Ethical and practical considerations in palliative child care and the support needs of parents and siblings

Abstract

Death is one of the few certainties in life and yet it is the one event that most people avoid contemplating until forced to do so. When considering death and dying it is assumed by most to occur in old age and in hospital. The death of a child is a devastating loss which can cause the most distressing and long lasting grief (Davey, 1995). According to “Childhood cancer UK” the number of children developing cancer in the United Kingdom has remained constant over the past 30 years (about 1300 new cases each year), with only two-thirds of children with the disease being treated successfully. In Britain 32 per cent of cancer deaths occur at home (Bean, 1994) however only a small proportion of these will be children. Despite the deaths of children at home being a statistically small group it must not be ignored due to the great emotional impact it has on the individual, family, health workers and often local community. The changing status of children in the UK means that health care professionals must uphold childrens' rights whilst working in partnership with parents. A balance must be found between the traditional protectionist and paternalistic attitude of care and the liberationist approach. This can only be achieved through communication and collaboration between families and members of the multi-disciplinary team allowing the promotion of constructive problem solving The key aim of palliative care is to give the child as good a quality of life as possible in the time remaining with freedom from distressing symptoms including pain. Every health professional working with a dying child who has pain should give consideration to the complexity of pain, it's unique and diverse effects and engage the entire family and health care team in planning interventions and providing support to the child and to each family member (Graner, 1976). Siblings, parents and health professionals may be profoundly affected by the experience of the death of the child, therefore, each multi-disciplinary team must develop formal coping strategies to deal with the possible psychological disturbance and to facilitate adjustment after the death of the child. Martinson, writes of her greatest encouragement which came from the parent of a dying child; “No matter if it culminates a full life or a life shortened much too soon, does death have to be terrorising? There are many to rejoice and aid in the event of birth, as with the patient that can be helped, but for those going through the frustration of ‘not getting better’ when science and the masses, sometimes even family and friends who can no longer face them, have deserted, could there be a greater challenge or more considerable need for help?” (1976, p. 13) This is a powerful message for health professionals caring for children in the end stages of a terminal illness. It is at this time that the family and dying child are in most need of the consistent, expert and humane relationships provided by the caring professions. The challenges are immense but great reward lies in the privilege of being intimately involved in this final rite of passage through life.