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Transition to palliative care

  • Transition to palliative care

    One of the distinctive characteristics of the paediatric palliative care patient population is the diagnostic diversity and prognostic uncertainty encountered within it. As a consequence, a range of illness trajectories are encountered and for many children, it is difficult to identify a point at which treatment becomes exclusively palliative. A mixed model of care in which facets of palliative care and cure-oriented or life-prolonging treatment are married together may be a more helpful way of approaching the care of these children. ® 1 In this way, a child might participate in a Phase 1 trial ®2 or be placed on a list for organ transplantation while receiving optimal symptom management and support in living with uncertainty and the possibility or probability of death. The family is assisted to "hope for the best but prepare for the worst".

    Children die from a range of conditions, many of them rare, some of them familial. Unlike the patient population encountered in the palliative care of adults, only approximately 40% of children with palliative care needs have a malignant condition. The remainder have a range of conditions including neurodegenerative diseases, congenital anomalies, cystic fibrosis and chromosomal anomalies. It is useful to think of these conditions in four groups.

    • Conditions where potentially curative treatment has failed (eg. Malignancy)
    • Conditions where intensive treatment may prolong life but premature death occurs (eg. Cystic fibrosis)
    • Progressive conditions where treatment is exclusively palliative (eg Duchenne Muscular Dystrophy)
    • Non-progressive neurological conditions which result in an increased susceptibility to complications and premature death (eg. Cerebral palsy) ®3

    In cases where a point of transition is clear to the staff caring for the child, it may be difficult for families to abruptly change their focus from cure to palliation. Preparation is required over the course of the child's illness with staff needing to strike a delicate balance between maintaining hope and addressing reality. Decision-making regarding the goals of care should be regarded as a process, not an event. Parents often need time to absorb information, ask questions and consider the child's best interests (see decision-making). Once the goals of care have been defined, a number of further decisions about where the child and family will receive care and the extent of that care will need to be made.

    While parents may intellectually comprehend their child's prognosis, they may have much greater difficulty in accepting this at an emotional level. Palliative care has often been associated with "giving up" in the minds of parents and health professionals, but this need not be the case. Palliative care is not about "doing nothing" and should be presented as a very active approach to symptom control and family support. The focus of hope may change from cure to surviving to a special occasion or being able to go on a last holiday. Later in the illness, parents and staff may hope that the child can be cared for where they wish, that they can be made comfortable and that they die peacefully. Children and families are expected to benefit from the shared expertise of health professionals from both the paediatric and palliative care fields. Early referral to palliative care programmes can facilitate the provision of support at a community level by allowing sufficient time for a therapeutic relationship to be established.

    References.

    1. Glare P, Virik K. Can we do better in end of life care? The mixed management model and palliative care. Med J Aust 2001; 175: 530-536.
    2. The Children's Oncology Group (End of Life Task Force - Education Committee). Phase 1 Insert on palliative care project. Minutes of meeting 26.4.02. (subject to approval by the Hematology/Oncology Discipline Committee).
    3. Goldman A. ABC of palliative care: special problems of children. Br Med J 1998; 316: 49 -52.