Oncologists frequently approach patients to discuss difficult topics, such as bad news about cancer progression and referrals to palliative care and hospice. To communicate effectively in these difficult situations, it is helpful to assess what the patient knows and wants to know about their disease in general and, specifically, their prognosis. Although some patients fully accept the diagnosis of cancer and cope well, most patients struggle with how best to cope. This struggle often manifests itself with the patient vacillating between unrealistic hopes for longevity while also indicating prognostic awareness by talking about funeral plans. Although this coping is normal, it is difficult for most clinicians to interpret. This article presents a framework for understanding normal patient coping and gives specific examples of how to talk with these patients during difficult transitions, such as times of disease progression, and about referral to hospice and palliative care.
Juliet Jacobsen and Vicki A. Jackson
Daniel E. Lage, Areej El-Jawahri, Charn-Xin Fuh, Richard A. Newcomb, Vicki A. Jackson, David P. Ryan, Joseph A. Greer, Jennifer S. Temel, and Ryan D. Nipp
Background: National guidelines recommend regular measurement of functional status among patients with cancer, particularly those who are elderly or high-risk, but little is known about how functional status relates to clinical outcomes among hospitalized patients with advanced cancer. The goal of this study was to investigate how functional impairment is associated with symptom burden and healthcare utilization and clinical outcomes. Patients and Methods: We conducted a prospective observational study of patients with advanced cancer with unplanned hospitalizations at Massachusetts General Hospital from September 2014 through March 2016. Upon admission, nurses assessed patients’ activities of daily living (ADLs; mobility, feeding, bathing, dressing, and grooming). Patients with any ADL impairment on admission were classified as having functional impairment. We used the revised Edmonton Symptom Assessment System (ESAS-r) and Patient Health Questionnaire-4 to assess physical and psychological symptoms, respectively. Multivariable regression models were used to assess the relationships between functional impairment, hospital length of stay, and survival. Results: Among 971 patients, 390 (40.2%) had functional impairment. Those with functional impairment were older (mean age, 67.18 vs 60.81 years; P<.001) and had a higher physical symptom burden (mean ESAS physical score, 35.29 vs 30.85; P<.001) compared with those with no functional impairment. They were also more likely to report moderate-to-severe pain (74.9% vs 63.1%; P<.001) and symptoms of depression (38.3% vs 23.6%; P<.001) and anxiety (35.9% vs 22.4%; P<.001). Functional impairment was associated with longer hospital length of stay (β = 1.29; P<.001) and worse survival (hazard ratio, 1.73; P<.001). Conclusions: Hospitalized patients with advanced cancer who had functional impairment experienced a significantly higher symptom burden and worse clinical outcomes compared with those without functional impairment. These findings provide evidence supporting the routine assessment of functional status on hospital admission and using this to inform discharge planning, discussions about prognosis, and the development of interventions addressing patients’ symptoms and physical function.
Areej El-Jawahri, Deborah Forst, Alyssa Fenech, Keri O. Brenner, Amanda L. Jankowski, Lauren Waldman, Isabella Sereno, Ryan Nipp, Joseph A. Greer, Lara Traeger, Vicki Jackson, and Jennifer Temel
Background: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients’ perceptions of their treatment goals versus how they perceive their oncologist’s goals, and the association of these views with their psychological distress. Methods: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients’ reports of their treatment goal and their oncologist’s treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients’ psychological symptoms. Results: We found that 61.7% of patients reported that both their treatment goal and their oncologist’s treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist’s goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist’s goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist’s goal was curative. Patients who reported both their goal and their oncologist’s goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist’s goal was curative. Patients with discordant perceptions of their goal and their oncologist’s goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist’s goal were curative. Conclusions: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist’s goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
Ryan D. Nipp, Leah L. Thompson, Brandon Temel, Charn-Xin Fuh, Christine Server, Paul S. Kay, Sophia Landay, Daniel E. Lage, Lara Traeger, Erin Scott, Vicki A. Jackson, Nora K. Horick, Joseph A. Greer, Areej El-Jawahri, and Jennifer S. Temel
Background: Oncologists often struggle with managing the complex issues unique to older adults with cancer, and research is needed to identify patients at risk for poor outcomes. Methods: This study enrolled patients aged ≥70 years within 8 weeks of a diagnosis of incurable gastrointestinal cancer. Patient-reported surveys were used to assess vulnerability (Vulnerable Elders Survey [scores ≥3 indicate a positive screen for vulnerability]), quality of life (QoL; EORTC Quality of Life of Cancer Patients questionnaire [higher scores indicate better QoL]), and symptoms (Edmonton Symptom Assessment System [ESAS; higher scores indicate greater symptom burden] and Geriatric Depression Scale [higher scores indicate greater depression symptoms]). Unplanned hospital visits within 90 days of enrollment and overall survival were evaluated. We used regression models to examine associations among vulnerability, QoL, symptom burden, hospitalizations, and overall survival. Results: Of 132 patients approached, 102 (77.3%) were enrolled (mean [M] ± SD age, 77.25 ± 5.75 years). Nearly half (45.1%) screened positive for vulnerability, and these patients were older (M, 79.45 vs 75.44 years; P=.001) and had more comorbid conditions (M, 2.13 vs 1.34; P=.017) compared with nonvulnerable patients. Vulnerable patients reported worse QoL across all domains (global QoL: M, 53.26 vs 66.82; P=.041; physical QoL: M, 58.95 vs 88.24; P<.001; role QoL: M, 53.99 vs 82.12; P=.001; emotional QoL: M, 73.19 vs 85.76; P=.007; cognitive QoL: M, 79.35 vs 92.73; P=.011; social QoL: M, 59.42 vs 82.42; P<.001), higher symptom burden (ESAS total: M, 31.05 vs 15.00; P<.001), and worse depression score (M, 4.74 vs 2.25; P<.001). Vulnerable patients had a higher risk of unplanned hospitalizations (hazard ratio, 2.38; 95% CI, 1.08–5.27; P=.032) and worse overall survival (hazard ratio, 2.26; 95% CI, 1.14–4.48; P=.020). Conclusions: Older adults with cancer who screen positive as vulnerable experience a higher symptom burden, greater healthcare use, and worse survival. Screening tools to identify vulnerable patients should be integrated into practice to guide clinical care.
Joseph A. Greer, Beverly Moy, Areej El-Jawahri, Vicki A. Jackson, Mihir Kamdar, Juliet Jacobsen, Charlotta Lindvall, Jennifer A. Shin, Simone Rinaldi, Heather A. Carlson, Angela Sousa, Emily R. Gallagher, Zhigang Li, Samantha Moran, Magaret Ruddy, Maya V. Anand, Julia E. Carp, and Jennifer S. Temel
Background: Studies show that early, integrated palliative care (PC) improves quality of life (QoL) and end-of-life (EoL) care for patients with poor-prognosis cancers. However, the optimal strategy for delivering PC for those with advanced cancers who have longer disease trajectories, such as metastatic breast cancer (MBC), remains unknown. We tested the effect of a PC intervention on the documentation of EoL care discussions, patient-reported outcomes, and hospice utilization in this population. Patients and Methods: Patients with MBC and clinical indicators of poor prognosis (n=120) were randomly assigned to receive an outpatient PC intervention (n=61) or usual care (n=59) between May 2, 2016, and December 26, 2018, at an academic cancer center. The intervention entailed 5 structured PC visits focusing on symptom management, coping, prognostic awareness, decision-making, and EoL planning. The primary outcome was documentation of EoL care discussions in the electronic health record (EHR). Secondary outcomes included patient-report of discussions with clinicians about EoL care, QoL, and mood symptoms at 6, 12, 18, and 24 weeks after baseline and hospice utilization. Results: The rate of EoL care discussions documented in the EHR was higher among intervention patients versus those receiving usual care (67.2% vs 40.7%; P=.006), including a higher completion rate of a Medical Orders for Life-Sustaining Treatment form (39.3% vs 13.6%; P=.002). Intervention patients were also more likely to report discussing their EoL care wishes with their doctor (odds ratio [OR], 3.10; 95% CI, 1.21–7.94; P=.019) and to receive hospice services (OR, 4.03; 95% CI, 1.10–14.73; P=.035) compared with usual care patients. Study groups did not differ in patient-reported QoL or mood symptoms. Conclusions: This PC intervention significantly improved rates of discussion and documentation regarding EoL care and delivery of hospice services among patients with MBC, demonstrating that PC can be tailored to address the supportive care needs of patients with longer disease trajectories.
ClinicalTrials.gov identifier: NCT02730858