What Is the Role for Palliative Care in Children With Cancer?

Development of Specialty Pediatric Palliative Care in the Context of Pediatric Cancer Care

As recently as 60 years ago, a majority of children who were diagnosed with cancer died from progressive disease. Between 1960 and 1963, the estimated 5-year survival for children aged 0–15 years diagnosed with any form of cancer was 28%. For acute lymphoblastic leukemia, the most common form of childhood cancer, the estimated 5-year survival during this period was 4%. This reality formed the basis for the image of a child with cancer as a dying child. Sea changes in the 1960s and 1970s—namely the rise of multiagent chemotherapy regimens—rewrote the once-certain fate of children with acute lymphoblastic leukemia.

In the 1970s and 1980s, a majority of children diagnosed with cancer and treated with these regimens lived years beyond their diagnosis, many of them “cured,” while a substantial proportion died from progressive disease or complications of treatment. During these decades, the field of psycho-oncology expanded and integrated into the care of children with cancer and their families, seeking to meet the psychological needs engendered by this life-threatening and life-altering illness and increasingly intensive treatments. Anthropologists and psychologists investigated the inner lives and understandings that children possessed about their illnesses, finding that even young children who had not been told about the nature of their illness frequently knew that they were dying and actively participated in mutual pretense with the adults in their lives. These studies ushered in a new era of disclosure to children and greater recognition of the child’s psychological, social, and spiritual needs.

In the 1990s, as more and more children survived cancer, key studies of children who died of cancer and the oncologists who cared for them revealed that physical and psychological suffering was common and inadequately treated at the end of life. In a 1998 survey conducted by the American Society of Clinical Oncology (ASCO), pediatric oncologists reported little formal training in caring for children at end-of-life and high reliance on trial and error to guide the end-of-life care they provided. Furthermore, where once the child with cancer was seen immediately as a dying child, now the challenge was to acknowledge that the child with cancer was approaching end-of-life. This combination of poor symptom control and lack of preparation for death contributed to regrets among families regarding how children had lived their final days. Recognition that children, families, and clinicians were suffering within the existing care paradigm spurred creation of dedicated specialty pediatric palliative care teams at several children’s hospitals as well as the first dedicated training programs.

In 2003, the Institute of Medicine (now the National Academy of Medicine) published the monograph When Children Die , charting a course for enhancing palliative care and end-of-life care for children and families. In the decade that followed, specialty pediatric palliative care programs proliferated at children’s hospitals, where most childhood cancer care is delivered. In 2015, the Institute of Medicine and the American Cancer Society convened a joint workshop, “Comprehensive Cancer Care for Children and Their Families.” Workshop findings included recommendations to reliably integrate primary and specialty pediatric palliative care with disease-directed treatment to promote quality of life throughout the illness trajectory. Studies published in the years since 2015 indicate that early integration of specialty pediatric palliative care into childhood cancer care is acceptable to patients and parents and that primary pediatric palliative care efforts may not be meeting patients’ and parents’ needs.

Current Models of Pediatric Palliative Care for Children With Cancer

As described in the preceding section, primary pediatric palliative care may be delivered by cancer care professionals, ideally with ready access to specialty pediatric palliative care clinicians. Successful primary pediatric palliative care requires that cancer care professionals believe palliative care is important, possess pediatric palliative care knowledge and skills, and have the time and ability to provide pediatric palliative care. Multiple studies conducted over the past two decades suggest that the present state of primary pediatric palliative care is inadequate to meet the needs of children with cancer and their families, though recent advances in education and staffing are encouraging. Most pediatric cancer centers employ at least one social worker and child life specialist. Where available, specialty pediatric palliative care teams incorporate expertise from multiple professions, such as medicine, nursing, social work, psychology, music/art therapies, child life/development, and chaplaincy. Specialty pediatric palliative care strives to be inter professional, meaning that the team collaborates and deliberates, coproducing assessments and management plans. However, the small size of the specialty pediatric palliative care workforce and the scarcity of training opportunities continue to hamper the field’s growth. The number of physicians certified in Hospice and Palliative Medicine (HPM) and pediatrics remains small, and there are fewer than 50 fellowship positions available per year. Formal training opportunities in pediatric palliative care for nursing and social work professionals are also scarce. Many specialty pediatric palliative care teams formed or expanded capacity within the past 5 to 10 years. Psychologists are far less likely than social workers to be integrated into specialty pediatric palliative care teams, and despite the pioneering roles of pediatric psychologists in the field of psycho-oncology, 40% of pediatric cancer programs lack psychologists. Though most specialty pediatric palliative care programs are currently hospital based, there is increasing recognition that specialty pediatric palliative care should be available to children with cancer in the outpatient setting and at home. Home-based specialty pediatric palliative care is conceptualized as distinct from hospice care, as it is not tied to prognosis or life expectancy. Practically speaking, home-based specialty pediatric palliative care and hospice access is severely limited by lack of personnel with comfort and expertise in caring for children.

Palliative Care Needs of Children With Cancer

Palliative care needs of children with cancer can be classified as communication needs, symptom elicitation and management needs, and psychological, social, and spiritual needs.