Palliative care (PC) remains underused both during and after treatment despite established benefits, including improved quality of life, for patients who are undergoing hematopoietic cell transplant (HCT). This may be explained by a belief among physicians that patients have unfavorable perceptions of PC, according to results of a multi-site, cross-sectional survey published in Blood Advances.
Areej El-Jawahri, MD, of Massachusetts General Hospital, and colleagues learned patients undergoing HCT, even those with limited knowledge of the role of PC, actually have positive perceptions of PC. Accordingly, they suggested that educating both doctors and patients about the objectives of PC, as well as educating physicians about patients’ perceptions, can remove barriers and increase use of the service.
The survey included 249 eligible patients recruited from November 2020 to April 2021 from 11 transplant centers across the U.S. Participants’ median age was 58.1; 53% were male, 85.9% were white, 42.2% were diagnosed with multiple myeloma, and 63.1% received an autologous transplant. All participants were three to 12 months post-transplant at the time of the survey, which assessed familiarity with, knowledge of, and perceptions of PC, as well as identified perceived PC needs.
When questioned about their perceptions of patients’ feelings about PC referrals, “the majority of physicians said patients would feel scared, depressed, and hopeless … that patients would think that their doctor has given up on them,” Dr. El-Jawahri said.
Conversely, survey participants reported positive perceptions of PC: 83% of participants (203/246) believed that a PC referral indicated their doctor genuinely cared about their well-being, while 74% (183/246) reported that increased support had a positive effect on their health.
Not all responses were positive: 31%-49% of participants expressed a neutral stance toward their potential impression of a PC referral, while a small number of patients reported they would feel depressed (15%, 36/241), scared (21%, 51/243), stressed (22%, 54/242), or anxious (31%, 75/242) upon receiving a PC referral.
“This demonstrates a lack of knowledge and less familiarity with [PC] and perhaps even an association in a small subset of patients of [PC] with end-of-life care,” Dr. El-Jawahri said.
Additionally, between 29% and 37% of participants reported they were not confident in the accuracy of the statements they were asked about PC. In fact, 35% of participants (85/246) reported uncertainty about whether PC is exclusively for people within the last six months of life, again indicating that some patients conflate PC and hospice care.
Researchers did identify an association between higher knowledge of PC and positive perceptions of it in both a univariate analysis (β=1.07, SE=0.23; p<0.01) and multivariate analysis (β=7.54, SE=1.61; p< 0.01).
Limitations of the study include its cross-sectional nature and the homogeneity of the participant population. Researchers noted PC changes across the illness trajectory and said results should be interpreted within that context. Also, findings may not be generalizable to other patient groups with different demographics, and researchers hope to replicate these findings in more diverse populations.
Although physicians reported feeling reluctant to make PC referrals, patients reported several areas of need for PC, including wanting to prepare now for what may happen in the future (58%, 143/247), needing emotional support (42%, 104/248), and needing spiritual support (34%, 83/247).
“To respond to patient needs, we have an educational goal of training our clinicians and empowering them with a language for how to introduce PC in such a way that allows patients and families to really understand the distinction between [PC] and hospice or end-of-life care,” Dr. El-Jawahri said.
Any conflicts of interest declared by the authors can be found in the original article.
Reference
Barata A, Abrams HR, Meyer CL, et al. What do patients think about palliative care? A national survey of hematopoietic stem cell transplant recipients [published online, 2023 Mar 6]. Blood Adv. doi: 10.1182/bloodadvances.2023009712.
