During the coronavirus pandemic, many ethical questions come to the fore. How should care services prioritise among severely ill patients? And how far should the rights of individuals be restricted? There are various ethical perspectives, think Anna T Höglund and Jessica Nihlén Fahlquist, researchers at the Centre for Research Ethics and Bioethics (CRB) in Uppsala.
The Swedish National Board of Health and Welfare (NBHW) recently issued new guidelines for ethical priorities in healthcare. These guidelines are to be used if COVID-19 patients become so numerous as to overwhelm intensive-care units.
“Healthcare services must always prioritise, but in this kind of extraordinary situation the pressure is particularly heavy, of course,” says Anna Höglund, Associate Professor of Ethics and Senior Lecturer in Nursing Ethics and Gender Studies, who is researching ethical prioritisation in healthcare.
Earlier guidelines from 1997 are based on three principles. The first is the principle of human dignity – that all human beings are of equal worth and therefore have the same rights. This is, moreover, reflected in the Swedish Health and Medical Services Act.
“While it says nothing about how to prioritise, it prohibits selection according to social status, gender or ethnicity, and solely because of high or low chronological age. You mustn’t choose not to treat anyone because their ailments are self-inflicted, either,” Höglund says.
Greatest need takes precedence
The second principle is that of needs and solidarity. Those who need care most should be given priority, while those whose needs are less pressing should wait in solidarity. This also includes taking particular care of society’s weaker members who cannot make their voices heard.
The third principle is a matter of cost-effective prioritisation and using healthcare resources where they are most beneficial.
With the advent of the present coronavirus pandemic, NBHW was tasked with developing guidelines to apply in this particular situation. The Board set up an expert group of philosophers and medically knowledgeable specialists, and the Swedish National Council on Medical Ethics was also brought in.
“The new guidelines are still based on the three current principles, but the aim is to clarify them and help those who have to make these difficult decisions. Three fairly clear priority groups have been added,” Höglund says.
Various priority groups
The first group, to be given top priority, comprises people with severe illnesses and an expected survival of more than 12 months. Group two is severely ill people whose expected survival is only 6–12 months, perhaps owing to underlying illnesses. The third group, to be given lowest priority, has a low probability of survival.
“If there’s going to be a shortage of beds in intensive care for everyone in need, the aim is to go by who has the greatest chance of survival. It’s a kind of cost-effective approach,” Höglund says.
This is support for decision makers, but what do you do if you have ten people belonging to group one and there are only five beds?
“Then the guidelines say you can go by biological age – not chronological age but, instead, based on how much the body and organs can withstand. A 70-year-old can be biologically older than a 75- or 80-year-old.”
Potentially beneficial treatment
This departs from the principle of human dignity, Höglund believes, but it is in line with the cost-effectiveness principle. You do not start a treatment unless you know that it can really do the patient good, she notes.
“When there are plenty of resources, you can also take action when you’re uncertain about the outcome, but when resources are as limited as they are now it’s a different situation. Then we really have to prioritise who is to get these beds.”
Do patients and relatives understand this?
“The guidelines say that when these decisions are made, it should be in consultation with the patient and close relatives. There’s a desire for transparency in these decisions. Efforts have been made to publicise the guidelines, so that citizens know the grounds for these decisions.”
Risk communication with ethical aspects
Jessica Nihlén Fahlquist, Senior Lecturer in Biomedical Ethics, is researching ethical perspectives on risk communication and public-health ethics. She is satisfied with risk communication during the coronavirus pandemic, since it also raises ethical aspects.
“Clearly, it’s a matter of ethical considerations and values – of vulnerable individuals’ right not to be harmed – and the focus has been on individual responsibility. What has emerged is that the right not to be harmed has to be balanced against people’s right to choose and decide for themselves on their lifestyle.”
The coronavirus pandemic is bringing public-health ethical questions to a head, she believes.
“Public health is pretty much based on what ethicists call a ‘utilitarian perspective’ – the view that aggregate happiness and, in this case, aggregate health are what have to be maximised. At the same time, there’s the perspective that it’s about human rights, in this case not causing harm.”
Weighing up various rights
Public health is largely a matter of balance between collective health and the rights and values of individuals, she believes.
“On the one hand, you have to balance people’s right to choose for themselves – travel to the Alps, move about outdoors, go shopping even if they’re 70 or whatever – and, on the other hand, the right of these vulnerable people not to be harmed. In the risk communication from the Government and its agencies, you can hear that these values actually are weighed up against one another.”
Höglund adds that there are connections with the ethical guidelines in the healthcare sector.
“Urging people to be responsible is largely about saving our common resources, so that we don’t have to make these really difficult ethical priority decisions. So the two issues are genuinely connected.”
Individual and public-health perspectives
When guidelines for prioritisation are developed, it is done from an individual perspective, not one of public health. Fundamentally, though, prioritisation issues are about what is best for society as a whole, Höglund thinks.
Nihlén Fahlquist adds: “The interesting thing is that there are two different arguments. One is that we must save society’s resources: collective benefit. The other is that we’ve got to protect vulnerable individuals, since everyone has a right not to be harmed. The arguments are linked, but there are two different ones working together here.”
The Centre for Research Ethics and Bioethics (CRB) is a university-wide centre that teaches ethics (primarily research ethics) in all three of Uppsala University’s disciplinary domains. CRB, located at the Department of Public Health and Caring Sciences, has worked closely with the healthcare system since its inception 20 years ago.
Ethics rounds and discussions
CRB workers have, for example, conducted ethics rounds at Uppsala University Hospital, advised staff on difficult ethical issues and had ethics discussions in clinical practice.
“Jointly with those who work in healthcare, we capture issues that are important to investigate in clinically based research. We’ve tried to pick up on issues that are relevant to the staff. What are the difficult judgements they face?” Höglund asks.
Her own research on ethical prioritisations in healthcare is one example that has become even more topical in connection with the new Swedish COVID-19 guidelines.
“These are terribly tough decisions for healthcare professionals to make, and there’s a risk of ethics-related stress. Then it can be important to have debriefing opportunities, maybe ethics discussions or monitoring of some kind. That’s the kind of research issue we’ve picked up on while working closely with healthcare staff.”
Training in tough ethical decisions
Nihlén Fahlquist is in charge of ethics teaching on the Medicine Programme, and sees that this study programme plays a key role in training prospective nurses and doctors in making difficult ethical decisions.
“If students on the Medicine and Nursing Programmes discuss cases in a stress-free environment, they practise their ability to analyse and see the ethical issues. And this, we hope, will help them in these difficult decisions they have to make.”