Values and Principles
Guiding principles for paediatric hospice palliative care builds upon the work of the Canadian Hospice Palliative Care Association and integrates a changing conceptualization of hospice palliative care from traditional end of life care to a model that addresses continuity of care throughout the experience of illness, dying and bereavement. This new model includes the following key components:
Paediatric hospice palliative care is appropriate for any paediatric patient regardless of age and/or family living with, or at risk of developing a life-threatening condition due to any diagnosis, at any time they have unmet expectations and/or needs, and are prepared to accept care.
Paediatric hospice palliative care is family-centered and has, as its goal, achieving the best quality of life through the relief of physical, psychological, social, emotional and spiritual suffering in the midst of illness, dying and bereavement.
The unit of care is the family. Family is defined as the persons who provide physical, psychological, spiritual and social comfort to the child, regardless of genetic relationships.
The care team recognizes the individuality of each child and upholds their values, wishes and beliefs.
Care is designed to enhance the quality of life for the child and family; the child and family should be included in determining the priorities for care after being given as much information as is desired regarding the disease and treatment options.
Paediatric hospice palliative care may complement and enhance disease modifying therapy or it may become the complete focus of care. Paediatric hospice palliative care specializes in promoting quality of life during all stages of a life-threatening illness.
Paediatric hospice palliative care should optimally be provided by an interdisciplinary team. Children, parents/substitute decision makers, health care professionals, hospice caregivers, teachers, and volunteers should all be considered to be part of the team.
Paediatric hospice palliative care should be accessible to children and their families in a setting that is desired and appropriate to their needs and available resources, whether that be the home, inpatient hospice, hospital or intensive care unit. There should be continuity of care across settings.
Peadiatric hospice palliative care should be available 24 hours a day, 7 days a week, and families should be assigned a contact person to help coordinate their care.
The delivery of paediatric hospice palliative care in a manner that honours the above values and principles requires a standardized approach.
