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PEDIATRIC
HOSPICE PALLIATIVE CARE |
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In Canada, in a geographical area with 250,000 people and a child population of about 50,000, about 50 children are likely to have a life threatening condition and, at any given time, about half of those children will need hospice palliative care. Each year, about 5 will die from a life-threatening illness (Goldman, 1998). Although the number of childhood deaths each year may seem small, the emotional, social and financial impact is extraordinary. A child’s death is a painful, sorrowful loss for parents, siblings, extended family members, teachers, health care caregivers, volunteers and others. During the dying journey, children and their families suffer from reduced quality of life, loss of family income, inconsistency in the availability and quality of hospice palliative care, and the lack of true choices about where the child dies (75% to 80% of deaths among children in Canada occur in hospital intensive care units which may not be the first choice for children and families). The practice of hospice palliative care, which began in the 1970s, is designed to enhance choice, relieve suffering, and ensure the best quality of care during living, dying and grieving. Until recently, hospice palliative care had focused predominantly on the needs of adults who are dying, and the needs of children have been overlooked. This is changing. Groups such as Children’s International Palliative Projects and Services (ChIPPS) and the Canadian Hospice Palliative Care Association Pediatric Interest Group [Canadian Network of Palliative Care for Children (CNPCC)] have brought together leaders in the field to share ideas and advance the field of pediatric hospice palliative care. Children with life threatening conditions and their families have the right to receive hospice palliative care that is planned, coordinated and delivered by formal caregivers who understand how to enhance a child’s quality of life. Over the past year, the CHPCA’s Canadian Network of Palliative Care for Children (CNPCC) have worked to adapt the Canadian Hospice Palliative Care Association's (CHPCA) national principles and norms of practice for pediatric care. How to Use this DocumentThis document is designed to guide health care professionals in establishing standards of practice, service delivery, program and policies for pediatric hospice palliative care, regardless of whether that care is delivered at home, in a hospital, in a long term care facility, or in a hospice. Its goal is to promote a standard consistent approach to pediatric hospice palliative care in Canada.A standard approach to pediatric hospice palliative care will help to:
Everyone providing pediatric hospice palliative care is encouraged to use the principles and norms set out in this document to guide their activities. Norms are simple statements that describe the “usual” or “normal” practice. Pediatric hospice palliative care programs use that statement to develop more detailed, measurable standards. For example, the norm for assessing a child and family’s need for pediatric hospice palliatives care is a fairly general statement: “Assessment is comprehensive and timely so clinicians have adequate information to guide the plan of care.” An organization would then establish minimum standards that formal caregivers must meet to achieve that norm. For example: “The assessment will be done using (name of assessment form). All questions must be completed.” “The assessment will be done within 24 hours of the child being referred to the program.” While working from common principles and norms encourages consistency, it doesn’t imply uniformity. Organizations will differ in the way they develop and function, and in the policies, procedures and strategies they develop to guide their practice.
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