While many patients with cancer can benefit from palliative care to ease symptoms from the disease or its treatment, for children with cancer, especially critically ill children, palliative care can provide an additional layer of medical and emotional support for both young patients and their parents.
Christina K. Ullrich, MD, MPH, FAAHPM
“There is the notion that palliative care means that cure is no longer being pursued, but that is not necessarily the case,” said Christina K. Ullrich, MD, MPH, FAAHPM, Assistant Professor of Pediatrics at Harvard Medical School and Senior Physician in Pediatric Hematology/Oncology and Palliative Care at Dana-Farber Cancer Institute and Boston Children’s Hospital. “Palliative care, especially for children, enables us to provide goal-consistent care taking into account the child’s quality of life, no matter what the treatment goals are.”
The integration of oncology medicine into pediatric palliative care allows families to have more than one goal at a time, explained Dr. Ullrich. The combined approach supports parents’ hopes for a cure, life extension, and a “miracle” through the treatment of the underlying illness, while providing young patients with comfort, quality of life, and the chance to live well by adhering to goal-concordant care and attending to the child’s physical, emotional, and spiritual needs.
Bringing together the primary care medical and palliative care teams may include physicians with advanced training in palliative care, a nurse practitioner with experience in pediatric palliative care, a social worker, and spiritual care services, among others, said Dr. Ullrich. The collaboration ensures that parents have the information and guidance they need to make the best-informed health-care decisions for their child and to help their child live as well as possible, she added.
The ASCO Post talked with Dr. Ullrich about the dual goals of pediatric palliative care and how the integration of the oncology and palliative specialties can support both the physical and emotional needs of children with cancer and their parents.
Integrating Models of Oncology and Palliative Care
How can physicians incorporate pediatric palliative care into their practices?
All oncologists should be incorporating primary palliative care skills into their practices, regardless of whether they have access to a pediatric palliative care team. Those skills include effective communication, the principles of shared decision-making, and attention to symptom management. They are the tenets of palliative care and should be implemented in every oncology practice.
Jamie H. Von Roenn, MD
When and how to integrate a team of pediatric palliative care specialists into an oncology practice depends on several factors, including the level of resources the practice has (low, intermediate, or high); and the child’s health circumstances.
Eduardo Bruera, MD, FAAHPM [Medical Director in the Department of Supportive Care Center at The University of Texas MD Anderson Cancer Center] and his colleagues developed three conceptual models for integrating palliative care programs into oncology care.1 They include the Solo Practice Model, in which the oncologist provides both cancer assessment and treatment and addresses a variety of supportive care issues, such as pain and dyspnea; the Congress Practice Model, in which the oncologist refers patients to various specialties for all supportive care issues; and the Integrated Care Model, in which the oncologist routinely refers patients to palliative care specialists for their supportive care needs.
The Integrated Care Model is the one we should think about when it comes to oncology and palliative care because it allows the oncologist to focus on cancer assessment and treatment, but a palliative care team can be involved as well. And the key is to have palliative care involved early, so it can provide more opportunity to support families and allow time to explain to families that palliative care is not end-of-life care.
At our institution, we use a model of integrative oncology and palliative care for children with very high-risk disease undergoing bone marrow transplantation, children undergoing bone marrow transplantation while they have active disease, or children undergoing transplantation with significant organ impairment, which increases the likelihood of a difficult outcome.
Facilitating Advance Care Planning
Your study in children undergoing stem cell transplantation showed that palliative care was associated with less intervention-focused care and a greater chance of end-of-life communication and advance care preparation.2 How does palliative care in this setting facilitate advance care planning?
One of the main focuses in palliative care is effective and timely communication to delineate the goals of care and ensure the medical care planned is aligned with those goals, while supporting shared decision-making and preparing for potential outcomes. My experience is that having an interdisciplinary palliative care team involved in pediatric oncology gives us the opportunity to discuss with parents what the future may look like for their child’s outcome after transplant and how best to prepare for all possible outcomes while still hoping for the best.
Having those discussions gives parents space to think about what is best for their child and how to make the child’s quality of life as good as possible for as long as possible if the child is unlikely to survive. It also allows for less intervention-focused care and less time spent in the intensive care unit.
“Having an interdisciplinary palliative care team involved in pediatric oncology gives us the opportunity to discuss with parents what the future may look like for their child… and how best to prepare for all possible outcomes while still hoping for the best.”— Christina K. Ullrich, MD, MPH, FAAHPM
Tweet this quote
Children still have significant medical needs after they’ve undergone bone marrow transplantation, and they usually spend a fair amount of time on the bone marrow transplant unit and can form attachments to the medical staff. The hospital becomes a safe setting for many of these patients and their families, and that is one reason why we don’t see more children spending their end of life at home. However, our study showed that even though these children were more likely to die in a medicalized setting—irrespective of the pediatric palliative care they received—they didn’t receive intervention-focused care, such as intubation or cardiopulmonary resuscitation.
Building Effective Communication Skills
How can oncologists improve their communication skills in the pediatric palliative care setting?
Many physicians assume they have excellent communication skills, but being an effective communicator is a learned skill that takes practice to successfully navigate tough conversations. VitalTalk (vitaltalk.org) is an invaluable resource for clinicians interested in improving their communication skills. On the VitalTalk website, physicians can access training videos and tools to help them deliver difficult news and balance that information with hope and realism, address the goals of care, and aid patients in finding acceptance.
Having strong communication skills enables physicians to better prepare parents of children with life-threatening cancer for the possibility of their child’s death and provide them with resources to help them cope with their grief. ■
DISCLOSURE: Dr. Ullrich reported no conflicts of interest.
1. Bruera E, Hui D: Conceptual models for integrating palliative care at cancer centers. J Palliat Med 15:1261-1269, 2012.
2. Ullrich CK, Lehmann L, London WB, et al: End-of-life care patterns associated with pediatric palliative care among children who underwent hematopoietic stem cell transplant. Biol Blood Marrow Transplant 22:1049-1055, 2016.