Crucial Decisions at the Beginning of Life: Parents' Experience of Treatment Withdrawal from Infants
Authors: A. Leaf
Journal: Journal of the Royal Society of Medicine (2002)

Having a baby admitted to intensive care is a terrible experience for parents and if the baby dies it is devastating. Not infrequently, death on a neonatal unit follows a decision to withdraw intensive care. No parent is emotionally prepared to deal with this process and its sequelae. Medical and nursing staff, too, are often left with a feeling of inadequacy—that it could have been handled better. Hazel McHaffie has assembled data that, if used by professionals, might make such events less terrible for parents in the future.

The book presents a descriptive study undertaken in three regional neonatal referral centres in Scotland. Five consultant neonatologists were co-researchers, and 59 families participated—41 married couples, 14 unmarried but in partnership and 4 single mothers. For 18 mothers this was their first pregnancy; the remaining 41 had had between one and five previous pregnancies. There were eight multiple pregnancies—five sets of twins and three sets of triplets or quads. Of 62 babies, 34 were born at 28 weeks' gestation or below and 10 were over 40 weeks. The neonatologists referred parents after the initial bereavement appointment. Those agreeing to take part were seen by a single interviewer (HM) 3 months and 13 months after the death of their baby, and semi-structured interviews were used to document their perceptions of different aspects of the events and communication. This is a thorough and extensive piece of work, including much original material. For clinical staff—medical and nursing—I feel the key chapters are those on ‘Decision Making’ (decision to withdraw care), ‘Management of Dying’ and ‘Follow-up’. Each chapter describes what happened, what the parents' perceptions were, what elements were supportive or satisfactory, and what was unhelpful or unsatisfactory.

In decision making the key elements were that parents needed clear information given in a supportive, unhurried manner, and that they did want to be actively involved. An atmosphere of mutual respect between staff and parents was appreciated, enabling parents to feel part of a decision-making team. Delays in imparting knowledge, or with-holding of information in order to ‘protect’ parents, were unhelpful and could lead to distrust. A named consultant was seen as the key person in conducting discussions, and neonatal nurses were vital in supporting parents throughout the process. Some parents found their general practitioner or religious minister helpful, and hospital chaplains were frequently involved. Friends and relatives were of limited help at this time, so the sympathetic support of staff within the neonatal unit was particularly important. Attention to practicalities such as availability of a private room, a telephone and food and drinks was appreciated.

Almost all parents were involved in the dying process, although inevitably for some the death was too quick or too slow for them to feel comfortable. A rapid deterioration, with death occurring shortly after withdrawal of care, was usually seen as confirmation that the decision had been right, while some parents experienced an unexpectedly long decline which was almost unbearable. Many parents commented with surprise about the degree of compassion and emotional involvement of staff, and were much comforted by the fact that nurses and even senior consultants so obviously cared about their individual baby. But things can go wrong: some parents felt unprepared for the nature of the death, others doubted the decision. A thoughtless comment or inappropriate laughter nearby could be deeply hurtful, and conflicting information must be avoided. However, with an honest and sensitive approach combining respect, dignity and privacy while maintaining support, the death of a baby can be handled well.

The importance of timely and sympathetic follow-up is emphasized, with clear messages about what is helpful or hurtful to parents who are grieving and vulnerable. Time, sensitivity and familiar understanding staff are crucial. It is noteworthy that many parents benefited from participation in the study. Although they knew the interviews were not for counselling but simply for gathering of information, they expressed relief at sharing their feelings with a sensitive listener. The book covers other important issues such as requesting necropsy, management of the funeral, and the effect of an infant's death on the rest of the family. Mother's and father's feelings and opinions were often different, and this could lead to conflict and depression. Recognition of the longer-lasting effects of neonatal death is important if parents are to recover and move forward.

When I picked up this book, I was somewhat daunted by over 400 pages on withdrawal of care. However, it is well laid out and each chapter is divided into many clearly titled sections. Real parents in a real situation are the best teachers, and I found it highly informative. Anyone who is faced with decisions on treatment withdrawal in infancy can learn from Hazel McHaffie's excellent and monumental work.