A perinatal hospice for an unborn child with a life-limiting condition

Abstract

Perinatal hospice is a newly developing model of hospice care, offered to the family in the prenatal period, which provides support, guidance and comfort to families who make the difficult choice to continue a pregnancy after the diagnosis of a fatal fetal anomaly. The model is based on the hospice philosophy of living life fully and enjoying each moment. This article describes a perinatal hospice programme that is currently in place at a hospice home care programme of a children's hospital in the USA. It includes a case example of one family's experience of this programme.

Clinician Perspectives of Barriers in Perinatal Palliative Care

“…Wool (2013a) found physicians and APNs share ethical communalities related to PPC constructs. Some successful programs have used a nurse coordinator to oversee and arrange team meetings, manage referrals both in-house and in the community, and ensure continuity of care (Leuthner & Jones, 2007;Ramer-Chrastek & Thygeson, 2005). The National Consensus Project for Quality Palliative Care (2009) developed guidelines to address barriers and recommends provision of an interdisciplinary team to provide services consistent with a care plan and develop relationships with care takers in the community.…”

Profit Status and Delivery of Hospice Care for Infants: The Mediating Role of Pediatric Knowledge

“…In contrast, families with infants may need highly specialized services, such as infant bereavement and memory-making activities, that are common in perinatal hospice programs but may not be present in current pediatric programs for children. 21,22 It is possible that pediatric experience, on the other hand, may provide increased comfort in working with children of all ages. 23 Future research might explore characteristics of pediatric programs to better understand their components' age group foci, as well as the aspects of pediatric experience that facilitate care for infants.…”

A Descriptive Study Evaluating Perinatal Healthcare Providers' Perspectives of Palliative Programming in 3 Canadian Institutions

“…All sites could consider evaluating other programs currently in existence 10,13,21,57,58 to determine whether aspects of these programs are feasible to implement where they provide care. Utilizing bereavement resources already in existence and developing partnerships with organizations could enhance PPC education and resources available to families (see Table 3).…”