Background and Objectives: Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics).
Research Design and Methods: Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232).
Results: Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences.
Discussion and Implications: Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals' life spans and affect older immigrants' EOL preparation and care.
BACKGROUND: There are few quantitative studies on palliative care provision to Indigenous Australians, a population known to experience distinctive barriers to quality healthcare and to have poorer health outcomes than other Australians.
OBJECTIVES: To investigate equity of specialist palliative care service provision through characterising and comparing Indigenous and non-Indigenous patients at entry to care.
METHODS: Using data (01/01/2010-30/06/2015) from all services participating in the multi-jurisdictional Palliative Care Outcomes Collaboration, Indigenous and non-Indigenous patients entering palliative care were compared on proportions vis-à-vis those expected from national statutory datasets, demographic characteristics, and entry-to-care status across fourteen 'problem' domains (e.g., pain, functional impairment) after matching by age, sex, and specific diagnosis.
RESULTS: Of 140,267 patients, 1,465 (1.0%, much lower than expected from statutory data) were Indigenous, 133,987 (95.5%) non-Indigenous, and 4,905 (3.5%) had a missing identifier. The proportion of patients with a missing identifier diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p<0.001), a higher proportion were female (51.5% versus 46.3%; p<0.001) or resided outside major cities (44.2% versus 21.5%, p<0.001). Across all domains, Indigenous compared with matched non-Indigenous patients had lower or equal risk of status requiring prompt intervention.
CONCLUSIONS: Indigenous patients (especially those residing outside major cities) are substantially under-represented in care by services participating in the nationwide specialist palliative care Collaboration, likely reflecting widespread access barriers. However, the similarity of status indicators among Indigenous and non-Indigenous patients at entry to care suggests that Indigenous patients who are able to access these services do not disproportionately experience clinically important impediments to care initiation.
Introduction: Differences in health care between racial and ethnic groups exist. The literature suggests that African Americans and Hispanics prefer more aggressive treatment at the end of life. The aim of this study is to assess racial and ethnic differences in limiting life-sustaining treatment (LLST) after trauma.
Study Design: We performed a 2-year (2013-2014) retrospective analysis of Trauma Quality Improvement Program database. Patients with age =16 and Injury Severity Score (ISS) = 16 were included. Outcome measures were the incidence and the predictors of LLST. Multivariable logistic regression was performed to control for confounding variables.
Results: A total of 97 024 patients were identified. Mean age was 49 (21) years, 68% were male, 68% were white, and 14% were Hispanic. The overall incidence of LLST was 7.2%. Based on race, LLST was selected as consistent with goals of care more often in white when compared to African American individuals who experience serious traumatic injury (8.0% vs 4.5%; P < .001). Based on ethnicity, LLST was more often selected in non-Hispanics (7.5% vs 5.2%, P < .001) when compared to Hispanics. On regression analysis, the independent predictors of LLST were white race (odds ratio [OR]: 2.7 [1.6–4.4], P = .02), non-Hispanic ethnicity (OR: 1.9 [1.4-4.6]; P = .03), severe head injury (OR: 1.7 [1.1-3.2]; P = .04), and ISS (OR: 3.1 [2.4-5.1]; P < .01).
Conclusions: Differences exist in selecting LLST between different racial and ethnic groups in severe trauma. African Americans and Hispanics are less likely to select LLST when compared to whites and non-Hispanics. Further studies are required to analyze the factors associated with selecting LLST in African Americans and Hispanics.
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral.
STUDY DESIGN: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA.
RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences.
CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.
Background: Little is known about how immigration status influences preference for life-extending care (LEC) at the end of life (EoL).
Objective: The purpose was to determine how preference for LEC at the EoL for advanced cancer patients varied by Latino ethnicity and immigrant status, and over time between two large cohorts.
Methods: Data were derived from two sequential multi-institutional, longitudinal cohort studies of advanced cancer patients, recruited from 2002 to 2008 (coping with cancer I [CwC-1]) and 2010 to 2015 (coping with cancer II [CwC-2]). Self-reported U.S.-born whites (whites) (N = 253), U.S.-born Latinos (US-L) (N = 34), and Latino immigrants (LI) (N = 65) with a poor-prognosis cancer were included. The primary independent variables were immigrant status, Latino ethnicity, and CwC cohort. The primary dependent variable was preference for LEC.
Results: Within CwC-2, LI were 9.4 times more likely to prefer LEC over comfort care versus US-L (adjusted odds ratio [AOR] = 9.4; 95% confidence interval [CI]: 1.2–72.4), and US-L were 0.3 times less likely to prefer LEC versus whites (AOR = 0.3; 95% CI: 0.1–1.0). LI from CwC-2 were 11.4 times more likely to prefer LEC versus LI from CwC-1 (AOR = 11.4; 95% CI: 2.7–48.4). Within CwC-1, there was no difference in LEC preference between LI and US-L, nor between US-L and whites.
Conclusions: Immigrant status had a strong effect on preference for LEC at the EoL among the more recent cohort of Latino cancer patients. Preference for LEC appears to have increased significantly over time for LI but remained unchanged for US-L. LI may increasingly want LEC near death.
In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.
The range of end-of-life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as 'good' and others as 'bad'. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n = 39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the 'good death' are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end-of-life options.
BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers.
METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival.
RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment.
CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.
OBJECTIVE: To explore health care providers' perceptions of the provision of palliative care in the Qikiqtaaluk (formerly known as Baffin) region of Nunavut.
DESIGN: An exploratory, qualitative, cross-sectional design using in-depth, semistructured interviews.
SETTING: Qikiqtaaluk region of Nunavut.
PARTICIPANTS: Seven physicians and 6 registered nurses who worked in Iqaluit or other northern Inuit communities in the Qikiqtaaluk region of Nunavut.
METHODS: Thirteen health care providers participated in in-person or telephone semistructured interviews, which were audiorecorded and transcribed verbatim.
MAIN FINDINGS: Interviews with the participating health care providers in the Qikiqtaaluk region of Nunavut revealed 5 complex and interwoven themes that influence the provision of comprehensive, culturally competent palliative care services to Indigenous patients: respecting Inuit culture, end-of-life care planning, and the role of family; recognizing the importance of the northern community (sense of home); being aware of the limited health care resources; recognizing the critical role of medical interpreters; and improving the quality of palliative care programs and resources, as well as health care provider training in palliative care and Inuit end-of-life care.
CONCLUSION: Health care providers in the Qikiqtaaluk region of Nunavut have identified several important themes that influence the provision of culturally sensitive and comprehensive palliative care, most notably the need to develop palliative care resources and programs. It is hoped that the results of this study can be used to help guide palliative care strategies including program development and educational initiatives for health care providers. These initiatives can help build community capacity within a currently underserviced population and improve end-of-life care services available to Nunavut patients and their families. Further studies are required to determine the perspectives of medical interpreters, as well as palliative care patients and their families.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
OBJECTIVE: To describe disparities in patterns of hospice use and end-of-life costs among ovarian cancer patients.
METHODS: Using Texas Cancer Registry-Medicare data, ovarian cancer patients deceased 2005-2012 with >12 months of continuous Medicare coverage before death were included. Descriptive statistics and multivariable logistic regressions were used to evaluate patterns of hospice use. Cost and resource utilization was obtained from Medicare claims and analyzed using a non-parametric Mann-Whitney test.
RESULTS: 2331 patients were assessed: 1788 (77%) white, 359 (15%) Hispanic, 158 (7%) black and 26 (1%) other. 1756 (75%) enrolled in hospice prior to death but only 1580 (68%) died with hospice. 176 (10%) of 1756 patients unenrolled and died without hospice. 346 (20%) unenrolled from hospice multiple times. From 2008 to 2012, patients were less likely to unenroll from hospice prior to death. Black patients were more likely to unenroll from hospice prior to death (OR 2.07 [1.15-3.73]; p = 0.02) compared to white patients. The median amount paid by Medicare during the last six months of life was $38,530 for those in hospice compared to $49,942 if never enrolled in hospice (p < 0.0001) and was higher for black and Hispanic patients compared to white patients. 30% hospice unenrolled patients and 40% multiply enrolled hospice patients received at least one life extending or invasive care procedure following unenrollment from hospice.
CONCLUSION: Recently, more patients remain enrolled in hospice, but black patients have a higher risk of unenrollment. Hospice enrollment was associated with lower costs as long as a patient did not unenroll from hospice.
OBJECTIVE: To examine a rural-serving HBPC program's 12-year experience and historical trends to inform future program direction and expansion.
BACKGROUND: There is limited information about longitudinal trends in mature hospital-based palliative care (HBPC) programs serving racially diverse rural populations.
METHODS: This is a retrospective cross-sectional study of operational and patient-reported outcomes from the University of Alabama at Birmingham (UAB) Center for Palliative and Supportive Care (CPSC) inpatient (n=11,786) and outpatient (n=315) databases from October 2004 to March 2016.
RESULTS: Inpatients were a mean age of 63.7 years, male (50.1%), white (62.3%), general medicine referred (19.5%), primarily for goals of care (84.4%); 47.1% had "do not resuscitate/do not intubate" status and 46.9% were transferred to the Palliative Care and Comfort Unit (PCCU) after consultation. Median time from admission to consultation was three days, median PCCU length of stay (LOS) was four days, and median hospital LOS was nine days. Increased emergency department and cardiology referrals were notable in later years. Outpatients' mean age was 53.02 years, 63.5% were female, 76.8% were white, and 75.6% had a cancer diagnosis. Fatigue, pain, and disturbed sleep were the most common symptoms at the time of the visit; 34.6% reported mild-to-moderate depressive symptoms. Of patients reporting pain (64.8%), one-third had 50% or less relief from pain treatment.
DISCUSSION: The CPSC, which serves a racially diverse rural population, has demonstrated robust growth. We are poised to scale and spread our lessons learned to underserved communities.
BACKGROUND: While disparities in end-of-life care have been well-documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations.
OBJECTIVE: To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups.
DESIGN: This work consists of a qualitative study utilizing in-depth focus group discussions.
SETTING/PARTICIPANTS: Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants, 2 had Latino participants, and 2 groups had white participants.
RESULTS: Analysis produced 3 major themes: (1) clear, comprehensive, and culturally relevant provider-patient communication regarding serious illness; (2) provider characteristics and competency; and (3) health system supports and barriers. Although all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high-quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the health-care system requires hypervigilance to receive high-quality care.
CONCLUSIONS: Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.
BACKGROUND: There is little scholarship on culturally safe approaches to palliative care, especially for rural Indigenous clients. Thus, it is important to articulate how cultural safety can be enacted to support rural Indigenous Peoples and communities at end of life. We sought to identify strategies described in existing literature that have potential to deepen our understanding of culturally safe approaches to palliative care within rural and small-town settings in Canada.
METHODS: We searched for peer-reviewed and grey literature about Indigenous palliative care in rural and small-town settings in Canada, United States, New Zealand, and Australia. Medline, CINAHL, and Embase were searched. We thematically analyzed 22 resulting articles to address our interest in culturally safe approaches to palliative care in rural/small-town and on-reserve contexts.
RESULTS: The following themes were extracted from the literature: symbolic or small gestures; anticipating barriers to care; defer to client, family and community; shared decision-Making; active patient and family involvement; respectful, clear, and culturally appropriate communication; community ownership of services; empower cultural identity, knowledge, and traditions; and, policy.
DISCUSSION: Culturally competent practices can improve Indigenous palliative care services; however, they do not result in decolonized care. Strategies include: symbolic or small gestures; anticipating barriers to access; deferring to the client, family, and community members; and, collective decision making and family involvement. Culturally safe approaches contribute to institutional or organizational change and decolonized care. Strategies include: involvement of patient and family in service planning; reflection about individual and systemic racism; community ownership of services and; recognizing distinct Worldviews that shape care.
CONCLUSIONS: Culturally safe strategies invite decolonization of care through awareness of colonialism, racism, and discrimination. They invite commitment to building partnerships, power sharing, and decision-making in the delivery of care. Culturally competent activities may catalyze the adoption of a cultural safety framework; however, mislabeling of cultural competency as cultural safety may contribute to organizational inaction and a watering down of the spirit of cultural safety.
Importance: It is not known whether racial/ethnic differences in receipt of palliative care are attributable to different treatment of minorities or lower utilization of palliative care at the relatively small number of hospitals that treat a large portion of minority patients.
Objective: To assess the association of receipt of palliative care among patients with metastatic cancer with receipt of treatment at minority-serving hospitals (MSHs) vs non-MSHs.
Design, Setting, and Participants: This retrospective cohort study used Participant Use Files of the National Cancer Database, a prospectively maintained, hospital-based cancer registry consisting of all patients treated at more than 1500 US hospitals, to collect data from individuals older than 40 years with metastatic prostate, lung, colon, and breast cancer, diagnosed from January 1, 2004, to December 31, 2015. Data were accessed in October 2017, and the analysis was performed in July 2018.
Exposures: Hospitals in the top decile in terms of the proportion of black and Hispanic patients for each cancer type were defined as MSHs.
Main Outcomes and Measures: A multilevel logistic regression model that estimated the odds of palliative care was fit, adjusting for year of diagnosis, sex, race/ethnicity, insurance, income, educational level, and cancer type, with an interaction term between cancer type and MSH status and a hospital-level random intercept to account for unmeasured hospital characteristics.
Results: A total of 601 680 individuals (mean [SD] age, 67.4 [11.4] years; 95% CI, 67.2-67.6 years; 314 279 [52.2%] male; 475 039 [78.9%] white) were studied. In total, 130 813 patients (21.7%) received palliative care, ranging from 102 019 (25.4%) with lung cancer to 9966 (11.1%) with colon cancer. In total, 16 435 black individuals (20.0%) and 3551 Hispanic individuals (15.9%) received palliative care vs 106 603 non-Hispanic white individuals (22.5%) (P < .001). The MSH patients were less likely than the non-MSH patients to receive palliative care, regardless of race/ethnicity (12 692 [18.0%] vs 118 121 [22.3%]; P = .002). In an adjusted analysis, treatment at an MSH had a statistically significant association with lower odds of receiving palliative care (odds ratio, 0.67; 95% CI, 0.53-0.84).
Conclusions and Relevance: Although the factors associated with minority patients' receipt of palliative care are complex, in this study, treatment at MSHs was associated with significantly lower odds of receiving any palliative care in an adjusted analysis, but black and Hispanic race/ethnicity was not. These findings suggest that the site of care is associated with race/ethnicity-based differences in palliative care.
BACKGROUND: Latinos with end-stage renal disease (ESRD) have worse mental and kidney composite health-related quality of life (HRQOL) scores compared to non-Latino ESRD patients. Latino ESRD patients uniquely report that social factors (e.g., lack of care coordination, food insecurity, and low health literacy) and mental health influence their HRQOL. We developed a culturally tailored peer navigator (PN) intervention to improve the HRQOL of Latinos on hemodialysis.
OBJECTIVE: To determine the feasibility of the PN intervention.
DESIGN: Single-arm prospective study. The PN provided individualized support with advance care planning, care coordination, and counseling about the importance of diet and mental health.
SETTING AND PARTICIPANTS: Latino with ESRD receiving scheduled outpatient thrice-weekly hemodialysis or reliant on emergency-only hemodialysis in Denver.
MAIN MEASURES: Recruitment, retention rates, data completeness, intervention dose, patient- and staff-reported satisfaction with the intervention.
RESULTS: Of 49 eligible patients, 40 (82%) agreed to participate. The majority of participants received scheduled outpatient hemodialysis (75%), 20 were women (50%), with a mean (standard deviation [SD]) age of 56 (13) years. No participants withdrew from the intervention. One participant died. The mean (SD) number of PN visits per participant was 7 (2) and the mean (SD) length of the visits was 97 minutes (49). The majority of visits took place at the hemodialysis facility (59%) and home (27%). The vast majority of participants reported that the PN improved their quality of life as a patient on hemodialysis (95%).
CONCLUSIONS: The PN intervention achieved feasibility goals and was well received by participants.
BACKGROUND: The UK older population is becoming increasingly ethnically diverse, with a projected eight-fold increase in dementia among black, Asian and minority ethnic communities over the next 30 years, compared with a two-fold increase in white British people with dementia.
AIMS: This Admiral Nurse case study explores an understanding of culture and ethnic background in families' experiences of dementia and caring using a culturagram assessment framework.
FINDINGS: The culturagram enabled a more comprehensive assessment, so that care delivery was sensitive to the specific cultural and ethnicity issues in a relationship-centred approach to dementia care.
CONCLUSION: An understanding of the cultural influences in light of a diagnosis of dementia were essential in developing a care package that met the needs of all family members.
BACKGROUND: To provide preference-sensitive care, we propose that clinicians might routinely inquire about their patients' bucket-lists and discuss the impact (if any) of their medical treatments on their life goals.
METHODS: This cross-sectional, mixed methods online study explores the concept of the bucket list and seeks to identify common bucket list themes. Data were collected in 2015-2016 through an online survey, which was completed by a total of 3056 participants across the United States. Forty participants who had a bucket list were identified randomly and used as the development cohort: their responses were analyzed qualitatively using grounded theory methods to identify the six key bucket list themes. The responses of the remaining 3016 participants were used for the validation study. The codes identified from the development cohort were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort. All the 3016 validation cohort transcripts were coded for presence or absence of each of the six bucket list themes.
RESULTS: Around 91.2% participants had a bucket list. Age and spirituality influence the patient's bucket-list. Participants who reported that faith/religion/spirituality was important to them were most likely (95%) to have a bucket list compared with those who reported it to be unimportant (68.2%), 2 = 37.67. Six primary themes identified were the desire to travel (78.5%), desire to accomplish a personal goal (78.3%), desire to achieve specific life milestones (51%), desire to spend quality time with friends and family (16.7%), desire to achieve financial stability (24.3%), and desire to do a daring activity (15%).
CONCLUSIONS: The bucket list is a simple framework that can be used to engage patients about their healthcare decision making. Knowing a patient's bucket list can aid clinicians in relating each treatment option to its potential impact (if any) on the patient's life and life goals to promote informed decision making.
Advance care planning (ACP) is understudied among American Indian individuals. A cross-sectional, self-administered survey was conducted with a convenience sample of 200 American Indian and 436 non-Hispanic White older adults from two Midwestern states to identify correlates of ACP. Compared with their White peers, American Indian older adults were significantly less likely to have an end-of-life (EOL) care plan or to have completed a durable power of attorney for health care (DPAHC) or a living will. Multivariate logistic regression showed that having an EOL plan was associated with older age, having some college education or more, and having a greater number of chronic conditions, but not with race. Having a DPAHC was associated with being White, older age, having lower levels of depressive symptoms, and having a greater number of chronic conditions, whereas completing a living will was associated with being White, older age, having some college education or more, and having a greater number of chronic conditions. Nurses need to engage in targeted culturally sensitive approaches to promote ACP, grounded in indigenous cultures' health beliefs and practices.
OBJECTIVE: We examined whether conversations involving Black or Latino patients with advanced cancer differ in the presence or characteristics of prognosis communication.
METHODS: We audio-recorded initial consultations between 54 palliative care clinicians and 231 hospitalized people with advanced cancer. We coded for the presence and characteristics of prognosis communication. We examined whether the presence or characteristics of prognosis communication differed by patients' self-reported race/ethnicity.
RESULTS: In 231 consultations, 75.7% contained prognosis communication. Prognosis communication was less than half as likely to occur during conversations with Black or Latino patients (N = 48) compared to others. Among consultations in which prognosis was addressed, those involving Black or Latino patients were more than 8 times less likely to contain optimistically cued prognoses compared to others.
CONCLUSION: Prognosis communication occurred less frequently for Black and Latino patients and included fewer optimistic cues than conversations with other patients. More work is needed to better understand these observed patterns of prognosis communication that vary by race and ethnicity.
PRACTICE IMPLICATIONS: Growing evidence supports prognosis communication being important for end-of-life decision-making and disproportionately rare among non-White populations. Therefore, our findings identify a potentially salient target for clinical interventions that are focused on ameliorating disparities in end-of-life care.