68
Ethics

Sick newborn infants have the same rights to life and access to care as any other person. Their care is dependent on a successful partnership between parents and the clinical team (Fig. 68.1).

Fig. 68.1 Ethical framework of clinical practice.

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Questions

What is the role of clinical ethics committees?

Increasingly being developed as a resource for doctors and other health-care professionals and parents facing difficult ethical problems. US hospitals are required to have mechanisms in place to address ethical issues in patient care. Ethics committees are often diverse, including physicians, nurses, lay members, pastoral care, and others. In the US and some centers in the UK, the committee can be rapidly constituted to discuss an individual problem proactively. Ethics committee decisions are generally advisory. In those circumstances where there is continued conflict after ethics committee involvement, referral to court may be required. In addition to assisting with individual cases, institutional ethics committees are becoming more involved in organizational ethical issues such as conflict of interest and the impact of performance incentives on patient care.

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The withholding or withdrawal of life-saving medical treatment

There are a number of situations in neonatal practice where with-holding or withdrawal of life-saving medical treatment is considered morally permissible. Their management is influenced by the parents’ religious beliefs and cultural background, the laws of the country and national guidelines (e.g. American Academy of Pediatrics, Royal College of Paediatrics and Child Health) (Tables 68.2 and 68.3) These decisions are stressful not only for the parents but also for the health-care team, amongst whom consensus and an agreed management plan should be reached. Consent must be obtained from the parents, but the extent to which they may wish to be involved in the decision-making depends on the individual family. Repeated discussion without coercion may be necessary.

Table 68.1 Definitions of the principles of medical ethics.

Beneficence	Do good
Non-maleficence	Do no harm
Justice	Legal justice, respect for rights, fair distribution of resources
Respect for autonomy	Respect for the individuals’ right to make informed and thought-out decisions for themselves
Trust	Parents need to develop trust in their physician, who has a responsibility to ensure that this trust is not misplaced

Table 68.2 Situations in neonatal care where withholding or withdrawing life-sustaining treatments may be considered ethically justified if considered not to be in the child’s best interest, in the UK (Larcher, V. et al. Arch Dis Child 2015; 100(Supp 2)s1–s23).

i) When life is limited in quantity

If treatment is unable or unlikely to prolong life significantly:

• Brain stem death Imminent death
• irrespective of treatment
• Inevitable death, where prolongation of life confers no overall benefit.

ii) When life is limited in quality

Where treatment may prolong life but will not alleviate:

• Burdens of treatments, which produce sufficient pain and suffering to outweigh potential or actual benefits
• Burdens of the child’s underlying condition, which produces such pain and distress as to overcome benefits in sustaining life
• Lack of ability to benefit, where the severity of the child’s condition makes it difficult or impossible for them to derive benefit from continued life.

Table 68.3 Situations where treatment of disabled infants can be withheld in the US – the Baby Doe case.

Legislation regarding the treatment of infants with birth defects was introduced following the case of Baby Doe who was born in 1982 with Trisomy 21 (Down syndrome) and esophageal atresia. Partly on the advice of their obstetrician, the parents refused to consent to life-saving surgery to repair the esophageal defect. They felt that a ‘minimally acceptable quality of life was never present for a child suffering from such a condition’. Without the surgery, the infant was unable to eat.

Legal dispute

The hospital disagreed with the parent’s refusal to consent and filed in court an emergency petition seeking authorization to perform the surgery. The trial court felt that the parents had a right to choose a medically recommended course of treatment. The obstetrician had recommended against surgery. The court did not give permission for surgery. The hospital appealed the decision, but the baby died when 6 days old.

Political consequences

The case drew widespread media attention, and ignited a national debate over the treatment of infants with birth defects.

President Reagan disagreed with the decision – ‘The judge let Baby Doe starve and die.’

The Surgeon General, C. Everett Koop, a pediatric surgeon, became involved in getting Congress to pass the Baby Doe Amendments.

The Child Abuse Prevention and Treatment Act (CAPTA) 1973, reauthorized 2003

This prevents the withholding of ‘medically indicated treatment’ from disabled newborns with life-threatening conditions.

Five circumstances under which treatment can be withheld are:

1. Chronically and irreversibly comatose
2. Treatment would merely prolong dying
3. Treatment would not be effective in ameliorating or correcting all of the infant’s life-threatening conditions
4. Treatment would be futile in terms of survival
5. Treatment would be virtually futile and the treatment itself under such circumstances would be inhumane

If life-saving support is going to be withheld or withdrawn, all aspects of palliative care including symptom management and psychosocial support should be in place (see Chapter 70). Many parents will accept the appropriateness of withdrawal of mechanical ventilation and appreciate the opportunity to spend time with their baby away from the technology of intensive care, but with staff to support them. The baby’s comfort should be the priority and pain or distress alleviated. Parents need to know that the infant may continue to breathe for some time after disconnection from the ventilator.

If there is dissent or uncertainty about the best course of action, it is likely to be best to continue to provide full intensive care.

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Questions

What is the difference between withholding and withdrawing intensive care?

There is no ethical or legal distinction between them, though emotionally it may be easier not to start treatment than to withdraw it. If there is uncertainty, provide intensive care and subsequently withdraw it after full assessment.

Is euthanasia allowed?

Giving a medicine with the primary intent to hasten death is unlawful in both North America and Europe (though in the Netherlands and Belgium it is accepted on a carefully regulated basis). Giving a medicine to relieve pain, which as a side effect may hasten death (the principle of double effect), is ethically appropriate if its primary purpose is to alleviate distress or suffering.

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