FROM THE EDITOR
Sweden has followed a different Covid-19 strategy. Instead of imposing quarantines and lockdowns, it had a "common sense" policy of voluntary social distancing, border closures, and limits on crowds. Although it didn't mention the phrase "herd immunity", that was essentially its goal.
However, something went very wrong with its policy for nursing homes. As in other countries, residents were treated as second-class citizens and often did not receive adequate treatment. Thousands have died. Why?
BioEdge's editor is going on holidays this week, so there will be no newsletter next weekend. We'll be back in mid-July.
|This week in BioEdge|
Commentators have recently raised serious concerns about healthcare practitioners’ experience of moral distress during the COVID-19 pandemic.
COVID-19 has placed acute pressure on healthcare systems around the world, and many healthcare practitioners are ill-equipped to handle the moral dilemmas arising as a result of the pandemic. Often a healthcare professional will know what the right thing to do is, but institutional constraints make it nearly impossible to pursue the right action.
One moral challenge that healthcare professionals have faced in the COVID-19 crisis is the allocation of scarce life sustaining ICU resources. Harrowing stories from Italy and Spain have provided insight into the agonising moral decisions that some clinicians have had to make about who receives access to ventilators and critical care interventions.
Yet the moral stress of pandemics is not limited to resource allocation alone. Other issues that have been a source of anxiety and frustration for clinicians include a lack of personal protective equipment, contagion management and the risk of passing on the disease to others, and social deprivation between doctors and patients (a result of both time pressures and the need to social distance).
“It is well understood that clinicians and clinical support workers who work extended hours and extra shifts, especially under stressful conditions of scarcity, overload, and trauma, are more vulnerable to moral stress”, Johns Hopkins Carey Business School Associate Professor Lindsay Thompson said in an interview.
Commentators have made several suggestions to alleviate the moral distress experienced by clinicians.
In a blog post for the British Medical Journal, health policy experts A.M. Viens, Catherine McGowan and Caroline Vass said that healthcare systems should provide better ethics guidance for clinicians so that they do not feel overwhelmed by the decisions that they are confronted with in their professional practice. They write:
“[S]upporting [health care workers’] ability to navigate ethical dilemmas, especially those that institutional and situational constraints make it impossible to satisfactorily resolve, will provide a more resilient workforce that is better able to weather the covid-19 storm and be in place [and] ready for the next [pandemic]”.
Specifically, healthcare authorities should provide detailed and specific guidance concerning the ethical issues that clinicians are likely to face in a pandemic. Clear guidelines and processes will facilitate consistency and lessen the moral distress of clinicians charged with making decisions on a ward.
Individual-level ethics education and training can also help promote individual and workforce resilience, the authors suggest.
The Canadian Medical Association has published detailed guidance to assist clinicians and care teams that are dealing with the impact of moral distress.
Several ethicists have written at length about the forensic use of Direct-To-Consumer (DTC) genealogy databases to catch criminals. Interest in this topic burgeoned following the arrest of the Golden State Killer in California in 2018. There has been limited academic discussion, however, of the use of biobanks in criminal investigations -- a related though distinct issue to genealogy databases. A new article in the Journal of Medical Ethics explores some of the ethical considerations involved in the forensic use of specimens from biobanks.
Three researchers based in the Netherlands examine how issues like confidentiality, trust and autonomy might come to bear on criminal investigations using tissue samples from biobanks. One example the authors use is the investigation that led to the arrest of the so-called 'Bind Torture Kill' murderer in Kansas in 2005. Authorities in that case had identified a suspect -- a man by the name of Dennis Rader -- but they were unable to verify whether the DNA found at the different murder scenes matched the suspect’s DNA. Law enforcement then decided to seize a Pap smear from Rader’s daughter, which had been obtained as part of a cervical cancer screening in the university clinic on the campus where she studied at the time. The DNA profile obtained from her cervical cell material resulted in a close match to DNA found at the murder scenes. Dennis Rader was arrested and sentenced to ten life terms.
The authors of the article question whether in cases like Rader’s it is acceptable to violate the medical confidentiality of a third party. They note that data from a Pap smear is very sensitive information, and that a broad variety of sensitive information can be derived from the sample, including detailed information about a person’s health. The use of this data in criminal investigations risks undermining public trust in the integrity of the healthcare system -- especially where patients have been assured that their data will be stored in a confidential manner.
To some this may not sound like a major concern, particularly when authorities are trying to investigate very serious crimes. But the authors note that a decline in public trust may in fact lead some people -- particularly people prone to anxiety and paranoia -- to refuse certain medical tests out of fear for their own privacy. “[Some patients] could reason that, somehow, in the future they may be sought by the police (because who knows which path life or politics will follow)”, the authors write.
The law on the forensic use of biobanks varies greatly between jurisdictions. Some countries in Europe, such as Finland and Estonia, explicitly prohibit the use of information from biobanks in criminal investigations. Legislation has been introduced in other European nations, however, that would permit the forensic use of biobank information for serious crimes.
Xavier Symons is deputy editor of BioEdge
Disturbing figures are coming from Sweden about the number of Covid-19 deaths amongst the elderly. According to an article in the Wall Street Journal, half of the people who died in Sweden were residents of nursing homes.
Sweden’s approach to the pandemic was different. It relied upon voluntary social distancing and closing the borders rather than quarantines. But it is still the fifth country in a world ranking of deaths per million of population – and half of those were residents of nursing homes.
The health authorities have received many complaints about how elderly relatives were treated. A consistent theme is that nursing home residents with suspected Covid-19 were immediately placed on palliative care and given morphine and denied supplementary oxygen and intravenous fluids and nutrition. For many this was effectively a death sentence.
“People suffocated, it was horrible to watch. One patient asked me what I was giving him when I gave him the morphine injection, and I lied to him,” said Latifa Löfvenberg, a nurse. “Many died before their time. It was very, very difficult.”
The problem seems to have been the guidelines issued by the National Board of Health and Welfare. At the start of the pandemic it suggested that doctors triage patients according to their so-called biological age, weighing overall health and the prospects for recovery, before making treatment decisions.
“Doctors overseeing nursing-home care were advised to keep their distance from residents because of infection risks and told to carefully weigh the condition of patients before referring them to hospitals, said Thomas Linden, chief medical officer of Sweden’s National Board of Health and Welfare.”
The idea was to keep hospital ICUs from being overwhelmed by older patients with a low chance of survival. However, the surge never happened. Instead, the elderly were denied access to unused facilities. “These guidelines have too often resulted in older patients being denied treatment, even when hospitals were operating below capacity,” according to critics who spoke to the WSJ. “Occupancy in the country’s intensive-care units, for instance, has yet to exceed 80%, according to government officials.”
“The ICU wards were comparatively empty,” said Dr Cecilia Söderberg-Nauclér, of Karolinska University Hospital. “Elderly people were not taken to hospitals—they are given sedatives but not oxygen or basic care.”
Yngve Gustafsson, a geriatrics specialist at Umea University, told the BMJ that the proportion of older people in respiratory care nationally was lower than at the same time a year before, even though people over 70 were the worst affected by Covid-19. He, too, was aghast at the practice of doctors prescribing a “palliative cocktail” for sick older people in care homes over the telephone.
“Older people are routinely being given morphine and midazolam, which are respiratory-inhibiting,” he told the Svenska Dagbladet newspaper, “It’s active euthanasia, to say the least.”
Even the government has admitted that the strategy was misguided. "We have to admit that when it comes to elderly care and the spread of infection, that has not worked," Prime Minister Stefan Löfven told Swedish newspaper The Aftonbladet Daily. "Too many old people have died here."
Michael Cook is editor of BioEdge
Protests in Portland / Tito Texidor III on Unsplash
In the wake of riots after the death of George Floyd, the Minneapolis City Council has decided to “defund” its police department. Although what this means is far from clear, it is clearly a popular response to the problem of police brutality against African-Americans.
Not all African-Americans back the idea, of course. Economist Glenn Loury, for instance, says, “We need the cops. Cultivating a sensibility in our people of distrust and contempt for the cops is self-destructive. It’s wrongheaded.”
However, writing in the blog of the American Journal of Bioethics, Nicole Martinez-Martin argues that defunding American police departments should be an issue for the bioethics community.
Prioritizing police over public investment in children, education, transportation and health services raises issues of health equity and distributing justice. Reviewing city budgets drives home that choices are being made to direct money away from a social safety net for communities in favor of policing. Even public services like parks and recreation, which may not seem to serve immediate public health goals, do have an impact on the health of Black communities, considering the role of green spaces (which are often lacking in communities of color in U.S. cities) and children’s after-school and summer programs in reducing stress levels, and improving education skills and overall mental health. Overzealous policing practices in Black communities contributes also contribute directly and indirectly to health disparities.
She concludes that “Bioethicists can contribute to the public discourse regarding defunding efforts – explaining the critical need to reallocate funding away from the police and towards providing social workers, mental health counselors, nurses (and so on) to serve and protect the health of Black communities.”
Michael Cook is editor of BioEdge
Stephen Hsu / Michigan State University
Away from the main battlegrounds of the war on racism and on the unresolved legacy of slavery in the United States, there are bitter skirmishes over eugenics.
This week Michigan State University's senior vice president of research and innovation Stephen Hsu walked the plank after vehement criticism of his views on inherited IQ. He will remain as a tenured professor of theoretical physics.
“I believe this is what is best for our university to continue our progress forward," MSU President Samuel Stanley Jr explained. "The exchange of ideas is essential to higher education, and I fully support our faculty and their academic freedom to address the most difficult and controversial issues. But when senior administrators at MSU choose to speak out on any issue, they are viewed as speaking for the university as a whole. Their statements should not leave any room for doubt about their, or our, commitment to the success of faculty, staff and students.”
The controversy has become so heated that it is difficult to assess what it is all about. However, Dr Hsu has worked with BGI, a Chinese genome-sequencing company which is trying to market genome-sequencing for parents who want babies with high IQs.
In 2017, he co-founded a company called Genomic Prediction, which provides advanced genetic testing for IVF. According to its website its technology identifies “candidate embryos for implantation which are genetically normal” – screening for Down syndrome, for instance, which no one at MSU objected to.
What was controversial was Hsu’s suggestion that his company might be able to spot embryos with genes that make a high IQ more likely.
He has also defended the notion that people with higher intelligence are more useful to society. "If you study the history of science or technology, you're going to inevitably come to the conclusion that it's people who are of above average ability who make these breakthroughs and generate a disproportionate amount of value for humanity," he told the Lansing State Journal in 2012.
Petitions for and against Hsu circulated on the internet. Harvard’s Professor Steven Pinker and about 1500 others argued that
The charges of racism and sexism against Dr. Hsu are unequivocally false and the purported evidence supporting these charges ranges from innuendo and rumor to outright lies. We highlight that there is zero concrete evidence that Hsu has performed his duties as VP in an unfair or biased manner. Therefore, removing Hsu from his post as VP would be to capitulate to rumor and character assassination.
But, in the wake of the Black Lives Matter protests and his association with eugenics, Hsu was doomed. The #ShutDownSTEM and #ShutDownAcademia movement was influential on the MSU campus and its activists appear to have forced his resignation. (It argues that “Academia and STEM are global endeavors that sustain a racist system, where Black people are murdered.”)
Michael Cook is editor of BioEdge
Since last November, Europe's largest anatomy centre at the medical school of the University of Paris-Descartes has been closed because of serious deficiencies in the state of preservation of cadavers, dilapidated premises and suspicions that the bodies are being commodified.
In a report handed down recently, the General Inspectorate of Social Affairs and the Inspectorate of Education, Sport and Research found that "Serious ethical breaches have persisted for several years in one of our most prestigious faculties. The responsibility of the University of Paris-Descartes in the serious errors that its body donation centre (CDC) is experiencing has been clearly established.”
Moreover, it appears that "downstream users may have been able to engage in a lucrative activity within the CDC” -- in other words, commodification of body parts.
The report lists several reasons for this scandal: confused responsibilities, power struggles, the absence of a regulatory body, and a need for funding.
The police are looking into the matter, as well.
The scandal came to light in November in a searing article in L’Express. It found that the bodies of "thousands of people" who donated their bodies to science were being kept in "indecent conditions” for decades. "Bodies were left to rot, eaten by mice, to the point where some had to be incinerated without being dissected. Bodies piled on top of each other, without any dignity and contrary to any ethical rule."
It appears that the problems of the CDC are so deeply entrenched that it will not re-open for another six months. The inspectorates found that a national bioethical framework is needed for body donation.
"The conclusions of the report confirm that legislative intervention is necessary to clarify the legal and ethical framework for body donations to science and to allow the continuation of training and research activities," said Frédérique Vidal, Minister of Higher Education, Research and Innovation.
Michael Cook is editor of BioEdge
Last week the Italian parliament passed a bill aimed at boosting the country’s low birth rate by supporting parents.
"We have approved the Family Act to support parenting, combat the falling birth rate, encourage the growth of children and young people, and the help parents reconcile of family life with work, especially for women," Premier Giuseppe Conte explained.
Italy has had declining fertility for decades. There were about 464,000 births in 2018 – the lowest on record.
Some experts have speculated that Italy’s older population – due to low birth rates and rising life expectancy – is part of the explanation for the terrible toll of the Covid-19 pandemic in the northern regions of the country. The median age is now 45.9, compared to the European median of 42.8.
The demographic crisis is thought to be both a symptom and a cause of Italy's chronically stagnant economy.
The new law provides a universal monthly allowance for children to be paid from the seventh month of pregnancy until a child turns 18, longer paternity leave, salary supplements for mothers returning to work, and increasing funding for childcare.
Michael Cook is editor of BioEdge
Euthanasia and physician assisted suicide are now legal in dozens of jurisdictions around the world. Yet many people who want to end their lives do not meet the strict eligibility criteria outlined in euthanasia and assisted suicide legislation.
In light of this, medical ethicists have become increasingly interested in what is known as Voluntarily Stopping Eating and Drinking (VSED). VSED refers to “an action of a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention to hasten death because unacceptable suffering persists”. Patients who opt for VSED often receive palliative care from a medical professional as they die. Some commentators have describe VSED as a legal alternative to euthanasia for patients who are suffering unbearably but who are not terminally ill or who for some other reason do not meet relevant eligibility criteria for assistance in dying.
VSED is becoming increasingly common and accepted in some jurisdictions. Indeed, two articles have recently been published in medical journals offering clinical and ethical guidance to clinicians who have a patient seeking VSED.
In an review article in the Annals of Palliative Medicine, three researchers from Lancaster University claim that VSED may in fact “be more common than physician-assisted forms of dying simply because it falls beneath the level of legal scrutiny”. The authors suggest that VSED is legally permissible in countries such as the United States, the UK and Australia. In the United States, they note that “little relevant legal precedent has been set, either related to patients undertaking it or clinicians aiding patients in their VSED effort”. Some states explicitly permit VSED in at least some circumstances. A law passed in Nevada in May 2019, for example, allows individuals to create an advance directive for dementia, including the ability to specify that care providers should stop administering food and fluid by mouth.
Handling requests for VSED, however, can be complicated. In a recent article in the Medical Journal of Australia, three Victorian palliative care doctors discuss a case of a 71-year-old man who suffered a massive stroke that resulted in paralysis and severe cognitive impairment. The man required feeding and hydration by medical staff, though there was hope that he could recover his mobility. The man had an Advance Care Directive, however, stating that all care to be discontinued if he found himself in a dependent state. In light of this, his medical team ceased medications and no longer provided food and hydration, despite the fact that the man appeared to accept food and fluids and was capable of making a partial recovery. He died four days after medical care was withdrawn.
Some authors have attempted to distinguish VSED from physician assisted suicide. Legal scholars Thaddeus Pope and Lindsey Anderson, for example, argued that VSED is not a form of assisted suicide as it does not involve the administration or dispensation of a lethal medication by a healthcare professional. Rather, “the patient’s own biology...causes the death”. Lynn Jansen and Daniel Sulmasy, however, take a more cautious approach. They state that it is permissible for a physician to support a patient’s choice to refuse treatment, including nutrition and hydration, where such care is futile. But they believe that many cases of VSED amount to suicide, particularly where a patient is not terminally ill. Physicians, therefore, should not recommend VSED as an option to patients.