• Principles of ethical reasoning
  
• Decision-making processes
  
• The role of the Institutional Ethics Committee
  
• Withholding and withdrawing life-sustaining treatment
  
• Common neonatal ethical dilemmas
  
• Parents in the decision-making process

Introduction

Ethics is the science of morals; the branch of philosophy concerned with human character and conduct. Ethical issues arise in the interactions of persons that involve the welfare or freedom of humans. They occur when one person or group of persons acts in ways that affect the welfare of another person or group of persons.

In the practice of medicine the best course of action is generally determined by humanist values (intrinsic value of human life). The very core of medicine is the respect for human life and the attempts to sustain and improve it. Life-sustaining treatment decisions for newborn infants are typically made in an environment of scarce resources and where the medical, ethical and personnel implications are complex and often ambiguous. Terminology such as ‘sanctity of life’, ‘quality of life’, and ‘ordinary or extraordinary means’ are unduly simplistic and usually unhelpful.

Principles of Ethical Reasoning

Four major principles of ethical reasoning (described below) are particularly relevant to making decisions about newborn infants:

• beneficence
  
• non-malificence
  
• autonomy
  
• equity or distributive justice.

Beneficence (Discontinuing Futile Treatment)

The traditional medical ethic is to act in ways that benefit the patient and do no harm. In many cases, however, the institution or continuation of treatment aimed at sustaining life is futile. Futile treatment is not likely to prevent death or serious compromise to the patient. There are difficulties in assessing futility, but medical determinations must be made so that treatments that offer no benefit, and only serve to prolong the dying process, should not be employed.

Non-Malificence (Burdensome Treatment)

The primary ethical injunction for the doctor is ‘first, do no harm’ (primum non nocere). In making a decision to withhold or withdraw life-sustaining medical treatment the principle of non-malificence would require withholding treatment where it can be said that it harms the patient. This occurs when the treatment itself is an intolerable burden to the patient.

Autonomy

The patient has the legal right and ethical autonomy to refuse life-sustaining treatment and be allowed to die. The neonate has never been competent and therefore decision-making is based on the patient’s ‘best interests’. Generally the parents have the authority and responsibility to make decisions on behalf of their baby. The two rationales for giving the parents the responsibility are ‘bearer of responsibility’ and ‘best advocate’ grounds.

Equity or Distributive Justice

Doctors have an obligation to distribute benefits and burdens equally and, where differential treatment is given, to explain the reasons for this based on widely accepted criteria. This principle might mean that in some cases the patient’s best interests should not or need not be the sole determining criterion.

Decision-Making Processes

Several approaches to decision-making process have been described.

‘Wait until Certainty’ Approach

In an aggressive treatment environment almost every infant who is thought to have any chance to survive has full treatment commenced and continued until it is clear that treatment should be withdrawn. The advantage of this approach is that it avoids the death of any infant who might have a good outcome, but at the cost of some infants for whom dying might be unnecessarily prolonged or who might survive with severe handicaps. This aggressive approach is understandable in societies where consumer rights, individualism and litiga­tion are prevalent, such as in North American countries.

Statistical Approach

This approach draws on the accumulated evidence in order to establish categories of patients for whom treatment should be withheld or withdrawn. This approach seeks to avoid ‘creating’ severely impaired children, even though this may be at the expense of the deaths of some infants who might have a good outcome. This approach has been widely adopted in the Netherlands and some Scandinavian countries.

Individualized Approach (Prognostic Decision-Making)

In this approach, treatment is initiated on any infant who has a chance of survival but the patient is continually assessed to determine whether this treatment is in the child’s best interests. A determination to withdraw treatment is made earlier than in the ‘wait until certainty’ approach. For example, applying this approach to a 25 week, 750 g infant with respiratory distress syndrome (RDS) and refractory hypotension who develops a grade IV intraventricular haemorrhage (IVH) may enable the experienced physician to recommend withdrawal of treatment.

Antenatal Diagnosis

A paradigm shift has occurred in the last two decades in ethical decision-making in perinatal medicine. In previous decades ethical decision-making usually occurred after the unexpected birth of an infant with a major congenital anomaly. However, most pregnant women now have biochemical and ultrasound screening (such as nuchal fold thickness) in the first trimester and almost all have ultrasound assessment at 17–19 weeks’ gestation for congenital anomalies. In developed countries most major congenital anomalies are diagnosed antenatally before 20 weeks’ gestation. Parents receive full multidisciplinary counselling and are supported in their decision-making process. A clinical care plan is developed and frequently a case manager supports the family.

The Role of the Institutional Ethics Committee

Institutions and neonatal service providers usually have established general principles and a process for ethical decision-making. The Institutional Ethics Committee (IEC) may have a role to play in treatment decisions on ‘imperilled’ newborn infants. The IEC also has an important proactive role in ethical decision-making for obstetric and fetal patients but less so for commencing, continuing, withholding or withdrawing treatment in a neonate.

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