Palliative care researchers use qualitative data to understand the full picture of patients' lives

The central goal of palliative care is to provide comfort, relieve suffering and improve the quality of life for those dealing with serious illnesses. That care is interdisciplinary. It must be.

Quality of life relates to physical, social, emotional, spiritual and psychological needs. Addressing those needs requires teamwork from physicians and clinicians in a range of disciplines. A care plan might involve acupuncture to relieve treatment side effects, support for the patient’s family, medication to manage pain or an entirely different combination of approaches. Palliative care addresses the whole person, and each individual has unique wants and needs. Pediatric palliative care research is also inherently interdisciplinary.

“Palliative care research requires excellent transdisciplinary collaboration between clinical care and research to  provide and study holistic care,” said Deena Levine, MD, FAAP, director of the Division of Quality of Life & Palliative Care  “We learn from people from different disciplines, but also from people with different training backgrounds, levels of expertise and topical knowledge.”

Palliative care studies often use mixed methods approaches to capture the full picture of what can be subjective outcomes. For example, scales and surveys may provide a foundation for assessing symptom relief, while qualitative research, such as patient interviews and focus groups, helps researchers understand the meaning behind the numbers. 

“In palliative care research, we study questions around whole-person care and the illness experience, which go beyond treatment and cure,” said Erica Kaye, MD, MPH, director of research in the Division of Quality of Life & Palliative Care. “We learn a lot by conducting interviews with individuals. The subjectivity inherent to those interviews is the point — it doesn’t make the science less rigorous; it generates meaningful knowledge. We use qualitative methods to try to capture the what, how and why behind real-world phenomena.”

In addition to better understanding patients’ thoughts, feelings and physical symptoms, qualitative data helps researchers understand why a survey score appears “off.” Levine recalled a situation where a critically ill patient reported low symptom scores on an assessment. A corresponding interview revealed the patient was sedated during the time in question.

“Symptom scores were low because the patient was critically ill, not because they were well,” said Levine. “The qualitative component gives depth to the quantitative data so we can correlate what we see medically in the electronic records and on surveys, and then put the whole story together using interview data. Using that full picture, we tailor our interventions at a patient-care level as well as for future research.”

The benefits of early palliative care integration

While most palliative care research focuses on patients and caregivers, St. Jude researchers  also focus on care integration and physician stress. Given the pressure placed on pediatric oncologists, researchers decided to explore tactics that lower the risk of burnout in that group. Focusing on high-pressure hematopoietic cell transplant (HCT) units, a team led by Levine developed a longitudinal mixed-methods pilot study to assess the impact of meaningful recognition on burnout. Methods included web-based FirGun (altruistic acknowledgment) training for participants, surveys conducted at baseline and eight weeks and interviews.

Survey results showed participants felt less nervous and stressed at eight weeks, had less difficulty coping and less emotional exhaustion. Themes and specific quotes from interviews helped researchers understand the impact of the intervention. For example, one participant said they felt more valued, which gave them confidence.

“We might have missed that valuable perspective if we didn’t capture qualitative data,” said Levine.

That same HCT unit also produced research results that impacted how and when health care organizations implement palliative care. Studies in adult populations have shown that palliative care integration among HCT patients led to less of a decline in quality of life and decreased symptoms of depression and post-traumatic stress disorder. In pediatric populations, caregiver perceptions around palliative care and other barriers have negatively limited its integration into care plans.

Surveying 60 parents and patients, the study found 85.7% of patients and 73.4% of parents said care teams should focus on quality of life either “a great deal” or “a lot” from the start of therapy. Yet, only about a third (36.7%) of parents and no patients had heard of palliative care. About half of each group said they would have liked to meet with palliative care early in treatment.

Based on these results and observed opportunities for enhanced care through palliative care integration, the St. Jude palliative care team developed and implemented a novel model of palliative care integration for all patients planning to undergo HCT. Soon after the roll-out of this new model, systemic changes were noted; for example, the palliative care team recommended interventions for specific symptoms. Soon, these interventions became the standard of care for all patients on the unit.

“We were able to support patients, families and staff better, as well as improve our collaboration,” said Levine.

A framework for palliative care integration

The HCT study on early palliative care integration is one of several that explore connections between palliative care and pediatric oncology. In 2017, Kaye and two other St. Jude physician-researchers published a paper in the Journal of Clinical Oncology that described the advantages and limitations of a three-tiered embedded model for integrating palliative care into cancer care. That model, currently in use at St. Jude, includes infrastructure and education, trigger-based algorithms for palliative care consultations and oncologist referrals for expert palliative care services.

To determine whether the embedded model would be effective, Marta Salek, MD, MPH, instructor in the Department of Global Pediatric Medicine, published a study to gauge physician interest. The team conducted  24 focus groups with 174 clinicians. Most identified benefits such as earlier integration of palliative care, normalization of the discipline and improved collaboration and communication. Lack of resources and physician reluctance were the primary anticipated barriers.

Navigating difficult conversations at the RIGHTime

Diagnosis, prognosis and palliative care conversations require delicate handling. A conversation delivered in line with patient and family preferences can meaningfully improve their experiences. For these reasons and more, communication science is an essential component of pediatric palliative care research. To that end, Kaye and her team have explored communication from multiple angles.

The U-CHAT (Understanding Communication in Health Care to Achieve Trust) study examined longitudinal conversations between pediatric oncologists, patients with cancer and their families across evolving illness to better understand how clinicians navigate difficult conversations about prognosis in the setting of progressive disease. The RIGHTime observational study expands on that knowledge to gain greater insights about what patients, caregivers and clinicians believe is the best way to share information about prognosis.

Those two studies have led to dozens of published papers related to communication science in pediatric cancer. The RIGHTime study also helped springboard an upcoming pilot study of a novel communication preference visit (CPV) intervention. Co-designed with patients, parents and oncologists, the RIGHTime-CPV study will assess whether it is feasible and acceptable to ask patients and parents how they prefer to hear prognostic information in advance of disease reevaluation discussions in which prognostic disclosure may occur.

“Prior studies suggest that in the absence of clear prognostic communication, parents are more likely to overestimate the likelihood of a cure, and that can lead to making decisions that worsen suffering and regret,” Kaye said. “Conversely, when parents understand prognosis, these children are more likely to receive palliative care and interventions to alleviate suffering.”

To emphasize the point, Kaye mentioned a recent longitudinal study conducted at nine pediatric cancer centers across the United States related to palliative treatment goals. Kaye and her research partners found that the only statistically significant variable associated with parents reporting a primary treatment goal of comfort was the recollection of their child’s oncologist communicating about the prognosis.

Quality care, quality of life

Studies make clear that early integration of palliative care improves the quality of life, reduces symptom burden and optimizes end-of-life care. Palliative care also opens the door for honest, compassionate conversations that address both patients’ and caregivers’ overall well-being.

At St. Jude, evidence — both quantitative and qualitative — has driven the growth of the program as well as helped children facing serious illness receive holistic, multidisciplinary person-centered care. “We demonstrated with research and evidence that palliative care makes a difference for our oncology patients,” said Levine. “That has led to the collaborations necessary to offer palliative care throughout a patient’s care journey.”