At first glance, the NHPCO’s 36-page toolkit may seem daunting to approach, but it is perhaps one of the most detail-oriented and comprehensive toolkit we have come across. Ultimately, this toolkit serves to set standards for palliative and hospice programs across multiple spheres including: perinatal, infancy, childhood, adolescence, and early adults, in the home, hospice, long-term care or a respite facility.

This document bolsters that hospice should be holistic, fulfilling physical, psychological, social, developmental, education, and spiritual goals which include the hope for a cure, the wish to prolong life, and a desire to improve the quality of life. It is important to remember that hospice should neither hasten death or prolong suffering.

Practices for adult hospice care cannot simply be transferred to pediatric hospice care. There are significant developmental differences between children and adults, which affects diagnosis, prognosis, and treatment. Comparatively, it is difficult to make predictions about the future because children are physiologically resilient. Unlike adults, the communities in which children live may lack the resources and clinical expertise to address their needs, resulting in longer distances to travel and increasingly fragmented care. Finally, the loss of a child has devasting implications for both families and communities, as this is a more culturally foreign and misunderstood event.

When assessing the needs of families and their children it may be helpful to use diagnostic categories to determine the appropriate extent of palliative/hospice care and curative/life-prolonging treatments. This NHPCO guide utilizes 4 groups.

1. Group 1: Life-threatening conditions where curative treatment may be feasible but can fail, where access to palliative care services may be beneficial
2. Group 2: Conditions where death is inevitable, but there may be long periods of intensive treatment aimed at prolonging life and maintaining quality of life
3. Group 3: Progressive conditions without curative treatment options, where treatment is palliative after diagnosis and may extend many years
4. Group 4: Irreversible but non-progressive conditions with complex healthcare needs leading to complications and likelihood of premature death

Regardless of what kind of care is deemed appropriate, it is essential to provide family-centered care, where the family and child are viewed as one unit. Medical, spiritual, and psychological care may be carried out through multiple providers including nurses, physicians, pharmacists, specialists, and social workers who should seek to provide continuous care, from diagnosis to bereavement. Care may take place in a variety of settings. Individual preferences, values, and cultural beliefs should be respected, and the family unit should be involved in the goals and plans of care.

This toolkit emphasizes the importance of patient and family-centered care, where the family is widely defined, caregivers have the right to be informed on developing information, decisions are made by the family, siblings are integrated into care, and the patient has access to age appropriate information.

Providers hold a large ethic responsibility, where respect, dignity, and privacy should be highly regarded. Practices such as providing equal access to treatment regardless of financial status, avoiding treatments which may cause an undue burden, providing ethics consultations, avoiding undue influence in decision-making, including children in the decision-making process as they are able, obtaining assent and considering dissent in older children who are capable to make decisions, and addressing conflict between specialists through a bioethics committee are all supported by this NHPCO toolkit.

In planning care, it is important to anticipate pain and symptoms and develop a management plan. All providers should complete annual competencies on pediatric pain management. In each encounter, pain and distress should be addressed. Education on recognizing pain and pain management is beneficial. Additionally, it would be important to consider using age-appropriate non-pharmacologic interventions.

Partnerships are essential for successful management of the child’s health condition, and this may be done through partnerships with schools, social services, specialty healthcare groups, faith groups, and community agencies. The staff within the healthcare setting should receive pediatric-specific orientations, training, and continuing education opportunities. Education should also be provided to on-call staff and volunteers.

Not included in this summary, but worth mentioning is that this NHPCO toolkit offers many practices examples, which demonstrate the complexity and variance of needs children and their families may experience. These practice examples also offer ideas as to how a pediatric palliative care or hospice care program could implement some of the ideals laid out within the toolkit. While we hope this post summarizes the main ideas of the toolkit, we do encourage you to look through these examples and the toolkit itself as you are able.