Elizabeth Paulk

Racial and Ethnic Differences in Advance Care Planning Among Patients With Cancer: Impact of Terminal Illness Acknowledgment, Religiousness, and Treatment Preferences

PURPOSE Despite well-documented racial and ethnic differences in advance care planning (ACP), we know little about why these differences exist. This study tested proposed mediators of racial/ethnic differences in ACP. PATIENTS AND METHODS We studied 312 non-Hispanic white, 83 non-Hispanic black, and 73 Hispanic patients with advanced cancer in the Coping with Cancer study, a federally funded multisite prospective cohort study designed to examine racial/ethnic disparities in ACP and end-of-life care. We assessed the impact of terminal illness acknowledgment, religiousness, and treatment preferences on racial/ethnic differences in ACP. RESULTS Compared with white patients, black and Hispanic patients were less likely to have an ACP (white patients, 80%; black patients, 47%; Hispanic patients, 47%) and more likely to want life-prolonging care even if he or she had only a few days left to live (white patients, 14%; black patients, 45%; Hispanic patients, 34%) and to consider religion very important (white patients, 44%; black patients, 88%; Hispanic patients, 73%; all P < .001, comparison of black or Hispanic patients with white patients). Hispanic patients were less likely and black patients marginally less likely to acknowledge their terminally ill status (white patients, 39% v Hispanic patients, 11%; P < .001; white v black patients, 27%; P = .05). Racial/ethnic differences in ACP persisted after adjustment for clinical and demographic factors, terminal illness acknowledgment, religiousness, and treatment preferences (has ACP, black v white patients, adjusted relative risk, 0.64 [95% CI, 0.49 to 0.83]; Hispanic v white patients, 0.65 [95% CI, 0.47 to 0.89]). CONCLUSION Although black and Hispanic patients are less likely to consider themselves terminally ill and more likely to want intensive treatment, these factors did not explain observed disparities in ACP.

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.

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.

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.

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.