Table 1.

Domains of High-Quality PPHC in the Home

Domains	Description
Communication between family and care team	Care team communicates with the child and family to make sure that the care provided meets the child’s and family’s values, preferences, goals, and needs
Relationship between family and care team	Relationship between care team and family is built on trust, respect, and advocacy for the child’s and family’s needs
Knowledge and skills of care team providers	Care team members have the necessary education and training to provide high-quality palliative care for children and families
Access to care	Care team provides access to palliative and hospice care to the child and family 24 hours a day, seven days a week
Physical care: Communication	Care team provides information about treatments for child’s pain and other physical symptoms (e.g., nausea, fatigue, constipation)
Physical care: Symptom management	Care team assesses and manages pain and other physical symptoms and side effects based on the best available medical evidence
Psychological and emotional aspects of care (child, parents, siblings, and extended social network)a	Care team assesses and manages psychological and emotional issues (such as anxiety, distress, coping, grief) of the child, family, and family’s community based on the best available medical evidence
Practical aspects of care	Care team provides the family with assistance and resources for dealing with financial and insurance-related issues
Social aspects of care (child, parents)a	Care team helps with social issues to meet child-family needs, promote child-family goals, and maximize child-family strengths and well-being (examples include helping family maintain and strengthen their support network; help family develop strategies to balance caregiving, work, and family needs)
Spiritual and religious aspects of care	Care team assists with religious and spiritual rituals or practices as desired by the child and family
Cultural aspects of care	Care team respects the child’s and family’s cultural beliefs and language preferences
Communication at the end of life	Care team works with the child and family to develop and implement a care plan to address actual or potential symptoms at the end of life
Caregiver support at the end of life	Care team meets the emotional, spiritual, social, and cultural needs of families at the end of life (e.g., preparing parents for the end of life)
Ethical and legal aspects of care	Child’s and family’s goals, preferences, and choices are respected within the limits of state and federal law, current standards of medical care, and professional standards of practice These goals/preferences/choices are documented and shared with all professionals involved in the child’s care
Coordination of care	Care team works to make sure that when there are transfers between health care settings and providers, that there is timely and thorough communication of the child’s/family’s goals, preferences, values, and clinical information to ensure continuity of care and seamless follow-up (e.g., getting needed services, arranging for medical equipment)
Continuity of care	Care team works to make sure that the delivery of palliative and hospice care is seamless across care settings and providers (e.g., the same providers work with family)

PPHC = pediatric palliative and hospice care.

Note: These domains are based on the National Consensus Project’s Clinical Guidelines for Quality Palliative Care (fourth edition),²² which were further adapted using pediatric palliative care-specific guidelines and the literature^20,25–28 and informed by a panel of pediatric palliative care stakeholders (providers and parent advocates).

^aSeparate subdomain for each group.