Table 3.
Finalized Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care, and Defining Criteria, following Four Rounds of Consensus Building
| Domain 1: structure and processes of care |
| Defining criteria |
| A HBHPC program caring for children should make ongoing use of specialized pediatric hospice and palliative care expertise to meet the unique needs of this population. |
| A comprehensive and timely assessment of the child and family forms the basis of care. |
| Members of the HBHPC program will elicit and document preferences of the child to the degree possible using developmentally appropriate tools. |
| The care plan is based on the identified and expressed preferences, values, goals, and needs of the child and family and is developed with shared decision making through professional guidance and support for the child–family decision making. |
| The HBHPC program provides services to the child and family consistent with the care plan. In addition to chaplains, nurses, physicians, and social workers, other therapeutic disciplines who provide HBHPC services to children and families may include: case managers, child life specialists, nursing assistants, nutritionists, occupational therapists, recreational therapists, respiratory therapists, pharmacists, physical therapists, bereavement specialists, psychologists, speech and language pathologists, and complementary/integrative therapies, including but not limited to massage, art, music and/or aromatherapists. |
| The HBHPC program is encouraged to use appropriately trained and supervised volunteers. |
| Support for education, training, and leadership and professional development is available to all members of the program. |
| In its commitment to quality assessment and performance improvement, the HBHPC program develops, implements, and maintains an ongoing data-driven process that reflects the complexity of the organization and focuses on relevant HBHPC outcomes. |
| The HBHPC program recognizes the emotional impact of the provision of HBHPC on the team providing care to children with serious or life-threatening illnesses and their families and develops strategies to monitor, prevent, and intervene on an ongoing basis. |
| Community resources ensure continuity of the highest quality HBHPC across the care continuum. |
| The physical environment in which care is provided meets the preferences, needs, and circumstances of the child and family, to the extent possible. |
| Domain 2: physical aspects of care |
| Defining criteria |
| The HBHPC program assesses and manages physical symptoms, including pain, and their subsequent effects in a timely manner, based on best available evidence. |
| The assessment and management of symptoms and side effects are tailored to the child's and family's goals, in the context of their disease status, to maximize quality of life. |
| Children and families are educated in the assessment of pain and other symptoms and in how to manage other physical aspects of care. |
| Domain 3: psychological and psychiatric aspects of care |
| Defining criteria |
| The HBHPC program assesses and addresses psychological and psychiatric aspects of care, based upon the best available evidence, to maximize child and family coping and quality of life. |
| The assessment and management of psychological and psychiatric aspects of care recognize the unique stress on the child living with this illness, and on the family in caring for a child with a serious or life-threatening illness. |
| The assessment and management of psychological and psychiatric aspects of care recognize that stress may manifest in ways that are both physical and psychological. |
| Domain 4: social aspects of care |
| Defining criteria |
| A comprehensive, family-centered interdisciplinary assessment (as described in “Structures and Processes of Care”) identifies the social determinants of health, as well as the resources, needs, and goals of each child and family to maximize child–family strengths and well-being. |
| The specific needs of the sibling(s) are assessed and addressed. |
| The plan of care may address the school environment and consider advance care planning, which may include but not be limited to DNR orders in a school setting; interacting with school nurses, educators, and classmates; durable medical equipment (DME) at school; and transportation. |
| Domain 5: spiritual, religious, and existential aspects of care |
| Defining criteria |
| The HBHPC program ensures that spiritual, religious, and existential dimensions of care for both the child and family are assessed and addressed, recognizing that there may be significant differences between the child and family. |
| A screening for spiritual struggle, distress, or spiritual needs of the child and family is performed, and a spiritual assessment is performed. |
| Chaplains, ideally with pediatric experience, conduct spiritual assessments, participate in determining use of spiritual screening tools, and mediate conflicts involving spirituality/religiosity, and medical decision making. |
| The HBHPC program facilitates religious, spiritual, and cultural rituals or practices as desired by the child and family, especially at and after the time of death. |
| Domain 6: cultural aspects of care |
| Defining criteria |
| The HBHPC program provides care to each child, family, and community in a culturally and linguistically appropriate manner. |
| The HBHPC program supports children and families by approaching medical decisions in ways that are respectful of their culture and values. |
| The HBHPC program is a resource to other providers in navigating cultural practices as they relate to child care. |
| The HBHPC program meets and maintains its cultural and linguistic competence according to accepted standards. |
| Domain 7: care of the child at the end of life |
| Defining criteria |
| The HBHPC program educates families on the expectations and the process of dying and normalizes the experience when appropriate. |
| The HBHPC program identifies, communicates, and manages the signs and symptoms of children at the end of life to meet the physical, psychosocial, spiritual, social, and cultural needs of children and families. |
| In collaboration with the child and family, the HBHPC program develops, documents, and implements a care plan regarding desire for treatments and procedures, preference for site of care, signs and symptoms, child and attendance of family and/or community members at the bedside at the end of life. |
| In the context of the child's end of life, the specific needs of the sibling(s) are assessed and addressed. |
| Post-death care is delivered in a respectful manner that honors the child's and family's culture and spiritual/religious practices. |
| Domain 8: ethical and legal aspects of care |
| Defining criteria |
| The child's or parent's/legal guardian's goals, preferences, and choices are respected within the limits of applicable state and federal law, current accepted standards of medical care, and professional standards of practice. Person-centered goals, preferences, and choices form the basis for the plan of care. |
| The child's assent to the care plan is elicited and documented when possible. |
| In the event of unresolved conflict between child's and parent's goals, between the family and treatment team, and/or if the child withholds assent, the HBHPC program may act in consultation with a bioethics committee, and the outcome of that consultation is documented. |
| The HBHPC program identifies, acknowledges, and addresses the complex ethical issues arising in the care of children with serious or life-threatening illness. |
| The provision of HBHPC occurs in accordance with professional, state and federal laws, regulations, and current accepted standards of care. |
| Domain 9: coordination of care |
| Defining criteria |
| The plan of care for the child and family is developed, documented, regularly reviewed, and revised by the HBHPC program, with the wishes of the child and family and outcome goals clearly defined and agreed upon. |
| The HBHPC program provides continuity of care and coordination among medical providers, with emphasis on maximizing the child's goals and advocating for the child's and family's well-being in the context of complex medical systems. |
| When possible, the HBHPC program coordinates services that the child and family need during the HBHPC experience, which may include coordination of DME, medications, school needs, private duty nursing, etc. |
| The HBHPC program maintains regular, high-quality communication among medical providers and assists in the interpretation of multiple consultant perspectives. |
| Domain 10: bereavement care |
| Defining criteria |
| A pediatric bereavement program acknowledges that grief begins with anticipatory grief and continues long after the child dies, and includes the child's family and those people outside of the child's family who are impacted by the child's death (e.g., staff, community physicians, foster parents, and others). |
| A core component of the HBHPC program is a grief and bereavement program available to children, families, and community members impacted by the child's death. |
| The qualifications of bereavement providers include understanding the developmental and psychological needs of the child patient, siblings, parents, family, or classmate/friend(s). |
| Specific bereavement interventions are provided throughout the child's life and on an ongoing basis after the child's death. |