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.
Importance: Less than 25% of African American individuals have completed advance directives and are thus vulnerable to poor end-of-life care. Low-cost interventions are needed to increase engagement in advance care planning (ACP).
Objectives: To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed.
Exposures: Attendance at an end-of-life conversation game (Hello) played in groups of 4 to 6 participants for 60 minutes.
Design, Setting, and Participants: Prospective, mixed-methods cohort study conducted from 2018 to 2019 with a 3- to 11-month follow-up interview. Game events were held in 53 community venues across the US; 15 were purposively sampled for onsite research procedures. Of 428 attendees at purposively sampled sites, 386 (90%) consented to research procedures (6 attendees were removed from analysis for protocol deviation). Of 367 attendees who provided accurate contact information, 232 (63%) were contacted, and 220 were included in follow-up analyses.
Main Outcomes and Measures: The primary outcome was advance directive completion rates after the intervention. Secondary outcomes included rates of other ACP behaviors, ACP engagement, conversation satisfaction and realism, and participants’ Net Promoter Score (a measure of endorsement). Follow-up telephone interviews explored the game experience and relevant ACP behaviors of attendees.
Results: Of 380 individuals who participated (mean [SD] age, 62.2 [13.8] years; 304 were female [80%], and 348 were [92%] African American), none withdrew because of an adverse event. After the intervention, 91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 ACP behavior. There was a moderate increase in the self-efficacy domain on the ACP Engagement Survey (mean [SD] change from before to after the game, 0.54 [0.98]; P < .001). The mean (SD) conversation satisfaction score was 6.21 (0.93) (range, 1-7, with 7 being highest satisfaction), and the overall Net Promoter Score was 57.89 (range, -100 to 100, with 100 being highest endorsement). Interviews revealed 5 themes about the game: (1) it was a useful forum for ACP; (2) it provided new information and perspective; (3) it was emotionally beneficial; (4) it increased appreciation for ACP; and (5) it empowered and motivated participants to perform ACP. Mixed-methods integration showed convergence across data sets.
Conclusions and Relevance: Among a nationwide sample of African American individuals, the end-of-life conversation game appeared to be well received and was associated with high rates of ACP behavior. This low-cost and scalable tool may help reduce health disparities associated with end-of-life care.
BACKGROUND: There is increasing recognition of the importance of early incorporation of palliative care services in the care of patients with advanced cancers. Hospice-based palliative care remains underutilized for black patients with cancer, and there is limited literature on racial disparities in use of non-hospice-based palliative care services for patients with cancer.
OBJECTIVE: The primary objective of this study is to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States.
DESIGN: This retrospective cohort study analyzed 204 175 hospital admissions of patients with advanced cancers between 2012 and 2014. The cohort was identified through the National Inpatient Dataset. International Classification of Disease, Ninth Revision codes were used to identify receipt of a palliative care consultation.
RESULTS: Of this, 57.7% of those who died received IPCC compared to 10.5% who were discharged alive. In multivariable logistic regression models, black patients discharged from the hospital, were significantly less likely to receive a palliative care consult compared to white patients (odds ratio [OR] black: 0.69, 95% CI: 0.62-0.76).
CONCLUSIONS: Death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There are significant racial disparities in the utilization of IPCC for patients with advanced cancer.
BACKGROUND: Acute hospitalization is a frequent reason for live discharge from hospice. Although risk factors for live discharge among hospice patients have been well documented, prior research has not examined the role of neighborhood socioeconomic characteristics, or how these characteristics relate to racial/ethnic disparities in hospice outcomes.
OBJECTIVE: To examine associations between neighborhood socioeconomic characteristics and risk for live discharge from hospice because of acute hospitalization. The authors also explore the moderating role of race/ethnicity in any observed relationship.
RESEARCH DESIGN: Retrospective cohort study using electronic medical records of hospice patients (N=17,290) linked with neighborhood-level socioeconomic data (N=55 neighborhoods). Multilevel models were used to identify the independent significance of patient and neighborhood-level characteristics for risk of live discharge because of acute hospitalization.
RESULTS: Compared with the patients in the most well-educated and affluent sections of New York City [quartile (Q)4], the odds of live discharge from hospice because of acute hospitalization were greater among patients who resided in neighborhoods where lower proportions of residents held college degrees [Q1 adjusted odds ratio (AOR), 1.36; 95% confidence interval (CI), 1.06-1.75; Q2 AOR, 1.41; 95% CI, 1.07-1.84] and median household incomes were lower (Q1 AOR, 1.42; 95% CI, 1.10-1.85; Q2 AOR, 1.43; 95% CI, 1.10-1.85; Q3 AOR, 1.39; 95% CI, 1.07-1.80). However, these observed relationships were not equally distributed by patient race/ethnicity; the association of neighborhood socioeconomic disadvantage and risk for live discharge was significantly lower among Hispanic compared with white patients.
CONCLUSIONS: Findings demonstrate neighborhood socioeconomic disadvantage poses a significant risk for live discharge from hospice. Additional research is needed to clarify the social mechanisms underlying this association, including greater attention to the experiences of hospice patients from under-represented racial/ethnic groups.
INTRODUCTION: Indigenous patients with life-limiting conditions have complex needs, experience reduced access to and uptake of treatment, and have lower utilisation of palliative care services than the general population. Lack of understanding of the role of palliative care and poor availability of culturally safe specialist palliative care services impact on Indigenous people's end-of-life decision-making.
METHODS: To understand Aboriginal people's perspectives and experiences at the end of life, an exploratory study using facilitated group discussions in community settings in a region of Western Australia was undertaken. Local Aboriginal people were engaged to talk frankly about their wishes and concerns around end of life. The community consultations included two meetings at the local Aboriginal corporation, an evening meeting for invited community members, a meeting at the local Aboriginal community controlled health service and two further meetings of community members at local gathering places. These were supplemented by the analysis of previous in-depth video-recorded interviews that were undertaken with Aboriginal people with cancer reporting on their concerns and wishes.
RESULTS: The community consultations raised considerable discussion about wills, where to die, burial versus cremation, and the cost of funerals. Possibilities emerging from participants' reflections on the issue were public celebrations to honour someone's life, the potential use of sorting cards to help discussions about end-of-life personal wishes, and interest in making and decorating coffins. Aboriginal people with cancer raised similar issues, and focused on avoiding family disharmony by ensuring their family were aware of their end-of-life wishes.
CONCLUSION: Within a safe space, Aboriginal people were happy to talk about end-of-life wishes, although certain aspects of death remain contentious. Sorting cards, ceremonies, education and care roles involving Aboriginal people offer potential means for effectively engaging Aboriginal people in preparing for death and dealing with grief.
Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.
Background: African Americans receive more aggressive end-of-life care than Whites. Little is known about how palliative care consultation to discuss goals-of-care (“PCC”) is associated with acute care utilization and costs by race.
Objective: To compare future acute care costs and utilization between propensity-matched cohorts of African Americans with and without PCC, and Whites with and without PCC.
Design: Secondary analysis of a retrospective cohort study.
Setting/Subjects: Thirty-five thousand one hundred and fifty-four African Americans and Whites age 18+ admitted for conditions other than childbirth or rehabilitation, who were not hospitalized at the end of the study, and did not die during index hospitalization (hospitalization during which the first PCC occurred).
Measurements: Accumulated mean acute care costs and utilization (30-day readmissions, future hospital days, future intensive care unit [ICU] admission, future number of ICU days) after discharge from index hospitalization.
Results: No significant difference between African Americans with or without PCC in mean future acute care costs ($11,651 vs. $15,050, p = 0.09), 30-day readmissions (p = 0.58), future hospital days (p = 0.34), future ICU admission (p = 0.25), or future ICU days (p = 0.30). There were significant differences between Whites with PCC and those without PCC in mean future acute care costs ($8,095 vs. $16,799, p < 0.001), 30-day readmissions (10.2% vs. 16.7%, p < 0.0001), and future days hospitalized (3.7 vs. 6.3 days, p < 0.0001).
onclusions: PCC decreases future acute care costs and utilization in Whites and, directionally but not significantly, in African Americans. Research is needed to explain why utilization and cost disparities persist among African Americans despite PCC.
CONTEXT: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer.
OBJECTIVES: To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.
METHODS: We conducted a prospective cohort study at 9 pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify higher intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, Asian/other race) parents.
RESULTS: 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (OR .19, 95%CI .06-.63, P=.006) and the fact that current treatment was unlikely to offer cure (OR .07, 95%CI .02-.27, P<.0001). Children of minority parents were more likely to experience higher intensity medical care (OR 3.01, 95%CI 1.29-7.02, P=.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with higher intensity medical care (aOR 2.14, 95%CI .84-5.46, P=.11), although power to detect an association was limited.
CONCLUSION: Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations.
Background: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement.
Objectives: (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research.
Method: The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest.
Results: The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515; missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010–30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses.
Conclusion and implications: In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.
Purpose: Racial and ethnic minority patients receive poorer quality end-of-life (EoL) care compared with white patients. Differences in quality of communication (QOC) with clinicians may contribute to these disparities. We measured differences in satisfaction with communication in the intensive care unit (ICU) by race and ethnicity.
Materials and Methods: This is a cross-sectional survey of family members of patients in ICUs of an academic medical center serving a diverse urban population using The Family Satisfaction with the ICU (FS-ICU) and QOC scales.
Results: One hundred surveys were completed (18.8% white, non-Hispanic; 34.4% black, non-Hispanic; 31.3% Hispanic; 15.6% other race/ethnicity). Mean FS-ICU score was 84.2 (standard deviation [SD] 20.5) for white patients, 83.3 (SD 16.2) for black patients, 82.7 (SD 17.8) for Hispanic or Latino patients, and 80.9 (SD 18.8) for patients with other race/ethnicity (Kruskal-Wallis, P = .92). Differences remained insignificant when controlling for patient and respondent characteristics. The QOC scale was not scored due to nonresponse levels on questions about EoL communication.
Conclusions: Uniformly high ratings may have been influenced by avoidance of EoL discussion. This study is inconclusive regarding whether QOC influences disparities in EoL care since quality of EoL communication was not captured.
Aim: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and estimate effect-size for the power analysis in a future clinical trial.
Design: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion.
Methods: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients’ home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (1) caregivers’ anxiety and depression measures; (2) the presence of patient’s signed advance directives in the medical record or not; and (3) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019.
Discussion: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrollment. Enrollment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial.
Impact: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home.
BACKGROUND: Ethnicity may be associated with important aspects of end-of-life care, such as what treatments are received, access to palliative care and where people die. However, most studies have focused on end-of-life care of white, Hispanic and black patients. We sought to compare end-of-life care delivered to people of Chinese and South Asian ethnicity with that delivered to others from the general population, in Ontario, Canada.
METHODS: In this population-based cohort study, we included all people who died in Ontario, Canada, between Apr. 1, 2004, and Mar. 31, 2015. People were identified as having Chinese or South Asian ethnicity on the basis of a validated surname algorithm. We used modified Poisson regression analyses to assess location of death and care received in the last 6 months of life.
RESULTS: We analyzed 967 339 decedents, including 18 959 (2.0%) of Chinese and 11 406 (1.2%) of South Asian ethnicity. Chinese (13.6%) and South Asian (18.5%) decedents were more likely than decedents from the general population (10.1%) to die in the intensive care unit (ICU). The adjusted relative risk of dying in intensive care was 1.21 (95% confidence interval [CI] 1.15 to 1.27) for Chinese and 1.25 (95% CI 1.20 to 1.30) for South Asian decedents. In their last 6 months of life, decedents of Chinese and South Asian ethnicity experienced significantly more ICU admission, hospital admission, mechanical ventilation, dialysis, percutaneous feeding tube placement, tracheostomy and cardiopulmonary resuscitation than the general population.
INTERPRETATION: Decedents of Chinese and South Asian ethnicity in Ontario were more likely than decedents from the general population to receive aggressive care and to die in an ICU. These findings may be due to communication difficulties between patients and clinicians, differences in preferences about end-of-life care or differences in access to palliative care services.
OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.
METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.
RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.
SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.
Objectives: Given the ethnic/racial disparities in end-of-life care, this study aimed to describe and identify factors affecting engagement in three types of advance care planning including informal talk, living will, and durable power of attorney for health care among ethnic/racial minority older adults. Living will refers to any written instruction about medical treatments at the end-of-life while durable power of attorney for health care allows someone to make a health care decision when an individual is incapable of making a reasoned decision.
Design: We used a subset of racial/ethnic minority groups drawn from the second wave of the National Health Aging and Trends Survey (n = 543) collected in 2012.
Results: The descriptive result showed that informal talk (60%) happened most followed by durable power of attorney for health care (30%) and living will (26.5%) completion. Multivariate logistic regression analyses found that higher education and lower preference toward life-sustaining treatment were associated with engagement in all three types of advance care planning. Having multimorbidity and U.S. born were associated with having informal talk. Non-Hispanic others were more likely to have informal talk and complete durable power of attoreny for health care to compared to Blacks. Furthermore, married older adults were more likely to complete living wills compared to those separated/divorced or never married.
Conclusions: Our findings about different factors affecting engagement in advance care planning indicate that we may need targeted approaches to promote each type of advance care planning for ethnic/racial minority older adults.
Mexican Americans (MAs), 1 of 10 subgroups of Latinos, are the largest and fastest growing Latino subgroup in the United States; yet, their access to end-of-life (EOL) care using hospice services is low. An investigation was needed into extant research-based knowledge about factors influencing EOL care decisions among MAs to guide health-care professionals in assisting MAs to make timely, acceptable, and satisfactory EOL care decisions. To determine whether gender was an influence on EOL decision-making among older MAs, CINAHL and PubMed were searched for articles published between 1994 and 2018. Relevant sources were also identified through the reference lists of review articles. Reports were included if they were written in English, involved participants aged 50 years and older who identified themselves as MA, and data derived directly from participants. Reports in which MAs were not equally represented in the sample, large databases, and instrumentation development and testing articles were excluded. Of the 345 unduplicated articles identified in our electronic search and the 47 identified through review articles, 22 met the inclusion criteria. Content analysis was conducted using a priori codes from the Ethno-Cultural Gerontological Nursing Model (ECGNM). Only 8 (36%) of the 22 articles reported on MA older adults' gendered experiences related to EOL decision-making. Results indicate an association between gender and EOL decision-making. As the older MA population grows, tackling disparities in EOL services use requires attention to how culture and gender influence EOL decision-making and care.
The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person’s Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person’s mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The “indigenous” model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.
Objectives: To investigate racial differences in implementation of 11 evidence-based cancer pain management strategies in a matched sample of patients in hospice.
Sample & Setting: 32 African American and 32 Caucasian American older adults (aged 65 years or older) with cancer pain receiving hospice care in the midwestern United States.
Methods & Variables: Matched cohort secondary data analysis of postintervention data in a cluster randomized controlled trial was used. Main outcomes are the summative and individual Cancer Pain Practice Index scores.
Results: There were few statistically significant or clinically meaningful differences in implementation of individual best practices for pain management by race. Assessment of primary pain characteristics and management of opioid-induced constipation with a bowel regimen was significantly lower in African Americans than in Caucasian Americans.
Implications for Nursing: African American older adults receiving hospice care at the end of life received pain management that was, overall, comparable to matched Caucasian American older adults. Hospice and oncology nurses play a critical role in effective pain management and should continue to implement evidence-based guidelines for pain management into daily practice. Diffusing the hospice model and principles of pain and symptom management into other settings and specialty care areas may reduce widespread pain disparities.