Interdisciplinary Pediatric Palliative Care Team Involvement in Compassionate Extubation at Home: From Shared Decision-Making to Bereavement

Abstract

Little is known about the role of pediatric palliative care (PPC) programs in providing support for home compassionate extubation (HCE) when families choose to spend their child’s end of life at home. Two cases are presented that highlight the ways in which the involvement of PPC teams can help to make the option available, help ensure continuity of family-centered care between hospital and home, and promote the availability of psychosocial support for the child and their entire family, health care team members, and community. Though several challenges to realizing the option of HCE exist, early consultation with a PPC team in the hospital, the development of strategic community partnerships, early referral to home based care resources, and timely discussion of family preferences may help to make this option a realistic one for more families. The cases presented here demonstrate how families’ wishes with respect to how and where their child dies can be offered, even in the face of challenges. By joining together when sustaining life support may not be in the child’s best interest, PPC teams can pull together hospital and community resources to empower families to make decisions about when and where their child dies.

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

“…Parents of terminally ill children often wish for home care [ 45 , 46 ], and there is a not surprisingly a positive correlation between availability of palliative home care and the number of children dying at home [ 9 , 47 , 48 , 49 ]. The interdisciplinary PPC Team involvement in compassionate extubation at home has been explored by Postier et al in this special issue [ 50 ]. Most families regard caring for their dying child as a positive experience [ 45 ].…”

Pediatric Palliative Transport in Critically Ill Children: A Single Center's Experience and Parents' Perspectives

“…The involvement of palliative care early in the clinical course has the potential to offer choice around place of care and death for these children and families. 19,36,38 However, despite statements that urge early referral to palliative services in life threatening illnesses, we note this is often done late in the clinical trajectory or not at all 16 as is reflected by the low proportion of patients in our series who had palliative care involvement. Since then, with increased awareness and better collaboration, we as a unit strive to involve the palliative team much earlier.…”

“…The importance and benefit of an early referral to the palliative care services cannot be stressed enough. 36 Families of children with chronic illnesses and oncologic diseases may be better prepared for end-of-life issues, as highlighted by the lowest ICU LOS prior to palliative transfer in the two oncology patients in our series. In Singapore, we are fortunate that this bridge to provide community-based palliative care is offered by Star PALS (Pediatric Advanced Life Support).…”

Transport Home and Terminal Extubation by Emergency Medical Services: An Example of Innovation in End-of-Life Care

“…Terminal extubation can be performed for patients of any age when appropriate. 4,9,10,12 Although many published case reports have cited physicians 9,12 and respiratory therapists 3,12 as providers who typically perform terminal extubation procedures, the advanced airway management skills of paramedics would allow for proficiency in terminal extubation with minimal additional procedural trainings.…”

“…3 Previous literature has demonstrated the feasibility of at-home terminal extubation performed by critical care and hospice physicians (including fellows and residents) 7e9 together with respiratory therapists. 10 Although transport and provision of critical care for patients outside the hospital is the primary practice of paramedics, 11 there have been no published reports of paramedics performing at-home terminal extubation. This case report will describe a terminal extubation performed by a paramedic under the direct supervision of an Emergency Medical Services (EMS) physician.…”