegnell, chief epidemiologist at Sweden’s Public Health Agency (FHM), wrote to colleagues on 24 March. Despite this knowledge, the Government under Prime Minister Stefan Löfven and its authorities did not take measures to ensure that its elderly were protected.

Tegnell advised the UK’s Prime Minister Boris Johnson in September against lockdown, while his colleague Johan Giesecke advised the governments of Ireland and India to the same effect. Internal emails reveal that Tegnell, Giesecke and their colleagues cheered on the UK’s ‘herd immunity’ strategy that Johnson and his Government’s Chief Scientific Advisor Sir Patrick Vallance chased early in the pandemic.

Annika Linde, Tegnell’s predecessor at FHM, warned Tegnell on 15 March of widespread asymptomatic cases in China – noting that the elderly and vulnerable would not be protected if only those with symptoms were instructed to stay home.

Linde advised a shutdown of social contacts. Tegnell replied and acknowledged asymptomatic spread but said “if we stop those with symptoms, we stop enough to slow down the infection”.

But Sweden’s Coronavirus Commission report, published on Tuesday, found that “the strategy failed to protect the elderly” and that the Government’s measures were both insufficient and late. 

The Swedish Health and Care Inspectorate (IVO) reported in its investigation that one-fifth of people in nursing homes were denied their right to receive an individual medical assessment. Failures were cited in all of Sweden’s 21 healthcare regions.

“The casualties in Sweden are mostly in elderly homes and older people,” Prime Minister Löfven said on 8 September. “That has nothing to do with people walking in the city.”

But the commission rejected this characterisation in its report. “The single most important factor behind the major outbreaks and the high number of deaths in residential care is the overall spread of the virus in society,” it said.

A line repeated by the Government and FHM throughout the pandemic is that intensive bed capacity was never a problem. This is problematic.

Firstly, their stated goal was never to avoid the spread of the virus, thereby preventing illness and death, but rather to allow it as long as the ICU beds “held”. Second, hospital beds were available because people were denied access to them. Stockholm has no ICU beds available and other regions have appealed to citizens not to drive cars or engage in any behaviour that would put them in need for hospital care – because there is no capacity. 

Palliative Care

Byline Times reviewed patient journals and spoke to patients’ families and found that doctors prescribed palliative care in advance without discussing it first with the patient or their relatives.

In one journal from March, Dr Hanna Wilen noted that one patient would not be sent to hospital and would instead receive palliative care. The patient’s relative – who wishes to remain anonymous for fear of retribution to her parent’s healthcare – says that neither the patient nor their relatives were informed in advance, despite the patient desiring hospital care in the event that it was needed.

When Byline Times spoke to Katarina Yngve, Valla Clinic’s healthcare manager, she confirmed that Wilen works there. When Yngve was asked under whose directives the decision was made to choose between hospital care and palliative care, she said “I think I should not go into this on the phone” and refused to comment further. 

Despite repeated attempts, Byline Times could not reach Dr Wilen or the leadership at Region Ostergötland, which is responsible for the Valla Clinic.

Dr Tallinger and others believe that the National Board of Health and Welfare’s guidelines gave cover for doctors and regions to keep elderly people out of hospital.

On 20 March, the region issued guidelines which stated that, due to the COVID-19 pandemic, doctors needed to plan care for people living in nursing homes and those who receive at-home care.

The guidelines instructed healthcare care staff to evaluate which interventions should be taken in the event of a respiratory infection. The guidelines then described how to justify and document in the patient journal the decision not to send a patient to hospital: “In view of the patient’s general state of health, the patient is assessed that at a further deterioration and passed the breaking point to receive end-of-life care. The following can then be documented: Drug treatment ‘Prescribes usual palliative drugs’.” This language is very similar to that of Dr Wilen.

Regions throughout Sweden ordered similar directives. Jan Andersson was ordered for palliative care without ever speaking to a doctor – his son ordered that it be stopped and Jan recovered. Elderly care professors and ethicists spoke out against this discrimination.

Yet the Government, its agencies and the country’s healthcare regions did not stop the ongoing tragedy. 

The Treatment Trap

Ingmar Skoog, a professor of psychiatric epidemiology and director of the Centre for Ageing and Health at the University of Gothenburg, sounded the alarm in the Spring to Lena Hallengren, the Minister of Health and Social Affairs.

Skoog warned of a lack of protective equipment, and that the high staff turnover in elderly care could lead to the spread of infection. The answer he received from the Government was that he was stepping beyond his remit. Unions also warned the Government about a lack of protective equipment and were ignored.

“There are clearly lessons to be learned due to the large number of infected and deceased elderly persons in Sweden,” Olivia Wigzell, director of the National Board of Health and Welfare, told Byline Times. “It is very serious that not all elderly patients have received individual medical assessments. The shortcomings are not compatible with either the law nor the National Board of Health and Welfare’s guidance, which emphasises that medical care shall be provided based on individual needs.”

Despite the Board’s own guidelines stating that priority should be given to patients based on biological age, often a ‘clinical frailty scale’ was used to determine whether someone should receive hospital care or not in the event of illness.

Directives from the Board state the importance of creating healthcare plans in advance and to assess treatment options in the event of a COVID-19 infection, in line with national principles for prioritising routine medical care during COVID-19 pandemic, as well as the prioritisation of intensive care capacity.

These national guidelines would cause people to die as collateral damage. One doctor told Byline Times that, in practice, this means if a patient had a urinary tract infection they may be put on palliative care instead of IV antibiotics. Eva Burman’s mother was sent for palliative care and denied hospital treatment after breaking her arm. 

Keeping Elderly Patients Out of Hospital

One doctor who was told to prioritise patients is Jon Tallinger. Dr Tallinger was a primary care physician at a healthcare centre in Jönköping who has since left his country in protest at how Sweden has handled the Coronavirus pandemic.

On 8 April, he received an email ordering him to make care plans for his patients. The email contained a link to a video on how to provide “end-of-life care with COVID-19 in primary care” which recommended morphine as a first treatment and did not mention oxygen.

In the planning of care, it was assessed whether a patient, in the event of contracting COVID-19, would stay in the nursing home and receive morphine or if they would be strong enough to survive the ICU and a ventilator. “There was no middle road of getting oxygen treatment or other care at the hospital,” Dr Tallinger said.

The answer to why there were failures in all of Sweden’s 21 health care regions may lie in the guidelines produced by the Board, which is responsible for regulating medical care and social services. 

Dr Jon Tallinger

Its earlier guidelines for COVID-19 care stated that, in the case of a patient being hypoxic – meaning they don’t have enough oxygen in their arteries which makes it difficult to breathe – “try oxygen treatment, especially if oxygen saturation is less than 90%”. This meant that oxygen saturation needed to be checked and monitored.

Yet a new version of the guidelines, released on 4 May, stated: “Possibly try oxygen treatment.” This meant that doctors were no longer required to check oxygen saturation and it was no longer obligatory to treat patients who had breathing difficulties with oxygen. Oxygen saturation meters are rare at nursing homes and oxygen is only available at hospital.

Dr Tallinger and others believe that the Board’s guidelines gave cover for doctors and regions to keep elderly people out of hospital.

“Only one person per department was tested,” a nurse at Hammarhus nursing home in Gothenburg told Dagens Nyheter on 9 December. “If that patient was positive, everyone with the slightest cold symptoms was classified as ‘suspicious’ and received palliative care, without the supervision of a doctor.”

The Example of Ulla

Sweden is facing a catastrophic second wave of the virus and has more hospitalisations than it did at the height of the first wave.

All planned care in the Stockholm region, which serves more than 20% of the country’s 10 million people – alongside several other regions – has been cancelled. Bars, restaurants, gyms and shopping malls remain open. 

Ulla Matteuzzi. Photo: Susanne Matteuzzi

On Thursday, the Government announced that it would begin the use of rapid COVID-19 tests, recommended by the European Centre for Disease Prevention and Control since 28 October. But, despite the Commission’s report, additional measures have not been proposed to safeguard the elderly, those in risk groups nor the general population in Sweden.

Ulla Matteuzzi was denied hospital care. She lived at Edö nursing home in Stockholm and suffered from dementia. Aside from high blood pressure, she was physically healthy according to her daughter Susanne.

On 12 April, care staff at the nursing home sent a photo to Susanne of Ulla sitting up in bed. Two days later, the staff phoned and said that her mother was having difficulty breathing. “Take her to the hospital,” Susanne implored. But the care staff said that her mother would be cared for at the nursing home and had already been given shots of medication. Palliative care was not discussed with Susanne or her sisters.

The next morning, 15 April, Suzanne received another phone call: her beloved mother had died.

“We were devastated,” she told Byline Times. “The nurse told us ‘I was in with your mother and gave her two shots and then I had to treat another patient. When I came back she had died’. My mother died alone. No one explained or asked my sisters or me what we thought. They didn’t explain and we didn’t know she was going to die. I put my mother’s life in their hands and they couldn’t take care of her properly.”

Ulla was never tested for COVID-19 and is not included in the country’s statistics. Two months after her death, the care home phoned Susanne and said that the cause of death was dementia. Åsa Smedberg, a manager responsible for elderly care in Stockholm including at Edö nursing home, refused to comment when asked about patients being designated for palliative care.

A temporary field hospital in Stockholm with 600 beds which opened on 6 April did not receive a single patient. Suzanne wonders why her mother could not have received care there. 

A National Disaster

“These folks worked all their lives and built this country and they’ve been completely abandoned,” says Rich Klingsborg, 36, who suffers from an aggressive auto-immune disease that requires him to have weekly blood tests to keep his illness and medication in check. Not doing so could cause him to suffer a blood clot or haemorrhage.

Due to Klingsborg belonging to a high-risk group, his doctor said his blood sample could be taken at home. But staff refused to wear a mask. Klingsborg pleaded with them, and even bought them masks, but they would not accommodate him. 

“It’s just so reckless that trained healthcare professionals won’t wear masks,” Klingsborg told Byline Times. “I feel lucky to be alive.” When he complained to his doctor again in October about the lack of masks, the he said the doctor merely replied: “Masks are debated. We don’t use masks when sampling at-risk patients. I understand that you are afraid of being infected but I do not think the risk is great, nor do I think that the consequences must be the worst.”

“I’m just a statistic,” Klingsborg added. “They’re leaving me stranded. They completely abandoned me.” He says the situation in Sweden is like witnessing a mass psychosis involving the “culling of the elderly and weak”.

Richard Klingsborg

In the region of Halland, where Klingsborg lives, masks for healthcare workers were not recommended until 17 December. Despite the Commission’s finding that the absence of clear guidelines and a lack of personal protective equipment in elderly care contributed to the spread of the virus, masks are still not recommended for use in elderly care or healthcare generally in Sweden. Just today, the FHM finally recommended that masks be worn on public transport during times when congestion cannot be avoided, with effect from 7 January 2021.

In the UK and the US, palliative care guidelines include oxygen as a comfort measure but, in Sweden, oxygen is not available in nursing homes and patients who suffered with breathing difficulties often suffocated to death. The Board has not updated its guidelines to advise the supply of oxygen in nursing homes. 

Yet, Tegnell and Johan Carlson, the director-general of Sweden’s Public Health Agency, remain defiant, rejecting the Commission’s criticisms. The agency did not respond to Byline Times’ request for comment.

“It is the biggest national disaster in Sweden’s history,” Dr Tallinger said. “And it didn’t happen because Sweden was trying to save as many as we could and get old people to the hospital. They didn’t even try.”

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