Fear of death and dying

Short abstract

Perspective on the paper by Barr (see page 104)

It would be possible to respond to Peter Barr's paper “Relation of neonatologists' end‐of‐life decisions to their personal fear of death” with anger, disbelief or indifference, and it could be misunderstood as suggesting that covert euthanasia is a rampant practice in neonatal units, at least in Australasia. Neither these responses nor such a misreading would do justice to a paper that explores the personal attitudes that mediate the decision‐making processes of neonatal consultants when faced with babies in whom the possibility of forgoing continued life support has become an option to be seriously considered.

In a survey of Australian and New Zealand (ANZ) neonatologists, using validated instruments for measuring dimensions related to fear of death or dying, Barr confirmed that some ANZ neonatologists are comfortable with knowingly hastening death with sedation and analgesia. This has already been shown in Europe, and Barr's paper suggests that the finding is generalisable across culturally similar nations. The most striking finding was an association between the acknowledgement of this practice and greater “fear of the dying process” and “fear of premature death”. We are left with the question as to whether this relationship would also have been true for the other 44% of ANZ neonatologists who did not respond to the survey, and whether it would have been true of other culturally similar jurisdictions.

So, how should we respond to these findings? Firstly, recognising that our own attitudes to death and dying are an important, if unspoken, dimension of decision making at the end of life is important in its own right. Although our attitudes to death and dying are unlikely to undergo substantial change as a result of reading this paper, when we are reviewing the management of neonatal death with our colleagues, it may be helpful to acknowledge feelings as well as facts.

Secondly, it is most unlikely that these findings are limited to consultant neonatologists.

The whole team of people who work alongside families at such times will have their own attitudes and beliefs, as well as fears, that will not necessarily be the same as those of other members of the team. This of course includes families. Those of us who have been closely engaged in minute‐by‐minute terminal care have learnt first hand how different parents can be from one another in relation to their fears of the dying process, extreme terror in some contrasting with serenity or resignation in others. Given that one aspect of the art of terminal care lies in helping parents to manage their feelings when these threaten to destabilise the process, perhaps learning to deal with our own fears differently might also be appropriate. In a healthy and functional team, members know something of each other's capabilities, attitudes and feelings, and work with this knowledge to help the group to work optimally towards its goal. Where the goal is a “good” death, knowledge of each others' fears and feelings will help not only in achieving this primary goal but also in the secondary goal of ensuring that team members themselves are not hurt or damaged by the death—an important consideration for junior nursing and medical staff who may have had little or no previous exposure to death in infants or children.

What of the doctrine of “double effect”? This is the notion that treatment of a terminally ill patient with powerful drugs for symptom control is justified, ethical and legal, even if administration of such treatment may shorten life, because the immediate need for treatment of symptoms is essential, a hastened death is not the intention and death at some point soon is inevitable. By contrast, hastening the onset of death for its own sake, even if the motivation for this action is the release of the patient from intolerable symptoms (eg, uncontrollable pain or respiratory failure), is euthanasia, and is at present illegal. In theory, these two approaches can be made to look quite different, but faced with a baby for whom there is general agreement that continuing intensive care is no longer appropriate, and in the knowledge that discontinuing such care is likely (although not always certain) to be a lethal act, the boundaries between these two positions can blur.

Seldom does this blurring cause any difficulty. Clinical teams and parents, faced with the facts of a baby's desperate clinical state, are usually able to converge their views to the point that the move from intensive care to palliative care is believed by all to be appropriate, and relief of symptoms, usually with sedation and analgesia, becomes the primary goal. Problems occur when the clinical team and the parents form divergent views (as has been seen in some high‐profile cases of recent years1), and also when there are powerfully conflicting views within the clinical team (as in the Leonard Arthur case2). Such divergences may sometimes arise from strong religious convictions, but they could plausibly be generated by humanist fears or beliefs in relation to death and dying.

Acknowledging these, and dealing with them openly, might be more constructive than leaving them as unspoken but disruptive influences on the planning of end of life care. I suspect that in the UK, most neonatologists would agree that their management of terminal care may sometimes hasten an inevitable death, but few of us would know to what extent our practices or those of our colleagues were related to our attitudes to death and dying.

Barr's paper shows us that in relation to neonatal death and dying, doctors' fear, or lack of it, matters. It matters because it can influence clinical judgements. Recognising this influence is an important aspect of self‐knowledge, and there is a case to be made for all of us to be more open about it.