Pediatric palliative oncology: the state of the science and art of caring for children with cancer

PURPOSE OF REVIEW: Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms. RECENT FINDINGS: Research in this emerging field has expanded dramatically over the past several years. This review will focus on advancements within several key areas of the field, specifically regarding investigation of the communication needs and preferences of patients and families, exploration of educational initiatives and interventions to teach PPO principles to clinicians, study of patient-reported and parent-reported tools to better assess and manage refractory symptoms, and development of novel models to integrate palliative care within pediatric oncology. SUMMARY: Research findings in the field of PPO, concurrent with advances in the treatment of pediatric cancer, may help improve survival and quality of life for children with cancer

Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey

BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models of bereavement with a focus on relationships and exploration of parents\u27 perceived meanings of the experience. OBJECTIVES: To further characterize the grief journey of parents whose child died from cancer in order to better identify parents who can benefit from additional bereavement support and design strategies to improve bereavement services for these parents. DESIGN: We conducted focus group sessions with 11 bereaved parents. The parents were given two prompts to describe their grief journey before and after their child\u27s death, and their responses in a narrative form were audio-recorded. The responses were coded and studied independently by semantic content analysis. RESULTS: Collation and analysis of the coded responses to both prompts results in the emergence of four concepts from the parental narratives: (1) description of the grief trajectory and evolution of grief over time, (2) mechanisms of parental coping throughout the grief journey, (3) factors that exacerbate parental grief, and (4) sources of parental support throughout the grief journey. CONCLUSIONS: The narratives highlighted that parents whose child died of cancer experience a unique and evolving form of grief and they wish to continue their bond with the deceased child. We recommend that healthcare providers and institutions incorporate support systems into a comprehensive bereavement program for families of children who die from cancer

Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents\u27 grief journeys

BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child\u27s life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death. METHODS: Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS: Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution\u27s role in the grief journeys of bereaved parents. CONCLUSIONS: Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757-2765. © 2016 American Cancer Society

Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients

BACKGROUND: Adolescent and young adult oncology (AYAO) patients often receive intensive medical care and experience significant symptoms at the end of life (EOL). OBJECTIVE: This study aimed to describe the characteristics of AYAO patients aged 15-26 years who died as inpatients in a hospital and to compare the illness and EOL experiences of AYAO patients who did and did not receive palliative care (PC). DESIGN AND SETTING: A standardized data extraction tool was used to collect information about demographics, treatment, terminal characteristics, and symptoms during the last month of life (LMOL) for 69 AYAO patients who died while hospitalized between 2008 and 2014. MEASUREMENTS AND RESULTS: AYAO patients who died in the hospital required considerable medical and psychosocial care and experienced numerous symptoms during the LMOL. Compared to those patients who received no formal PC services, patients followed by the PC team were less likely to die in the intensive care unit (ICU) (38% vs. 68%, p = 0.024) and less likely to have been on a ventilator (34% vs. 63%, p = 0.028) during the LMOL. They also received fewer invasive medical procedures during the LMOL (median, 1 vs. 3 procedures, p = 0.009) and had a do not resuscitate order in place for a longer time before death (median, 6 vs. two days, p = 0.008). CONCLUSIONS: Involvement of the PC team was associated with the receipt of less intensive treatments and fewer deaths in the ICU

The state of the science for communication training in pediatric oncology: A systematic review

Within the field of pediatric oncology, communication skills training (CST) has been recognized as a high priority by professional and accrediting organizations. However, the effectiveness of formalized CST interventions for pediatric oncology providers remains poorly understood. We systematically searched PubMed, Web of Science, Scopus, and PsycInfo for original research articles assessing the effectiveness and quality of CST interventions targeting pediatric oncology clinicians. From 971 deduplicated references, eight articles representing six communication interventions were eligible for inclusion. This review summarizes the existing literature with respect to CST content, intervention methodology, targeted outcome metrics, measurement tools, short-term and sustained benefits, design biases, and availability of materials to allow for reproduction of interventions. Ultimately, studies on CST in pediatric oncology are few, heterogeneous, and lacking in standardized outcome metrics; however, synthesis of the available literature suggests feasibility and effectiveness. Increased scientific rigor is needed, and specific recommendations to advance the field are described

Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric

CONTEXT: Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. OBJECTIVES: To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. METHODS: PubMed and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity. RESULTS: Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. CONCLUSIONS: Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value

Going straight to the source: A pilot study of bereaved parent-facilitated communication training for pediatric subspecialty fellows

BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education, particularly in the provision of bad news. To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees. PROCEDURE: The authors designed and implemented a pilot communication training seminar in which bereaved parent educators and faculty facilitators led small groups in interactive, role-play scenarios. Surveys incorporating a retrospective preprogram assessment item to account for response-shift bias were used to assess short- and long-term changes in trainee comfort with delivering bad news. RESULTS: Fifteen pediatric fellowship trainees participated in the communication seminar; complete data were available for 12 participants. After accounting for response-shift bias, participants reported significant improvement in overall preparedness, breaking bad news to a patient and family, and including the adolescent or young adult patient in conversations. Additionally, participants reported a significant improvement in their ability to address a patient and family\u27s need for information, emotional suffering at the end of life (EOL), if and when a patient should be included in the conversation, and EOL care decisions. The participant\u27s self-perceived improvement in comfort and preparedness persisted over time. CONCLUSIONS: Communication training for pediatric subspecialty trainees using bereaved parent educators is feasible and effective. Both medical trainee and bereaved parent participants benefited from involvement in this pilot study. Further iterations of this training will be modified to assess objective measures of improvement in trainees\u27 communication skills

The state of the science for communication training in pediatric oncology: A systematic review

Within the field of pediatric oncology, communication skills training (CST) has been recognized as a high priority by professional and accrediting organizations. However, the effectiveness of formalized CST interventions for pediatric oncology providers remains poorly understood. We systematically searched PubMed, Web of Science, Scopus, and PsycInfo for original research articles assessing the effectiveness and quality of CST interventions targeting pediatric oncology clinicians. From 971 deduplicated references, eight articles representing six communication interventions were eligible for inclusion. This review summarizes the existing literature with respect to CST content, intervention methodology, targeted outcome metrics, measurement tools, short-term and sustained benefits, design biases, and availability of materials to allow for reproduction of interventions. Ultimately, studies on CST in pediatric oncology are few, heterogeneous, and lacking in standardized outcome metrics; however, synthesis of the available literature suggests feasibility and effectiveness. Increased scientific rigor is needed, and specific recommendations to advance the field are described

Still Caring for the Family : Condolence Expression Training for Pediatric Residents

CONTEXT: Insufficient communication from the medical team following a child\u27s death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. OBJECTIVES: The objective of this study was to evaluate pediatric residents\u27 levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. METHODS: A cross-sectional, mixed-methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 Accreditation Council for Graduate Medical Education-accredited programs representing varying sizes and geographic regions. RESULTS: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet very very few had formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter; 85% had never made a condolence phone call; and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. CONCLUSIONS: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families