The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment.

CONTEXT: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. OBJECTIVES: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. METHODS: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. RESULTS: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [P = 0.05] and inpatient PPC billable full time equivalent staff [P = 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. CONCLUSIONS: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.

Guidance for Pediatric End-of-Life Care.

The final hours, days, and weeks in the life of a child or adolescent with serious illness are stressful for families, pediatricians, and other pediatric caregivers. This clinical report reviews essential elements of pediatric care for these patients and their families, establishing end-of-life care goals, anticipatory counseling about the dying process (expected signs or symptoms, code status, desired location of death), and engagement with palliative and hospice resources. This report also outlines postmortem tasks for the pediatric team, including staff debriefing and bereavement.

Lessons Learned: Identifying Items Felt To Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development.

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.

A Complicated Case of Vaccine Refusal.

Parents in the United States have a legal right to refuse vaccination for their children. There are, however, special circumstances under which the state may compel vaccination against parental wishes. In this Ethics Rounds article, we present the case of a young boy with sickle cell disease who was partially vaccinated against encapsulated bacteria and the ethics of whether to compel complete vaccination before splenectomy.

Bereavement Accommodations in the Classroom: Experiences and Opinions of School Staff.

BACKGROUND: Bereaved children often struggle in the school environment and school personnel often feel inadequately prepared to support them. This pilot study explored the experiences and opinions of school staff regarding approaches to addressing the needs of bereaved students in the classroom. METHODS: Teachers/school personnel (N = 29) completed written open-ended questions about their experiences with bereaved students and opinions regarding a bereavement-focused accommodation (ie, 504) plan. Responses were summarized using qualitative content analysis. RESULTS: Most participants (93%) reported interacting with bereaved students and: (1) providing emotional support; (2) making classroom accommodations; (3) collaborating with the family/community; and (4) referring the student for counseling. Many (72%) expressed interest in a templated bereavement plan (21% did not respond; 7% said no) with education/resources for school personnel and suggested accommodations for students. CONCLUSIONS: Teachers encountering grieving students would welcome a templated bereavement plan to help meet students' needs. Such a plan would allow staff to become more knowledgeable about grief and provide guidance for developing specific strategies to accommodate grieving students both emotionally and academically.

Should We Stop Calling Thanatophoric Dysplasia a Lethal Condition? A Case Report of a Long-Term Survivor.

Thanatophoric dysplasia (TD) is a rare skeletal dysplasia commonly thought to be lethal. In this case report, we discuss a nine-year-old male with TD and review his parents' decision making shortly after their son was born, the technology needed to sustain him, and his parents' perception of his quality of life. We also summarize the clinical course of published long-term survivors with TD. Pediatric Palliative Care teams, especially those conducting perinatal palliative care consultations, are often asked to support families in the face of prognostic uncertainty. Our case report and review of the literature adds to the uncertainty of prognosis in TD and suggests that pediatric palliative care providers should be wary of the label "lethal."

Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope.

Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of legacy making to parents, (2) parent satisfaction, and (3) parent utilization of the project. Design: Eko CORE (Eko Devices, Inc., Berkeley, CA), a digital stethoscope that generates a phonocardiogram, a graphical representation of S1 and S2 heart sounds, was used to record children's heartbeats as they approached end of life. The heartbeat was then overlaid to a song or voice recording or kept as a stand-alone file. An artistic embellishment of the phonocardiogram was also created. Parents were surveyed about their experience with the Music Therapy Heart Sounds (MTHS) program. Twelve parents completed the survey. Setting/subjects: Tertiary care children's hospital. The subjects were bereaved parents. Measurements: Five-question survey. Institutional Review Board review exempt. Results: All respondents would recommend the MTHS program to other families experiencing end-of-life decision making. Forty-two percent (N = 5) heard about the program from pediatric palliative physicians, and 50% (N = 6) heard about it from therapists such as music or child life. The respondents varied in how often they utilized their child's heartbeat recordings: 25% (N = 3) viewed or listened monthly, 33% (N = 4) not at all, 17% (N = 2) almost weekly, 17% less than monthly, and 8% (N = 1) daily. Conclusion: The MTHS program is an easy-to-implement and cost-effective way to perform legacy making that bereaved parents recommend for other families.

A Call to Restore Your Calling: Self-Care of the Emergency Physician in the Face of Life-Changing Stress-Part 4 of 6: Physician Helplessness and Moral Injury.

Many aspects of our health care system in the United States can lead to physicians feeling helpless-an inability to save a dying child, an inability to protect an immunocompromised child from a vaccine-preventable illness because of waning herd immunity, and a burdensome new electronic medical record system that your employer insists you must use. The cumulative effect of these experiences can lead to moral distress and ultimately moral injury. We discuss helplessness, moral distress, and moral injury in the setting of today's practice of emergency medicine and provide concrete recommendations to help providers cope with their own reactions to distressing clinical situations.

Denying renal transplantation to an adolescent medical cannabis user: An ethical case study.

Medical cannabis is now legal in over half of the United States. As more patients adopt this unconventional therapy, it is inevitable that potential transplant recipients will disclose their cannabis use during transplant evaluation. Transplant teams are tasked with the decision to utilize a pressure resource, often with little guidance from international and national professional organizations. Many healthcare providers remain uniformed or misinformed about the risks of cannabis use and organ transplantation. In order to illustrate the multifaceted and complex evaluation of transplant patients using medical cannabis, this article presents the case of a 20-year-old woman recommended for renal transplant who was originally denied active listing due to her medical cannabis use. A review of the literature explores the perceived and actual risks of cannabis use in the immunocompromised patient. Furthermore, a discussion of the ethics of medical cannabis use and organ transplantation is included with recommendations for multidisciplinary transplant teams.

Dyskeratosis Congenita and Oral Cavity Squamous Cell Carcinoma: Report of a Case and Literature Review.

Dyskeratosis congenita is a rare genetic condition of telomerase dysfunction in which patients are at an increased risk of squamous cell carcinoma (SCCa) of the oral cavity. We present here the youngest patient in the literature with a diagnosis of SCCa. We discuss the literature and management of this advanced presentation of SCCa in a child, stressing the importance of palliative care involvement in facilitating medical decision making.

A Call to Restore Your Calling: Self-care of the Emergency Physician in the Face of Life-Changing Stress-Part 1 of 6.

Few practicing emergency physicians will avoid life-changing stressors such as a medical error, personal illness, malpractice litigation, or death of a patient. Many will be unprepared for the toll they will take on their lives. Some may ultimately experience burnout, post-traumatic stress disorder, and suicidal ideation. Medical education, continuing education, and maintenance of certification programs do not teach physicians to recognize helplessness, moral distress, or maladaptive coping mechanisms in themselves. Academic physicians receive little instruction on how to teach trainees and medical students the art of thriving through life-changing stressors in their career paths. Most importantly, handling a life-changing stressor is that much more overwhelming today, as physicians struggle to meet the daily challenge of providing the best patient care in a business-modeled health care environment where profit-driven performance measures (eg, productivity tracking, patient reviews) can conflict with the quality of medical care they wish to provide.Using personal vignettes and with a focus on the emergency department setting, this 6-article series examines the impact life-changing stressors have on physicians, trainees, and medical students. The authors identify internal constraints that inhibit healthy coping and tools for individuals, training programs, and health care organizations to consider adopting, as they seek to increase physician satisfaction and retention. The reader will learn to recognize physician distress and acquire strategies for self-care and peer support. The series will highlight the concept that professional fulfillment requires ongoing attention and is a work in progress.

Retrospective Review of Limitations of Care for Inpatients at a Free-Standing, Tertiary Care Children's Hospital.

Limited studies exist regarding the timing, location, or physicians involved in do-not-resuscitate (DNR) order placement in pediatrics. Prior pediatric studies have noted great variations in practice during end-of-life (EOL) care. This study aims to analyze the timing, location, physician specialties, and demographic factors influencing EOL care in pediatrics. We examined the time preceding and following the implementation of a pediatric palliative care team (PCT) via a 5-year, retrospective chart review of all deceased patients previously admitted to inpatient services. Thirty-five percent (167/471) of the patients in our study died with a DNR order in place. Sixty-two percent of patients died in an ICU following DNR order placement. A difference was noted in DNR order timing between patients on general inpatient units and those discharged to home compared with those in the ICUs (p = 0.02). The overall DNR order rate increased following the initiation of the PCT from 30.8% to 39.2% (p = 0.05), but no change was noted in the rate of death in the ICUs. Our study demonstrates a variation in the timing of death following DNR order placement when comparing ICUs and general pediatric floors. Following the initiation of the PCT, we saw increased DNR frequency but no change in the interval between a DNR order and death.

Palliation in pediatric otorhinolaryngology.

Palliation in pediatric otorhinolaryngology is a rarely discussed but important aspect of care. This review encapsulates current thinking on pediatric palliative care (PC) and demonstrates, through one case, the impact of integrating PC into clinical care. We encourage early consideration of pediatric palliative care approaches for children with complex otorhinolaryngologic disorders.

Palliative Sedation with Oral Medicines in an Infant with Generalized Severe Junctional Epidermolysis Bullosa.

Generalized severe junctional epidermolysis bullosa is a rare mechanobullous skin disorder that is uniformly fatal. We present the case of an infant who received palliative pain management and ultimately proportionate palliative sedation. However, because of the extent of the patient's skin disease, we were unable to provide palliative medication through parenteral routes. We discuss the provision of enteral palliative sedation, including the pharmacology, and creative use of medications to achieve sufficient palliation in this difficult and unique situation.

Use of Telehealth in Pediatric Palliative Care.

OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to access services. We present cases wherein telehealth was used to provide counseling services to patients who would not have been able to receive this service. METHODS: We discuss cases of telehealth use for patient and family counseling in the setting of palliative care and bereavement follow-up. Patients who live a great distance from the hospital with limited access to services were followed by a hospital-based pediatric palliative care team. Patients and families gave feedback after use of telehealth for counseling services. RESULTS: Counseling through telehealth by our hospital-based palliative care social worker was successful for all parties involved: patient, family, and social worker. CONCLUSIONS: Telehealth helps relieve disparity in access to services and care, which is particularly problematic in pediatrics and mental health. For the patients in this case series, it was an effective modality to receive counseling services and meet needs that otherwise would not have been addressed.

Referrals to a new pediatric palliative care team: details of the first 12 months of operation.

BACKGROUND: Although the field of pediatric palliative care (PPC) remains in its infancy, over the past decade it has grown in practice and scope. We report on patient referral patterns to a new PPC team at a free-standing children's hospital. OBJECTIVE: Our aim is to provide a descriptive comparison of the patient population seen by our new program as compared to existing literature. METHODS: We examined our database of patient referral and demographic data and compared our data with published reports. CONCLUSIONS: Our team was operating beyond its predicted year-one volume with a patient population that mirrored larger, more established programs. In an era of growth and acceptance of PPC, hospitals that have undergone a strong needs assessment, significant educational effort, and have a strong prediction of patient volume should expect to be operating at projected capacity quickly.

Cerebral palsy patients discovered dead during sleep: experience from a comprehensive tertiary pediatric center.

OBJECTIVES: It is not uncommon for children with cerebral palsy (CP) to be discovered dead during sleep (DDDS); however, the factors associated with this pattern of mortality remain unknown. The current study aims to describe the mortality associated with children with CP from a single, tertiary care center who were DDDS. METHODS: A retrospective (case-only) design to examine proportionate mortality and patient characteristics and co-morbidities that may be related to children DDDS between 1993 and 2011. RESULTS: There were 177 patients with CP whose deaths were reported to our institution during the study period, of which 19 were DDDS at home. The period proportionate mortality (PPM) was 114.5 per 1000. The average age at time of death was 17 years and 6 months (minimum, 6 years; maximum, 25 years). All but one of the DDDS patients had gastrointestinal feeding tubes, seizure disorders, respiratory disorders, and were non-ambulatory. Very importantly, our DDDS patients manifested clusters of respiratory disorders, namely recurrent aspiration pneumonia (10/19), asthma pneumonitis (4/19), food/vomitius inhalation (6/19), reactive airway disease (16/19), respiratory failure (14/19), chronic bronchitis (7/19), chronic obstructive lung disease (9/19), and nocturnal respiratory insufficiency (16/19). CONCLUSIONS: Respiratory disorders, severe motor disability, seizures, and intellectual status are possible co-morbidities that may be associated with DDDS. There is a need for further study in order to understand what type of monitoring and care (if any) may help prevent DDDS related to these co-morbidities and sleep disorders/abnormalities.