The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

Opportunities for quality improvement in bereavement care at a children's hospital: assessment of interdisciplinary staff perspectives.

This study examined the current state of bereavement care at a university-based children's hospital from the perspective of the interdisciplinary staff. In all, 60 staff members from multiple disciplines participated in in-depth interviews. In at least two-thirds of the interviews, issues related to the bereavement experience of both staff and families emerged and were consistently identified. Themes included: disparities in bereavement care based on relationship factors; logistics of time and space; geographical distances; the different cultures and languages of families; continuity in family follow-up; needs of siblings and other family members; staff communication, cooperation, and care coordination; staff suffering; and education, mentoring, and support for staff. This evidence-based needs assessment furnishes an empirical basis for the design and implementation of bereavement services for both families and staff. It can serve as a template for evaluation at other children's hospitals and thus contribute to the sound and creative development of the field of pediatric palliative care.

Perceptions of discrimination among Mexican American families of seriously ill children.

This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall study. Content analysis of interviews with 13 participants from 11 families who were recruited from two children's hospitals in Northern California resulted in numerous codes and revealed that participants perceived discrimination when they were treated differently from other, usually white, families. They believed they were treated differently because they were Mexican, because they were poor, because of language barriers, or because of their physical appearance. Participants reported feeling hurt, saddened, and confused regarding the differential treatment they received from HCPs who parents perceived "should care equally for all people." They struggled to understand and searched for explanations. Few spoke up about unfair treatment or complained about poor quality of care. Most assumed a quiet, passive position, according to their cultural norms of respecting authority figures by being submissive and not questioning them. Participants did not perceive all HCPs as discriminatory; their stories of discrimination derived from encounters with individual nurses or physicians. However, participants were greatly affected by the encounters, which continue to be painful memories. Despite increasing efforts to provide culturally competent palliative care, there is still need for improvement. Providing opportunities for changing HCPs' beliefs and behaviors is essential to developing cultural competence.

Away from home: experiences of Mexican American families in pediatric palliative care.

In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty--especially with a critically ill child--are needed.

Culturally-sensitive information-sharing in pediatric palliative care.

OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. METHODS: The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged

Family support services in pediatric palliative care.

A fundamental premise of pediatric palliative care is that support is provided not only to the ill child but to the family as well. In doing so, a number of services may be offered to family members throughout the child's illness, at the time of death and into bereavement, such as respite, counseling, expressive therapies, and bereavement support. Support may also be needed for the child's peers at school, church, or on sporting teams. Evidence on family supportive care in pediatric palliative care research is scarce. The majority of existing studies are undertaken with bereaved parents. Although these studies are insightful, further information is needed to understand families' needs along the illness trajectory and to determine whether unmet needs exist.

Conducting a qualitative culture study of pediatric palliative care.

While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.

Introduction of a pediatric palliative care curriculum for pediatric residents.

INTRODUCTION: The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in EOL issues so they could become more comfortable and knowledgeable in caring for children and adolescents with life-threatening illnesses. METHOD: The PPCC consisted of six hour-long sessions run by a clinical psychologist, a licensed social worker, and faculty with experience in EOL care. The curriculum repeated every 6 weeks for 1 year. Residents in the training program at Stanford University rotating through oncology, pulmonology, and pediatric intensive care unit (PICU) were invited to attend. Session topics included: (1) personal coping skills, (2) being a caring professional, (3) recognizing cultural and familial differences, (4) pain management, (5) practical issues, and (6) meeting a bereaved parent. Pretest and posttest surveys with five-point Likert scale questions were used to measure curricular impact. RESULTS: Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions (p

Hospital staff and family perspectives regarding quality of pediatric palliative care.

BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.

Family perspectives on the quality of pediatric palliative care.

BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of deceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif. METHODS: Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up. Four clinical social workers and one clinical psychologist reviewed the participants' responses and identified frequently occurring themes. RESULTS: Several areas of unsatisfactory interactions with staff were identified: confusing, inadequate, or uncaring communications regarding treatment or prognosis; preventable oversights in procedures or policies; failure to include or meet the needs of siblings and Spanish-speaking family members; and inconsistent bereavement follow-up. A discrepancy emerged between the high degree of pain described by the families and parents' perceptions that pain had been managed well. Community hospice programs are frequently poorly prepared to serve pediatric patients. CONCLUSIONS: There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.