More than 650 attendees gathered in San Francisco on September 9 and 10 for the 2016 Palliative Care in Oncology Symposium, focusing on the theme of “Patient-Centered Care Across the Cancer Continuum.” Research presented during the Symposium demonstrated how integrating palliative care into cancer care improves outcomes not only for patients, but for caregivers as well. The Symposium inspired dialogue across medical disciplines and included sessions on the role art can play in in fostering empathy among health care providers.

The rise of the immunotherapy care paradigm

David R. Spigel, MD, of the Sarah Cannon Research Institute, described how immunotherapy has changed the way oncologists care for patients with cancer and outlined the new uncertainties and challenges that accompany this development. Dr. Spigel explained how much is still unknown about the markers that may predict who will respond to immunotherapeutic drugs—possible markers include PD-L1 expression, mutation burden, and mismatch repair. Yet another challenge of the immunotherapy revolution is the introduction of new toxicities. Whereas side effects from immunotherapeutic drugs tend be lower grade than those that arise from chemotherapy, oncologists still need to be aware of possible thyroid and skin abnormalities, as well as grade 3 colitis, which was found in one-fifth of patients receiving combination immunotherapy.

Daniel B. Hinshaw, MD, of the University of Michigan and 2016 Symposium Steering Committee Chair, said the session sparked discussion among attendees about the challenge immunotherapy poses in deciding when to stop treatment and begin supportive care.

“In the context of conventional oncology treatments, when a patient has only a few weeks or months to live, doctors would have a conversation telling the patient that they’re no longer candidates for traditional therapies,” Dr. Hinshaw said. “But that timeline has been turned on its head, as immune-targeted therapies [are being used] in pretty aggressive ways among people who are near death and who might come ‘back’ to life due to the drugs.”

Jamie H. Von Roenn, MD, FASCO, Vice President of Education, Science, and Professional Development at ASCO, echoed Dr. Hinshaw’s view. “What I hope came out of these discussions is the recognition that assumptions about the views of another discipline are not productive,” Dr. Von Roenn said. “Specialists need to speak with each other with curious inquiry and understand each other’s concerns. This level of communication will result in better care, better decisions, and provide the foundation for moving integration of the fields forward.”

Caregiver well-being

Erin E. Kent, PhD, of the National Cancer Institute, presented an analysis of 1,275 caregivers. The data was derived from the 2015 Caregiving in the U.S. report, carried out by the National Alliance for Caregiving, and which estimates that there are 2.8 million caregivers providing care for an adult family member or friend with cancer (Abstract 4). The study showed that caregivers for patients with cancer were 62% more likely to experience a higher burden of care than individuals caring for people with other conditions. Caregivers for patients with cancer also reported spending more hours per week providing care than caregivers for other conditions. In addition, the study found that caregivers for people with cancer were more likely to communicate with health care professionals and that 62% felt the need to advocate on behalf of the patient, compared to 49% of caregivers for people with other conditions.

Harry VanDusen, of Massachusetts General Hospital, described findings from a randomized trial that assessed whether integration of palliative care into the treatment of transplant recipients would be associated with greater quality of life (QOL) and lower depression among the patients’ family caregivers (FCs) compared to usual care alone (Abstract 235). Patients were randomly assigned to receive at least twice-weekly visits between the patient and palliative care team during the transplant hospitalization or palliative care consultation upon request (FCs were permitted but not required to attend). An analysis of the 88 FCs in the intervention group showed improvements in some QOL domains, including better coping (adjusted mean difference 1.01, 95% CI [0.25, 1.77]; p = 0.009) and handling of finances (adjusted mean difference 0.67, 95% CI [0.07, 1.28]; p = 0.029) compared with FCs in the standard-of-care group. FCs in the intervention group also reported lower depression symptoms (adjusted mean difference -1.65, 95% CI [-3.01, -0.29]; p = 0.018).

J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham, gave a general overview of the state of cancer caregiving in the United States and presented the results of a study assessing the ENABLE caregiver intervention. ENABLE (Educate, Nurture, Advise Before Life Ends) provides support to caregivers through three 30- to 60-minute phone calls, monthly check-in calls, and bereavement calls beginning at diagnosis. The phone calls are carried out by advanced practice nurses; both the caregiver and the patient receive calls, although from different nurse-coaches. The study compared the impact of early ENABLE (at diagnosis) versus delayed (12 weeks after diagnosis) and found that early-group caregivers had lower depressed mood (p = 0.02) and lower stress burden (p = 0.01).

Quality improvement in palliative care

Charles F. von Gunten, MD, PhD, of OhioHealth, presented a study showing how a simple quality improvement approach could help oncologists improve patients’ length of stay (LOS) in hospice (Abstract 45). The Oncology Clinical Guidance Council, composed of medical, surgical, gynecologic, and radiation oncologists who set standards of cancer care for the OhioHealth system, were given statistics showing that the average median LOS in their system’s hospice was around 23 days shorter than the national average (21 days vs. 44 days). The Council was then polled for their opinion about ideal length of hospice stay: 67% said 90 days and 27% said 45 days. The Council sent a letter to each oncologist in the system describing the gap between OhioHealth and the national average, and showing each individual oncologist’s outcomes on a graph compared with their colleagues’ individual performance. Ten months following the mailing of the letter, the hospice median LOS had nearly doubled, from 19.7 days to 39.6 days.

Toxicities

A study presented by Hope S. Rugo, MD, of the University of California San Francisco Helen Diller Family Comprehensive Cancer Center, assessed whether 10 mL of commercially available 0.5 mg/5 mL dexamethasone oral solution, started on day 1 of treatment, improved stomatitis symptoms among post-menopausal women receiving everolimus/exemestane for hormone receptor–positive metastatic breast cancer in the SWISH trial (so called because patients swished the solution for 2 minutes and then spit, four times per day; Abstract 189). The study showed that by week 8, the incidence of grade 2 or higher stomatitis among SWISH participants was 2.4%, compared to 33.0% among women who received everolimus/exemestane on the BOLERO-2 trial (95% CI [0.29, 8.24]; p < 0.001).

Association between palliative care and greater well-being

Joseph A. Greer, PhD, of Massachusetts General Hospital, presented data from a randomized trial of 350 patients assessing whether introducing palliative care shortly after a diagnosis of incurable lung or non-colorectal gastrointestinal cancer increases a patient’s overall QOL and coping abilities (Abstract 104). Researchers found that at 24 weeks from baseline, patients assigned to early palliative care had higher QOL (adjusted mean difference 5.36, 95% CI [2.04, 8.69]; p = 0.002), less depression as measured by PHQ-9 (adjusted mean difference -1.17, 95% CI [-2.33, -0.01]; p = 0.048), and were significantly more likely to report using active and engaged coping styles compared to the usual care group (adjusted mean difference 1.09, 95% CI [0.23, 1.96]; p = 0.013). The study also found that early integration of palliative care resulted in more patients engaging in discussions about end-of-life care preferences.

Areej El-Jawahri, MD, of Massachusetts General Hospital, presented a study showing that integrating palliative care into the treatment of patients receiving hematopoietic stem cell transplantation (HCT) improved patient well-being, compared to HCT recipients who received usual care (Abstract 103). The 160-patient study found that at week 2, the intervention led to improvements in QOL (adjusted mean difference 7.73, 95% CI [1.27, 14.19]; p = 0.019), depression (adjusted mean difference -1.74, 95% CI [-3.01, -0.47]; p = 0.008), anxiety (adjusted mean difference -2.26, 95% CI [-3.22, -1.29]; p < 0.001), and symptom burden (adjusted mean difference -6.26, 95% CI [-11.46, -1.05]; p = 0.019). At 3 months post-HCT, the intervention led to improvements in QOL (adjusted mean difference 5.34, 95% CI [0.04, 10.65]; p = 0.048), depression (adjusted mean difference -2.12, 95% CI [-3.42, -0.814]; p = 0.002), and post-traumatic stress disorder (adjusted mean difference -4.35, 95% CI [-7.12, 1.58]; p = 0.002).

Pediatric cancers

During her Keynote Lecture on “The Science of Long-term Toxicity in Pediatric Oncology,” Smita Bhatia, MD, MPH, of the University of Alabama at Birmingham, described findings from a study that identified genetic markers associated with increased risk of morbidity among survivors of childhood cancers. Childhood cancer survivors have a 6-fold higher risk of death compared with the general population. The study found that with increasing doses up to 250 mg/m2 of anthracycline chemotherapy, patients with the CBR3:GG/AA genotype have a much higher risk of developing heart failure compared to those who have the CBR3:GA/AA or AA/AA genotype. Another study also found that survivors of childhood cancers who harbored the single nucleotide polymorphism rs2232228 of the HAS3 gene in the presence of 250 mg/m2 or greater doses of anthracycline chemotherapy had a tremendously greater risk (odds ratio [OR] 39.1) of developing heart failure, compared with those who harbored the heterozygous genotype or wild-type variant (OR 4.9 and 0.6, respectively).

Death With Dignity Act

Charles D. Blanke, MD, FACP, FASCO, of the Oregon Health & Science University, presented findings from a study that drew on publicly available data from the Oregon Health Authority, as well as materials obtained through a supplemental information request, to evaluate usage and trends of the 1997 Oregon Death with Dignity Act (Abstract 44). The study found that between 1998 and 2015, 1,545 patients had lethal prescriptions written, and 991 patients (64%) died from legally prescribed lethal medication. The percentage of prescription recipients dying from drug use per year ranged from 48% to 82%, with no significant trend over time (logistic regression 2-sided p = 0.90). The number of prescriptions written per year increased 12% annually from 1988 to 2013, and 24% every year since then. Among the 991 patients who died from the prescription medication, 5.3% were sent for psychiatric evaluation.

The intersection of palliative care and the arts

Playwright Margaret Edson, whose play Wit portrays the experience of a professor dying from ovarian cancer, also delivered a Keynote Lecture. Ms. Edson discussed how works of art can offer a pathway to seeing, understanding, and empathizing with the experiences of others. “What we’re trying to achieve as human beings—our human project—is to understand one another, to connect with one another...Art is handy for this...it helps us to understand what life is like for one another,” she said.

Lucy Kalanithi, MD, FACP, of Stanford School of Medicine, discussed When Breath Becomes Air, a memoir by her late husband, Paul Kalanithi, MD, which describes his experience following his diagnosis with stage IV lung cancer.

“Dr. Kalanithi shared how she has been able to weave themes from the book into her own medical practice and into her work as an advocate encouraging providers and the general public to think more clearly about confronting mortality,” Dr. Hinshaw said.