Perceptions of the Pediatric Hospice Experience among English- and Spanish-Speaking Families

Abstract

The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

“…Family support (e.g., emotional and practical) 44,49e56 Communication and family-centered care 44,48,50,52,53,56e61 Family goals and decision-making 52,55,57,62 Develop CBPPC care plans that, in addition to medical and nursing interventions, also address family psychosocial, spiritual, emotional, and practical support needs Ensure regular CBPPC provider, volunteer, and respite communication and support for all families caring for their child at home Organizational Characteristics of hospice organizations (e.g., size, ownership status, Medicare certification, accreditation, profit status, and caseload) 63e65 Interdisciplinary hospice services (e.g., provider home visits, pediatric-trained staff, 24-7 access to providers, quality pain/symptom management, traditionally noncovered hospice services such as chemotherapy and total parenteral nutrition) 43 Ensure all hospice providers, or several dedicated hospice providers at each organization at a minimum, maintain regular PPC education and training Build and expand collaborative relationships between inpatient pediatric providers and community-based palliative care providers (and/ or inpatient-based PPC providers and community-based home care pediatric providers) Future research on ideal models of collaboration between inpatient and community-based providers Assign a key worker or primary care coordinator early in child's illness to facilitate communication and continuity of care across medical, social service, and community settings Future research on underresearched areas of U.S. CBPPC (i.e., respite care, volunteer services, and child life therapy) Develop systems for evaluating and monitoring the quality of care provided to children and families who receive CBPPC Community Family socioeconomic and workplace factors (e.g., supportive workplace policies or PPC program benefits) 44,56 Effect of geography on access and utilization (e.g., hospice availability in region) 40,63e65,70 Incorporate questions to understand socioeconomic impact of caring for a child with an LLI/LTI within routine assessment of child/ family Assist families in identifying and seeking appropriate socioeconomic resources Future research on how best to provide care to families living in areas with limited hospice availability, with particular attention to nontraditional models of PPC (e.g., public health models and home telehealth models) Society, policy, and system Concurrent care and hospice eligibility regulations (e.g., Medicaid waiver programs, state-funded programs, Affordable Care Act; expanding prognostic requirement for hospice care) 41 interviewed eight bereaved fathers who noted that the intimacy of the home environment allowed families to develop close relationships with the hospice nurses, who were often viewed as ''part of the family.'' This relationship proved to be a ''sense of relief,'' as fathers felt like they could always call on the hospice nurses for support.…”

“…81 Spanish-and English-speaking families from another study described the importance of hospice provider support in helping the families to normalize the changes they were witnessing in their child, particularly at the time of death. 52 Receiving support from hospice providers allowed families to feel more comfortable with caring for their child at home. Palliative care providers also play important roles in supporting the family after the child's death: one study observed that PPC team members attended the funerals or calling hours for 94% of the children cared for by their program.…”

“…The importance of ongoing quality communication between the family and care team in enabling children to return to and remain at home was reported in several studies. 44,48,50,52,53,57e60,81 Early and honest conversations about advance care planning, 48,61 do-not-resuscitate status, 48 end-of-life care, 59 and goals of care 44,48 that elicit patient and family preferences were found to be important for perceptions of quality of life, 50 quality of care, 52,61 and feelings of support and a sense of choice and control. 53,60,81 Furthermore, effective communication was associated with earlier integration of hospice and palliative care 48,53,57 and decreased hospital admissions.…”

Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents

“…52 Explanations for these discrepancies include community- and individual-level differences in perceptions of hospice services, language, and other sociodemographic variables, such as financial hardship, geographic separation, and intensity of medical needs. 53 …”

Multiple Complex Chronic Conditions and Pediatric Hospice Utilization among California Medicaid Beneficiaries, 2007–2010

“…Although families of children with MCCCs increasingly desire for their children to be pain and symptom free at end of life in the comfort of their home, 11,12 little is known about whether the presence of MCCCs influences families to utilize pediatric hospice services. From the literature on MCCCs at end of life, the findings are sparse and inconsistent.…”