Educational Priorities for Providing End-of-Life Care: Parent Perspectives
interpersonal & communication skills; Medical education; Palliative Medicine; Parent perspectives; Pediatric
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.
Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2021-051379" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-051379</a>
Pediatric residents' clinical and educational experiences with end-of-life care
OBJECTIVE: The objective of this study was to document the frequency of pediatric resident experiences with end-of-life care for children and the educational context for these experiences, as well as to determine whether residents deem their preparatory training adequate. METHODS: An Internet-based survey was distributed to all categorical pediatric residents at the Johns Hopkins Children's Center. Survey items asked residents to (1) quantify their experiences with specific responsibilities associated with the death of a pediatric patient, (2) identify their educational experiences, and (3) respond to Likert scale statements of, "I feel adequately trained to... ." The responsibilities were discussion of withdrawal/limitation of life-sustaining therapy, symptom management, declaration of death, discussion of autopsy, completion of a death certificate, seeking self-support, and follow-up with families. RESULTS: Forty (50%) of 80 residents completed the survey. Residents had been present for a mean (+/- SD) of 4.7 (+/- 3.0) patient deaths. More than 50% of residents had participated in discussions of withdrawal/limitation of life-sustaining therapy, symptom management, completing a death certificate, and seeking personal support; however, <50% of residents had been taught how to hold discussions of withdrawal/limitation of life-sustaining therapy, declare death, discuss autopsy, complete a death certificate, and have follow-up with families. Residents did not feel adequately trained in any of these areas. CONCLUSION: Pediatric residents have limited experience with pediatric end-of-life care and highly varied educational experiences and do not feel adequately trained to fulfill the responsibilities associated with providing end-of-life care for children. Overall, this perception does not improve with increased level of training. This study identifies several target areas for curricular intervention that may ultimately improve the end-of-life experience for our pediatric patients and their families and the young physicians who care for them.
2008
McCabe ME; Hunt EA; Serwint JR
Pediatrics
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2007-1657" target="_blank" rel="noreferrer">10.1542/peds.2007-1657</a>
Deaths of pediatric patients: relevance to their medical home, an urban primary care clinic
PedPal Lit; Hospital; statistics & numerical data Primary Health Care Professional-Family Relations Sudden Infant Death; 1998; 2002; Academic Medical Centers Adolescent AdultCause of Death Child Child; and 19 (52%) were identified through the clinic-initiated tracking system for deaths that occurred outside the institution. Only 1 anticipated death occurred in the patient's home. Sixty-six percent of patients h(TRUNCATED); and June 31; and to compare the characteristics of deaths that were sudden; and whether an autopsy was performed. RESULTS: Thirty-six patient deaths were identified between July 1; epidemiology United States%X BACKGROUND: The Institute of Medicine's report When Children Die emphasizes the importance of the medical home in end-of-life care; Hospital-Based; Newborn Male Outpatient Clinics; preexisting medical conditions; Preschool Death FemaleHospital Mortality Hospitals; resident continuity clinic; setting and cause of death; to determine the mechanisms of communication about these deaths; unexpected; Urban/statistics & numerical data Humans Infant Infant; within a clinic population of 7000 patients (average annual mortality rate: 0.13%). Seventeen patient deaths (48%) were identified through the institutional tracking system
2005
Serwint JR; Nellis ME
Pediatrics
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2004-0445" target="_blank" rel="noreferrer">10.1542/peds.2004-0445</a>
The use of standardized patients in pediatric residency training in palliative care: anatomy of a standardized patient case scenario
Humans; Palliative Care; Internship and Residency; Patient Simulation; Non-U.S. Gov't; Research Support; Pediatrics/education
The use of standardized patients (SPs) is an emerging strategy in palliative care education. We have used this strategy to provide pediatric residents with a structured educational experience focused on effectively communicating bad news and concurrently understanding the emotions that they and the parents may experience. This article describes the importance of and process for realistic SP case development explicitly designed to address predetermined educational goals and objectives. Topics addressed include the types of potential SPs that can be utilized, their potential strengths and weaknesses, training issues which include giving constructive feedback, implementation strategies for the case scenarios and evaluation strategies.
2002
Serwint JR
Journal Of Palliative Medicine
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/10966210252785123" target="_blank" rel="noreferrer">10.1089/10966210252785123</a>
The AAP Resilience in the Face of Grief and Loss Curriculum
Adaptation Psychological;
Adult;
Attitude of Health Personnel;
Attitude to Death;
Burnout Professional/prevention & control;
Clinical Competence;
Curriculum;
Education Medical, Graduate/methods;
Female;
Grief;
Humans;
Internship and Residency/methods;
Male;
Pediatrics/education;
Societies Medical;
United States
A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be a key element in transforming times of anxiety and grief into rewarding professional experiences. The need for this curriculum was identified by the American Academy of Pediatrics Section on Medical Students, Residents and Fellowship Trainees. A working group of educators developed this curriculum to address the professional attitudes, knowledge, and skills essential to thrive despite the many stressors inevitable in clinical care. Fourteen modules incorporating adult learning theory were developed. The first 2 sections of the curriculum address the knowledge and skills to approach disclosure of life-altering diagnoses, and the second 2 sections focus on the provider’s responses to difficult patient care experiences and their needs to develop strategies to maintain their own well-being. This curriculum addresses the intellectual and emotional characteristics patient care medical professionals need to provide high-quality, compassionate care while also addressing active and intentional ways to maintain personal wellness and resilience.
Serwint JR; Bostwick S; Burke AE; Church A; Gogo A; Hofkosh D; King M; Linebarger J; McCabe ME; Moon M; Osta A; Rana DT; Sahler OJ; Smith K; Rivera F; Baldwin CD
Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2016-0791">10.1542/peds.2016-0791</a>