This is a blog about making medical choices – difficult, heart-breaking and appalling choices – arising as a result of the present pandemic. The emerging picture is of insufficient hospital beds, too few ICU beds and inadequate resources such as dialysis machines. This all adds up to the fact that the NHS will not be able to provide optimum care for all patients. So choices have to be made. That inevitably means that some patients will get sub-optimum care because their chances of benefiting from the resources available within an acceptable timeframe are lower than other patients.
There are, however, a group of doctors who have been quietly making these types of decisions for decades. These are the doctors who decide how to operate transplant lists. NHS Blood and Transplant operates the transplant lists. The NHSBT website states:
“We manage the NHS Organ Donor Register and National Transplant Register, which lets us fairly match donors to people who are waiting for a transplant. Thanks to our amazing donors, we were able to facilitate nearly 4,000 transplants in 2019/20. This is fantastic, but there is still a lot more to do. There are currently around 6,000 people on the UK Transplant Waiting List. Last year over 350 people died while waiting for a transplant”
Behind these statistics lies a series of agonising choices caused because the resources available – not money this time but kidneys, hearts and other organs – are insufficient to meet legitimate clinical demand. Patients are not let onto the transplant list in the first place unless they have a sufficiently good chance of securing long-term benefit from a transplant. Further, the rules about how a patient progresses at the transplant list and who is given urgent, priority status involve clinical urgency assessments and capacity to benefit assessments. The assumption must be that many of those who die whilst waiting could have been saved by being offered a transplant, but clinical decision-making give priority to others.
I recall a conversation with a respected transplant surgeon who explained that this process felt “amoral” and not “immoral”. There was, he explained, broad consensus amongst his professional peers about the appropriateness of an agreed set of rules, and a common professional understanding that no one should cheat the system to benefit their own patients. He rightly said they were not acting as “God” but nonetheless make decisions with a heavy heart which effectively gave continuing life to some and denied it to others, even though others had some capacity to benefit. Those difficult decision-making processes could only operate successfully because of that agreed professional consensus coalescing around a single set of decision-making rules.
As we go into the New Year with our hospitals full and with increasing demand from Covid-19 patients, more and more doctors are going to be required to take the same type of decisions as transplant surgeons. The key difference is that there is no commonly agreed set of rules. Some guidance was produced by the BMA Ethics Committee at the outset of the pandemic but, whilst it was generally welcomed, it produced a backlash from those who felt it was “too utilitarian”. The objectors did not write better rules; they simply objected to any rules which left people without treatment when they had the capacity to benefit. Those objections are fine in theory but hopeless in practice.
However, the real problem is that there has been silence from the government and NHS England about how these decisions should be made, presumably because the act of discussing this type of decision-making may undermine public confidence in the ability of the NHS to cope. As a result of this “vacuum of guidance”, no one can be accused of “playing the system” to advance the interests of a single patient against the majority because there is no clear and commonly accepted system in place which defines how this decision should be taken.
The lack of a clear set of procedural rules to guide doctors in making life-and-death decisions will inevitably lead to arbitrariness, inconsistency and injustice. Every patient and every relative will want the very best done for themselves or their loved ones. Where this is not possible, it seems unethical to require doctors to operate a life-and-death decision making process in a guidance-free vacuum.
The problem with an absence of guidance is that those who shout loudest in a language which is easiest to understand will inevitably be accorded priority. Those whose first language is not English or who do not have the educational or linguistic skills to challenge the doctors face potential unintentional but entirely foreseeable discrimination because they will be unable to make their case for priority in comparison to the well-educated, English-speaking articulate patient. The challenge for the medical profession is to ensure that the services available to an adult with learning disabilities and challenging behaviour who has contracted Covid-19 are the same as a banker, a lawyer or a nurse. That challenge would be far easier to manage if there was appropriate official guidance to assist in the decision-making process, just as there is with the same type of decisions involving transplants.
Ensuring equal access to public services for those with protected characteristics – those with other forms of disabilities such as the learning disabled, the elderly members of minority communities – is one of the underpinning principles of the Equality Act 2010. Without any form of operational rules which ensure consistency, it is hard to see how doctors will be protected against complaints of unintentional discrimination in the weeks and months ahead.
Declarations of Interest: David Lock is a member of the BMA Ethics Committee. This is a personal view; he is not writing on behalf of the committee. David Lock has also been called upon to provide legal advice to a variety of NHS organisations about the management of choices in the pandemic, their exposure to potential clinical negligence claims and the exposure of doctors and healthcare managers to criminal complaints.