Helen Turnham, Guy Thorburn and Dominic Wilkinson.
The COVID-19 pandemic has necessitated a total shut down of elective surgery within the NHS. In the forthcoming months there will be re-initiation of elective surgery but at significantly reduced capacity. The combination of pre-existing backlog, a protracted period of no surgery and an anticipated future period of substantially reduced operating capacity is likely to lead to marked delays in surgery and a rapidly growing list of patients requiring surgery.
How should patients currently waiting for surgery and those presenting with new pathologies be prioritised for surgery? Who should be operated on first and who might receive no surgery at all?
An example from our own experience is that of children and young people with Cleft Lip and Palate. In the main, patients do not require life-saving interventions, but do have need for a number of complex surgical interventions to optimise ‘well-being’ and life-chances. The ability of individuals to communicate with caregivers, teachers and peers depends upon a functioning palate. Timing of lip repair in babies can affect interaction with care givers and cognitive development. Health-related quality of life of adolescents can be greatly affected by facial appearance. In regions with no access to cleft surgery, those born with severe anomalies can live secluded and ostracised lives. This example has parallels with many other surgical and non-surgical interventions affected by the COVID-19 healthcare crisis.
Regardless of the health system we might live in, health professionals are familiar with the problem of scarce resources, for example availability of organs for donation or access to critical care facilities. There are existing ethical frameworks for allocating those scarce life-saving treatments. (Furthermore, there has been considerable attention to the potential need for rationing ventilators in the context of the pandemic).
In the current crisis, and for the foreseeable future, this problem will apply to many medical interventions. Previously routinely available treatments (like cleft lip and palate surgery) will also be significantly restricted. There is no simple scientific or medical answer to how to allocate these treatments. Depending upon “medical” criteria to determine which patients receive surgery is not value free: “responding to medical facts requires ethical values-based judgement.”
There are two different levels of prioritisation faced by clinical teams. Within surgical (or medical) specialties, there is a need to decide which patients should go first. Then there will be decisions about which specialty patient(s) take priority – for example, does the neurosurgical patient take precedence over the patient needing palate surgery? Here we will focus on prioritisation within a single clinical team.
Different prioritisation principles are considered when allocating scarce resources; healthcare-allocation systems weight these principles differently. Primary consideration might be paid to one or more principle of Treating persons equally versus Prioritising the worst off (Maximin) or Promoting social usefulness or Maximising total benefits (Utilitarianism).
In usual times, surgical procedures such as those offered to treat cleft lip and palate are usually allocated according to clinical need followed by a ‘first come, first served’ system. This respects the principle of treating persons as equal. When resources are not scarce and every patient in need of surgery has a reasonable chance of benefiting within a reasonable time frame this system is promoted as administratively easy and procedurally fair. Those who have already waited for a long period will be operated on relatively sooner.
However, not all patients will suffer equally from waiting. “First come, first served” fails to address those patients for whom waiting for a long time will result in much worse outcomes. It would also mean that some patients (currently higher on the list) receive surgery soon even though they could wait longer without significant hardship. Patients who have been referred recently may have no chance of surgery within a reasonable period. A lottery would be an alternative system that places emphasis on treating all persons as equal. In a lottery all patients on the waiting list have an equal chance of benefiting from sooner surgery. But this similarly fails to address the needs of patients who will suffer significant harm from waiting or identify those who could wait. “Treating people equally often fails to treat them as equals”
An alternative principle to adopt when allocating services is to identify patients who are worst off; this might be to consider those who are sickest or those who are youngest (perhaps facing the greatest developmental consequences of delayed surgery). There may be some patients who have significant co-morbidities, for whom surgery might be considered a priority. Other patients might be considered worse off for non-medical reasons. For example, the case of ‘looked after’ children who are already socially disadvantaged and have significantly impaired life chances. Those children might be affected to a greater degree by delays to lip surgery that affect their ability to bond with carers or delays to palate surgery delaying development of intelligible speech when they start primary school. An analogy might be made with the priority these children are given for school places.
Prioritising the worst off has some disadvantages. It might suggest giving priority to some children who are very badly off, but whose ability to benefit from surgery is limited. There are children with cleft lip and palate whose co-morbidities means their gains from surgery will be limited. For example, a child who is unlikely to be able to speak because they are dependent upon a life-long cuffed tracheostomy. It may be unreasonable, when treatment is scarce, to perform operations of marginal or uncertain benefit, even if the individual patient is badly off to begin with.
The principle of promoting social usefulness is of limited value for the particular problem of allocating patients to scarce cleft lip and palate surgeries. Traditionally the principle might be considered to justify prioritisation of persons with socially useful occupations to receive limited treatments during a pandemic. The vast majority of patients with cleft lip and/or palate will be expected to live long and fulfilling lives and, with treatment, equal opportunity to participate in socially useful occupations as those without cleft lip or palate. The principle fails to differentiate between large numbers of similar patients and is of limited usefulness to determine which cleft palate patient is prioritised in front of another. However, the principle could be relevant when distinguishing between patients requiring cleft surgeries compared to other surgical interventions. It may be reasonable to consider the impact of different surgery on a child’s ability to live and function independently.
This leads us to the final principle of utilitarianism or ‘maximising the good’. Patients with cleft lip and palate anomalies do not have urgent or emergency claims to surgical time but surgery offers important benefits in terms of life chances and wellbeing and thus a claim to limited services. Urgency must not always trump ability to benefit. Maximising good across society requires equal consideration of three principles; Urgency of surgery, potential to benefit from surgery and resource demand. Surgeries that are urgent but for whom patients might get limited benefit at great cost to the service (for example, length of procedure, need for intensive care support peri-operatively) should not necessarily have greater claim to limited surgical space than non-urgent procedures whose recipients have significant potential to benefit.
Rationing of scarce medical treatment is ethically complex, and requires consideration of competing values as well as (naturally) competing patients. We have described four prioritisation principles that might be considered when allocating scarce resources, such as surgeries for cleft lip and palate anomalies. No principle alone is adequate. Our approach locally has been to propose prioritisation include elements from different approaches, for example:
- High priority to urgent clinical needs (where surgery offers significant benefit and delay would be associated with significant harm). [Maximises benefit]
- Prioritise those patients who are badly off (so long as surgery offers a minimum threshold benefit) – this includes either medical or social/psychological factors causing the child to be badly off. [Priority to worst off]
- Deprioritise those patients who are happy (or whose parents are happy) to wait [Support patient autonomy]
- Consider operating on the remaining patients (whose needs are on a par) on a first-come-first-served basis [Equality/fairness]
We suggest that there should be a clear and transparent process for allocation devised by specialists in the surgical field, along with external input (for example from clinical ethics) according to the principles outlined above. It is important that the clinical team is open with parents or guardians about the limitations of the service at the current time and explains the process for deciding how surgery will be allocated, as well as offering a process for appeals where families believe that this process has not been followed.
Authors and affiliations:
Dr Helen Turnham, Consultant Paediatric Critical Care @HelenTurnham
Mr Guy Thorburn, Consultant Paediatric Plastic Surgeon
Professor Dominic Wilkinson, Professor of Medical Ethics, Consultant Neonatal Intensive Care @NeonatalEthics
Competing interests: None declared