Erica C. Kaye, MD, MPH
Cancer is the leading cause of disease-related childhood death. To better serve the special needs of this highly vulnerable patient population, pediatric palliative care teams use a personalized, holistic, and interdisciplinary approach tailored to relieve the physical, psychosocial, and spiritual suffering experienced by children and their families across the illness course and at the end of life. To shed light on recent work in the field of pediatric palliative care, The ASCO Post spoke with pediatric palliative oncology expert Erica C. Kaye, MD, MPH, of St. Jude Children’s Research Hospital, Memphis. Dr. Kaye and her associates recently conducted a study looking at predictors of location of death for children with cancer enrolled on a palliative care service, with the goal of preemptively identifying subgroups of patients at higher risk for dying in the intensive care unit and targeting interventions toward these cohorts to optimize provision of goal-concordant care.
Training and Research Focus
Please tell the readers a bit about your background and work at St. Jude.
I am trained in pediatrics, pediatric hematology/oncology, and hospice and palliative medicine, with a Masters in Public Health focusing on qualitative and mixed methodologies. As a member of the faculty at St. Jude in the Department of Oncology within the Division of Quality of Life and Palliative Care, I serve as a pediatric palliative oncologist caring for children with high-risk cancer and their families throughout the illness trajectory, at the end of life, and during the bereavement period.
Our study found that certain variables—including delayed palliative care involvement—might predict intensive care unit death for children with high-risk cancer.— Erica C. Kaye, MD, MPH
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I also am fortunate to have the opportunity to conduct clinical research at the intersection of pediatric oncology and palliative care. In particular, my research centers on understanding the illness and end-of-life experiences of pediatric palliative oncology patients, investigating novel models for early integration of palliative care into oncology practices, and studying how communication among oncologists, patients, and families informs prognostic awareness, decision-making, end-of-life experiences, and bereavement.
Please tell us a bit about your recent study.
We gathered retrospective data on demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology patients treated at our academic cancer center who died during a 4-year period.1 We then used multinomial logistic regression analysis to identify variables predictive of location of death for children with high-risk cancer. We found higher odds of dying in an intensive care unit setting for patients with Hispanic ethnicity, hematologic malignancy, history of hematopoietic stem cell transplant, multiple prior intensive care unit hospitalizations, receipt of cancer-directed therapy during the last month of life, and palliative care involvement occurring less than 30 days before death. Conversely, lower odds of dying in the intensive care unit were found in patients with hospice involvement or documentation of advance directives at the time of death.
In sum, our study found that certain variables—including delayed palliative care involvement—might predict intensive care unit death for children with high-risk cancer. Preemptive identification of these at-risk patients offers us opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.
What do the data tell us about where children with end-stage cancer die?
In our retrospective pediatric palliative oncology cohort,2 we found that slightly more than half of the patients died in the home setting, and more than one-third died in the hospital setting. Among the hospital subgroup, nearly half of the patients died in the intensive care unit. This latter subgroup concerns us, as patients who die in the intensive care unit often receive a
These studies have taught us that children with cancer experience significant physical and psychological symptoms, including high levels of pain and stress….— Erica C. Kaye, MD, MPH
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high burden of intensive treatments at the end of life.
Very few patients in our cohort died in an inpatient hospice facility; in our experience, patients and families typically prefer to be at home or in a familiar hospital environment at the end of life. Our research has also shown that many hospice facilities are structured to manage end-of-life care for adults and, as such, providers often feel less comfortable managing the needs of dying children.
Suffering in Children With End-Stage Cancer
You note that children who die in high-acuity inpatient settings often experience suffering at the end of life. Please elaborate on the kind of suffering experienced by children with end-stage cancer?
Joanne Wolfe, MD, MPH, Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute, Boston, is a pioneer and leader at the forefront of efforts to investigate patient-reported outcomes in children with advanced cancer. Dr. Wolfe and her team have published multiple papers on this important topic, including seminal publications in TheNew England Journal of Medicine3 in the early 2000s and a follow-up article in the Journal of Clinical Oncology4 a few years ago.
Our research has shown that many hospice facilities are structured to manage end-of-life care for adults, and, as such, providers often feel less comfortable managing the needs of dying children.— Erica C. Kaye, MD, MPH
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These studies have taught us that children with cancer experience significant physical and psychological symptoms, including high levels of pain and stress, across the illness course and particularly during the last 12 weeks of life. Our research group recently published data on the extensive interventions experienced by pediatric palliative oncology patients and their families at the end of life, including multiple hospitalizations, receipt of intensive chemotherapy, mechanical ventilation, invasive procedures such as organ biopsies, paracentesis, thoracentesis, and cardiopulmonary rescuscitation.4 These data raise further concerns about the burden of physical and emotional suffering shouldered by this uniquely vulnerable patient population, particularly during the last weeks or days of life.
Please describe methods and challenges in managing pain in pediatric patients.
We work very closely with an interdisciplinary team to manage pain and other symptoms across the illness journey, including at the end of life. The physicians, nurse practitioners, and nurses on our palliative care team each have specialized training in advanced symptom management, and we are also fortunate to partner with expert anesthesiologists with specialized pain training to provide a wide variety of therapies and interventions tailored to meet individual patient needs. In addition, we work closely with our colleagues in psychiatry, psychology, spiritual care, child life, music therapy, and social work to provide holistic, patient- and family-centered interventions to decrease symptom burden and maximize quality of life.
In rare cases of truly refractory pain at the end of life, we can provide sedation to unconsciousness (sometimes referred to as “palliative sedation”) in the hospital setting, if this intervention aligns with the goals of the patient and family. For patients who wish to die at home, we work closely with community-based hospice agencies to provide 24-7 pain management recommendations.
Chemotherapy at the End of Life
Studies show that about 25% of oncologists deliver chemotherapy to dying patients in the last month of life. Please shed light on that issue in the pediatric setting.
At our center, more than one-third of pediatric palliative oncology patients receive chemotherapy in the last month of life. However, I believe that we must be thoughtful about how we interpret these findings. It’s easy to have a knee-jerk reaction: chemotherapy is toxic; why give it to children who are dying within weeks or days?
Our team walks alongside grieving families throughout the illness course, at the time of death, and across the bereavement journey.— Erica C. Kaye, MD, MPH
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However, we know that administering chemotherapy to select patients at the end of life can help to ease a child’s suffering with regard to both physical and psychological well-being. Research by Dr. Wolfe et al has shown that provision of chemotherapy with a mild side-effect profile has the potential to improve psychological metrics. I think it is important to assess each patient and family to determine individualized risk-benefit ratios for the provision of chemotherapy at the end of life. Ultimately, as pediatric oncologists and palliative care physicians, our primary objective is to understand the goals of our patients and families and to do our best to honor and align with these wishes while providing effective and compassionate care.
Family grief is a natural reaction in this extremely difficult setting. Are there interventions in place to assuage psychosocial distress for parents of dying children?
The loss of a child is unbearable. Our team walks alongside grieving families throughout the illness course, at the time of death, and across the bereavement journey. At our center, our team provides anticipatory guidance about grief prior to the death of a child, as well as assesses families for risk factors for complicated bereavement.
Our institutional grief and bereavement program is led by a psychologist with expertise in grief counseling. Through this program, we provide extensive resources and services, including access to trained bereaved parent mentors, opportunities to participate in legacy-building activities, and an annual Day of Remembrance celebration and memorial, during which families who have lost children to cancer return to our center to honor their children hand in hand with the clinicians who cared for them. ■
DISCLOSURE: Dr. Kaye reported no conflicts of interest.
3. Wolfe J, Grier HE, Klar N, et al: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326-333, 2000.
4 Wolfe J, Orellana L, Ullrich C, et al: Symptoms and distress in children with advanced cancer: Prospective patient-reported outcomes from the PediQuest Study. J Clin Oncol 33:1928-1935, 2015.