The Ethics of Curtailing Paediatric Services in the Face of the COVID-19 Pandemic
As of 12th September 2020, the novel coronavirus pandemic has brought unprecedented change to the lives of those in 213 countries and territories (1). There is currently no effective vaccine and very little treatment for the disease (2), and the case fatality rate in the UK is estimated to be 11.5% (3). Those most at risk include individuals over 70 years old and those with underlying comorbidities, with men being at higher risk than women (4). Currently, there have been a total of 41,614 deaths as a result of COVID-19 registered in the UK (5).
Many key services are operating under tremendous pressure and amongst these are healthcare workers. Staff are being diverted into new, unfamiliar areas of work, and are often being pushed beyond their ordinary limits of expertise or even competence. Final year medical students have been fast-tracked to assume roles on the front-line as interim FY1s, and retired doctors are returning to practice (6).
The pandemic is unpredictable and brings with it many challenges. It is, by nature fast-moving and of uncertain duration. Already-limited healthcare resources are becoming increasingly stretched. Delivering healthcare to its previous standard will be undoubtedly challenging, and many ethical considerations will be called into question by doctors aiming to provide safe and ethical care. Amongst these professional challenges are likely to be difficult decisions surrounding prioritisation of patient care and triage, as well as the re-allocation of resources. As the pandemic develops and services are put under greater pressure, decisions surrounding the allocation of treatment to individual patients will fall to individual healthcare providers.
This article discusses how the postponement of paediatric cardiac services and re-allocation of resources to COVID-19 patients relates to the principles of medical ethics.
Congenital Heart Disease
The bulk of the surgical workload in paediatric cardiology is congenital heart disease (CHD) (7). CHD is one of the major categories of illness that, if successfully treated, can substantially improve quality of life. Modern cardiac care means that, ultimately, death is prevented in children and with sufficient ongoing care and transition to adult cardiac services, individuals can lead relatively typical lives.
CHD can be defined as a problem with the structure of the heart present at birth that disrupts its normal function and that can involve the septae, valves, and main arteries and veins of the heart. It is one of the most common types of birth defect, affecting up to 8 in every 1,000 babies born in the UK (8). With the prevalence increasing, it is estimated that there are approximately 3,000 million people worldwide with CHD, most probably due to the increasing survival rates and advances in treatment (9).
Congenital heart defects include but are not limited to the following: aortic stenosis, atrial septal defects, coarctation of the aorta, complete and partial atrioventricular septal defects, hypoplastic left heart, patent ductus arteriosus, tetralogy of Fallot, and transposition of the great arteries (10).
Individuals with severe CHD often require specialist surgical treatment in childhood and regular monitoring of heart function throughout their adult lives. Treatments range from medical (rate control drugs, rhythm control drugs and diuretics) to catheter intervention, open surgical repair and cardiac transplantation.
Statistics from the National Institute for Cardiovascular Outcomes Research (NICOR) show that in 2017 in the UK, 8,780 surgical and catheter procedures were carried out on children under the age of 16 with CHD11. The majority of these were surgical procedures with a 30-day survival rate of 98% (11). This was a 37% increase in cases from the year 2000, and the trend continues to increase (12).
Redistribution of Services
On 17th March 2020, NHS England announced the suspension of all elective non-urgent surgery beginning on 15th April and continuing for at least three months, with the discretion for hospitals to act earlier if needed. Similar measures have been taken in Scotland. Emergency admissions, cancer treatment and other urgent care continues as normal. This action was taken with a view of freeing up tens of thousands of beds for COVID-19 patients.
Specific to paediatrics, it has been recommended that if staffing is sufficient, trusts redeploy their Foundation Year doctors (FiY1, FY1 and FY2s) and specialty registrars in general practice (GPSTs) from paediatrics to COVID-19 services (6). The theory underpinning this is that junior medical and nursing staff have significantly more transferable skills than their more specialised superiors. Surgical trainees (CT1/2 or ST1/2) are also to be transferred from paediatrics, with surgical registrars and consultants remaining. Most anaesthetists, including all anaesthetic registrars, are to work in critical care, with limited numbers staying behind for the surgical services still operating.
Current clinical guidance states that “the elective component of our [paediatric] work may be curtailed, and resources diverted to areas of greater need. However, non-elective patients will continue to need high quality care and we need to ensure that they receive the care that is appropriate” (13).
In 2015, of all paediatric cardiac surgeries performed in the UK, 74% were elective (14). Keeping only emergency services operational is likely to have massive implications for both the short-term and long-term care of these patients.
A 2016 report reviewing children’s cardiac services in Bristol found that delays of 2-4 days in elective surgeries for reasons such as availability of surgeons, theatres, cardiologists and laboratory resources caused great distress to children and their families. A death evaluated in the review was that of a child whose elective catheterisation was cancelled, and who subsequently died outside of hospital before the re-scheduled procedure could take place (15). Whilst one case cannot be generalised upon, it is important to acknowledge the serious risks posed to the wellbeing of patients to whom adequate cardiac care is still vital, even in the midst of a pandemic.
A Background on Medical Ethics
Generally, it is accepted that for a medical practice to be ethical it must respect all of the following principles: autonomy, beneficence, non-maleficence and justice, termed the “four pillars” of medical ethics.
Autonomy, broken down into autos, meaning “self” and nomos, meaning “rule”, refers to the rights of an individual to self-determination. The importance of autonomy in healthcare has shifted over time alongside changes in social values and rejection of traditional paternalistic attitudes. In practice, autonomy can be expressed as the right of competent adults to make decisions about their own treatment. A fundamental aspect of this is the requirement for informed consent before an investigation or treatment.
The term beneficence refers to actions that promote the well-being of another. Beneficence is arguably the fundamental principle of medical ethics in that practitioners endeavour to heal their patients. Promoting the course of action that is believed to be in the best interests of the patient can be complex when, for example, there are a number of treatments which would benefit a patient, but each to differing extents.
The phrase primum non nocere, meaning “first (or above all), do no harm”, embodies the concept of non-maleficence. Non-maleficence means not allowing patients to come to harm either through action or through neglect of action. Considering the risks associated with an intervention or non-intervention can therefore act as a threshold for treatment. Non-maleficence is also considered by many as the core principle of medical ethics in that, primarily, one should make sure they do not harm a patient whilst endeavouring to help them.
Lastly, justice concerns whether an action is compatible with the law and the rights of an individual, and whether it is fair and balanced from a social perspective. In medical practice, the principle of justice is most often raised in relation to fair allocation of limited resources. This is especially true in universal healthcare systems such as the NHS where, for example, decisions must sometimes be made on which patients to treat over others.
At the forefront of ethical issues resulting from the current pandemic is the fair distribution of scarce medical resources. Tension between the health of the individual and the health of populations has always prompted ethical discussion, and in a time of a global pandemic it is especially relevant.
An “ethical framework” produced by the BMA offers guidelines to medical professionals faced with decisions concerning resource allocation. It states that, should they be required to do so, it is essential that doctors make decisions that are:
• “reasonable in the circumstances
• based on the best available clinical data and opinion
• based on coherent ethical principles and reasoning
• agreed on in advance where practicable, while recognising that decisions may need to be rapidly revised in changing circumstances
• consistent between different professionals as far as possible
• communicated openly and transparently
• subject to modification and review as the situation develops” (4)
It would be generally accepted that, in times such as these, the focus must move from concern for the individual towards concern for all, thus shifting the ethical tone from individualised patient-centred care, to promoting the good of the many. This viewpoint, although arguably the only practicable option currently, stands to pose increased risk to countless individuals.
Paediatric cardiology patients whose elective surgeries have been cancelled are placed at a higher risk of complications and increased mortality. How then, can the value of one life be classed as more important than another? This dispute can be described in the concept of “the cash value of life”, as discussed in Tony Hope’s book “A Very Short Introduction to Medical Ethics” (16), with the question posed being, “how much money should a civilised society be prepared to spend in order to save the life of one person?” Or put more simply, “what is the cash value of human life?” Although this question is unsettling to consider, there are situations in medical practice where reflecting on it will save lives. The answers we give and act upon will affect the quality and the duration of thousands of people’s lives.
How we weigh the importance of improving quality of life compared to extending its duration is a relatively complex problem facing those making decisions in healthcare. In current circumstances, healthcare staff can either remain stationed in paediatric services and continue delivering life-prolonging treatment to those patients, who live on average 15 years longer than they would have without the treatment, or be diverted to COVID-19 wards where the increased staff availability can ensure the administration of care that will improve the quality of life of COVID-19 patients. This then begs the question, in patients whose remaining years are already limited, should decisions be made based on improving quality of life or extending life years?
What seems like a good approach to making these decisions is to say that there is no good reason to prefer one person’s year of life over another’s. In each case, people would stand to die prematurely without any treatment, and in each case the treatment improves their quality of life. Therefore, it would be proposed that we should spend money in order to “buy” as many life years as possible, and in doing so, treat everyone fairly. One year of life is being valued equally, regardless of whose life it is.
There is, however, a problem with this approach, which has been termed the “distribution problem” (16). When considering which resources can “buy” the most years of life, it must be taken into account not only the total number of life years gained, but the way in which those years are distributed between individuals. This then calls into question whether, for example, it would be more beneficial to treat ten COVID-19 patients in critical care, or to perform an open heart transplant on one child with CHD. Theoretically, the COVID-19 patients would stand to gain approximately five extra years of life, totalling to 50 years gained, and the cardiology patient would gain approximately 15 years of life. If the interventions are assumed to be equitable in cost, the likely answer would be to favour treating the ten COVID-19 patients. This is referred to as the “maximisation view”. Those who reject the maximisation view argue that there is more value in helping fewer people, where each gain more years of life, compared to helping a larger number of people who gain relatively less years of life each.
Using resources to maximise total number of life years is a way in which no healthcare system in the world behaves. In practice, healthcare systems operate on the “rule of rescue” in situations where there is an identified person whose life is at risk. Essentially, the rule of rescue argues that it is justified to spend more money per life year gained in situations where an intervention exists that has a good chance of saving a person’s life, as opposed to one where we cannot identify who has been helped (16). For example, the NHS provides renal dialysis at costs of over £50,000 per life year gained (the “rescue”), whilst it provides statins only for those with very high cholesterol levels, at a cost of £20,000 per life year gained (16). Those with slightly raised cholesterol who would also benefit do not receive statin treatment.
The risk of premature death, as in many children with CHD, is considered very significant, whereas death in an elderly patient with multiple comorbidities is viewed differently. The majority of COVID-19 patients in critical care are aged between 75 and 84 (5). Is it ethically just then, to divert services from children who stand to gain many more years of life from cardiac interventions to COVID-19 efforts, to extend the lives of elderly patients who stand to gain significantly less? Opting for interventions that increase the total number of life years gained would favour the maximisation view which is what is happening currently. However, the rule of rescue conflicts with this, stating that, if there is a likelihood of success of intervention, more money should be spent on a single individual, significantly changing the narrative of their lives.
It would seem that, despite the appeal of the rule of rescue in paediatric cardiology cases, decisions should be made that overall maximise the number of life years gained amongst patients. Considering the “maximisation view”, simultaneously with the “rule of rescue” offers an ethically-balanced approach to current circumstances. It remains questionable whether it would be right for a healthcare system to let more individuals die to save fewer.
Beneficence and Non-Maleficence
Beneficence and non-maleficence are closely-related in medical practice. A single action may bring about both a beneficial and detrimental effect to a patient, known as the “double effect”. For example, when considering the use of morphine in terminally ill patients, on one hand we are relieving the patient’s pain and suffering, but on the other hand we are inflicting harm by inducing respiratory depression and ultimately hastening death. However, in the context of the double effect and medical ethics, we should strive for the least harm possible while aiming for a beneficial outcome in any patient.
Screening for medical conditions is performed in order to detect medical conditions at an early stage and perform necessary intervention to treat the condition. Screening is relevant to beneficence as it provides the opportunity to better a patient’s health and wellbeing by preventing disease. It is also relevant to non-maleficence as neglecting to perform appropriate screening can allow diseases to progress undetected, therefore allowing patients to come to harm.
Antenatal diagnosis delivered through the NHS Foetal Anomaly Screening Programme is a way in which CHD can be identified early in children and help them to receive the appropriate treatment in infancy (17). The proportion of infants in the UK undergoing procedures following successful antenatal detection of specific severe heart malformations - hypoplastic left heart syndrome and transposition of the great arteries - were 93% and 75.8% respectively (10). Failure to recognise and promptly treat major CHD is associated with increased morbidity and mortality rates (11).
Complications of CHD include developmental delays such as delays in walking and talking, and learning difficulties such as impaired memory, low attention span, difficulty concentrating and poor impulse control. All of these are thought to be caused by poor oxygenation of the brain during early life (18) and have the potential to significantly affect a child’s behaviour and ability to interact socially later in life. Children with CHD are also at a higher risk of developing lower respiratory tract infections, endocarditis, pulmonary hypertension, arrhythmias, heart failure, embolic disease (pulmonary embolism/stroke) and sudden cardiac death.
The early identification of CHD, along with appropriate treatment and monitoring, can eliminate complications and ultimately mortality. In light of the current pandemic, much of this diagnostic activity has been curtailed, potentially having catastrophic effects on the lives of children with heart conditions.
Currently, although 20-week scans are still being performed, the Royal College of Obstetricians and Gynaecologists has advised that pregnant women should, if possible, attend appointments alone (19). Considering that the screening is still going ahead without elective surgeries being performed, it could be argued that the screening is essentially nullified in that, following diagnosis, unless the case is classed as emergency, no surgical treatment will be provided until services return to normal. Is diagnosing CHD in an unborn child, and offering no certainty of a treatment plan doing more harm than good to the child and their parents? NHS Outcomes for Paediatric Congenital Heart Disease (2018) stated that the aims for patients with CHD were as follows:
“Domain 1- Preventing people from dying prematurely.
Domain 2- Enhancing quality of life for people with long-term conditions.
Domain 3- Helping people recover from episodes of ill health or following injury.
Domain 4- Ensuring people have a positive experience of care.
Doman 5- Treating and caring for people in a safe environment and protecting them from avoidable harm.” (7)
CHD screening in current times can lead to a conflict between beneficence and non-maleficence. Performing screening would conflict particularly with domains one, two, and five detailed above. The screening in this case aims to benefit the health of the child and “do good” for patients, however, by having little intervention to offer in the current climate, the screening can potentially “do harm” to the parents of the children. Nevertheless, it would seem that increasing parental distress can be accepted in this case as the early diagnosis following screening allows for planning of elective treatment when resources are made available again.
Lastly, when it comes to the ethics of decision-making during the COVID-19 pandemic, autonomy is less relevant. Decisions regarding treatment are most often made by parents or legal carers of children as opposed to the child themselves, with some patients under the age of sixteen being deemed to have the capacity to give consent.
The right to self-determination also has little relevance to whether postponing paediatric cardiac services is ethically-sound. Although those with capacity to give consent hold the ultimate decision-making power for their treatment, they do not hold an entitlement to receive treatment that is not actually being offered. Therefore, during this time, as long as decisions are made in the best interests of the patients, not offering treatment such as elective surgery does not conflict with their rights or autonomy.
To conclude, there are conflicting views on whether re-allocating resources from both diagnostic and interventional paediatric cardiac services to the care of COVID-19 patients is ethical, and in particular whether it respects the principles of beneficence, non-maleficence and justice.
It is unquestionable that the cancellation of elective procedures poses an absolute risk to patients. Paediatric staffing is significantly reduced, with “bare bones” services being run. There is evidence that delaying cardiac procedures in children increases complications and mortality. Also called into question is the matter of whether providing screening services for foetal cardiac abnormalities is just, considering that available treatments postnatally are likely to be limited and delayed.
Concerning distribution of resources, it would seem that considering the “maximisation view”, outlined by Tony Hope, simultaneously with the “rule of rescue” is an ethically-balanced way of approaching this unusual and unique set of circumstances. Decisions should be made based on the individual circumstances of patients and separate health boards.
Ultimately, both paediatric cardiology patients and COVID-19 patients face a threat of premature death and there is no ethically-justified reason to value the life of one person over another. It is vitally important not to ignore our human sympathy and moral reasoning in an attempt to adhere to steadfast rules of decision-making. Instead, we must remain aware of the sadness of lives cut short and relatives bereaved because we did not provide treatment for some patients. Deaths are not less significant because they maximise the number of lives saved elsewhere. All losses of life are real people and all friends and family left behind mourn in the same way.
“…and there are no more surgeons, urologists, orthopaedists, we are only doctors who suddenly become part of a single team to face this tsunami that has overwhelmed us.”
Dr Daniele Macchine, Bergamo, Italy, 9th March 2020 (20)
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