In normal times, healthcare resources are allocated on the basis of need. Those in most need of care go to the front of the queue. Clinicians are used to making difficult decisions about who gets which treatment – but these are not usual times. The COVID-19 pandemic raises the spectre of doctors having to decide which equally critically-ill patients are offered potentially life-saving admission to intensive care, or ventilation, and which go without.
If all goes well and cases increase slowly enough to prevent the healthcare system from becoming overwhelmed, there may be sufficient equipment and care to go around. But the experience in Italy and Spain suggests that may not be the case. Previously unthinkable discussions need to take place now, to agree on how these decisions should be made. A different ethical framework is required.
In 2007, the UK government produced national guidance for pandemic preparedness, which was updated in 2017. The guidance includes an ethical framework, which states: "Equal concern and respect is the fundamental principle." Importantly, it says this means "everyone matters equally – but this does not mean that everyone is treated the same".
Professional organisations including the British Medical Association (BMA) and Royal College of Physicians (RCP) have also put out guidance for their members.
The BMA guidance says: "In dangerous pandemics the ethical balance of all doctors and health care workers must shift towards the utilitarian objective of equitable concern for all – while maintaining respect for all as ‘ends in themselves’."
The RCP guidance, which is supported by many of the other royal colleges including the Royal College of General Practitioners and the Royal College of Nursing, says that fairness is the best way to understand the ethical problems that clinicians are likely to encounter. "The principal values that inform this guidance are that any guidance should be accountable, inclusive, transparent, reasonable and responsive," they write.
Why Do Doctors Need Guidance?
Anthony Wrigley, professor of ethics at Keele University, says "One of the most important things with having a clear set of guidelines is consistency… consistency is a vital component of justice [because] otherwise you’re not being fair – you are giving different responses and different outcomes potentially to people who are presenting with similar or the same levels of need or requests."
Clarity is another key aspect, he says. "For a system to be seen as just or fair people need to know the basis of it – how these decisions are being arrived at." People might disagree with the system, because there are many interpretations of what is just, but "what you want is to show you have a position and it is properly founded on entirely reasonable ethical principles".
He said he had spoken to doctors preparing for decision making in the pandemic who "desperately want some assistance with this".
"We want to be as sure as possible we are doing the right thing. Otherwise you would internalise this [and worry] that your decision was poor or could have been better and people have died that would otherwise have lived as a result of that. That shows the importance of having a properly justifiable ethical basis here. Because if you’ve got that to fall back on, that’s what justifies [you] making those decisions; that does absorb some of the difficulty you would otherwise face."
What is Fairness?
The concept that scarce resources should be distributed fairly is one few people would disagree with. However, the question of what fair looks like is far more fraught.
Prof Wrigley says: "A fascinating aspect of public health crises is that they tend to default to very particular views about what fairness is, or what fair means of prioritising people in these crisis situations actually amounts to; which is ‘OK, let’s maximise the outcomes.’"
The next question is which outcomes we want to maximise. "The one that tends to be fallen back on is number of lives saved. Saving lives is a basic moral good and we can agree on that.
"And if we filter everything back through that and we are consistent with that and our approach for allocating and prioritising constantly justifies everything through that, then we’ve automatically established a coherent moral system," he says.
Saving the maximum number of lives quickly leads to prioritisation of the people who are most likely to benefit from scare resources, however. That means people who are less likely to survive treatment – perhaps because of frailty, or co-morbidity - would be given lower priority for treatment than people who are more likely to survive.
In the case of COVID-19, younger people and those without co-morbidities may be more likely to survive invasive and aggressive treatment such as ventilation.
Prof Wrigley says it is important to be clear that this does not mean prioritising younger people over older people because they are more valuable, but that people more likely to benefit are prioritised over those less likely to benefit, in order to maximise the number of lives saved.
"Prioritisation is actually consistent with rationalising and this is why so important to get that embedded, because otherwise people will say you are creating value judgements about the worth of individuals. But you’re not. What you’re doing is saying we’ve all agreed on this as an underlying basis and this is the best way of achieving it.
"It’s incidental but it happens to turn out that young people are more likely to survive the intervention from ventilation. It could [theoretically] be the virus was a different sort that attacked young people and was much more damaging and harmful to them, in which case you would be deprioritising young people."
A slightly different argument is that maximising lives saved is best done by maximising the number of years of life gained. In that case, providing treatment to a 10-year-old child might "save" 80 years of life, compared to one or two years for treating a 90-year-old.
The same reasoning of maximising lives saved could be applied to whether healthcare workers should be given priority treatment, said Professor Wrigley.
A recent editorial in the BMJ, written by a medical ethicist and a lawyer, says: "a hospital policy giving preferential treatment to healthcare workers if several patients are equally suitable for ICU treatment could be lawful if the rationale for such treatment was to:
Enable the return to clinical practice of the healthcare worker. ICU beds and equipment are of little use without sufficient staff to operate them, and
Maintain necessary morale to ensure the adequate delivery of healthcare in a pandemic situation"
The key thing, they write, is that the policy should be rooted in the need to "maximise the life-saving capacity of the NHS".
The guidance issued by the National Institute for Health and Care Excellence (NICE) about admission to critical care during the COVID-19 outbreak was challenged by threatened judicial review for being discriminatory. It was amended before the case reached court.
The guidance recommends the use of the clinical frailty score (CFS) as part of admission to hospital or to critical care. It suggests that a score of 5 or more ("mildly frail" at 5 through to "terminally ill" at 9) may mean people are less likely to benefit. The guidance says clinicians should: "Sensitively discuss a possible 'do not attempt cardiopulmonary resuscitation' decision with all adults with capacity and an assessment suggestive of increased frailty (for example, a CFS score of 5 or more)."
The original guidance was challenged on the basis that the CFS score discriminated against people with disabilities, learning difficulties or conditions such as autism, who might require assistance in activities of daily living (and so have a higher CFS score), but would be no less likely to benefit from critical care.
"In our view, the guidelines as originally drafted unlawfully discriminated against people with long-term disabilities, who are much more likely to be scored at 5 or above on the CFS than the general population, due to their care needs," said the law firm who challenged the guidance.
They add: "NICE agreed to amend the guideline so that CFS should not be used in younger people, people with stable long term disabilities, learning disabilities, autism or cerebral palsy. Instead, individualised assessment is recommended in all cases where the CFS is not appropriate."
This ability to challenge and amend guidance is a key part of a fair process, says Prof Wrigley.
"There will always be disagreements. The important thing is that the processes are seen to be open and clear in that way and also that we genuinely took a stance and did say this is the basis from which we are proceeding," he says.
He believes that guidance needs to come from "a Government-backed national body" such as NICE. "I think it should be top down in order to get as broad a reach as possible and as many people using the same system as possible."
He adds: "So we need ideally a single body that is given that task and [that] everybody can refer to, because that gives you that clarity and openness. It gives you revisability as well, so as things change that body can make appropriate revisions and there’s a point of contact to which people can address concerns, if it turns out that in practice things aren’t resolving in the way they expected."
No-one wants to have to make decisions to prioritise one patient over another when life-saving resources are limited. Yet it’s something that already happens to a certain degree in the NHS, for example in allocating organs for transplant.
Rather than abdicating the tough decisions to doctors to make in the heat of the moment, society as a whole has a duty to have that conversation now, to agree on a moral framework for those decisions. The coming weeks and months will be tough, but they will be tougher still if we do not put that framework in place first.
"It all goes back to fair process – an integral part of being fair is that we have the right process to see it through," says Professor Wrigley.