Situations Involving Children: A Challenge for the Hospice Movement

Abstract

Situations wherein children and their families become involved with problems of dying, death, and bereavement constitute an important challenge for the hospice movement. Such situations represent an opportunity for hospice programs and caregivers to add quality to the lives of vulnerable people, while also growing in their own self-understanding and appreciation. This article surveys three sorts of situations involving children which are appropriate for care in the hospice mode: (1) grieving or bereaved children; (2) adults who are grieving or bereaved in relation to the illness or death of a child; and (3) ill or dying children. Issues to be considered are identified and practical recommendations are offered for those who choose to enter into such care.

Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines

“…We assessed four studies (one mixed-methods and three theoretical studies) that dated from before the 1998 WHO and 2000 AAP guidelines (Corr & Corr, 1985; Ashby et al, 1991; Liben, 1996; Frager, 1997). These papers welcomed the increasing trend toward honest and open communication about dying as a result of the hospice movement for adults, but stressed that the death of children was harder to discuss.…”

“…al 1991; Liben, 1996). Corr and Corr (1985) defined hospice care as a form of palliative care for both terminal and chronic conditions, but failed to explain the difference. Frager (1997) marked a kind of transition point, as this was the first paper among the four being discussed here to explicitly refer to an inclusive model of palliative care that should begin at diagnosis and be available not only for those with an imminently terminal condition, but also for individuals with a life-threatening disease, independent of outcome.…”

Hospice Care and the Bereavement Process in Two Countries: Experience from the United States and the Netherlands

“…Hospice focuses on holistic, palliative inpatient and home care, with emphasis given to pain and symptom management of the physical, psychological, social, and spiritual aspects of the patient's remaining life. While hospice care for the dying is largely for the adult patient, there are an increasing number of programs in the United States for the terminally ill child (Corr andCorr 1985, 1992). Generally speaking, most hospice care patients have cancer; die at home; are funded by Medicare, the federal government's health care subsidy program; are in a not-for-profit hospice an average of twenty-nine days; and die with well-controlled symptoms.…”

Prolonging life by heroic measures: A humanistic existential perspective.

“…Nonetheless, evaluations of particular hospice settings have been attempted (e.g., Brescia, Sadof, & Barstow, 1984). Further, conceptual efforts have considered the similarity between hospice philosophy and Judeo-Christian religious beliefs (e.g., Adams, 1989;Augustine & Kalish, 1975;Spero, 1981), and have raised questions that could refine thought and practice (e.g., Carr & Carr, 1985;O'Connor, Burge, King, & Epstein, 1986;Mor & Hiris, 1983;Palgi, 1983;Pine, 1986).…”