Table 2.

Key Considerations Prior to Home Compassionate Extubation in Infants and Children with the Possibility of Continued Life at Home.

Topic	Things to Consider
1. Medication supply	✓Who will provide initial supply and refill or prescribe new medications if needed (e.g., child lives longer than expected)? Where will they be filled? How will they be discarded after death?
2. Transportation	✓Can the child be taken in private vehicle, or will she require medical transportation? Who will drive? Are there arrangements to transport needed staff and family?
3. Medical equipment	✓Will suction or a portable vent be needed? How will equipment be returned to the hospital after death?
4. Staffing in the child’s home	✓Anticipate all possible psychosocial support staffing needs in the home before/after HCE (e.g., CLS, MSW, chaplain). ✓How long will staff (e.g., nurses) be able to remain in the home? If needed, is there a plan for staff relief? ✓If collaborating with a community home hospice team, is training necessary (e.g., rural hospice team with no pediatric experience)? ✓Consider communication and collaboration with child’s community-based pediatrician as appropriate.
5. Financial and legal	✓HCE may pose additional legal consequences for some stakeholders and as such should be carefully considered. However, this should not be the overriding concern when the focus is on what is best for the child. Consider an ethics consultation if necessary. ✓Ensure insurance or private payment is available to cover the cost of ambulance transport, ventilator, home nursing, IV medications, etc.). Check for gaps in insurance coverage if transitioning to a community-based resource. ✓If child has life insurance plan, death must be designated as due to a disease process rather than as assistance in dying for benefits to be paid. ✓Provide documentation of anticipated death in a format that meets local legal and community standards for advanced directives. These could include MD letter, POLST or other, and vary by jurisdiction. ✓If child is in state custody or foster care, check to see if specific regulations apply.
6. Autopsy and organ donation	✓Ensure family is well informed about organ and tissue donation options and limitations (e.g., cost of autopsy and additional transportation).
7. Anticipatory guidance for the family	✓Prepare family for what they will witness at end of life (i.e., sights, sounds, smells) [28]. Provide information at the appropriate developmental level and paced to match the emotional needs of family members and friends. ✓Discuss feeding and hydration with child’s family in advance. Consider discontinuation of artificial nutrition and hydration in patients who are unconscious, or if likely to cause burdensome symptoms [29]. Consider feeding/hydration to comfort for those who are wakeful and express hunger or thirst. ✓Consider referring parents/staff to additional support/educational resources. Examples are videos Choosing Thomas—Inside a family’s decision to let their son live, if only for a brief time [30] and Making Every Moment Count [31]; the online support site Courageous Parents Network [32], and Cameron’s Arc: Creating a Full Life: Teaching and Resource Guide [33].
8. Prognostication	✓Discuss the likely length of life after extubation, but also prepare for living longer than expected. Confirm family’s wishes to continue care at home versus re-hospitalization or transport to a hospice facility.
9. Plan priorities for the child’s time at home	✓Discuss how family wishes to spend their time at home with the child, incorporating any rituals or important practices, and adjusting the medical plan as needed to accommodate. Plan and allow for legacy activities, such as photos, videos, hand/foot prints, locks of hair, as well as storytelling, reminiscing, etc.
10. Comprehensive assessment of the family’s emotional, psychological and practical capacity for managing the compassionate extubation event in their home.	✓In most instances emergency mental health resources will be unfamiliar with this unique sequence of events. Therefore, the PPC team should be prepared to manage unanticipated emotional or psychological crises that may occur. However, in practice we have not observed this to be a significant concern with careful planning.