COUNSELLING
OF BIRTH DEFECTS IN PERINATAL PERIOD
Ho
Lai-Yun
Department of Neonatology, Singapore General
Hospital, Republic of Singapore
Breaking bad news to the family on detection
of a fetus or an infant with congenital anomalies is rarely easy. Families
are often distraught, the information may be quite technical and
incomplete, and there are complex medico-legal and ethical issues involved
in the decision-making process. The objective of counselling is to assist
the family to understand the medical facts, including the diagnosis,
probable course of the disorder, and the available management, choose the
course of action which seems appropriate in view of their risks, the family
goals, and to act in accordance with that decision, and come to terms with
the issues the family will face and make the best possible adjustments to
the disorder. Most of the time, the collaborative efforts of an experienced
team are required so that information will not be misunderstood,
misinterpreted, or misused.
The type of information provided to a family
at a particular time often depends on the urgency of the situation, the
need to make decisions, or the need to collect additional information.
There are three general time frames. The first occurs following the prenatal
diagnosis of fetal defects. At this time, the family must decide whether to
continue the pregnancy. If the pregnancy is continued, they must decide on
the extent of support to be provided for the pregnancy and for the infant
after delivery. The second situation occurs when a child is born with
unexpected congenital anomalies and decisions must be made immediately
regarding how aggressively to support the child. While the parents will
naturally wonder why the problem occurred, what should have been done differently,
and who is to blame, the paediatrician also urgently needs information on
which to base therapy and prognosis. The third situation in which a family
needs information arises later, as they try to make life-planning and
reproductive decisions. The emotions and unresolved anxieties experienced
by the family may be no less intense than in the two more urgent
situations.
Each of these situations requires a slightly
different approach. The art of counselling lies in determining the best
time and circumstances in which to convey complex but essential
information. Each disorder has a unique set of complications, diagnostic
possibilities, and natural history. The provision of information is an
on-going, education process and it must be delivered in a way that is
understandable. The concerns and questions of the family must be addressed.
Families will usually go through predictable stages of emotional responses,
and different family members will often be at different stages. Depending
on which stage they are experiencing, information will be received in very
different ways. Each family brings to the counselling session a unique set
of personal and cultural experiences. The counselling professionals
involved also bring to the case their own set of values. These values may
affect the way counselling is provided if great care is not taken to avoid
judgmental or directive advice.