Predictors of intensive end-of-life and hospice care in Latino and white advanced cancer patients.

BACKGROUND: The role of end-of-life (EOL) care preferences and conversations in receipt of care near death for Latinos is unclear. OBJECTIVE: This study examines rates and predictors of intensive EOL and hospice care among Latino and white advanced cancer patients. DESIGN: Two-hundred-and-ninety-two self-reported Latino (n=58) and white (n=234) Stage IV cancer patients participated in a U.S. multisite, prospective, cohort study from September 2002 to August 2008. The Latino and white, non-Hispanic participants were interviewed and followed until death, a median of 118.5 days from baseline. MEASUREMENTS: Patient-reported, baseline predictors of EOL care included EOL care preference; terminal illness acknowledgement; EOL discussion; completion of a DNR order; and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit. Hospice was either in- or outpatient. RESULTS: Latino and white patients received intensive EOL and hospice care at similar rates (5.2% and 3.4% for intensive care, p=0.88; 70.7% versus 73.4% for hospice, p=0.33). No white or Latino patient who reported a DNR order or EOL discussion at baseline received intensive EOL care. Religious coping and a preference for life-extending care predicted intensive EOL care for white patients (adjusted odds ratio [aOR] 6.69 [p=0.02] and aOR 6.63 [p=0.01], respectively), but not for Latinos. No predictors were associated with Latino hospice care. CONCLUSIONS: EOL discussions and DNR orders may prevent intensive EOL care among Latino cancer patients. Efforts should continue to engage Latino patients and caregivers in these activities.

Clinical trial participation among ethnic/racial minority and majority patients with advanced cancer: what factors most influence enrollment?

BACKGROUND: Studies using administrative data report that racial/ethnic minority patients enroll in clinical trials less frequently than white patients. We studied a cohort of terminally ill cancer patients to determine a) if racial/ethnic minority patients have lower rates of drug trial enrollment than white patients once socioeconomic characteristics are accounted for and b) what factors most influence drug trial enrollment among patients with advanced canceroverall. METHODS: Coping with Cancer (CwC) is a National Cancer Institute/National Institute of Mental Health (NCI/NIMH)-funded multisite, prospective, longitudinal study of patients with advanced cancer. Baseline interviews assessed drug trial enrollment as well as socioeconomic characteristics. Logistic regression models estimated associations between drug trial enrollment and baseline characteristics. Stepwise, backward, and subset model selection was applied to select the final model where characteristics significant at α=0.05 remained in the model. RESULTS: At a median of 4.4 months prior to death, 35 of 358 patients (9.8%) were enrolled in a drug trial. In unadjusted analyses, race/ethnicity, health insurance, performance status, recruitment site, cancer type, preference for life-extending care, and lack of end-of-life care planning were associated (p<0.05) with enrollment. In multivariable analysis, patient race/ethnicity was not significantly associated with enrollment. Patients who reported not having an end-of-life discussion (adjusted odds ratio [AOR], 0.18; 95% confidence interval [CI] 0.04-0.83) and those not wanting to discuss life expectancy (AOR, 0.31; 95%CI 0.12-0.79) were more likely to be trial enrollees. CONCLUSION: Patient race/ethnicity was not associated with clinical trial enrollment after adjustment for socioeconomic covariates. Patients with advanced cancer endorsing less engagement in end-of-life planning were more likely to be enrolled in a clinical trial.

Factors important to patients' quality of life at the end of life.

BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for advanced cancer patients. The purpose of this study was to determine the factors that most influence QOL at the EOL, thereby identifying promising targets for interventions to promote QOL at the EOL. METHODS: Coping With Cancer is a US multisite, prospective, longitudinal cohort study of 396 advanced cancer patients and their informal caregivers who were enrolled from September 1, 2002, through February 28, 2008. Patients were followed up from enrollment to death a median of 4.1 months later. Patient QOL in the last week of life was a primary outcome of Coping With Cancer and the present report. RESULTS: The following set of 9 factors, preceded by a sign indicating the direction of the effect and presented in rank order of importance, explained the most variance in patients' QOL at the EOL: 1 = (-) intensive care unit stays in the final week (explained 4.4% of the variance in QOL at the EOL), 2 = (-) hospital deaths (2.7%), 3 = (-) patient worry at baseline (2.7%), 4 = (+) religious prayer or meditation at baseline (2.5%), 5 = site of cancer care (1.8%), 6 = (-) feeding-tube use in the final week (1.1%), 7 = (+) pastoral care within the hospital or clinic (1.0%), 8 = (-) chemotherapy in the final week (0.8%), and 9 = (+) patient-physician therapeutic alliance at baseline (0.7%). The vast majority of the variance in QOL at the EOL, however, remained unexplained. CONCLUSION: Advanced cancer patients who avoid hospitalizations and the intensive care unit, who are less worried, who pray or meditate, who are visited by a pastor in the hospital/clinic, and who feel a therapeutic alliance with their physicians have the highest QOL at the EOL.

Underutilization of mental health services among bereaved caregivers with prolonged grief disorder.

OBJECTIVE: This study examined grief and mental health service use among 86 bereaved caregivers of advanced cancer patients. METHODS: Caregivers were assessed before (median=3.1 months) and after (median=6.6 months) patients' deaths for prolonged grief disorder, axis I psychiatric disorders, mental health service use, suicidality, and health-related quality of life. RESULTS: Sixteen percent of the bereaved sample met criteria for prolonged grief disorder, which was significantly associated with suicidality and poorer health-related quality of life, but not with mental health service use. The majority of bereaved caregivers with prolonged grief disorder did not access mental health services. In multivariable analyses, having discussed psychological concerns with a health care professional when the patient was ill was the only significant predictor of mental health service use during bereavement. CONCLUSIONS: Because bereaved caregivers with prolonged grief disorder underutilize mental health services, connecting them with services while the patient is still alive may be beneficial.

The influence of age on the likelihood of receiving end-of-life care consistent with patient treatment preferences.

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 > or = 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.

Anxiety disorders in advanced cancer patients: correlates and predictors of end-of-life outcomes.

BACKGROUND: : The authors explored associations between anxiety disorders and advanced cancer patients' physical performance status, physician-patient relationships, end-of-life (EOL) treatment preferences and outcomes, and quality of death. METHODS: : The Coping with Cancer study was a National Cancer Institute/National Institute of Mental Health-sponsored, prospective, longitudinal, multicenter cohort study of patients with advanced cancer. Six hundred thirty-five patients completed the anxiety disorders module of the Structured Clinical Interview for the Diagnostic Statistical Manual IV. The results were compared with patients' baseline physical performance status, treatment preferences, perceptions of the physician-patient relationship, and advance care planning (ACP). RESULTS: : Approximately 7.6% of patients met criteria for an anxiety disorder. Patients who were diagnosed with an anxiety disorder were more likely to be women and younger and to have a worse physical performance status. Although there were no significant differences in patients' EOL treatment preferences or care, ACP, hospice enrollment, or patients' location of death, there were significant differences in how patients with anxiety disorders perceived the physician-patient relationship. Patients with anxiety disorders had less trust in their physicians, felt less comfortable asking questions about their health, and felt less likely to understand the clinical information that their physicians presented. They also were more likely to believe that their physicians would offer them futile therapies and would not adequately control their symptoms. CONCLUSIONS: : Women, patients who were more physically impaired, and younger patients with advanced cancer were more likely to meet criteria for an anxiety disorder. Patients with advanced cancer who had an anxiety disorder were more likely to experience greater challenges to the physician-patient relationship. Cancer 2010. (c) 2010 American Cancer Society.

Associations between United States acculturation and the end-of-life experience of caregivers of patients with advanced cancer.

BACKGROUND: Cultural beliefs and values influence treatment preferences for and experiences with end-of-life (EOL) care among racial and ethnic groups. Within-group variations, however, may exist based on level of acculturation. OBJECTIVES: To examine the extent to which EOL treatment factors (EOL treatment preferences and physician-caregiver communication) and select psychosocial factors (mental health, complementary therapies, and internal and external social support) differ based on the level of acculturation of caregivers of patients with advanced cancer. METHODS: One hundred sixty-seven primary caregivers of patients with advanced cancer were interviewed as part of the multisite, prospective Coping with Cancer Study. RESULTS: Caregivers who were less acculturated were more positively predisposed to use of a feeding tube at EOL (odds ratio [OR] 0.99 [p = 0.05]), were more likely to perceive that they received too much information from their doctors (OR 0.95 [p = 0.05]), were less likely to use mental health services (OR 1.03 [p = 0.003] and OR 1.02 [p = 0.02]), and desire additional services (OR 1.03 [p = 0.10] to 1.05 [p = 0.009]) than their more acculturated counterparts. Additionally, caregivers who were less acculturated cared for patients who were less likely to report having a living will (OR 1.03 [p = 0.0003]) or durable power of attorney for health care (OR 1.02 [p = 0.007]) than more acculturated caregivers. Caregivers who were less acculturated felt their religious and spiritual needs were supported by both the community (beta -0.28 [p = 0.0003]) and medical system (beta -0.38 [p < 0.0001]), had higher degrees of self-efficacy (beta -0.22 [p = 0.005]), and had stronger family relationships and support (beta -0.27 [p = 0.0004]). CONCLUSIONS: The level of acculturation of caregivers of patients with advanced cancer does contribute to differences in EOL preferences and EOL medical decision-making.

Racial differences in predictors of intensive end-of-life care in patients with advanced cancer.

PURPOSE: Black patients are more likely than white patients to receive life-prolonging care near death. This study examined predictors of intensive end-of-life (EOL) care for black and white advanced cancer patients. PATIENTS AND METHODS: Three hundred two self-reported black (n = 68) and white (n = 234) patients with stage IV cancer and caregivers participated in a US multisite, prospective, interview-based cohort study from September 2002 to August 2008. Participants were observed until death, a median of 116 days from baseline. Patient-reported baseline predictors included EOL care preference, physician trust, EOL discussion, completion of a Do Not Resuscitate (DNR) order, and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit. RESULTS: Although black patients were three times more likely than white patients to receive intensive EOL care (adjusted odds ratio [aOR] = 3.04, P = .037), white patients with a preference for this care were approximately three times more likely to receive it (aOR = 13.20, P = .008) than black patients with the same preference (aOR = 4.46, P = .058). White patients who reported an EOL discussion or DNR order did not receive intensive EOL care; similar reports were not protective for black patients (aOR = 0.53, P = .460; and aOR = 0.65, P = .618, respectively). CONCLUSION: White patients with advanced cancer are more likely than black patients with advanced cancer to receive the EOL care they initially prefer. EOL discussions and DNR orders are not associated with care for black patients, highlighting a need to improve communication between black patients and their clinicians.

Measuring therapeutic alliance between oncologists and patients with advanced cancer: the Human Connection Scale.

BACKGROUND: Patients consider their human connection with a physician an important aspect of end-of-life (EOL) care. In this study, the authors sought to develop and validate a measure of therapeutic alliance between patients with advanced cancer and their physicians and to evaluate the effects of therapeutic alliance on EOL experiences and care. METHODS: The Human Connection (THC) scale was developed to measure the extent to which patients felt a sense of mutual understanding, caring, and trust with their physicians. The scale was administered to 217 patients with advanced cancer along with measures of attributes that have been related hypothetically to therapeutic alliance, including emotional acceptance of terminal illness. EOL outcomes in 90 patients who died during the study also were examined. RESULTS: The 16-item THC questionnaire was consistent internally (Cronbach alpha = .90) and valid based on its expected positive association with emotional acceptance of terminal illness (r = .31; P < .0001). THC scores were related inversely to symptom burden (r = -.19; P = .006), functional status (Karnofsky performance status; r = .22; P = .001), and mental illness (THC score: 50.69 for patients with any Diagnostic and Statistical Manual [DSM] diagnosis vs 55.22 for patients with no DSM diagnosis; P = .03). THC scores were not associated significantly with EOL discussions (P = .68). Among the patients who died, EOL intensive care unit (ICU) care was associated inversely with therapeutic alliance (THC score: 46.5 for patients who received ICU care vs 55.5 for patients without ICU care; P = .002), so that patients with higher THC scores were less likely to spend time in the ICU during the last week of life. CONCLUSIONS: The THC scale is a valid and reliable measure of therapeutic alliance between patients with advanced cancer and their physicians. In addition, there was no evidence to suggest that EOL discussions harm patients' therapeutic alliance. A strong therapeutic alliance was associated with emotional acceptance of a terminal illness and with decreased ICU care at the EOL among patients with advanced cancer.

Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.

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.

Health care costs in the last week of life: associations with end-of-life conversations.

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.

Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children.

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.

Do rates of mental disorders and existential distress among advanced stage cancer patients increase as death approaches?

OBJECTIVE: To determine whether the prevalence of mental disorders and related factors increase as advanced cancer patients get closer to death. METHOD: Baseline, cross-sectional data from 289 patients who were assessed prior to their death as part of a multi-site, longitudinal, prospective cohort study of advanced cancer patients. Major depressive disorder, generalized anxiety disorder, panic disorder, and posttraumatic stress disorder were assessed using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders-IV Axis I Disorders. Other factors examined included existential well-being, patient grief about their illness, physical symptom burden, terminal illness acknowledgment, peacefulness, and the wish to live or die. RESULTS: Closeness to death was not associated with higher rates of mental disorders. Patients closer to death exhibited increased existential distress and physical symptom burden, were more likely to acknowledge being terminally ill, and were more likely to report an increased wish to die. CONCLUSION: Results do not provide support for the common clinical assumption that the prevalence of depressive and anxiety disorders increases as death nears. However, patients' level of physical distress, acknowledgment of terminal illness, and wish to die, possibly reflecting acceptance of dying, increased as death approached. Longitudinal studies are needed to confirm individual changes in rates of mental disorder as patients approach death.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): validation of a scale to assess acceptance and struggle with terminal illness.

BACKGROUND: The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. The authors developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care. METHODS: The authors developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer have a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 patients with advanced cancer along with measures of other attributes that hypothetically are related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study also were examined. RESULTS: The 12-item PEACE questionnaire had 2 subscales: a 7-item Struggle With Illness subscale (Cronbach alpha = .81) and a 5-item Peaceful Acceptance subscale (alpha = .78). Both subscales were associated with patients' self-reported peacefulness (correlation coefficient [r] = 0.66 for acceptance [P <.0001]; r = -0.37 for struggle [P < .0001]). Struggle With Illness scores were associated with cognitive terminal illness acknowledgment (mean scores, 14.9 vs 12.4 for patients who were not aware that their illness was terminal; P = .001) and with some aspects of advance care planning (living will or healthcare proxy: mean scores, 13.9 vs 11.5; P = .02). In addition, among patients who had died, the use of a feeding tube at the EOL was associated inversely with Peaceful Acceptance (P = .015). CONCLUSIONS: The current study indicated that the PEACE questionnaire is a valid and reliable measure of peaceful acceptance and struggle with illness. Scores were associated with some choices for EOL care among patients with advanced cancer.