Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

18. Integrating Palliative Care with Pediatric Hematology/Oncology

488 Pediatric hematology/oncology is a gratifying field, largely because so many children who have cancer are cured and because health care providers enjoy long-term relationships with children and their families. Both of these facts can make integrating palliative care into pediatric hematology/oncology care particularly challenging, especially when the child is likely to survive. • What essential elements of palliative care should be part of every hematology/oncology practitioner’s skill set? • What added value can a palliative care team bring to an interdisciplinary hematology/oncology team? • How can the disciplines of pediatric hematology/oncology and pediatric palliative care best complement each other’s strengths to provide seamless , comprehensive care to families? This chapter explores these and other elements of palliative care unique to the pediatric hematology/oncology patient and family. While the primary focus of the chapter will be on oncology, children who have severe hematologic conditions (such as sickle cell disease) and their families are another population who benefit from palliative care, and issues surrounding their care will be interwoven throughout the text. Vanessa was a mature 12-year-old when she was diagnosed with stage IV Ewing sarcoma. Because of her disease stage and the known burdens associated with her journey, Vanessa’s oncology team consulted the hospital’s pediatric palliative care team at the time of diagnosis, to help with decision making, establishing goals of care, and anticipatory 18 Integrating Palliative Care with Pediatric Hematology/Oncology Sarah E. Friebert, M.D., Brian Greffe, M.D., and Janice Wheeler, Ed.D. integrating with hematology⁄oncology 489 guidance related to symptom management and quality of life. During Vanessa’s long treatment with chemotherapy and radiation, she always participated in consultations and decisions about her care. The palliative care team provided recommendations to the oncology team to minimize the side effects of Vanessa’s treatment, while preserving her primary relationship with her oncology team. The teams also worked together to provide psychosocial, spiritual, and emotional support to Vanessa’s family, especially her sister. After a year, Vanessa was declared “disease free”; unfortunately, 7 months later, sharp back pains led to further testing, and the evaluation revealed recurrence. Understanding that curative options for recurrent Ewing sarcoma were limited, Vanessa decided she was not willing to undergo “just any old treatment.” Of the available options, Vanessa chose gene therapy treatment at the National Cancer Institute. She was rejected as a candidate because her life expectancy was felt to be too short. The family was devastated. Their palliative care team then engaged the services of a pediatric hospice to provide additional support. The home-based team quickly established a good relationship with Vanessa and her family. Vanessa saw herself as a normal teenager with a limited life span. She dated, entertained friends, pursued her talent in art, and traveled whenever she could. Vanessa received additional radiation treatments for pain and blood transfusions to combat fatigue and promote her overall quality of life. Members of the oncology team, including her primary oncologist, made personal visits to Vanessa as death grew nearer. The palliative care team also made visits, providing additional “eyes and ears” in the home to maximize Vanessa’s symptom control. A close circle of friends and family supported Vanessa on her journey. Throughout the 7-month hospice experience, Vanessa’s pain was well controlled; she died peacefully at home with her parents and sister present. The palliative care and hospice teams continue to offer bereavement support to the family. Vanessa’s mother reflects, “We are changed forever, but we have not lost hope. We are going to be okay.” Now an ardent advocate for the widespread availability of high-quality pediatric palliative care, her mother realizes, “We were at the far end of the bell curve. We had an excellent oncology team, a pediatric palliative care team, a pediatricspeci fic hospice program, a supportive community, and a strong family unit. That should be the goal for the care of every child with a lifethreatening illness, no matter what the outcome is.” 490 special care environments and patient populations Vanessa and her family had good control of symptoms and a continuous relationship with their child’s oncology team throughout the illness. They had access to systematized information that facilitated shared, informed decision making as Vanessa’s condition and prognosis changed. The family realized the importance of involving Vanessa directly in important decision making and ensured that she...