The use of family conferences in the pediatric intensive care unit.

BACKGROUND: Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision making. OBJECTIVE: The study's objective was to describe the use and content of PICU FCs. DESIGN: The study design was a prospective chart review comparing patients who had conferences with those who did not, and a sub-analysis of patients with chronic care conditions (CCCs). SETTING/SUBJECTS: The study setting was an academic PICU from January 2011 through June 2011. MEASUREMENTS: Medical events under consideration were placement of tracheostomy or gastrostomy tube; initiation of chronic ventilation; palliative care involvement; use of extracorporeal membrane oxygenation, continuous renal replacement, or cardiopulmonary resuscitation; care limitation orders; death; length of stay; and discharge to a new environment. RESULTS: From 661 admissions, we identified 74 conferences involving 49 patients. Sixty-four conferences (86%) were held about 40 patients with CCCs. Having a conference was associated with (p<0.05): length of PICU admission; palliative care involvement; initiation of chronic ventilation; extracorporeal membrane oxygenation; cardiopulmonary resuscitation; death; discharge to a new environment; and care limitation orders. Twenty-nine percent of patients who had a new tracheostomy or gastrostomy tube placed had a conference. We identified two categories of discussion topics: information exchange and future management. CONCLUSIONS: Most identified FCs involved complex patients or patients who faced decisions affecting the child's quality of life or dying. For many patients who faced life changing decisions we did not identify a FC. Further research is needed to understand how to best utilize FCs and less formal conversations.

End-of-life care decisions in the PICU: roles professionals play.

OBJECTIVE: Describe the roles and respective responsibilities of PICU healthcare professionals in end-of-life care decisions faced by PICU parents. DESIGN: Retrospective qualitative study. SETTING: University-based tertiary care children's hospital. PARTICIPANTS: Eighteen parents of children who died in the pediatric ICU and 48 PICU healthcare professionals (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). INTERVENTIONS: In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. MEASUREMENTS AND MAIN RESULTS: We identified end-of-life care decisions that parents face based on descriptions by parents and healthcare professionals. Participants described medical and nonmedical decisions addressed toward the end of a child's life. From the descriptions, we identified seven roles healthcare professionals play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational, and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to healthcare professionals. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents' understanding. The general care coordinator helps facilitate interactions among healthcare professionals in the PICU, among healthcare professionals from different subspecialty teams, and between healthcare professionals and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during, and after dying/death. The point person develops a unique trusting relationship with parents. CONCLUSIONS: Our results describe a framework for healthcare professionals' roles in parental end-of-life care decision making in the pediatric ICU that includes directive, value-neutral, and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents' experiences at the end of a child's life.

Bereavement photography for children: program development and health care professionals' response.

Reports of in-hospital bereavement photography focus largely on stillborns and neonates. Empiric data regarding the implementation of bereavement photography in pediatrics beyond the neonatal period and the impact of such programs on healthcare professionals (HCPs) is lacking. The authors describe the implementation of a pediatric intensive care unit (PICU) bereavement photography program and use questionnaire data from HCPs to describe HCPs' reflections on the program and to identify program barriers. From July 2007 through April 2070, families of 59 (36%) of the 164 patients who died in the PICU participated in our bereavement photography program. Forty questionnaires from 29 HCPs caring for 39 participating patients/families indicated that families seemed grateful for the service (n = 34; 85%) and that the program helped HCPs feel better about their role (n = 30; 70%). Many HCPs disagreed that the program consumed too much of his/her time (n = 34; 85%) and that the photographer made his/her job difficult (n = 37; 92.5%). Qualitative analysis of responses to open-ended questions revealed 4 categories: the program's general value; positive aspects of the program; negative aspects of the program; and suggestions for improvements. Implementing bereavement photography in the PICU is feasible though some barriers exist. HCPs may benefit from such programs.

Pediatric intensive care unit family conferences: one mode of communication for discussing end-of-life care decisions.

OBJECTIVE: To examine clinicians' and parents' reflections on pediatric intensive care unit family conferences in the context of discussion about end-of-life care decision making. DESIGN: Retrospective qualitative study. SETTING: A university-based hospital. PARTICIPANTS: Eighteen parents of children who died in the pediatric intensive care unit and 48 pediatric intensive care unit clinicians (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). INTERVENTIONS: In-depth, semistructured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. MEASUREMENTS AND MAIN RESULTS: We identified comments about family conferences in all clinician focus groups/interviews, except one individual nurse interview, and in 13 of the 18 parent interviews. Comments from parents were sparse compared with those from clinicians. Four topics emerged: purpose, structural aspects, challenges, and suggestions for improvement. We identified three purposes for family conferences: communication between clinicians and parents; communication among clinicians; and support of families. Described structural aspects of family conferences included: preconference planning, communication during conferences, and postconference processing. Challenges noted involved communicating with parents during family conferences, such as: difficulties associated with having multiple services involved; balancing messages of hope and realism; using understandable language; and communicating with non-English-speakers. Participants described additional challenges related to the logistics of organizing family conferences. Suggestions focused on methods to improve communication in, organization of, and preparation for family conferences. CONCLUSIONS: Pediatric intensive care unit clinicians in this study perceive family conferences as having an important role in end-of-life care decision making. The paucity of data from parents, an important finding itself, limits our ability to comment on parents' perceptions of family conferences. Prospective research of pediatric intensive care unit family conferences, with specific attention to parents' experiences and to all aspects of family conferences, including pre- and postconference events, should seek to understand the role and impact of this mode of communication on end-of-life care decision making and to determine the need for improvement to family conferences.

Parental views on withdrawing life-sustaining therapies in critically ill children.

OBJECTIVE: To broaden existing knowledge of pediatric end-of-life decision making by exploring factors described by parents of patients in the pediatric intensive care unit (PICU) as important/influential if they were to consider withdrawing life-sustaining therapies. DESIGN: Quantitative and qualitative analysis of semi-structured one-on-one interviews. SETTING: The PICUs at 2 tertiary care hospitals. PARTICIPANTS: English- or Spanish-speaking parents who were older than 17 years and whose child was admitted to the PICU for more than 24 hours to up to 1 week. INTERVENTION: Semi-structured one-on-one interviews. RESULTS: Forty of 70 parents (57%) interviewed said they could imagine a situation in which they would consider withdrawing life-sustaining therapies. When asked if specific factors might influence their decision making, 64% of parents said they would consider withdrawing life-sustaining therapies if their child were suffering; 51% would make such a decision based on quality-of-life considerations; 43% acknowledged the influence of physician-estimated prognosis in their decision; and 7% said financial burden would affect their consideration. Qualitative analysis of their subsequent comments identified 9 factors influential to parents when considering withdrawing life-sustaining therapies: quality of life, suffering, ineffective treatments, faith, time, financial considerations, general rejection of withdrawing life-sustaining therapies, mistrust/doubt toward physicians, and reliance on self/intuition. CONCLUSION: Parents describe a broad range of views regarding possible consideration of withdrawing life-sustaining therapies for their children and what factors might influence such a decision.

Pediatric residents' and fellows' perspectives on palliative care education.

BACKGROUND: The American Academy of Pediatrics recommends that pediatricians become knowledgeable in and comfortable with providing palliative care. OBJECTIVE: The study goals included: determining the extent of training, knowledge, experience, comfort and competence in palliative care communication and symptom management of pediatric residents and fellows; obtaining residents' and fellows' views on key palliative care concepts; identifying topics and methods for palliative care education; and identifying differences in responses between residents and fellows. DESIGN/METHODS: In academic year 2006-2007 pediatrics residents and fellows completed a survey on: training, experience, knowledge, competence, and comfort in delivering palliative care; palliative care practices; and suggestions for delivering palliative care education. RESULTS: Fifty-two (60%) and 44 (62%) residents and fellows respectively completed the survey. Residents and fellows described none to moderate levels of training, experience, knowledge, competence and comfort in palliative care. Most respondents said they would benefit from more formal palliative care training. Respondents identified discussing prognosis, delivering bad news, and pain control as the three most important areas of needed education. Learning about supporting families spiritually and emotional support for physicians were among the least important educational areas identified. Respondents recommended delivering education via observation, bedside teaching, and participation in multidisciplinary groups. CONCLUSIONS: Efforts to improve education in pediatric palliative care are needed. A palliative care team could facilitate palliative care education through engaging trainees in "real-life" interactions. The role of physicians in providing spiritual support and the need for educating physicians in obtaining emotional support for themselves merit further investigation.

Pediatric End-of-Life Issues and Palliative Care.

Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care.In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information.

Parents' reactions to participating in interviews about end-of-life decision making.

BACKGROUND: Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision making for critically ill children. OBJECTIVE: To examine the reactions of pediatric intensive care unit (PICU) patients' parents to interviews on end-of-life decision making for their child. METHODS: We conducted semistructured interviews on end-of-life decision making with PICU patients' parents from two tertiary care PICUs. We approached 117 parents of 102 patients. Seventy-four parents (63%) of 69 patients participated. RESULTS: Forty-three parents (61%) described the interview as "a good experience," 20 (29%) as "a neutral experience," and 1 (1%) as "a bad experience." The parent who judged the interview negatively stated that, "It bothers me a little bit because my son is [out] there having difficulties and I'm in here and not out there." Fifty-four of 59 parents (92%) said they would participate in another similar interview. Most parents (92%) felt the medical community should continue research on end-of-life decision making. Themes identified from the responses included: emotional reaction to the interviews; exposure to end-of-life decision-making issues; impact on parents' views; and impact on future end-of-life decision making. Parents' comments suggested that many perceived the interviews as beneficial. CONCLUSIONS: This study demonstrates the willingness of many parents of critically ill children to participate in study interviews regarding end-of-life decision making, a topic that most parents felt was important and warranted more research.