The Stability of Treatment Preferences Among Patients With Advanced Cancer.

CONTEXT: Stability of patients' treatment preferences has important implications for decisions about concurrent and future treatment. OBJECTIVES: To examine the stability of treatment preferences and correlates among patients with advanced cancer. METHODS: In this cohort, 104 patients with metastatic cancer, progression after at least one chemotherapy regimen, and an oncologist-estimated life expectancy of six or fewer months participated in structured interviews after clinical visits in which patients' recent scan results were discussed. Interviews were repeated in three monthly follow-ups. At baseline, patients' age, education, sex, race, marital status, insurance status, and type of cancer were documented. At each assessment, patients reported their treatment preferences (i.e., prioritizing life-prolonging vs. comfort), quality of life, and current health status. RESULTS: At baseline (n = 104), 55 (53%) patients preferred life-prolonging care and 49 (47%) preferred comfort care. Patients were followed up for one (n = 104), two (n = 74), or three months (n = 44). Between baseline and Month 1, 84 patients (81%) had stable preferences. During follow-up, preferences of 71 patients (68%) remained stable (equally divided between a consistent preference for life-prolonging and comfort care). Treatment preferences of 33 (32%) patients changed at least once during follow-up. Direction of change was inconsistent. Patients' preferences at baseline strongly predicted preferences at Month 1 (odds ratio = 17.8; confidence interval = 6.7-47.3; P < .001). Description of the current health status at baseline was the only variable significantly associated with stability of preferences at Month 1. CONCLUSION: Two-thirds of patients with advanced cancer had stable preferences. Changes of preferences were often inconsistent and unpredictable. Our findings suggest potential benefits of ongoing communication about preferences.

Chemotherapy Use, End-of-Life Care, and Costs of Care Among Patients Diagnosed With Stage IV Pancreatic Cancer.

CONTEXT: For patients with metastatic cancer and limited life expectancy, potential benefits of chemotherapy must be balanced against harms to quality of life near death and increased out-of-pocket costs of care. OBJECTIVES: To evaluate the association between chemotherapy use by patients with Stage IV pancreatic cancer and health care use and Medicare and out-of-pocket costs in the last 30 days of life. METHODS: We conducted a retrospective cohort study of 3825 patients aged 66 years or older when diagnosed with Stage IV pancreatic cancer in 2006-2011, using the linked Surveillance, Epidemiology, and End Results-Medicare data. Using a propensity score matched sample, we examined associations between initiation of chemotherapy shortly after the metastatic diagnosis (and secondarily, continued chemotherapy use in the last 30 days of life) and health care use and costs (both Medicare payment and patient out-of-pocket costs) in the last 30 days of life. RESULTS: Chemotherapy use was associated with increased rates of hospital admissions (45.0% vs. 29.2%, P < 0.001), emergency department visits (41.3% vs. 27.2%, P < 0.001), and death in a hospital (14.2% vs. 9.1%, P < 0.001); fewer days in hospice care (11.5 days vs. 15.7 days, P < 0.001); and more than 50% increase in patient out-of-pocket costs for care ($1311.5 vs. $841.0, P < 0.001) in the last 30 days of life. Among patients who initiated chemotherapy, more stark differences in these outcomes were found by whether patients received chemotherapy in the last 30 days of life. CONCLUSION: Chemotherapy use among older patients diagnosed with metastatic pancreatic cancer was associated with substantially increased use of health care and higher patient out-of-pocket costs near death.

It Is Not What You Think: Associations Between Perceived Cognitive and Physical Status and Prognostic Understanding in Patients With Advanced Cancer.

CONTEXT: Patients with advanced cancer often overestimate their time left to live. Those who have heightened awareness of their cognitive and physical deficits at the end of life may have a better prognostic understanding. OBJECTIVES: We sought to investigate the extent to which patients' self-reports of physical well-being and cognitive function were associated with prognostic understanding. METHODS: Logistic regression analyzed data from Coping with Cancer II, a National Cancer Institute-funded study of patients with advanced cancer from nine U.S. cancer clinics. Patients with metastatic cancers who had an oncologist-estimated life expectancy of less than six months and did not have significant cognitive impairment were eligible (N = 300). Trained interviewers administered subsets of the McGill Quality of Life and the Functional Assessment of Cancer Therapy-Cognition, Version 2, to measure physical well-being and cognitive complaints. There were four dichotomous outcomes: acknowledgment of their terminal illness; understanding that their diagnosis was late or end stage; belief that life expectancy was months, not years; and prognostic understanding, which was defined as accurate responses to all three questions. Covariates included age and gender. RESULTS: Worse patient-reported physical well-being and cognitive function were independently associated with the patient's acknowledgment of his and/or her terminal illness (adjusted odds ratio 0.91; 95% CI = 0.82, 1.00; P = 0.047 and adjusted odds ratio 1.73; 95% CI = 1.17, 2.55; P = 0.006, respectively). CONCLUSION: Patients who reported worse cognitive function and physical well-being were more aware of their terminal illness than those with better cognitive function.

Being present: oncologists' role in promoting advanced cancer patients' illness understanding.

Realistic illness understanding is essential to an advanced cancer patient's ability to make informed medical decisions at the end of life. This study sought to determine whether advanced cancer patients better understood the late stage of their cancer if an oncologist, compared to other members of the care team, was present to discuss their scan results. Data were derived from a multi-institutional, longitudinal cohort study of patients recruited between 2010 and 2015. Patients (n = 209) with late-stage cancers (metastatic cancers that progressed after at least one chemotherapy regimen) were interviewed before and after clinic visits in which scan results were discussed. Patients reported pre- and postvisit if their cancer was at a late stage. Postvisit, patients reported if they discussed scan results with an oncologist or another oncology provider (i.e., oncology fellow, oncology resident, nurse practitioner, nurse, physician's assistant, or other). Logistic regression analysis was used to determine if the presence of an oncologist during scan results discussions differentially predicted the patients' likelihood of postvisit late-stage illness understanding (LSIU). Propensity weighting was used to correct for sociodemographic imbalances between groups, and previsit LSIU and the presence of multiple providers were controlled for in the logistic regression analyses. After propensity-weighted adjustment and controlling for previsit LSIU and the presence of multiple providers, patients were 2.6 times more likely (AOR = 2.6; 95% CI = 1.2, 6.0; P = 0.021) to report that their disease was late stage if an oncologist was present for the scan results discussion compared to if an oncologist was absent. The presence of an oncologist during scan results discussions was associated with a higher likelihood of patients acknowledging being in a late stage of their disease. These results suggest that oncologist involvement in scan results discussions is associated with advanced cancer patients having better prognostic understanding.

Dying Patient and Family Contributions to Nurse Distress in the ICU.

RATIONALE: Caring for patients at the end of life is emotionally taxing and may contribute to burnout. Nevertheless, little is known about the factors associated with emotional distress in intensive care unit (ICU) nurses. OBJECTIVES: To identify patient and family factors associated with nurses' emotional distress in caring for dying patients in the ICU. METHODS: One hundred nurses who cared for 200 deceased ICU patients at two large academic medical centers in the Northeast United States were interviewed about patients' psychological and physical symptoms, their reactions to those patient experiences (e.g., emotional distress), and perceived factors contributing to their emotional distress. Logistic regression analyses modeled nurses' emotional distress as a function of patient symptoms and care. RESULTS: Patients' overall quality of death (odds ratio [OR], 3.08; 95% confidence interval [CI], 1.31-7.25), suffering (OR, 2.34; CI, 1.03-5.29), and loss of dignity (OR, 2.95; CI, 1.19-7.29) were significantly associated with nurse emotional distress. Some 40.5% (79 of 195) of nurses identified families' fears of patient death, and 34.4% (67 of 195) identified families' unrealistic expectations as contributing to their own emotional distress. CONCLUSIONS: Patients' emotional distress, physical distress, and perceived quality of death are associated with nurse emotional distress. Unrealistic family expectations for the patient may be a source of nurse emotional distress. Improving patients' quality of death, including enhancing their dignity, reducing their suffering, and promoting acceptance of an impending death among family members may improve the emotional health of nurses.