Opportunities for Quality Improvement in Bereavement Care at a Children's Hospital: Assessment of interdisciplinary staff perspectives
JOURNAL OF PALLIATIVE CARE
2012; 28 (1): 28-35
Food, toys, and love: pediatric palliative care.
Current problems in pediatric and adolescent health care
2005; 35 (9): 350-386
The End of Life Experience of Pediatric Heart Transplant Recipients.
Journal of pain and symptom management
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.
View details for Web of Science ID 000302444100005
View details for PubMedID 22582469
Compassionate deactivation of ventricular assist devices in pediatric patients
JOURNAL OF HEART AND LUNG TRANSPLANTATION
2016; 35 (5): 564-567
Despite advances in therapies, many pediatric heart transplant (Htx) recipients will die prematurely. We characterized the circumstances surrounding death in this cohort, including location of death and interventions performed in the final 24 hours.We reviewed all patients who underwent Htx at Lucile Packard Children's Hospital, Stanford, survived hospital discharge, and subsequently died between July 19, 2007 and September 13, 2015. The primary outcome studied was location of death, characterized as inpatient, outpatient, or emergency department. Circumstances of death (withdrawal of life-sustaining treatment, death during resuscitation, or death without resuscitation with/without do not resuscitate) and interventions performed in the last 24 hours of life were also analyzed.Twenty-three patients met the entry criteria. The median age at death was 12 (range 2-20) years, and the median time between transplant and death was 2.8 (range 0.8-11) years. Four (17%) died at home, and three (13%) died in the emergency department. Sixteen (70%) patients died in the hospital, 14 of 16 (88%) of whom died in an intensive care unit. Five of 23 (22%) patients experienced attempted resuscitation. Interventions performed in the last 24 hours of life included intubation (74%), mechanical support (30%), and dialysis (22%). Most patients had a recent outpatient clinical encounter with normal graft function within 60 days of dying.Death in children after Htx often occurs in the inpatient setting, particularly the intensive care unit. Medical interventions, including attempted resuscitation, are common at the end of life. Given the difficulty in anticipating life-threatening events, earlier discussions with patients regarding end-of-life wishes are appropriate, even in those with normal graft function.
View details for DOI 10.1016/j.jpainsymman.2016.12.334
View details for PubMedID 28063864
Palliative care is critical to the changing face of child mortality and morbidity in the United States.
2014; 53 (11): 1030-1031
Burnout in pediatric residents over a 2-year period: a longitudinal study.
2014; 14 (2): 167-172
Despite greatly improved survival in pediatric patients with end-stage heart failure through the use of ventricular assist devices (VADs), heart failure ultimately remains a life-threatening disease with a significant symptom burden. With increased demand for donor organs, liberalizing the boundaries of case complexity, and the introduction of destination therapy in children, more children can be expected to die while on mechanical support. Despite this trend, guidelines on the ethical and pragmatic issues of compassionate deactivation of VAD support in children are strikingly absent. As VAD support for pediatric patients increases in frequency, the pediatric heart failure and palliative care communities must work toward establishing guidelines to clarify the complex issues surrounding compassionate deactivation. Patient, family and clinician attitudes must be ascertained and education regarding the psychological, legal and ethical issues should be provided. Furthermore, pediatric-specific planning documents for use before VAD implantation as well as deactivation checklists should be developed to assist with decision-making at critical points during the illness trajectory. Herein we review the relevant literature regarding compassionate deactivation with a specific focus on issues related to children.
View details for DOI 10.1016/j.healun.2016.03.020
View details for Web of Science ID 000376951900004
View details for PubMedID 27197773
Single parents of children with chronic illness: An understudied phenomenon
JOURNAL OF PEDIATRIC PSYCHOLOGY
2008; 33 (4): 408-421
Burnout is a work-related syndrome characterized by emotional exhaustion (EE), depersonalization (DP), and lack of personal accomplishment (PA). We hypothesized that the transition into an environment of high physical, intellectual, and emotional demands of the medical profession would lead to an increase in the prevalence of burnout in pediatric residents, which would remain high throughout residency.The Maslach Burnout Inventory (MBI) was administered to pediatric residents at Lucile Packard Children's Hospital 6 times between February 2010 and February 2012. These times corresponded to the start of residency, mid-intern year, end-intern year, mid-junior year, end-junior year, and mid-senior year.Mean values of burnout components changed significantly between the start of residency and mid-intern year. EE increased from 15.8 to 24.5 (P < .001), DP increased from 4.5 to 9.2 (P < .001), and PA decreased from 40.2 to 38.3 (P = .04). Similarly, the prevalence of burnout increased from 17% to 46% (P = .012), or 2% to 24% (P = .002) using more restrictive criteria, between the start of residency and mid-intern year. Significant changes in mean scores or prevalence of burnout were not found between any other consecutive times throughout residency.This longitudinal study documented a significant increase in the components of burnout among pediatric residents between the start of residency and mid-intern year, which persisted through the PGY2 and PGY3 years. Further studies are warranted to identify correlates of resident burnout and to develop preventative strategies to reduce its occurrence.
View details for DOI 10.1016/j.acap.2013.12.001
View details for PubMedID 24602580
Introduction of a Pediatric Palliative Care Curriculum for pediatric residents
JOURNAL OF PALLIATIVE MEDICINE
2008; 11 (2): 164-170
To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness.We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning.While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver.There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.
View details for DOI 10.1093/jpepsy/jsm079
View details for Web of Science ID 000254714100010
View details for PubMedID 17906331
Psychotherapy in pediatric palliative care
CHILD AND ADOLESCENT PSYCHIATRIC CLINICS OF NORTH AMERICA
2006; 15 (3): 585-?
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.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.Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions (p = 0.001), access to nonpharmacologic pain resources (p = 0.005), exposure to role models who balance medical professionalism and expression of grief (p = 0.005), ability to address dying patient anxiety (p = 0.01), administer pain medications (p = 0.01), initiate organ donation discussions (p = 0.05), and discuss transition from curative to palliative care (p = 0.05). Survey ratings for the following topics were unchanged: "expression of grief is unprofessional" and "residency stress prohibits the processing of and coping with grief."Pediatric residents who participated in this pilot study felt they learned important skills in pediatric EOL care and enhanced their confidence in their ability to care for dying patients and their families. Interventions like the PPCC may be useful at other institutions and aid in the transition to competency-based training.
View details for DOI 10.1089/jpm.2007.0194
View details for Web of Science ID 000254651600010
View details for PubMedID 18333729
Hospital staff and family perspectives regarding quality of pediatric palliative care
2004; 114 (5): 1248-1252
Psychotherapy for children who have life-threatening illness is unique in its challenges and rich in its rewards. Most of these children enter into psychotherapy because of the stress engendered by the illness rather than more general intrapsychic or interpersonal concerns. The facilitation of psychological adjustment is a common goal and brought about by managing anxiety related to great un-certainty and anticipatory grief. Siblings and other family members are incorporated into the work as they play a pivotal role in sustaining and strengthening emotional resources. Critical losses.around control, personal identity, and interpersonal relationships are common themes throughout the therapeutic process.
View details for DOI 10.1016/j.chc.2006.02.004
View details for Web of Science ID 000239131600005
View details for PubMedID 16797440
A child and parent illustrating non-compliance with treatment: understanding non-compliance with treatment
BULLETIN DU CANCER
2002; 89 (6): 643-647
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.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.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.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.
View details for DOI 10.1542/peds.2003-0857-L
View details for Web of Science ID 000224842700008
View details for PubMedID 15520103
Family perspectives on the quality of pediatric palliative care
ARCHIVES OF PEDIATRICS & ADOLESCENT MEDICINE
2002; 156 (1): 14-19
In children and adolescents non-compliance with treatment is a major concern. To shed light on its mechanisms, we present a family demonstrating non-compliance.B, a 10 year-old boy, treated for medulloblastoma, refused high-dose chemotherapy and Autologous Bone Marrow Transplantation. Six psychotherapeutic interviews with B, his parents and staff resolved the causative issues.B's behavior expressed his parents' ambivalence, despite their informed consent. Their reasons were conscious and unconscious, rational and irrational, linked to both the past and present experiences. The mother was convinced that he would die. The discussions helped both parents to assume their parental role, B perceived their ability to truly accept the treatment and support him.Non-compliance should not be viewed as a child's or parents' intrapsychic problem, but as the result of multi-determined interaction between the child, the parents, the staff interacting with present and past events. When the child's death is a possibility, the parents' ambivalence confuses their understanding and acception of the therapy. The development of confidence between the staff, the child and parents and clear agreement about the goals of therapy is necessary to avoid the occurrence of and escalation of non-compliance, which raises difficult clinical, legal and ethical questions.
View details for Web of Science ID 000176964100011
View details for PubMedID 12135865
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.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.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.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.
View details for Web of Science ID 000173079600005
View details for PubMedID 11772185