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The case history given by Katumba-Lunyenya et al presents several ethical dilemmas.
The core moral principle of medicine is that professionals should act in the best interests of their patients This entails two sometimes conflicting duties:1
To protect the life and health of patients by providing treatments that maximise benefits and minimise harms
To respect a competent patient’s right to decide for themselves what should be done to them (respect for autonomy)
They should fulfil these duties justly and fairly and to an appropriate standard. It follows that professionals have a duty to obtain consent for treatment, respect confidentiality of personal information given to them by patients, and to consider the consequences of their actions on others under their care.2
Adults are free to determine their best interests irrespective of professional opinion, but children who lack the capacity to decide for themselves are not. Parents, in partnership with professionals, have an ethical duty and legal authority to make decisions on behalf of such children as the infant described, provided that they act in the child’s best interests. The case described clearly raises a number of ethical issues.
All medical treatment requires valid consent. To be ethically and legally valid, consent must be sufficiently informed and given freely by a person who is competent to do so.3 The information required is that which a reasonable patient, or in this case parent, might need to make a decision about the treatment in question. In practice, there may be difficulties in presenting complex information—for example, the need for antiretroviral therapy—to parents who may be overwhelmed by the birth of a sick preterm baby who requires intensive care. Parents, like this mother, may be preoccupied by their own healthcare problems and their impact on their own lives. The need to start treatment urgently may compromise voluntariness in that there may be little time for parents to reflect on information they have received and use it to make a decision. Moreover the extent to which parents in comparable situations are competent to make freely informed choices about treatments has been questioned.4
The issue of consent for antiretroviral therapy is particularly difficult because it involves information that the mother has but the father does not. Although treatment given in an emergency to save life does not require consent, it is difficult to argue that this is really the case for antiretroviral therapy in these circumstances. Although the mother’s consent alone would be lawful, deliberate exclusion of the father would neither be fair nor just and may have long term adverse consequences for the family, which may not be foreseeable. It would be good practice, and consistent with the professional duty of truth telling, to inform the father of his baby’s risk of HIV, but to do so is likely to breach the duty of confidentiality owed to the mother.
A key ethical issue in this case is raised by the duty to respect the mother’s confidentiality with respect to her HIV status. A general duty to respect confidentiality, irrespective of the consequences, stems from the duty to respect autonomy and individual liberty. Providing health care includes the implied promise that professionals will respect confidentiality as part of the clinician-patient relationship. Also implied is that professionals will share information among themselves for the purpose of providing the best health care for patients. In this case, it is clear that passing information to the neonatologists about maternal HIV status enables them to deliver the best possible care to the baby. But passing information to the father about the HIV status of the mother may have adverse and unpredictable consequences on their relationship and may lead to a breakdown in trust between the mother and professionals.
The traditional view on the duty to respect confidentiality does permit breaches to prevent serious harm to others.5 In this case the infant is certainly at risk of serious harm from transmission of infection, and so is the father, provided that he was not the source of the maternal infection. There are risks of harm in future pregnancies. However, in this view of confidentiality, the burden is on those who wish to breach it to show that there are sufficient grounds for doing so.
An alternative view, which is more in keeping with current concepts of family therapy and provision of health care by multiple teams, involves joint ownership of shared information by the family and the healthcare teams.6 In this model the mother can ask that information about her is not released to others, but only if she can show that the release of the information is likely to cause her harm. She may feel that disclosure will compromise her relationship with the father or that she might be blamed for the illness and death of her child. However, it would seem unjust that the father does not have the opportunity of counselling and testing whereas his wife and child do so. Giving information to the neonatal team enables them to give treatment intended to benefit the baby, but is unlikely to harm the mother. This approach underlines the essential fairness of disclosure in this unfortunate situation, but questions as to the level of harm that should prevent disclosure remain.
Neither model addresses the timing of disclosure. It may not be necessary to disclose the mother’s HIV status to initiate intensive care, but would be so if the child were to have survived for long enough to need long term antiretroviral therapy. Stepwise disclosure, at a pace the family can tolerate, may be seen to be analogous to the dynamic nature of the consent process, and may serve their best interests.
WITHDRAWAL OF TREATMENT
The decision to withdraw life sustaining treatment from the baby can be justified because the burdens of treatment to the baby and the family outweighed the benefits of continuing it and could improve neither her life nor potential. Indeed, given the clinical facts, there may have been grounds for discussing withdrawal of treatment before it was actually done, but such discussions would have needed to include confidential information and may have deprived the baby of the fullest possible opportunity to benefit. It is important that the process of decision making is perceived to be fair and just and that it is carefully documented
SCOPE OF PROFESSIONAL DUTIES
The primary duty of care of neonatologists is to babies, but they also have duties to relieve the distress of parents who face the illness and subsequent death of their child. Whether this obligation is sufficient justification to breach confidentiality (over the role of HIV transmission) is more conjectural. The parents do need this information to understand their child’s illness, but imparting it is likely to require skilled counselling by HIV teams, working in partnership with neonatologists.
Professionals on the neonatal intensive care unit also have duties to the other patients under their care in preventing transmission of infection and prophylaxis, which derive from principles of justice and welfare. Prophylaxis requires consent that is sufficiently informed but which does not breach confidentiality. This is a sensitive issue demanding tact and discretion
Although the prevalence of HIV and tuberculosis infection may rise, it is not clear what protocols and procedures might be introduced that would cover all the ethical ramifications here. Early collection of information and multiagency discussion may be helpful, as may formal ethical review or use of a policy resource such as that provided by the UK Clinical Ethics Network.7 Part of the function of an ethics commentary is to empathise with and support those who face moral dilemmas whose outcome may depend on precedent and circumstance as much as principle. Overall it may be the process whereby decisions are made, rather than the outcome, that is important to the participants, and this should follow ethical principles.