Lingering death after treatment withdrawal in the neonatal intensive care unit.

Abstract

Objective--To explore parents' perceptions of treatment withdrawal and the dying process.

Design--Face to face interviews with 59 sets of parents of 62 babies in the East of Scotland three months and 13 months after death.

Results--22% of the parents expressed reservations about the length of the dying process, which they reported in these instances had taken from three to 36 hours. Deaths that medical teams had predicted would be quick had, according to the parents' recollections, taken from 1.5 to 31 hours. When a baby died swiftly, this seemed to confirm the wisdom of the decision to stop. When babies lingered, doubts were raised.

Conclusions--Parents need to be adequately prepared for what may happen after treatment withdrawal. The debate should be reopened about the best way to manage protracted deaths in line with parental need.

Keywords: protracted deaths; withdrawal of treatment; bereaved parents; neonates

Survival of sick and preterm infants has improved dramatically with the development of neonatal intensive care. In some circumstances, however, it is clear that the prolongation of aggressive invasive treatment is not in the best interests of the baby. Reorientation of treatment to compassionate care is accepted practice in some situations, and these have been outlined in the Royal College of Paediatrics and Child Health (RCPCH) framework for practice, [1] and further discussed in the BMA's guidance to clinicians. [2]

Official documents underline both professional [1,2] and political [3,4] rejection of euthanasia, but withdrawal of intensive treatment means that the baby is expected to die. Management is orientated towards facilitating a death that is dignified and free from suffering. The parents also need help with this distressing experience but there is little guidance available to staff on how to manage these situations. A previous study of doctors and nurses who deal with such families showed that teams evolve their own ways of coping, but practice varies considerably. [5]

Moving accounts of the conflicts and pain for individual parents facing these distressing experiences in the United States have been provided by observational studies carried out by people not previously conversant with neonatal intensive care, such as social scientists or journalists. [6-9] The lived reality has been captured anecdotally by parents describing their own reactions and emotions. [10-13] Clearly, the time between withdrawal of intensive treatment and the death of the baby is very variable, and many parents and professionals have found the uncertainty difficult to deal with.

This paper presents findings from a multi-centre study that aimed to establish the effects of current practices on the families of babies from whom intensive care had been withdrawn or withheld. It focuses on the parents' perceptions of the length of time it took for their baby to die.

Method

SETTING

The study units were three regional neonatal referral centres in the East of Scotland selected to include a range of populations drawn from island as well as mainland families, rural as well as urban, local as well as those referred from a distance, and all social classes. Ethical committee approval was obtained for each centre.

SAMPLE

Families were eligible for inclusion if there had been any discussion about treatment limitation. The babies were those for whom there was a medical prognosis of either early death or severe impairment associated with a very poor quality of life. All three main categories of imperilled babies were represented: premature delivery, congenital anomalies, perinatal asphyxia. Fifty nine (73%) of …