INTRODUCTION: While spirituality and quality of life (QOL) are essential components of end-of-life (EOL) care, limited studies have examined these constructs for indigenous peoples. Therefore, the purpose of this article was to examine the state of the science regarding spirituality and QOL at EOL for indigenous people, particularly Native Americans.
METHOD: The Arksey and O'Malley (2005) framework guided this scoping review, which examined 30 articles that included qualitative and quantitative studies, commentary papers, and reviews.
RESULTS: The findings identified five spiritual dimensions: the life and death journey, a belief in spirits, tribally grounded traditions, dominant cultural religion influences, and a family focus. QOL indicators included survivorship, optimization of holistic health, communication, and access to appropriate resources. Death rituals were important EOL elements.
DISCUSSION: Given the importance of spirituality to QOL for indigenous people, clinicians must be knowledgeable and responsive to indigenous spiritual needs to promote QOL at EOL.
BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.
PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.
METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted.
RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%).
CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
Background: Critical care physicians often have to make challenging decisions to withhold/withdraw life-sustaining treatments. As a result of society's increasingly cultural diversity such decision making often involves patients from ethnic minority groups, which might pose extra challenges.
Objective: To investigate withholding/withdrawing life-sustaining treatments with patients from ethnic minority groups and their families during critical care.
Design: Ethnographic fieldwork (observations, in-depth interviews and reading patients' medical files).
Setting/Subjects: Eighteen patients from ethnic minority groups, their relatives, physicians and nurses were studied in one intensive care unit of a multi-ethnic urban hospital (Belgium).
Results: During decision making physicians had a very central role. The contribution of patients and nurses was limited, while families' input was more noticeable. Decision making was hampered by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different approaches were used by physicians to overcome difficulties, which often reflected their tendency to control decision making, for example, stressing their central role. At times their approaches reflected their inability to align families' wishes with their own, for example, when making decisions without explicitly informing relatives.
Conclusions: Withholding/withdrawing life-sustaining treatments in a multi-ethnic critic care context has a number of alarming difficulties, such as how to take families' input correctly into account. It is important that decision making happens in a cultural sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with interprofessional health care workers/other services.
Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.
Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.
Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.
BACKGROUND: Compared to Whites, racial/ethnic minorities are less likely to enroll in hospice and if they enroll, more likely to experience poor quality care. Building cultural competence (CC) among hospice staff is a strategy that may reduce disparities.
OBJECTIVE: To describe the state of CC training across hospices.
DESIGN: National survey of hospices' practices to promote CC.
RESULTS: A total of 197 hospices participated; most were not-for-profit (80%) with an average daily census less than 100 (47%); 73% offered staff cultural competence training (CCT). There were no differences in characteristics of hospices who offered CCT and those that did not. Of hospices offering CCT, 61% held it annually. Most trainings were 1 hour (60%); content was delivered via web (58%) and/or lecture (58%). While over 90% of staff (i.e., nurses, social workers, chaplains) completed CCT, a smaller proportion of medical directors (64%), senior leaders (71%) and board members (26%) did so. Most common topics were: cross-cultural communication, death/illness beliefs, spirituality's role, and healthcare disparities. The majority focused on African-Americans (83%), Hispanics (76%), and Asians (62%)-the most common U.S. minority groups. Almost 30% reported no effectiveness assessment of CCT, while 51% reported a quiz at the end of training. Most hospices offered some CCT.
CONCLUSIONS: CCT has been shown to improve healthcare providers' knowledge and skills in caring for diverse patients and it is associated with increased patient satisfaction. Future research should evaluate effectiveness of CCT in improving the ability of hospices to deliver high quality end-of-life care to diverse groups of older adults.
BACKGROUND: Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives.
AIM: To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK.
DESIGN: A retrospective service evaluation. Data were extracted from the electronic patient records.
SETTING/PARTICIPANTS: The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK.
RESULTS: Patients with COVID-19 have lower comorbidity scores, poorer performance status, and a shorter time from referral to death compared to patients without COVID-19. Breathlessness, drowsiness, agitation, and fever are the most prevalent symptoms during COVID-19 compared to pain and drowsiness pre-COVID-19. Time from admission to referral to palliative care is longer for Black, Asian and minority ethnic patients, especially during COVID-19.
CONCLUSION: Early referral to palliative care is essential in COVID-19, especially for Black, Asian and minority ethnic groups. There is urgent need to research why Black, Asian and minority ethnic patients are referred late; how palliative care services have changed; and possible solutions to setting up responsive, flexible, and integrated services.
BACKGROUND: African American (AA) church leaders often advise AAs with serious and life-limiting illnesses (LLIs).
OBJECTIVES: 1) determine beliefs of AA church leaders about palliative care and hospice care (PCHC), 2) assess association of participants' attitude about encouraging a loved one to learn about PCHC with whether PC or HC is consistent with faith beliefs and can reduce suffering and bring comfort, and 3) evaluate an interactive, educational intervention.
DESIGN: prospective, one group, pre and post assessment of beliefs and attitudes
Settings/Subjects: 100 church leaders from 3 AA Churches and one AA Church Consortium.
RESULTS: At baseline, participants held more receptive beliefs about HC than about PC. Those who reported knowing the meaning of PC believed PC is consistent with their faith (81% vs 28%, phi=.53) and can reduce suffering and bring comfort (86% vs 38%, phi =.50). Participants who believed PC was consistent with their faith were more likely to encourage a loved one with a LLI to learn about PCHC than did participants who did not (100% vs 77%, phi =.39, p < 0.001). Post intervention, more participants: 1) perceived that they knew the meaning of PC (48% vs 96%), 2) viewed PC as consistent with their faith (58% vs. 94%), and 3) viewed PC as a means to reduce suffering and bring comfort (67% vs 93%) with a p < 0.0001 for each item. The post intervention results for HC were variable.
CONCLUSIONS: Faith beliefs of AA Church leaders may be aligned with the principles of PCHC.
Background: Latinos are the largest minority group in the United States and when compared with non-Latino whites suffer from higher rates of certain chronic diseases. Latino community health workers (promotores de salud) are successful in improving the health of their communities. However, evidence of their effectiveness in increasing awareness of palliative care (PC) is limited.
Objective: To evaluate the feasibility of applying a promotores de salud model to improve PC awareness among Latinos within the context of chronic disease management.
Methods: Bilingual promotores from Familias en Acción trained 76 southern California promotores on PC and chronic disease management. Promotores agreed to disseminate the information learned to 10+ Latino community members. The strengths of the curriculum and the community's needs were identified during phone interviews six months post-training.
Results: In 406 diverse settings, 69 promotores trained 2734 community members. Interviews with promotores at follow-up established four themes: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, patients' rights, and control; and (4) need for PC information (awareness, access, and support groups).
Conclusion: Promotores proved effective at disseminating information related to PC within chronic disease management to Latino community members. Future training should include information on support groups and where caregivers can seek help while caring for those with a terminal disease.
Importance: Although hospice use is increasing and patients in the US are increasingly dying at home, racial disparities in treatment intensity at the end of life, including hospice use, remain.
Objective: To examine differences between Black and White patients in end-of-life care in a population sample with well-characterized causes of death.
Design, Setting, and Participants: This study used data from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an ongoing population-based cohort study with enrollment between January 25, 2003, and October 3, 2007, with linkage to Medicare claims data. Multivariable logistic regression models were used to examine racial and regional differences in end-of-life outcomes and in stroke mortality among 1212 participants with fee-for-service Medicare who died between January 1, 2013, and December 31, 2015, owing to natural causes and excluding sudden death, with oversampling of Black individuals and residents of Southeastern states in the United States. Initial analyses were conducted in March 2019, and final primary analyses were conducted in February 2020.
Main Outcomes and Measures: The primary outcomes of interest were hospice use of 3 or more days in the last 6 months of life derived from Medicare claims files. Other outcomes included multiple hospitalizations, emergency department visits, and use of intensive procedures in the last 6 months of life. Cause of death was adjudicated by an expert panel of clinicians using death certificates, proxy interviews, autopsy reports, and medical records.
Results: The sample consisted of 1212 participants (630 men [52.0%]; 378 Black individuals [31.2%]; mean [SD] age at death, 81.0 [8.6] years) of 2542 total deaths. Black decedents were less likely than White decedents to use hospice for 3 or more days (132 of 378 [34.9%] vs 385 of 834 [46.2%]; P < .001). After stratification by cause of death, substantial racial differences in treatment intensity and service use were found among persons who died of cardiovascular disease but not among patients who died of cancer. In analyses adjusted for cause of death (dementia, cancer, cardiovascular disease, and other) and clinical and demographic variables, Black decedents were significantly less likely to use 3 or more days of hospice (odds ratio [OR], 0.72; 95% CI, 0.54-0.96) and were more likely to have multiple emergency department visits (OR, 1.35; 95% CI, 1.01-1.80) and hospitalizations (OR, 1.39; 95% CI, 1.02-1.89) and undergo intensive treatment (OR, 1.94; 95% CI, 1.40-2.70) in the last 6 months of life compared with White decedents.
Conclusions and Relevance: Despite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice remain, especially for noncancer deaths. More research is required to better understand racial disparities in access to and quality of end-of-life care.
Background: Metastatic foregut cancers (MFC) are associated with debilitating symptoms that negatively impact patients’ quality of life. Palliative care (PC) is effective in mitigating disease-, psychosocial-, and treatment-related effects and may improve survival in select cases. Our study characterizes PC utilization rates in MFC and identifies factors associated with PC receipt.
Methods: We conducted a retrospective review of 228,027 National Cancer Database patients diagnosed with MFC between 2004 and 2016. Chi-squared tests were used to analyze differences between groups receiving and not receiving PC. Logistic regression was performed to assess the impact of factors on the likelihood of receiving PC.
Results: Overall PC utilization was low (17.8%). A greater proportion of patients not receiving PC were in the lowest median income quartile of < $38,000/year versus those receiving PC (18.1% vs 17.8%, p < 0.0001). Higher education was associated with increased likelihood of receiving PC (OR 1.23 for communities with < 6.3% no high school degree vs = 17.6%, p < 0.0001). Hispanics were significantly less likely to receive PC compared to Whites (OR 0.72, 95% CI 0.68–0.76). Patients treated at academic centers were also more likely to receive PC compared to those treated in the community (OR 1.10, 95% CI 1.05–1.14).
Conclusions: PC is a key component in improving quality of life among MFC patients. Despite slight increases in PC rates over time, PC remains drastically underutilized. Significant racial and socioeconomic disparities in patterns of PC delivery exist. Further studies are needed to understand these disparities in order to identify key targets for interventions aimed at improving equity.
BACKGROUND: Hispanics often have disparities at the end of life. They are more likely to die full code and less likely to have discussions regarding prognosis and do not resuscitate (DNR)/do not intubate (DNI), despite studies showing Hispanic values comfort over the extension of life. Barriers to patient-centered care include language,socioeconomic status and health literacy.
CONTEXT: We evaluated the impact of palliative care (PC) consults on the change of code status and hospice referrals, comparing seriously ill Hispanic and non-Hispanic white patients.
METHOD: A retrospective cohort study of all white and Hispanic patients referred to the PC service of a county hospital from 2006 to 2012. We evaluated ethnicity, language, code status at admission and after PC consult, and hospice discharge. Chi-squared tests were used to analyze characteristics among three groups: non-Hispanic white, English-speaking Hispanic, and Spanish-speaking Hispanic patients.
RESULTS: Of 925 patients, 511 (55%) were non-Hispanic white, 208 (23%) were English-speaking Hispanic, and 206 (22%) were Spanish-speaking Hispanic patients. On admission, there was no statistically significant difference in code status among the three groups (57%, 64%, and 59% were full code, respectively, p = 0.5). After PC consults, Spanish-speaking Hispanic patients were more likely to change their code status to DNR/DNI when compared with non-Hispanic white and English-speaking Hispanic patients (44% vs. 32% vs. 28%, p = 0.05). Spanish-speaking Hispanic patients were more likely to be discharged to hospice when compared with English-speaking Hispanics and non-Hispanic whites (33%, 29%, and 23%, respectively, p = 0.04).
SIGNIFICANCE OF RESULTS: Spanish-speaking Hispanic patients were more likely to change from full code to DNR/DNI compared with non-Hispanic white and English-speaking Hispanic patients, despite similar code status preferences on admission. They were also more likely to be discharged to hospice. PC consults may play an important role in helping patients to align their care with their values and may prevent unwanted aggressive interventions at the end of life.
BACKGROUND: While many Aotearoa/New Zealanders are receiving excellent palliative care the Pacific populations have limited access to available hospice and palliative care services. Little research has been conducted to identify barriers unique to Pacific populations accessing these services. The purpose of this study was to explore key stakeholders' perspectives on the determinants of low access among Pacific populations to these services.
METHODS: Forty-five semi-structured interviews were conducted face-to-face with hospice patients and their families, hospice/health providers and key informants from the Auckland and Wellington region of Aotearoa/New Zealand. The interviews were recorded and transcribed verbatim and a thematic analysis was carried out by identifying, coding and categorising patterns in the data. Identified themes were then discussed further to determine the relevance of the data grouped by theme.
RESULTS: Five interrelated themes affecting access emerged: perception of hospice (often negative) through lack of accurate information, but changing; families' role to look after their own and sick elderly; hospice experiences; continuity of care in the community and the need for information and communication.
CONCLUSION: Hospice and associated palliative care services are under-utilised and commonly misunderstood among Pacific populations in Aotearoa/New Zealand. There is active support following appropriate information received, hence the need for community education and culturally appropriate hospice and palliative services. Inadequate inter-professional communication contributes to polypharmacy and inefficiency in continuity of care across all levels. The Pacific individual is one component of a collective that is critical in major decisions in end-of-life and life changing situations. The findings may guide policies and further research to improve Hospice and Palliative services in Aotearoa/New Zealand.
A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.
BACKGROUND: Early palliative care consultation ("PCC") to discuss goals-of-care benefits seriously ill patients. Risk factor profiles associated with the timing of conversations in hospitals, where late conversations most likely occur, are needed.
OBJECTIVE: To identify risk factor patient profiles associated with PCC timing before death.
METHODS: Secondary analysis of an observational study was conducted at an urban, academic medical center. Patients aged 18 years and older admitted to the medical center, who had PCC, and died July 1, 2014 to October 31, 2016, were included. Patients admitted for childbirth or rehabilitationand patients whose date of death was unknown were excluded. Classification and Regression Tree modeling was employed using demographic and clinical variables.
RESULTS: Of 1141 patients, 54% had PCC "close to death" (0-14 days before death); 26% had PCC 15 to 60 days before death; 21% had PCC >60 days before death (median 13 days before death). Variables associated with receiving PCC close to death included being Hispanic or "Other" race/ethnicity intensive care patients with extreme illness severity (85%), with age <46 or >75 increasing this probability (98%). Intensive care patients with extreme illness severity were also likely to receive PCC close to death (64%) as were 50% of intensive care patients with less than extreme illness severity.
CONCLUSIONS: A majority of patients received PCC close to death. A complex set of variable interactions were associated with PCC timing. A systematic process for engaging patients with PCC earlier in the care continuum, and in intensive care regardless of illness severity, is needed.
Background: The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications.
Methods: A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O’Malley’s methodological framework was followed for scoping reviews.
Results: Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs.
Conclusion: A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.
Background: Very few studies have investigated the racial differences in do-not-resuscitate (DNR) orders in children, and these studies are limited to oncological cases. We aim to characterize the racial difference in DNR orders among U.S. pediatric surgical patients.
Methods: We retrospectively evaluated the mortality of all children who underwent an inpatient surgery between 2012 and 2017 from the National Surgical Quality Improvement Program. We used log-binomial models to estimate the relative risk (RR) and 95% confidence interval (CI) of DNR use comparing white with African American (AA) children. To estimate the risk-adjusted difference in DNR orders, we controlled the analyses for age, prematurity status, emergent case status, American Society of Anesthesiologists class, year of operation, surgical specialty, and surgical complexity.
Results: Between 2012 and 2017, a total of 276,917 children underwent inpatient surgery, of whom 0.8% (n = 1601) died within 30 days of operation. Of the 1601 mortality cases, we retained 1212 children who were of either AA (26.0%, n = 350) or white (63.9%, n = 862) race. Most children were neonates, had an American Society of Anesthesiologists class =4 (70.0%, n = 811), and developed one or more postoperative complications (68.7%, n = 833). Overall, AA children were more likely to be neonates at the time of surgery (42.0% vs. 40.3%, p < 0.001), to be premature (66.3% vs. 49.0%, p < 0.001), and develop one or more postoperative complications (73.7% vs. 66.7%, p = 0.017). White children were three times more likely to have a DNR order than their AA peers (adjusted RR: 3.01, 95% CI: 1.09–8.56, p = 0.044).
Conclusion: Among pediatric surgical patients in the United States, children of white race were three times more likely to have a DNR order in place than their AA peers despite the latter being “sicker” and more likely to develop postoperative complications. The mechanisms underlying this racial difference deserve further elucidation to improve shared decision making and goal-concordant care.
Background: A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP).
Measures: Number of eligible patients who completed an ACP form.
Intervention: Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.
Outcomes: The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%.
Conclusion: Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.
Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.
Hispanic Americans are among the fastest growing minority groups in the USA, and understanding their preferences for medical decision-making and information sharing is imperative to provide high quality end of life care. Studies exploring these decision control preferences (DCPs) are limited and found inconsistent results. (1) To measure DCPs of Hispanic patients in the Bronx. (2) To measure disclosure of information preferences of Hispanic patients in the Bronx. This is a cross-sectional survey. One hundred nineteen cancer patients who self-identified as Hispanic and were waiting at the oncology clinic at Montefiore Medical Center Cancer Center. Proportions of patients endorsing DCPs and disclosure of information preferences are reported. The relationship between patient characteristics and DCPs was tested using chi-squared tests of homogeneity. The majority (63, 52.9%) preferred shared decision-making with their doctors, families or both, while 46 (38.7%) had an active decision-making style. A minority (9, 7.6%) had a passive decision-making style, deferring to their families, and only 1 (0.8%) deferring to the physician. No demographic characteristics significantly predicted DCPs. The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis (94%), treatment options (94%), treatment expectations (92%), and treatment risks and benefits (96%). These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis, and plan.
PURPOSE: To determine how demographic, socioeconomic, health and psychosocial factors predict preferences to accept life prolonging treatments (LPT) at the end of life.
METHODS: This is a retrospective cohort study of a nationally representative sample of community-dwelling older Americans (N=1,648). Acceptance of LPT was defined as wanting to receive all life prolonging treatments in the hypothetical event of severe disability or severe chronic pain at the end of life (EOL). Participants with a DPOA, living will or who discussed EOL with family were determined to have expressed their EOL preferences. The primary analysis used survey-weighted logistic regression to measure the association between older adult characteristics and acceptance of LPT. Secondarily, the associations between LPT preferences and health outcomes were measured using regression models.
RESULTS: Approximately 31% of older adults would accept LPT. Non-white race/ethnicity (OR=0.54, CI (0.41,0.70), White vs. non-White), self-realization (OR=1.34, CI (1.01,1.79)), attendance of religious services (OR=1.44, CI (1.07,1.94)), and expression of preferences (OR=0.54, CI(0.40,0.72)) were associated with acceptance of LPT. LPT preferences were not independently associated with mortality or disability.
CONCLUSIONS: Approximately 1/3 of older Americans would accept LPT in the setting of severe disability or severe chronic pain at the end of life. Adults who discussed their EOL preferences were more likely to reject LPT. Conversely, minorities were more likely to accept LPT. Sociodemographics, physical capacity and health status were poor predictors of acceptance of LPT. A better understanding of the complexities of LPT preferences is important to ensuring patient-centered care.