Erica C. Kaye

Early Integration of Palliative Care for Children with High‐Risk Cancer and Their Families

Despite increasing data to support pediatric palliative care (PPC) as an integral component of high‐quality care for children with life‐threatening conditions and their families, timely integration of PPC is offered inconsistently to children with high‐risk cancer. In this review, we summarize the growing body of literature in support of early integration of PPC for children with high‐risk cancer and their families, advocating that PPC principles and resources are imperative to holistic cancer‐directed care and rooted in evidence‐based medicine. Finally, we offer possible strategies for optimizing integration of PPC into holistic cancer care for children and families.

Pediatric palliative care in the community

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

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 childs 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.

Management of diffuse intrinsic pontine glioma in children: current and future strategies for improving prognosis

Diffuse intrinsic pontine glioma (DIPG) is one of the deadliest pediatric central nervous system cancers in spite of treatment with radiation therapy, the current standard of care. The outcome of affected children remains dismal despite multiple clinical trials that investigated radiation therapy combined with chemotherapy. Recently, multiple genome-wide studies unveiled the distinct molecular characteristics of DIPGs and preclinical models of DIPG were developed to mimic the human disease. Both of these accomplishments have generated tremendous progress in the research of new therapies for children with DIPG. Here we review some of these promising new strategies.

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

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.

Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program

Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Childrens Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child. This article describes the components of a parent-derived bereavement program and presents early results on the effects of specific program components. The program, under the leadership of the bereavement coordinator, includes clinical and supportive interventions offered throughout the grief journey, parent-created bereavement support materials, and opportunities for parents and families to participate in research, quality improvement initiatives and educational interventions. Parents report that services and interventions provided through the bereavement program are beneficial to families after the death of their child. In addition, both health care providers and bereaved parents report that participation in educational interventions positively impacts their experiences as clinicians and parents, respectively. The innovative nature of this parent-driven, comprehensive bereavement program may serve as a paradigm for the development of bereavement programs in the fields of pediatrics, palliative oncology and hospice and palliative medicine.

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

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’ perceived meanings of the experience.

Pieces of Grief

DOI: 10.1200/JCO.2015.62.1334 I struggle to remember Taylor’s face as he died. I piece together kaleidoscope fragments, but they blur in and out of focus: his sunken eyes, the sharp angle of his jaw, his cold fingers, the sucking spaces between his ribs. I’ve grown used to how the broken shards of people become embedded in my subconscious. I am careful—paranoid, even—about handling each memory fragment gingerly, lest it slice into a place within myself where it might linger like a splinter. The end of Taylor’s life intersected with the end of my first year of pediatric hematology-oncology fellowship. Taylor was 15 years old, he had lymphoma, and he was dying. Many of my patients could be reduced to similar sound bites: age, disease, and acuity captured in quick one-liners. Initially, I rebelled against these synopses, injecting flowery language into my verbal and written reports in an effort to capture the spirit of my patients beyond their illnesses. I grew particularly fond of using adjectives like “feisty” or “precocious” to describe my patients, and I gladly accepted the inevitable teasing of my colleagues in return. Yet as I cared for increasing numbers of patients, I found it difficult to genuinely know children and families in a meaningful way that transcended their diseases and treatments. In the late evenings, I would try to circle back to the bedside in search of a few nonmedical moments. I remember these visits vividly: we sang, played board games, talked about life beyond the hospital. Often, I did not begin writing notes until after midnight. It did not take long before this pattern became unsustainable, and I started to unravel. Exhausted and anxious to prove my competence, I learned to prioritize proficiency and productivity. There were too many patients and too few hours in the day, with each shift morphing into a zero-sum game governed by meticulous triage calculations. To maximize efficiency, I mastered the art of collapsing patients into their disparate parts: vital signs, pain scores, input/output, laboratory values, medication doses, imaging studies. Over time, I started to believe that the key to healing my patients lay in these details, if only I were smarter or faster in gathering and deciphering the essential pieces. In the midst of this incessant data collection, I also was a front-seat witness to horror and heartbreak on a daily basis. Each layer of tragedy felt more raw and unbearable than the last, and I struggled to empathize deeply without falling apart. Coping might be easier, I thought, if I could figure out how to strip suffering down to objective, depersonalized data, and then methodically process it. To achieve this goal, I deliberately tried to observe grief from a bird’s-eye view, using distance as a protective shield against the anguish of individual faces and stories. I knew that sadness was intrinsic to my chosen career, and I began to wonder if detachment might be a partial antidote to—or better yet, a preemptive strike against— grief. The culture of oncology has a long history of stigmatizing death and the dying process as well as condemning emotion as weakness. Sensitive to this stigma and eager to fit in, I became preoccupied with learning how to turn my emotions on and off, akin to flipping a light switch. Yet as I ran from one terrible death to another, I struggled to slip into autopilot. Ironically, the more I strove for emotional self-regulation, the more emotionally unbalanced I became. On a subliminal level, I think I was afraid that, should I succeed in turning off my emotions, I might forget how to turn them back on. Or, perhaps worse, I might not want to. Secretly, I envied my colleagues who seemed able to move gracefully between devastating events, their objectivity and empathy unclouded by the surrounding emotional turmoil. I, on the other hand, absorbed the emotions of my patients and their families with an intensity that both blinded and consumed me. In public, I strove tomaintaina facadeofcomposure,busying myself by accounting for every medical detail. Yet privately, I wept in my car on the drive to and from the hospital. In the rare hours that I slept, my nightmares were filled with montages of vital signs and laboratory values splayed across disembodied organs, all of the images nameless and faceless. In retrospect, in my drive to compute medical minutiae, I gradually lost count of what mattered. Faced with relentlessly high patient numbers and acuity, just completing the requisite daily tasks was often unfeasible; finding time or a quiet place to reflect on the life and death of each child simply did JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 33 NUMBER 26 SEPTEMBER 1

Communication with Children with Cancer and Their Families Throughout the Illness Journey and at the End of Life

Skillful communication is imperative to the practice of pediatric oncology and pediatric palliative care. Clear, empathic, and individualized communication facilitates trust and relationship building between clinicians, patients, and families, encourages shared decision-making, and affords clinicians a valuable opportunity to integrate goals of care and quality of life into the holistic management plan. In the context of incurable illness, conversation also may serve as a therapeutic intervention itself, enabling clinicians to reframe hope, alleviate suffering, and mitigate complicated bereavement. Moreover, good communication promotes collaborative interdisciplinary care coordination and continuity, enabling the provision of services, resources, and support across various care locations and throughout the illness trajectory. The importance of providing excellent communication to the families of children with high-risk cancer and other life-threatening illnesses has been emphasized by the American Academy of Pediatrics, the Institute of Medicine, multiple national oncology societies, and experts in pediatric oncology and palliative care. This chapter discusses the benefits of providing effective communication at the intersection of pediatric oncology and palliative care and reviews strategies for achieving high-quality communication between clinicians, patients, and families across a spectrum of challenging clinical scenarios. This chapter also highlights common barriers to effective communication and offers strategies to overcome potential roadblocks, incorporating recommendations from a diverse interdisciplinary team of pediatric palliative care experts.

Illness and end-of-life experiences of children with cancer who receive palliative care

The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC).