Ethical considerations in neonatal end-of-life care

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Summary

Decisions regarding the end-of-life care of neonates, especially those at the limits of viability, cannot be made on the basis of clinical facts alone. They should take into account the values and beliefs of all concerned. Application of classical moral theories may take insufficient account of the interests of small babies. Due consideration needs to be given to the value and quality of babies' lives, their best interests, and the interests of their parents in practical decision-making. Life-sustaining treatments can be withheld or withdrawn if they no longer serve the baby's best interests, but active euthanasia (though an acceptable practice in The Netherlands) remains illegal in the UK. Withdrawal of clinically assisted nutrition and hydration can be ethical but remains controversial. If organ donation in UK neonates is to become established it will need to respond to the changing characteristics of neonatal deaths in ways that are ethically and socially sensitive.

Introduction

This article will focus on the ethical considerations that underpin the care of babies born at the limits of viability, but many of the principles can be applied to others with life-limiting conditions, whatever their gestation. Detailed longitudinal studies have defined survival and neurodevelopmental outcomes for extremely preterm babies,1, 2, 3, 4 whereas others have elucidated the emotional, psychosocial and economic costs to families and society.5, 6, 7 However, uncertainties over the outcome for individual babies remain. Decisions about the treatment and care of babies cannot be made solely on the basis of the clinical facts or scientific evidence. They should also take account of the values and beliefs of all those concerned and must be made within society's existing legal framework.8

A rational ethical approach to practical clinical decision-making has parallels with evidence-based medicine. It seeks clarity over the use of terms, e.g. quality of life and best interests, and requires consistency in the application of moral values. Any proposed framework for decision-making should be examined for its coherence with appropriate value systems that can be expressed as moral theories and principles which are briefly outlined below and which can be applied to determine the moral acceptance of actions.9

Consequentialist theories (of which utilitarianism is a form) are concerned with the reasonably foreseeable consequences of an action on those involved, rather than the intentions behind it. An action is morally correct if it maximises welfare or individual preferences or happiness of those involved – ‘the greatest good for the greatest number’. Formal calculation of risks and benefits is necessary, but this is compatible with reflective, evidence-based, clinical practice. Although outcomes for relevant individuals are important, no individual is of greater moral worth than another, which presents difficulties in circumstances where there are strong emotional attachments between individuals, e.g. parents and children.

Deontological theories are concerned with duty; to be moral is to do one's duty, or intend to do it, regardless of the consequences. This involves obeying moral rules that are universal, unconditional and imperative. Four principles (beneficence, non-maleficence, respect for autonomy and justice) can be derived from deontological considerations and establish prima facie duties, i.e. those that, other things being equal, we ought to fulfil.

Moral individuals require certain characteristics/abilities (rationality, self-determination, autonomy) to formulate and carry out life plans in accordance with relevant moral rules and values. They have intrinsic value and are worthy of respect; but it does not necessarily follow that individuals who lack these characteristics, e.g. extremely young children, have no intrinsic value.

Rights are justifiable moral claims made by or on behalf of individuals; they confer duties (to act, or to forebear) on others.10 Positive rights, e.g. the right to healthcare, require action by others. Negative (‘natural’ or ‘liberty’) rights entail an obligation by others not to infringe them; they usually take precedence over positive rights. Rights may not be absolute or unconditional and can (in law) be infringed if it is proportionate to do so.11

Some rights can appear to conflict, e.g. the right to life versus freedom from inhuman and degrading treatment. Rights claimed by various parties in clinical situations (children/professionals/parents) may constrain each other and it is not clear whose rights take precedence, especially when individuals may be unable to claim rights for themselves, e.g. preterm babies.

In virtue-based ethics an action is right if it is performed by a virtuous person, for the right reasons; the focus is on the moral character of the person whose act it is. Whereas virtue ethics may shape expectations of professional behaviours towards others12 it does not directly provide solutions to the difficulties encountered in daily practice. It does not clarify the moral status of small babies, but in this it is hardly unique.

Section snippets

Practical applications

Simply applying moral theories to practical dilemmas will not resolve sincerely held differences in moral beliefs and values held by individuals, e.g. parents and professionals. In some cases application of any of the types of moral theory will enable the same judgement of the rightness or wrongness of an action to be reached, e.g. resuscitation of babies, albeit for different reasons. In other cases application of moral theories may lead to different and incompatible moral judgements, e.g.

Withholding and withdrawing life-sustaining treatments (LSTs)

It is conventional to regard withholding or withdrawal of LSTs as ethically equivalent.19, 20 Hence it is permissible to withdraw a treatment a patient is receiving, if it would have been permissible to withhold the same treatment (if not already provided) and vice versa. Many jurisdictions accept the equivalence thesis, but not all professionals do so. Surveys of professionals have shown that only 20–54% believe that withholding and withdrawing LSTs are morally equivalent. This standpoint has

Palliative care and the principle of double effect (PDE)

Palliative care of neonates from whom LST is withdrawn or withheld is morally justified because its intention is to provide comfort and relieve pain and suffering. Opiates and anxiolytics are used to achieve this end but can also shorten life, a practice that is justifiable by application of the principle of double effect (PDE). According to the PDE, an action that has two possible outcomes – one good, the other bad – may be permissible provided that the bad outcome, though foreseen, is not

Administration of food and fluids during neonatal palliative care

Providing adequate nutrition and hydration fulfils basic human needs and has strong emotional and socio-anthropological connotations. Although small babies cannot feed themselves, giving them food by mouth is considered part of basic care and should be provided for those who can tolerate it and those who appear hungry and thirsty.19, 31, 32

Babies at borderline viability and others with acute or chronic medical conditions are unable to tolerate oral intake and require clinically assisted

Organ donation

Most neonatal deaths occur in intensive care settings and an increasing proportion of deaths occur after withdrawal of treatments.37 This is particularly important in considering how the sensitive question of neonatal organ donation might be approached.

Transplantation of vital organs is a well-established treatment for acute or chronic severe organ failure. Although the number of neonates requiring organs is small, problems of insufficient donor organs are compounded by the application of brain

Conclusions

This article has been concerned with the ethical considerations that pertain to end-of-life care in neonates and the values that should underpin this. It may not be possible to achieve complete unanimity on issues of fundamental moral concern. However, an understanding of the ethical principles and theories that might be used to justify or to challenge practice is just as important as the need for clinical practice to have a sound evidence base. In the interest of all concerned, decisions that

Conflict of interest statement

None declared.

Funding sources

None.

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