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Background: Patients with peritoneal carcinomatosis (PC) frequently undergo palliative procedures, yet these patients and their caregivers report being unprepared to manage ostomies, drains, and other complex care needs at home. The purpose of this study was to characterize the unique needs of these patients and their caregivers during care transitions., Methods: Patients completed measures of health status and advance care planning, caregivers completed measures of preparedness and burden, and all participants completed measures of depression and anxiety. Participants detailed their experiences in individual, semi-structured interviews. We analyzed data using descriptive statistics and conventional content analysis., Results: Sixty-one patients and 39 caregivers completed baseline measures. Twenty-four (39.3%) patients acknowledged their terminal illness and seven (11.5%) had discussed end-of-life care preferences with clinicians. Most (26/39, 66.7%) caregivers provided daily care. Among caregivers who managed symptoms, few were taught how to do so (6/20, 30%). Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and two caregivers (5.1%) met case criteria for depression. Interview participants described a diagnosis of PC as a turning point for which there is no road map and identified the need for health systems change to minimize suffering., Conclusion: Patients with PC and their caregivers are highly burdened by symptoms and care needs. Patients' prognostic understanding and advance care planning are suboptimal. Interventions that train patients with PC and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to declare., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Context: Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers' communication experiences or the impact of these experiences on patients and caregivers at EOL., Objectives: Investigate cancer caregivers' communication experiences and potential impact on patient and caregiver outcomes., Methods: Semistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes., Results: Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating-often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers' and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers' abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement., Conclusion: Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients' communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: Heightened regulations have decreased opioid prescribing across the United States, yet little is known about trends in opioid access among patients dying of cancer., Methods: Among 270,632 Medicare fee-for-service decedents with poor prognosis cancers, we used part D data to examine trends from 2007 to 2017 in opioid prescription fills and opioid potency (morphine milligram equivalents per day [MMED]) near the end-of-life (EOL), defined as the 30 days before death or hospice enrollment. We used administrative claims to evaluate trends in pain-related emergency department (ED) visits near EOL., Results: Between 2007 and 2017, the proportion of decedents with poor prognosis cancers receiving ≥ 1 opioid prescription near EOL declined 15.5% (relative percent difference [RPD]), from 42.0% (95% CI, 41.4 to 42.7) to 35.5% (95% CI, 34.9 to 36.0) and the proportion receiving ≥ 1 long-acting opioid prescription declined 36.5% (RPD), from 18.1% (95% CI, 17.6 to 18.6) to 11.5% (95% CI, 11.1 to 11.9). Among decedents receiving opioids near EOL, the mean daily dose fell 24.5%, from 85.6 MMED (95% CI, 82.9 to 88.3) to 64.6 (95% CI, 62.7 to 66.6) MMED. Overall, the total amount of opioids prescribed per decedent near EOL (averaged across those who did and did not receive an opioid) fell 38.0%, from 1,075 morphine milligram equivalents per decedent (95% CI, 1,042 to 1,109) to 666 morphine milligram equivalents per decedent (95% CI, 646 to 686). Simultaneously, the proportion of patients with pain-related ED visits increased 50.8% (RPD), from 13.2% (95% CI, 12.7 to 13.6) to 19.9% (95% CI, 19.4 to 20.4). Sensitivity analyses demonstrated similar declines in opioid utilization in the 60 and 90 days before death or hospice, and suggested that trends in opioid access were not confounded by secular trends in hospice utilization., Conclusion: Opioid use among patients dying of cancer has declined substantially from 2007 to 2017. Rising pain-related ED visits suggests that EOL cancer pain management may be worsening., Competing Interests: Andrea C. EnzingerConsulting or Advisory Role: Five Prime Therapeutics (I), Merck (I), Astellas Pharma (I), Lilly (I), Loxo (I), Taiho Pharmaceutical (I), Daiichi Sankyo (I), AstraZeneca (I), Zymeworks (I), Takeda (I), Zymeworks (I), Istari (I), Ono Pharmaceutical (I), Xencor (I), ALX Oncology (I), Bristol-Meyers Squibb (I) David M. CutlerExpert Testimony: MDL—Opioids, MDL—JUUL Alexi A. WrightConsulting or Advisory Role: GlaxoSmithKlineResearch Funding: NCCN/AstraZenecaNo other potential conflicts of interest were reported.

Importance: Measurement of the quality of care is important for alternative payment models in oncology, yet the ability to distinguish high-quality from low-quality care across oncology practices remains uncertain., Objective: To assess the reliability of cancer care quality measures across oncology practices using registry and claims-based measures of process, utilization, end-of-life (EOL) care, and survival, and to assess the correlations of practice-level performance across measure and cancer types., Design, Setting, and Participants: This cross-sectional study used the Surveillance, Epidemiology, and End Results (SEER) Program registry linked to Medicare administrative data to identify individuals with lung cancer, breast cancer, or colorectal cancer (CRC) that was newly diagnosed between January 1, 2011, and December 31, 2015, and who were treated in oncology practices with 20 or more patients. Data were analyzed from January 2018 to December 2020., Main Outcomes and Measures: Receipt of guideline-recommended treatment and surveillance, hospitalizations or emergency department visits during 6-month chemotherapy episodes, care intensity in the last month of life, and 12-month survival were measured. Summary measures for each domain in each cohort were calculated. Practice-level rates for each measure were estimated from hierarchical linear models with practice-level random effects; practice-level reliability (reproducibility) for each measure based on the between-measure variance, within-measure variance, and distribution of patients treated in each practice; and correlations of measures across measure and cancer types., Results: In this study of SEER registry data linked to Medicare administrative data from 49 715 patients with lung cancer treated in 502 oncology practices, 21 692 with CRC treated in 347 practices, and 52 901 with breast cancer treated in 492 practices, few practices had 20 or more patients who were eligible for most process measures during the 5-year study period. Patients were 65 years or older; approximately 50% of the patients with lung cancer and CRC and all of the patients with breast cancer were women. Most measures had limited variability across practices. Among process measures, 0 of 6 for lung cancer, 0 of 6 for CRC, and 3 of 11 for breast cancer had a practice-level reliability of 0.75 or higher for the median-sized practice. No utilization, EOL care, or survival measure had reliability across practices of 0.75 or higher. Correlations across measure types were low (r ≤ 0.20 for all) except for a correlation between the CRC process and 1-year survival summary measures (r = 0.35; P < .001). Summary process measures had limited or no correlation across lung cancer, breast cancer, and CRC (r ≤ 0.16 for all)., Conclusions and Relevance: This study found that quality measures were limited by the small numbers of Medicare patients with newly diagnosed cancer treated in oncology practices, even after pooling 5 years of data. Measures had low reliability and had limited to no correlation across measure and cancer types, suggesting the need for research to identify reliable quality measures for practice-level quality assessments.

Background: Palliative care consultation during serious life-limiting illness can reduce symptom burden and improve quality of care. However, quantifying the impact of palliative care is hindered by the limitations of manual chart review and administrative coding., Objectives: Using novel natural language process (NLP) techniques, we examined associations between palliative care consultations and performance on nationally endorsed metrics for high-quality end-of-life (EOL) care in patients with leptomeningeal disease (LMD) secondary to metastatic breast cancer., Methods: Patients with breast cancer with LMD were identified using administrative billing codes and NLP review of magnetic resonance imaging reports at 2 tertiary care centers between 2010 and 2016. Next, NLP was used to review clinical notes to (1) determine the presence of palliative care consultations and (2) determine the performance of process measures associated with high-quality EOL care, including discussions of goals of care, code status limitations, and hospice. Associations between palliative care consultation and documentation of EOL process measures were assessed using logistic regression., Results: We identified 183 cases of LMD. Median age was 56 (interquartile range [IQR]: 46-64) years and median survival was 150 days (IQR: 67-350). Within 6 months of diagnosis, 88.5% of patients had documentation of ≥1 process measure, including discussions of goals of care (63.4%), code status limitations (62.8%), or hospice (72.1%). Palliative care consultation was a predictor of subsequent documentation of goals of care (odds ratio [OR], 3.15; 95% confidence interval [CI], 1.58-6.27) and hospice discussions (OR, 4.61; 95% CI, 2.12-10.03)., Conclusion: Palliative care involvement is associated with increased performance of EOL process measures in patients with breast cancer with LMD.

Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four process measures in YA cancer decedents' medical records: palliative care involvement, discussions of goals of care, code status, and hospice. Among 2878 YAs, 138 had a recorded date of death. In this group, 54.3% had at least one process measure documented early (31-180 days before death), 18.0% had only late documentation of process measures (0-30 days), and 27.5% had none documented.

The Affordable Care Act (ACA) expanded access to high-quality end-of-life care for Americans with serious illness, including cancer. Before the ACA was enacted in 2010, nearly 715,000 patients died in hospitals annually, despite evidence that most Americans prefer to die at home. Moreover, fewer than half of Medicare beneficiaries used hospice before death, despite evidence that hospice services improve cancer patients' quality of life near death and caregivers' bereavement outcomes. The ACA-stipulated programs and subsequent efforts were designed to address these deficiencies in access to high-quality end-of-life care. However, important gaps in coverage persist. In this article, we highlight the impact of the ACA on end-of-life care for individuals with and without cancer.

Importance: Patients with advanced-stage cancer are receiving increasingly aggressive medical care near death, despite growing concerns that this reflects poor-quality care., Objective: To assess the association of aggressive end-of-life care with bereaved family members' perceptions of the quality of end-of-life care and patients' goal attainment., Design, Setting, and Participants: Interviews with 1146 family members of Medicare patients with advanced-stage lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) who died by the end of 2011 (median, 144.5 days after death; interquartile range, 85.0-551.0 days)., Exposures: Claims-based quality measures of aggressive end-of-life care (ie, intensive care unit [ICU] admission or repeated hospitalizations or emergency department visits during the last month of life; chemotherapy ≤2 weeks of death; no hospice or ≤3 days of hospice services; and deaths occurring in the hospital)., Main Outcomes and Measures: Family member-reported quality rating of "excellent" for end-of-life care. Secondary outcomes included patients' goal attainment (ie, end-of-life care congruent with patients' wishes and location of death occurred in preferred place)., Results: Of 1146 patients with cancer (median age, 76.0 years [interquartile range, 65.0-87.0 years]; 55.8% male), bereaved family members reported excellent end-of-life care for 51.3%. Family members reported excellent end-of-life care more often for patients who received hospice care for longer than 3 days (58.8% [352/599]) than those who did not receive hospice care or received 3 or fewer days (43.1% [236/547]) (adjusted difference, 16.5 percentage points [95% CI, 10.7 to 22.4 percentage points]). In contrast, family members of patients admitted to an ICU within 30 days of death reported excellent end-of-life care less often (45.0% [68/151]) than those who were not admitted to an ICU within 30 days of death (52.3% [520/995]) (adjusted difference, -9.4 percentage points [95% CI, -18.2 to -0.6 percentage points]). Similarly, family members of patients who died in the hospital reported excellent end-of-life care less often (42.2% [194/460]) than those who did not die in the hospital (57.4% [394/686]) (adjusted difference, -17.0 percentage points [95% CI, -22.9 to -11.1 percentage points]). Family members of patients who did not receive hospice care or received 3 or fewer days were less likely to report that patients died in their preferred location (40.0% [152/380]) than those who received hospice care for longer than 3 days (72.8% [287/394]) (adjusted difference, -34.4 percentage points [95% CI, -41.7 to -27.0 percentage points])., Conclusions and Relevance: Among family members of older patients with fee-for service Medicare who died of lung or colorectal cancer, earlier hospice enrollment, avoidance of ICU admissions within 30 days of death, and death occurring outside the hospital were associated with perceptions of better end-of-life care. These findings are supportive of advance care planning consistent with the preferences of patients.

Importance: Advance care planning (ACP) may prevent end-of-life (EOL) care that is nonbeneficial and discordant with patient wishes. Despite long-standing recognition of the merits of ACP in oncology, it is unclear whether participation in ACP by patients with cancer has increased over time., Objectives: To characterize trends in durable power of attorney (DPOA) assignment, living will creation, and participation in discussions of EOL care preferences and to explore associations between ACP subtypes and EOL treatment intensity as reflected in EOL care decisions and terminal hospitalizations., Design, Setting, and Participants: We analyzed prospectively collected survey data from 1985 next-of-kin surrogates of Health and Retirement Study (HRS) participants with cancer who died between 2000 and 2012, including data from in-depth "exit" interviews conducted with the surrogates after the participant's death. The HRS is a nationally representative, biennial, longitudinal panel study of US residents older than 50 years. Trends in ACP subtypes were tested, and multivariable logistic regression models examined for associations between ACP subtypes and measures of treatment intensity., Main Outcomes and Measures: Trends in the surrogate-reported frequency of DPOA assignment, living will creation, and participation in discussions of EOL care preferences; associations between ACP subtypes and both surrogate-reported EOL care decisions and terminal hospitalizations., Results: From 2000 to 2012, there was an increase in DPOA assignment (52% to 74%, P = .03), without significant change in use of living wills (49% to 40%, P = .63) or EOL discussions (68% to 60%, P = .62). Surrogate reports that patients received "all care possible" at EOL increased during the period (7% to 58%, P = .004), and rates of terminal hospitalizations were unchanged (29% to 27%, P = .70). Limiting or withholding treatment was associated with living wills (adjusted odds ratio [AOR], 2.51; 95% CI, 1.53-4.11; P < .001) and EOL discussions (AOR, 1.93; 95% CI, 1.53-3.14; P = .002) but not with DPOA assignment., Conclusions and Relevance: Use of DPOA increased significantly between 2000 and 2012 but was not associated with EOL care decisions. Importantly, there was no growth in key ACP domains such as discussions of care preferences. Efforts that bolster communication of EOL care preferences and also incorporate surrogate decision makers are critically needed to ensure receipt of goal-concordant care.

Purpose: Administration of chemotherapy close to death is widely recognized as poor-quality care. Prior research has focused on predictors and outcomes of chemotherapy administration at the end of life. This study describes processes of chemotherapy discontinuation and examines their relationships with timing before death, hospice referral, and hospital death., Patients and Methods: We reviewed health records of a prospective cohort of 151 patients with newly diagnosed metastatic non-small-cell lung cancer who participated in a trial of early palliative care. Chemotherapy treatments during final regimen were qualitatively analyzed to identify categories of discontinuation processes. We then quantitatively compared predictors and outcomes of the process categories., Results: A total of 144 patients died, with 81 and 48 receiving intravenous (IV) and oral chemotherapies as their final regimen, respectively. Five processes were identified for IV chemotherapy: definitive decisions (19.7%), deferred decisions or breaks (22.2%), disruptions for radiation therapy (22.2%), disruptions resulting from hospitalization (27.2%), and no decisions (8.6%). The five processes occurred at significantly different times before death and, except for definitive decisions, ultimate decisions for no further chemotherapy and referral to hospice were often made months later. Among patients receiving oral chemotherapy, 83.3% (40 of 48) were switched from IV to oral delivery as their final regimen, sometimes concurrent with or even after hospice referral., Conclusion: Date of last chemotherapy is not a proxy for when a decision to stop treatment is made. Patients with metastatic non-small-cell lung cancer stop their final chemotherapy regimen via different processes, which significantly vary in time before death and subsequent end-of-life care., (Copyright © 2015 by American Society of Clinical Oncology.)

Purpose: To date, few studies have examined end-of-life care for patients with ovarian cancer. One study documented increased hospice use among older patients with ovarian cancer from 2000 to 2005. We sought to determine whether increased hospice use was associated with less-intensive end-of-life medical care., Patients and Methods: We identified 6,956 individuals age ≥ 66 years living in SEER areas who were enrolled in fee-for-service Medicare, diagnosed with epithelial ovarian cancer between 1997 and 2007, and died as a result of ovarian cancer by December 2007. We examined changes in medical care during patients' last month of life over time., Results: Between 1997 and 2007, hospice use increased significantly, and terminal hospitalizations decreased (both P < .001). However, during this time, we also observed statistically significant increases in intensive care unit admissions, hospitalizations, repeated emergency department visits, and health care transitions (all P ≤ .01). In addition, the proportion of patients referred to hospice from inpatient settings rose over time (P = .001). Inpatients referred to hospice were more likely to enroll in hospice within 3 days of death than outpatients (adjusted odds ratio, 1.36; 95% CI, 1.12 to 1.66)., Conclusion: Older women with ovarian cancer were more likely to receive hospice services near death and less likely to die in a hospital in 2007 compared with earlier years. Despite this, use of hospital-based services increased over time, and patients underwent more transitions among health care settings near death, suggesting that the increasing use of hospice did not offset intensive end-of-life care., (© 2014 by American Society of Clinical Oncology.)

Purpose: Hematologic cancers are associated with aggressive cancer-directed care near death and underuse of hospice and palliative care services. We sought to explore hematologic oncologists' perspectives and decision-making processes regarding end-of-life (EOL) care., Methods: Between September 2013 and January 2014, 20 hematologic oncologists from the Dana-Farber/Harvard Cancer Center participated in four focus groups regarding EOL care for leukemia, lymphoma, multiple myeloma, and hematopoietic stem-cell transplantation. Focus groups employed a semistructured format with case vignettes and open-ended questions and were followed by thematic analysis., Results: Many participants felt that identifying the EOL phase for patients with hematologic cancers was challenging as a result of the continuing potential for cure with advanced disease and the often rapid pace of decline near death. This difficulty was reported to result in later initiation of EOL care. Barriers to high-quality EOL care were also reported to be multifactorial, including unrealistic expectations from both physicians and patients, long-term patient-physician relationships resulting in difficulty conducting EOL discussions, and inadequacy of existing home-based EOL services. Participants also expressed concern that some EOL quality measures developed for solid tumors may be unacceptable for patients with blood cancers given their unique needs at the EOL (eg, palliative transfusions)., Conclusion: Our analysis suggests that hematologic oncologists need better clinical markers for when to initiate EOL care. In addition, current quality measures may be inappropriate for identifying overly aggressive care for patients with blood cancers. Further research is needed to develop effective interventions to improve EOL care for this patient population., (Copyright © 2014 by American Society of Clinical Oncology.)

Objectives: To determine whether the receipt of chemotherapy among terminally ill cancer patients months before death was associated with patients' subsequent intensive medical care and place of death., Design: Secondary analysis of a prospective, multi-institution, longitudinal study of patients with advanced cancer., Setting: Eight outpatient oncology clinics in the United States., Participants: 386 adult patients with metastatic cancers refractory to at least one chemotherapy regimen, whom physicians identified as terminally ill at study enrollment and who subsequently died., Primary Outcomes: intensive medical care (cardiopulmonary resuscitation, mechanical ventilation, or both) in the last week of life and patients' place of death (for example, intensive care unit)., Secondary Outcomes: survival, late hospice referrals (≤ 1 week before death), and dying in preferred place of death., Results: 216 (56%) of 386 terminally ill cancer patients were receiving palliative chemotherapy at study enrollment, a median of 4.0 months before death. After propensity score weighted adjustment, use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life (14% v 2%; adjusted risk difference 10.5%, 95% confidence interval 5.0% to 15.5%) and late hospice referrals (54% v 37%; 13.6%, 3.6% to 23.6%) but no difference in survival (hazard ratio 1.11, 95% confidence interval 0.90 to 1.38). Patients receiving palliative chemotherapy were more likely to die in an intensive care unit (11% v 2%; adjusted risk difference 6.1%, 1.1% to 11.1%) and less likely to die at home (47% v 66%; -10.8%, -1.0% to -20.6%), compared with those who were not. Patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not (65% v 80%; adjusted risk difference -9.4%, -0.8% to -18.1%)., Conclusions: The use of chemotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary resuscitation, mechanical ventilation or both and of dying in an intensive care unit. Future research should determine the mechanisms by which palliative chemotherapy affects end of life outcomes and patients' attainment of their goals.

Context: Cognitive impairment commonly affects cancer patients., Objectives: To examine whether minor cognitive impairment in patients with advanced cancer is associated with the intensity of end-of-life (EOL) care or modifies the influence of patient and caregiver preferences on the intensity of EOL care., Methods: Data were derived from structured interviews with 221 advanced cancer patient-caregiver dyads in the Coping with Cancer Study, a multisite, longitudinal cohort study. Deficits in patients' cognitive function were identified using the Short Portable Mental Status Questionnaire (SPMSQ). Patients and caregivers reported preferences regarding life-extending vs. symptom-directed care. Information regarding EOL care was obtained from postmortem interviews with caregivers. Logistic regression analyses modeled main and interactive effects of patients' cognitive impairment and patients' and caregivers' treatment preferences on intensive EOL care., Results: Cognitive impairment was associated with less intensive EOL care (odds ratio [OR] = 0.56; 95% confidence interval [CI]: 0.34-0.91). Patients and caregivers had poor agreement regarding preferences for life-extending vs. symptom-directed care (Φ = 0.10; χ(2)=2.32, df = 1, P = 0.13). Patient preference for life-extending care predicted intensive EOL care irrespective of cognitive status (adjusted odds ratio [AOR] = 2.11; 95% CI: 1.04-4.28). For patients with no errors on the SPMSQ, caregiver preference for life-extending care was unrelated to intensive EOL care (AOR = 0.40; 95% CI: 0.09-1.77). However, the association between caregiver preference for life-extending care and intensive EOL care increased by nearly a factor of seven for every error on the SPMSQ (interaction AOR = 6.90; 95% CI: 1.40-34.12)., Conclusion: Cognitive impairment in patients with advanced cancer is associated with less intensive EOL care. Caregivers' influence on intensive EOL care dramatically increases with minor declines in patients' cognitive function., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Culture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care., Methods and Findings: In this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n = 171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach α = 0.98); and significantly associated with US birthplace (r = 0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR = 1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR = 0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR = 1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR = 2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR = 1.59, 95% CI:1.20-2.12)., Conclusion: The USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).

Objective: This study examines the relationships between methods of coping with advanced cancer, completion of advance care directives, and receipt of intensive, life-prolonging care near death., Methods: The analysis is based on a sample of 345 patients interviewed between January 1, 2003, and August 31, 2007, and followed until death as part of the Coping with Cancer Study, an NCI/NIMH-funded, multi-site, prospective, longitudinal, cohort study of patients with advanced cancer. The Brief COPE was used to assess active coping, use of emotional-support, and behavioral disengagement. The Brief RCOPE was used to assess positive and negative religious coping. The main outcome was intensive, life-prolonging care near death, defined as receipt of ventilation or resuscitation in the last week of life., Results: Positive religious coping was associated with lower rates of having a living will (AOR = 0.39, p = 0.003) and predicted higher rates of intensive, life-prolonging care near death (AOR, 5.43; p<0.001), adjusting for other coping methods and potential socio-demographic and health status confounds. Behavioral disengagement was associated with higher rates of DNR order completion (AOR, 2.78; p = 0.003) and predicted lower rates of intensive life-prolonging care near death (AOR, 0.20; p = 0.036). Not having a living will partially mediate the influence of positive religious coping on receipt of intensive, life-prolonging care near death., Conclusion: Positive religious coping and behavioral disengagement are important determinants of completion of advance care directives and receipt of intensive, life-prolonging care near death., (Copyright © 2011 John Wiley & Sons, Ltd.)

Background: Research suggests that patients' end-of-life (EOL) care is determined primarily by the medical resources available, and not by patient preferences. The authors examined whether patients' desire for life-extending therapy was associated with their EOL care., Methods: Coping with Cancer is a multisite, prospective, longitudinal study of patients with advanced cancer. Three hundred one patients were interviewed at baseline and followed until death, a median of 4.5 months later. Multivariate analyses examined the influence of patients' preferences and treatment site on whether patients received intensive care or hospice services in the final week of life., Results: Eighty-three of 301 patients (27.6%) with advanced cancer wanted life-extending therapy at baseline. Patients who understood that their disease was terminal or who reported having EOL discussions with their physicians were less likely to want life-extending care compared with others (23.4% vs 42.6% and 20.7% vs 44.4%, respectively; P≤.003). Patients who were treated at Yale Cancer Center received more intensive care (odds ratio [OR], 3.14; 95% confidence interval [CI], 1.16-8.47) and less hospice services (OR, 0.52; 95% CI, 0.29-0.92) compared with patients who were treated at Parkland Hospital. However, in multivariate analyses that controlled for confounding influences, patients who preferred life-extending care were more likely to receive intensive care (adjusted OR [AOR], 2.91; 95% CI, 1.09-7.72) and were less likely to receive hospice services (AOR, 0.45; 95% CI, 0.26-0.78). Treatment site was not identified as a significant predictor of EOL care., Conclusions: The treatment preferences of patients with advanced cancer may play a more important role in determining the intensity of medical care received at the EOL than previously recognized. Future research is needed to determine the mechanisms by which patients' preferences for care and treatment site interact to influence EOL care., (Copyright © 2010 American Cancer Society.)

Purpose: Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences., Methods: This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians., Results: Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences., Conclusion: Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.

Purpose: To determine whether spiritual care from the medical team impacts medical care received and quality of life (QoL) at the end of life (EoL) and to examine these relationships according to patient religious coping., Patients and Methods: Prospective, multisite study of patients with advanced cancer from September 2002 through August 2008. We interviewed 343 patients at baseline and observed them (median, 116 days) until death. Spiritual care was defined by patient-rated support of spiritual needs by the medical team and receipt of pastoral care services. The Brief Religious Coping Scale (RCOPE) assessed positive religious coping. EoL outcomes included patient QoL and receipt of hospice and any aggressive care (eg, resuscitation). Analyses were adjusted for potential confounders and repeated according to median-split religious coping., Results: Patients whose spiritual needs were largely or completely supported by the medical team received more hospice care in comparison with those not supported (adjusted odds ratio [AOR] = 3.53; 95% CI, 1.53 to 8.12, P = .003). High religious coping patients whose spiritual needs were largely or completely supported were more likely to receive hospice (AOR = 4.93; 95% CI, 1.64 to 14.80; P = .004) and less likely to receive aggressive care (AOR = 0.18; 95% CI, 0.04 to 0.79; P = .02) in comparison with those not supported. Spiritual support from the medical team and pastoral care visits were associated with higher QOL scores near death (20.0 [95% CI, 18.9 to 21.1] v 17.3 [95% CI, 15.9 to 18.8], P = .007; and 20.4 [95% CI, 19.2 to 21.1] v 17.7 [95% CI, 16.5 to 18.9], P = .003, respectively)., Conclusion: Support of terminally ill patients' spiritual needs by the medical team is associated with greater hospice utilization and, among high religious copers, less aggressive care at EoL. Spiritual care is associated with better patient QoL near death.

Context: Patients frequently rely on religious faith to cope with cancer, but little is known about the associations between religious coping and the use of intensive life-prolonging care at the end of life., Objective: To determine the way religious coping relates to the use of intensive life-prolonging end-of-life care among patients with advanced cancer., Design, Setting, and Participants: A US multisite, prospective, longitudinal cohort of 345 patients with advanced cancer, who were enrolled between January 1, 2003, and August 31, 2007. The Brief RCOPE assessed positive religious coping. Baseline interviews assessed psychosocial and religious/spiritual measures, advance care planning, and end-of-life treatment preferences. Patients were followed up until death, a median of 122 days after baseline assessment., Main Outcome Measures: Intensive life-prolonging care, defined as receipt of mechanical ventilation or resuscitation in the last week of life. Analyses were adjusted for demographic factors significantly associated with positive religious coping and any end-of-life outcome at P < .05 (ie, age and race/ethnicity). The main outcome was further adjusted for potential psychosocial confounders (eg, other coping styles, terminal illness acknowledgment, spiritual support, preference for heroics, and advance care planning)., Results: A high level of positive religious coping at baseline was significantly associated with receipt of mechanical ventilation compared with patients with a low level (11.3% vs 3.6%; adjusted odds ratio [AOR], 2.81 [95% confidence interval {CI}, 1.03-7.69]; P = .04) and intensive life-prolonging care during the last week of life (13.6% vs 4.2%; AOR, 2.90 [95% CI, 1.14-7.35]; P = .03) after adjusting for age and race. In the model that further adjusted for other coping styles, terminal illness acknowledgment, support of spiritual needs, preference for heroics, and advance care planning (do-not-resuscitate order, living will, and health care proxy/durable power of attorney), positive religious coping remained a significant predictor of receiving intensive life-prolonging care near death (AOR, 2.90 [95% CI, 1.07-7.89]; P = .04)., Conclusions: Positive religious coping in patients with advanced cancer is associated with receipt of intensive life-prolonging medical care near death. Further research is needed to determine the mechanisms for this association.

Background: Life-sustaining medical care of patients with advanced cancer at the end of life (EOL) is costly. Patient-physician discussions about EOL wishes are associated with lower rates of intensive interventions., Methods: Funded by the National Institute of Mental Health and the National Cancer Institute, Coping With Cancer is a longitudinal multi-institutional study of 627 patients with advanced cancer. Patients were interviewed at baseline and were followed up through death. Costs for intensive care unit and hospital stays, hospice care, and life-sustaining procedures (eg, mechanical ventilator use and resuscitation) received in the last week of life were aggregated. Generalized linear models were applied to test for cost differences in EOL care. Propensity score matching was used to reduce selection biases., Results: Of 603 participants, 188 (31.2%) reported EOL discussions at baseline. After propensity score matching, the remaining 415 patients did not differ in sociodemographic characteristics, recruitment sites, illness acknowledgment, or treatment preferences. Further analyses, adjusted by quintiles of propensity scores and significant confounders, revealed that the mean (SE) aggregate costs of care (in 2008 US dollars) were $1876 ($177) for patients who reported EOL discussions compared with $2917 ($285) for patients who did not, a cost difference of $1041 (35.7% lower among patients who reported EOL discussions) (P =.002). Patients with higher costs had worse quality of death in their final week (Pearson production moment correlation partial r = -0.17, P =.006)., Conclusions: Patients with advanced cancer who reported having EOL conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death.

Background: Clinicians observe that advanced cancer patients with dependent children agonize over the impact their death will have on their children. The objective of this study was to determine empirically whether advanced cancer patients with and without dependent children differ in treatment preferences, mental health, and end-of-life (EOL) outcomes., Methods: Coping with Cancer is a National Cancer Institute/National Institute of Mental Health-funded, multi-institutional, prospective cohort study of 668 patients with advanced cancer. Patients with and without dependent children were compared on rates of psychiatric disorders, advance care planning (ACP), EOL care, quality of their last week of life, and location of death., Results: In adjusted analyses, patients with advanced cancer who had dependent children were more likely to meet panic disorder criteria (adjusted odds ratio [AOR], 5.41; 95% confidence interval [95% CI], 2.13-13.69), more likely to be worried (mean difference in standard deviations [delta], 0.09; P=.006), and more likely to prefer aggressive treatment over palliative care (AOR, 1.77; 95% CI, 1.07-2.93). Patients with dependent children were less likely to engage in ACP (eg, do not resuscitate orders: AOR, 0.44; 95% CI, 0.26-0.75) and had a worse quality of life in the last week of life (delta, 0.15; P=.007). Among spousal caregivers, those with dependent children were more likely to meet criteria for major depressive disorder (AOR, 4.53; 95% CI, 1.47-14) and generalized anxiety disorder (AOR, 3.95; 95% CI, 1.29-12.16)., Conclusions: Patients with dependent children were more anxious, were less likely to engage in ACP, and were more likely to have a worse quality of life in their last week of life. Advanced cancer patients and spousal caregivers with dependent children represent a particularly distressed group that warrants further clinical attention, research, and support., (Copyright (c) 2009 American Cancer Society.)

Context: Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm., Objective: To determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions., Design, Setting, and Participants: A US multisite, prospective, longitudinal cohort study of patients with advanced cancer and their informal caregivers (n = 332 dyads), September 2002-February 2008. Patients were followed up from enrollment to death, a median of 4.4 months later. Bereaved caregivers' psychiatric illness and quality of life was assessed a median of 6.5 months later., Main Outcome Measures: Aggressive medical care (eg, ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients' mental health and caregivers' bereavement adjustment., Results: One hundred twenty-three of 332 (37.0%) patients reported having end-of-life discussions before baseline. Such discussions were not associated with higher rates of major depressive disorder (8.3% vs 5.8%; adjusted odds ratio [OR], 1.33; 95% confidence interval [CI], 0.54-3.32), or more worry (mean McGill score, 6.5 vs 7.0; P = .19). After propensity-score weighted adjustment, end-of-life discussions were associated with lower rates of ventilation (1.6% vs 11.0%; adjusted OR, 0.26; 95% CI, 0.08-0.83), resuscitation (0.8% vs 6.7%; adjusted OR, 0.16; 95% CI, 0.03-0.80), ICU admission (4.1% vs 12.4%; adjusted OR, 0.35; 95% CI, 0.14-0.90), and earlier hospice enrollment (65.6% vs 44.5%; adjusted OR, 1.65;95% CI, 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient quality of life (6.4 vs 4.6; F = 3.61, P = .01) and higher risk of major depressive disorder in bereaved caregivers (adjusted OR, 3.37; 95% CI, 1.12-10.13), whereas longer hospice stays were associated with better patient quality of life (mean score, 5.6 vs 6.9; F = 3.70, P = .01). Better patient quality of life was associated with better caregiver quality of life at follow-up (beta = .20; P = .001)., Conclusions: End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.

228 Background: Serious illness conversations (SICs) are discussions between oncology clinicians and patients with cancer about illness understanding and care preferences. SICs are associated with less intensive and more goal-concordant care near the end of life, but many patients die without an SIC. Methods: PATH-SIC is an ongoing, single-center randomized trial (NCT05629065) that enrolls adults without a documented SIC starting a treatment for breast, gastrointestinal, genitourinary, gynecologic, or lung cancers with an expected prognosis of less than one year. The trial examines the effects of clinician- and patient-nudges on SIC documentation within 60 days of patient's randomization to one of four arms (no nudge, clinician nudge, patient nudge, or both). This embedded mixed methods study recruited patients who still did not have an SIC 60 days from randomization, their caregivers (if present at time of consent) and oncologists. Interviews explored patients' and caregivers' 1) experiences with SICs, 2) perceptions about why SICs may not occur, and 3) suggestions to empower others to initiate SICs. Participating oncologists were surveyed by email. We used qualitative content analysis and descriptive statistics to identify themes. Results: The study included 44 participants: 19 patients, 10 caregivers and 15 oncologists. Patients had a median age of 63 years, were 63% female and 58% White and 68% had gastrointestinal cancers. Though no patient had a documented SIC, patients and their oncologists often disagreed about whether an undocumented SIC had occurred previously (Table). Patients' and caregivers' reported barriers to SICs included patient factors (lack of readiness, desire to maintain hope, focus on the present), clinician factors (perceived discomfort with prognostic disclosure and SICs), and prognostic uncertainty (current disease control, unpredictable prognosis). Patients' and caregivers' reported facilitators to SICs included patient- (self-advocacy, SIC readiness), clinician- (comfortable rapport), disease- (progression, worsening symptoms), and family-related facilitators (advocates for the patient to engage in SICs). To increase SICs, patients and caregivers reported greater acceptance of interventions involving a personal touch (e.g. phone call) over automated processes. Oncologist survey responses were brief. They reported SICs were most frequently triggered by disease progression or treatment intolerance, and recommended longer appointment times and written materials to facilitate SIC. Conclusions: Patient, caregiver and oncologist feedback on barriers and facilitators to SICs provided useful insights to improve interventions to encourage SICs. Patient/oncologist dyad (n=16) concordance of prior SICs. # of dyads Agreed SIC occurred 7 Agreed SIC did not occur 2 Only oncologist reported SIC 6 Only patient reported SIC 1 Total patient/oncologist dyads 16 [ABSTRACT FROM AUTHOR]

Background: Age differences may help to explain discrepancies in medical care received by cancer patients near death. Objectives: Understanding age differences in advanced cancer patients' end-of-life experiences. Design: NCI and NIMH funded multi-site prospective cohort study. Participants: 396 deceased cancer patients, mean age (58.6 ± 12.5), in the Coping with Cancer study. Measurements: Baseline interviews (Treatment Preference) and 1 week postmortem chart reviews (Treatment Received). Results: 14.1% of patients were 20–44 years old, 54.0% were 45–64 years old, and 31.8% were ≥65 years old. Compared to younger patients, middle-aged patients wanted less life-prolonging care (OR 0.32; CI 0.16-0.64). In the last week of life, older patients were less likely to undergo ventilation (OR 0.27; CI 0.07-1.00) than younger patients. Middle-aged patients who preferred life-prolonging care were less likely to receive it than younger patients (OR 0.21; CI 0.08-0.54), but were more likely to avoid unwanted life-prolonging care (OR 2.38; CI 1.20-4.75) than younger patients. Older patients were less likely to receive desired life-prolonging care than younger patients (OR 0.23; CI 0.08-0.68), however, they were not more likely to avoid unwanted life-prolonging care than younger patients (OR 1.74; CI 0.87-3.47). Conclusions: Likelihood of a patient's treatment preference being consistent with care differ by age and treatment preferences. Older patients preferring life-prolonging therapies are less likely to receive them than younger patients; middle-aged patients who want to avoid life-prolonging care are more likely to do so than younger patients. Both findings have implications for patients' quality-of-death, indicating a need for further research. [ABSTRACT FROM AUTHOR]

The article presents a study which validate a measure of therapeutic alliance between patients with advanced cancer and their physicians. It also evaluates the effects of therapeutic alliance on end of life (EOL) experiences and care. Result shows that the Human Connection (THC) scale is a reliable measure of therapeutic alliance between patients with advanced cancer and physicians. They concluded that there was no evidence to suggest that EOL discussions harm patient's therapeutic alliance.

The article discusses a study conducted by Alexi A Wright and colleagues on whether terminally ill patients who receive palliative chemotherapy months prior to death are more likely to receive intensive end of life medical care as compared to patients who did not receive palliative chemotherapy. It presents the summary answer, the main results and the role of chance, and what the study has added to previous studies.