Home and Community Care Digest

Home and Community Care Digest December 2004 : 0-0

Improving provision of pediatric palliative care


The American Academy of Pediatrics suggests that palliative care is appropriate for children with a range of conditions in which premature death is likely or expected, even when cure remains a distinct possibility. This article reviews conditions appropriate for pediatric palliative care, advanced care planning, and development of death concepts in children. The authors conclude a "good death" for children remains undefined, but advocate that palliative care strategies be developed with knowledge of the natural development (i.e. physical, emotional, social, psychological and spiritual) process of children.
Background: The American Academy of Pediatrics recommends that pediatric patients be offered palliative care throughout their illness, even if cure remains a possibility, since identifying the probable time of death for children with rare and life-threatening conditions is extremely challenging and few valid and developmentally appropriate methods exist to measure suffering and quality of life. This article is relevant to the Canadian context since the First Ministers signed, in September 2004, a 10 Year Plan to provide first dollar coverage by 2006 for end-of-life care, which includes case management, nursing, palliative-specific pharmaceuticals and personal care at the end of life, along with two weeks provision of short-term acute home care and two weeks provision of short-term acute mental health home care.

Methods: In this article, pediatric palliative care specialists review the published literature and highlight the unique aspects of administering palliative care in children and adolescents. The article covers topics such as assessment and management of pain, meeting children's emotional and spiritual needs, provision of bereavement care, advance care planning, and barriers to providing effective care.

Findings: Palliative care is suitable for children with a range of conditions in which premature death is likely or expected. This includes conditions for which treatment is exclusively palliative after diagnosis (e.g. certain chromosomal abnormalities), in which cure remains possible (e.g. cancer, heart disease), and those involving extreme vulnerability to health complications (e.g. extreme prematurity, brain injury). Palliative care should be offered throughout the child's illness, and should be accessible in multiple settings such as home, hospital or school. The assessment and management of symptoms and suffering in children is challenging, and a "good death" in a child remains undefined.

Pediatric palliative care includes advance care planning that will identify decision makers, establish goals of care (whether treatment is curative, uncertain or primarily for comfort), and institute medical plans that reflect choices related to changes in health status (e.g. do-not-resuscitate orders). Pediatric palliative care is challenging because the child or adolescent is developing physically, emotionally, socially, psychologically and spiritually as care is being administered. Interventions to prepare the child for potential death, for example, need to be tailored to the child's stage of development. Children under the age of 2 years have may have little understanding of death but may sense that something is wrong. Recommended interventions include increasing comfort through familiar toys, familiar faces and consistency and use of simple physical communication. Children aged 2 to 6 years may not understand that death is permanent, believe that death can be caused by thoughts and may not personalize death. Strategies for this age group may include reducing separation from parents, correcting perceptions that illness is a punishment and monitoring the child for signs of guilt. Children aged 6 to 12 years begin to understand adult concepts of death. It is appropriate to honestly answer these children's questions about death and their disease, ensure that they do not feel abandoned, involve them in decision making about their care and reduce their separation from peers. Finally, adolescents aged 12 to 18 years begin to understand nonphysical beliefs about death. Palliative care specialists should attempt to help adolescents' self-esteem, involve them in decision-making while respecting privacy, and help them sustain relationships with their peers.

Conclusions: This article summarizes the challenges associated with providing palliative care to children and adolescents. The authors advocate that palliative care strategies be developed with knowledge of the natural development process of children. This article is a useful resource for individuals involved in administering pediatric palliative care.

Reference: Himelstein BP, Hilden JM, Morstad Boldt A, Weissman D. "Pediatric Palliative Care." New England Journal of Medicine, 2004; 350, 1752-1762.


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