Providing Culturally Sensitive Palliative Care to Children With Cancer

A Conversation With Justin Baker, MD

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In the fall of 2023, Justin Baker, MD, took on the role of Chief of the Division of Quality of Life and Pediatric Palliative Care and Director of the Quality of Life for All Program, Stanford Medicine Children’s Health, Stanford, California. He formerly worked at St. Jude Children’s Research Hospital, Memphis, as Chief of the Quality of Life and Palliative Care Division. The ASCO Post recently spoke with Dr. Baker about his new role in palliative care for the treatment of children with cancer at Stanford Children’s and the importance of culturally sensitive care for patients and their families.

‘A Natural Fit’

Can you tell us what led you to palliative care, and what was the draw that brought you to Stanford Medicine Children’s Health?

I’ve always held an intrinsic desire to connect with and care for others. From a young age, I knew I wanted to be a pediatrician. And throughout my career, I found immense joy in establishing meaningful connections with my patients and their families.

My path to palliative medicine began 25 years ago. While in medical school and on my pediatric rotation, I met a neuro-oncologist who served as a palliative care physician. At the time, it was an emerging field that I knew relatively little about it. He explained that palliative medicine was quickly evolving into a holistic, compassion-first approach to promoting quality of life while attending to suffering. I felt it was a natural fit for me.

“When communicating with and advocating for families, care teams must recognize that young patients are more than their disease.”

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This past fall, I had the pleasure of joining Stanford Medicine Children’s Health as inaugural Chief of the Division of Quality of Life and Pediatric Palliative Care and Director of the Quality of Life for All Program. Stanford Children’s is well known for its long-standing commitment to advancing pediatric research, treatment, and comprehensive, patient-centered care, as well as a long history of leadership and innovation in pediatric palliative care. With the recent launch of the Stanford Medicine–Lucile Packard Children’s Hospital’s Division of Quality of Life and Pediatric Palliative Care, we believe we can truly create a world-class palliative care program, increasing access to those who need it most.

Palliative vs Hospice Care: Understanding the Differences

How is palliative care different from hospice care? What do you communicate to patients and family members when they assume it only means end-of-life care?

There is a general lack of awareness and understanding between palliative care and hospice care. A commonly held misconception is that both are about care at the end of life. Although hospice care and palliative medicine address patient comfort and quality of life, there are significant distinctions that must be understood when addressing the unique needs and preferences of patients in a timely manner.

Hospice care is typically administered when a patient has a terminal illness and a high likelihood of dying within the next year. (Physicians must certify that the child is within the last 6 months of life, if the disease runs its normal course.) Care is often given in the home or specialty setting, with the goal of providing patients with a comfortable and dignified “good death.” There is a significant difference between hospice care in adults and children. In pediatrics, hospice can be used even when disease-modifying therapies continue to be provided (concurrent care).

Palliative care holistically attends to suffering, promotes quality of life, and affords patients the same level of dignity and comfort. However, a patient can have palliative care involved at any stage of illness, even as they continue receiving cure-directed interventions or treatments for their underlying condition. Palliative care is not exclusive to providing care at the end of life and can be integrated along with individualized care plans while alleviating suffering and addressing a patient’s overall well-being.

When communicating with and advocating for families, care teams must recognize that young patients are more than their disease. All children are complex, multifaceted individuals with unique journeys. This idea is the very foundation of fostering individualized and compassion-centric relationships. The goal of the pediatric palliative care team is to make each day the very best possible for our young patients and their families through a holistic, relationship-based approach to care. Whether celebrating achievements or providing comfort during challenging times, we accompany our patients and families every step of the way.

Children Are More Than Small Adults

What are the unique considerations for palliative care in children vs adults?

Children should not be viewed as small adults. Like pediatric oncology, the application of palliative medicine in children requires careful consideration and attention to the unique physiologic, psychological, and developmental attributes of each child. They require age-appropriate treatments and intervention—and, most importantly, age-appropriate communication. In pediatric palliative care, we deploy a robust interdisciplinary team, including child psychologists, child life specialists, music therapists, social workers, chaplains, and other pediatric therapists, who play critical roles in the holistic care we provide our patients.

For years, families of children with life-limiting or life-threatening conditions faced challenges with Medicaid coverage, often having to choose between curative treatments and hospice services. The options were limited, with many states requiring parents to forgo curative treatments to qualify for hospice care, or vice versa, leaving families ineligible for beneficial interdisciplinary hospice services while pursuing curative treatments. The enactment of the Patient Protection and Affordable Care Act (ACA) changed this landscape significantly. Under the ACA, all state Medicaid programs are mandated to cover both curative and hospice services for children under 21 who meet the eligibility criteria.

Use of palliative care is more common in adults than in children. In contrast to the pediatric demographic, a higher proportion of adults implement palliative care because of advanced illness. Fortunately, a notable percentage of children experience improvement in their condition and “graduate” from palliative programs. We hope to “discharge” a patient from palliative care in the same way we do from oncology, cardiology, or neurology.

Another significant difference centers on autonomy-based decision-making. Minors cannot provide consent for care, and many of our patients are often nonverbal or infants. Consequently, families and guardians become an inextricable part of the care team, sharing invaluable insights that inform our individualized approaches to treatment.

‘A Pallia-Paradigm Shift’

Can you discuss the holistic approach to palliative care?

The holistic approach goes beyond the patient’s symptoms, underlying condition, or disease—addressing the broader continuum of well-being, including the psychological, emotional, spiritual, cultural, and individual needs of each child. Optimal care is incumbent upon meeting all patients where they are while acknowledging the interconnected relationships between these unique attributes.

At Stanford Children’s, we are beginning to work toward redefining the field through what we are calling a “pallia-paradigm shift.” Interdisciplinary teams will be trained, developed, and empowered to proactively integrate palliative care throughout the hospital. Our philosophy of care emphasizes a horizontal integration of specialties across hospitals, ambulatory clinics, and home settings.

This philosophy encompasses three tiers: The first tier uses a consult model for readily addressing clinician and staff concerns. The second tier includes the proactive integration of palliative care within specialty care, such as pediatric oncology. The third tier activates resources to provide education and develop policies that ensure providers are trained and equipped to offer primary palliative care. This strategy ensures that young patients, particularly our high-risk populations and those with greater health disparities, receive timely and comprehensive care.

Culturally Concordant Palliative Care

The Bay Area is a melting pot of diverse languages, cultures, and religions. How does culture impact palliative care, and how does your team navigate these varying dynamics?

Understanding the culture of patients and families experiencing serious illness is critical, and providing culturally concordant palliative care is essential. Humanity is a beautiful concept entrenched with what makes us unique. And the lenses with which we look at culture are incredibly individualized, so we meet all patients where they are and approach each care plan with humble curiosity in an effort to truly connect with our patients and their families.

“Understanding the culture of patients and families experiencing serious illness is critical, and providing culturally concordant palliative care is essential.”

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When patients can effectively communicate with their clinical teams, they are more likely to actively engage and participate in the care-planning process. Language often conveys spiritual and cultural nuances that may not be apparent to the non-native speaker. To ensure our patients and their families feel empowered to advocate for their best interest, we are addressing culture and language barriers through our interdisciplinary team and integrating interpreters into care. We will have a Chief Health Equity officer who will work closely with our palliative team to ensure diverse, comprehensive support follows patients throughout their course of care.

Moving Toward Community-Based Care

What trends or developments do you anticipate within palliative care over the next 5 to 10 years?

Currently, throughout the United States, disparity exists within community-based care. This can result in limited access, quality, and availability of services for various populations. To help bridge this gap, while alleviating stressors for patients and families, there is a growing movement toward community-based care.

Community-based care provides an added layer of patient-centric support by addressing various social determinants that can preclude patients from receiving needed services. Over the next few years, we hope to reach these populations through mobile interdisciplinary care teams trained in palliative medicine. By doing so, we hope to provide an appropriate support network for all our patients within the community and home settings.

Further, the field of pediatric palliative care remains underresourced. One of the gaps involves a lack of subspecialty training for interdisciplinary collaborators. At Stanford Children’s, we plan to create interprofessional fellowship training programs. We will likely start with advance practice providers and social workers and expand the training opportunities to include advanced research training as well as training for our other interdisciplinary team members.

Overall, we need to push for continued education, research, and advocacy when it comes to quality of life. This subject matter is heavy, and at times can be tough to engage in dialogue, but it is a critical conversation to advancing quality of life for all children across the state and our nation. 

DISCLOSURE: Dr. Baker reported no conflicts of interest.

Dr. Baker is Chief of the Division of Quality of Life and Pediatric Palliative Care and Director of the Quality of Life for All Program, Stanford Medicine Children’s Health, Stanford, California.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.