Bereaved parent preferences on quality end-of-life care for children with cancer in the South.

PURPOSE: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. METHODS: Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death). RESULTS: Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD = 6.1 years) and a median of 3 years before the interview (range = 1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL. CONCLUSIONS: Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD.

Defining the Denominator for Measuring Quality of End-of-Life Care in Children with Cancer: Results of a Nominal Group Technique.

OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

Bereaved Parents' Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study.

OBJECTIVE: To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity. STUDY DESIGN: We performed secondary analysis of semistructured interviews of bereaved parents' perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework. RESULTS: Most participants were non-Hispanic White (30; 55%), and the most common diagnoses were noncentral nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions. CONCLUSIONS: As FT affected almost all families' EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond.

Racial Disparities in Palliative Care at End-of-Life in Children with Advanced Heart Disease in the South.

OBJECTIVE: To examine specialty pediatric palliative care (SPPC) and end-of-life care for children with advanced heart disease in Alabama, including rates of and disparities in SPPC involvement. STUDY DESIGN: We performed a retrospective study from electronic health records of children (≤21 years at death) who died with advanced heart disease at a single institution between 2012 and 2019 (n = 128). The main outcome was SPPC consult; we assessed clinical and sociodemographic factors associated with SPPC. RESULTS: The median age at death was 6 months (IQR = 1-25 months) with 80 (63%) ≤1 year; 46% were Black and 45% non-Hispanic White. Seventy (55%) children had critical congenital heart disease, 45 (35%) non-critical congenital heart disease, and 13 (10%) acquired heart disease. Twenty-nine children (22%) received SPPC. Children ≤1 year at time of death and Black children were less likely to receive SPPC (aOR [95% CI]: 0.2 [0.1-0.6], reference >1 year; 0.2 [0.1-0.7], reference non-Hispanic White). SPPC was associated with death while receiving comfort-focused care (30.6 [4.5-210]), do not resuscitate orders (8.2 [2.1-31.3]), and hospice enrollment (no children without SPPC care were enrolled in hospice) but not medically intense end-of-life care (intensive care unit admission, mechanical ventilation, hemodialysis, or cardiopulmonary resuscitation) or death outside the intensive care unit. CONCLUSIONS: Children dying with advanced heart disease in Alabama did not have routine SPPC involvement; infants and Black children had lower odds of SPPC. SPPC was associated with more comfort-focused care. Disparities in SPPC utilization for children with advanced heart disease need further examination.