Joe Brierley
Ethics
Paediatrics and child health, perhaps more than any other speciality, has recently been the focus of difficult decision-making. Children born months too early or living from infancy on machines are now commonplace. Newspapers carry stories about carers refusing evidence-based radiotherapy for their children’s brain tumours in favour of alternative therapies or about the historic and contemporary abuse of children by celebrities and politicians. Major changes in our laws and practice have followed scandals in which parents discovered that their deceased children’s organs had been retained without their knowledge – allegedly as part of a research study – and that children had died in heart centres where operative mortality was significantly greater than elsewhere.
What can ethics offer in all this? It is first useful to define the term. One of the simplest definitions is that ethics is the branch of philosophy that deals with matters of right and wrong, and therefore medical ethics is a branch of ethics that deals with matters of right or wrong in medicine. Ethics textbooks cannot escape some ancient Greeks and so two other definitions feature here:
An attempt to find out our chief end or highest good.
Aristotle
How we ought to live.
Socrates
The Socratic concept is especially worthy of reflection as it could be suggested that paediatric ethics could at one level be about how paediatricians ought to practise (live).
Healthcare professionals often ask whether a particular treatment or practice is ‘ethical.’ The answer being sought is whether the treatment or practice is morally acceptable – i.e. is it right? This is ultimately defined by society as a whole, through the values that are upheld as being important. For example, a society that regards equal distribution of resources as an important value will strive to develop a healthcare system that allows equal access to healthcare. Within such a society, any action that prevents access to healthcare on the grounds of wealth, gender, race, sexuality, etc., would be deemed unethical. In a different society, where healthcare is only provided on monetary payment, inequality in healthcare access may not be judged to be unethical.
In order to answer the question of whether an action is ethical or not, one needs to have an understanding of:
This chapter provides a brief introduction to commonly used moral theories. It looks at the ‘four principles’ approach to medical ethics, using this approach to apply moral theory to medical situations. It explores some common clinical scenarios within paediatrics and child health which pose ethical dilemmas. They illustrate the use of moral theories and ethical principles to provide guidance regarding appropriate action. There is rarely an answer that is completely black or white – however, this approach demonstrates how actions can be ethically justified. In the final part of the chapter, the issues surrounding medical research involving children are considered.
Moral theories
There are several moral theories that can be used to make ethical arguments. Those most often used in medical ethics are consequentialism, deontology, virtue ethics and feminist ethics.
Consequentialism
Consequentialism judges acts to be right or wrong according to the results/consequences produced. An act leading to a positive outcome is morally more acceptable than one that produces a negative outcome. According to critics of consequentialism no act is, therefore, non-permissible. Consequentialists can argue back that if abhorrent acts are allowed and generalized there would be less overall benefit to people.
A positive outcome depends on what value is being optimized, e.g. pleasure, happiness, wealth, etc. A hedonist will always act in such a way as to maximize pleasure over other values, such as, say, honesty. Often, in consequentialist arguments, a calculation needs to be made to determine the net benefit, taking into account the benefits and negative effects of any action. Utilitarianism, a form of consequentialism, aims to maximize the overall utility in the world that an action can bring about. The utilitarian ‘greatest happiness principle’ suggests that one should always act to provide the greatest happiness to the greatest number. Consequentialism is popular as it is practical. Logically, it is analogous to ‘evidence-based medicine’. It allows the application of judgement in the form of a calculation to justify any action – nothing is universally forbidden. Consequentialism, however, is not without drawbacks. Expensive therapies with low probabilities of success do not fare well against the utilitarian yardstick. For example, intensive care is resource hungry, with high levels of mortality (especially in adults) and morbidity. Public education programmes about chronic disease management, such as asthma and diabetes, in comparison may be more cost effective in reducing long-term morbidity and mortality and utilitarians would prioritize the latter over the former. However, if intensive care provided the only chance of survival for a critically ill child, would any parent favour the utilitarian argument? Furthermore, it is unclear how the utilitarian argument can be limited – closing hospitals in the UK or decreasing national spending on nuclear weapons and redistributing the savings to the lowest income countries in the world might arguably yield greater happiness for a greater number.
Deontology
Unlike the outcome-based approach of consequentialism, deontology provides a rule-based approach. Morality is based on the intentions of actions, not the consequences. Actions are therefore:
• Permissible – neither obligatory or forbidden, e.g. the treatment of ‘colic’ with gripe water
• Supererogatory – morally praiseworthy if performed, e.g. donating a kidney to a relative
• Forbidden – not permissible under any circumstances, e.g. actively killing a patient.
Immanuel Kant, the major proponent of deontology, formulated what is known as the categorical imperative – according to Kant, it is an absolute duty to act morally. If any action is immoral, then we ought not to perform it. The two formulations of the categorical imperative that are important in medical ethics are:
The doctrine of double effect is the converse of the above example. An action can be justified even if it causes serious harm, if the harm is a side effect of bringing about a good end. The use of high doses of opiates to alleviate the pain of a terminally ill patient could be deemed moral, even though it could lead to respiratory depression and death.
Virtue ethics
Unlike deontology and consequentialism, virtue ethics does not focus on acts per se, but on the character of the moral agent, i.e. the person morally responsible for the act. Having a given virtue predisposes a person to act in a certain way – for example, a generous person is likely to donate towards charity. Virtues are defined by the person’s actions, but also their attitudes and internal values. Therefore, actions are morally appropriate if they conform to a virtuous individual’s habits of valuing, assessing and acting according to the virtue in question. In other words, an action is honest if it is consistent with the actions of an honest individual.
It is worth noting, however, that individuals are unlikely to be able to always act according to a given virtue. Negative desires may be a result of circumstances and context. The virtuous will attempt to fight the negative desires and perform the right act accordingly. Virtue ethics therefore accepts the complexity of practical situations, which duty- or consequence-based theories may not.
Feminist ethics or ethics of care
This approach is often contrasted with other classic approaches in its communitarian, contextual and caring approach. Some have argued they are perfect for child health dilemmas (Brierley and Larcher 2011) as they focus less on individualistic rights-based solutions, but rather view the child in its true context as part of a family with parents, brothers and sisters, of a community with family and friends and of a society of other co-dependent people. However, there is a need to ensure the child is not merely considered as the property of its parents. The influential Gillick case clearly established that ‘parental rights are derived from parental duty…and…exist only so long as they are needed for the protection of…the child.’ (Gillick v West Norfolk and Wisbech Area Health Authority, 1985).
Indeed, for paediatricians, one also needs to clarify the law surrounding decision-making for children. (Further details can be found by reference to GMC and BMA guidance and healthcare law textbooks.) Parents or those with parental rights are privileged to make healthcare decisions (e.g. consent) for their children, as long as they are acting in that child’s best interests. If they are not, such as refusing radiotherapy for a treatable brain tumour, the courts will ensure treatment occurs.
Over the age of 18 years, children become autonomous adults and can decide for themselves. Treatment without consent constitutes the tort of battery – unless they can be shown to lack capacity. Young people between 16 and 18 years are presumed to be able to consent, but cannot refuse medical treatment held to be in their best interest. Their parents can consent, though clinicians would be wise to seek help from the courts before treating if the situation is not an emergency, and even then rapid decisions to treat have recently been made (An NHS Foundation Hospital v P, 2014).
It is possible that many involved in child health might consider the ethical aspects at variance from the stark legal situation, given attempts to introduce ‘assent taking’ from children un-/not yet able to consent in both research and clinical practice.
Although the decision in the Gillick case was limited to provision of contraceptive advice, Lord Justice Scarman’s reasoning has become influential to the extent that children deemed Gillick-competent can now consent to treatment at any age, though in reality such maturity is generally only attained over the age of 13 years. He stated:
As a matter of law, the parental right to determine whether or not the minor child below the age of 16 will have medical treatment terminates if and when the child achieves sufficient understanding and intelligence to understand fully what is proposed.
Lord Justice Scarman
Any paediatricians faced with ethical dilemmas involving young people must have a clear understanding of and the ability to test for both capacity and the child’s competence to consent to what is proposed. Certainly, one place where ethics and the law coalesce is in children of any age having a right to be involved in decision-making about their healthcare (Gillick v West Norfolk and Wisbech Area Health Authority, 1985).
The four principles of medical ethics
Perhaps the most influential concept in modern medical ethics, and not without its critics, is principlism. In the 1970s, Beauchamp and Childress formulated their four principles of biomedical ethics, which have become the dominant cornerstone of ethical consideration in healthcare practice. The principles are often used as a framework to deliberate on ethical questions about therapies. The four principles are:
i Respect for autonomy
Autonomy is the ability to self-govern. In order to possess autonomy, an individual must be able to have desires, be able to formulate options that can realize those desires and be able to select the most appropriate option. Autonomous actions should be intentional, fully understood and devoid of controlling influences. In order to exercise autonomy, a patient must be able to express the problem for which they wish to have treatment, understand the various treatment options and consent to the most appropriate option. Consequently, it would be unethical to treat a patient against their wishes, fail to present the available treatment options to them, or influence or disregard their consented option. For children, this might be the relative autonomy (if that can exist) of a Gillick-competent child, or the autonomy of parents to decide for their children – restricted by the need to act in the child’s best interests, however this might be determined.
ii Non-maleficence
The principle of non-maleficence is embodied in the maxim primum non nocere, or above all, do no harm. Harm is defined as an abrogation of one’s interests. Within medicine, this would include causing pain, death, incapacity, etc. However, ‘causing’ death may not always be against a patient’s interests; if a patient’s condition is unbearable to the point that they wish to die, then continuation of life-sustaining treatment may be both maleficent and disrespectful of their autonomy. Therefore, non-maleficence could be interpreted as not acting against a patient’s interests, and is the same for adults and children.
iii Beneficence
In addition to not acting against the patient’s interests, one of the ends of medicine is to act in the patient’s interests, by promoting their welfare. This is the principle of beneficence. Beyond the requirement to provide positive benefit, beneficence also encompasses utility, whereby benefits and risks are balanced to provide an overall positive result. An act of beneficence may therefore involve a reduction in risk to a patient, e.g. vaccination or thrombo-prophylaxis for children or adults.
iv Justice
The principle of justice involves the fair and consistent treatment of all people within a population. In medical ethics, the principle mainly refers to distributive justice, or the fair and equitable distribution of resources within a population. The fairness of distribution is based on specific principles, e.g. clinical need. The equity is based on treating equals equally, i.e. patients with the same degree of clinical need get the same degree of care irrespective of ability to pay, of religion, of racial group or indeed age.
The four principles are not independent of each other. For example, surgery is not performed on a patient who does not consent, even if he is unlikely to survive without it, out of respect for his autonomy – despite this meaning arguably not acting in a beneficent way. The four principles approach does not set a hierarchy for the principles when they come into conflict with each other, which has often been the focus of criticism. However, the principles aim to provide a framework for ethical deliberation. The emphasis on each principle will depend on the context. For example, in a society where autonomy is held in highest regard, respect for autonomy may overrule considerations of beneficence. Conversely, in societies where medicine has a more paternalistic identity, beneficence may take precedence over autonomy.
Case history
The extremely preterm infant
You are called as the neonatal registrar to talk to parents who have presented to the delivery suite. Juliet is a 38-year-old woman, who is 22+5 weeks pregnant with her third pregnancy. She has just had a leak of liquor, and her cervix is 4 cm dilated. She has two healthy children, 2 and 5 years old, with her husband George. You counsel the couple regarding the poor prognosis of babies born at 22 weeks. If Juliet delivers in the next few hours then the baby will not be considered viable. Even if he or she is born with a heartbeat, you will not resuscitate him/her. However, if the baby is born after 23 weeks, he/she will have a better chance of survival. They will still be at high risk of all the complications of extreme prematurity (sepsis, intraventricular haemorrhage, retinopathy of prematurity, bronchopulmonary dysplasia). You quantify the risks according to national and local audit figures. You offer to resuscitate the baby if born after 23 weeks, provided that Juliet and George agree to this.
Juliet and George feel that this is their last attempt at adding to their family. They have strong religious beliefs and are convinced that their baby will survive. They are unhappy with your decision not to resuscitate their baby if he/she is born in the next few hours. They want you to do everything to help their child survive.
Ethical dilemmas:
• Who should decide whether the baby should be resuscitated or not?
• What considerations should be taken into account?
• Should the parents’ age, social background or religion have an impact on the decision?
These are complex ethical questions without a right or wrong answer. However, the law may provide boundaries to the relevant ethical arguments. Therefore, the answers may be different in different countries.
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