American Journal of Hospice & Palliative Medicine最新文献

Background: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use.

Objective: This study explored US South Asian youths' knowledge of, and attitudes towards hospice care.

Design: Qualitative study, using focus group discussions.

Methods: Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion.

Results: Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care.

Conclusions: Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.

Background: The caregivers (CG) of patients with serious illnesses often experience stress and psycho-social issues. High burden is expected for CG of patients for whom liver transplant (LT) is the only curative option. This study aims to measure the burden, unmet needs, and quality of life (QoL) of CG of patients being evaluated for LT.

Methods: This cross-sectional study enrolled CG of patients being evaluated for LT. CaTCoN (Caregiving Tasks, Consequences and Needs Questionnaire) was used to assess caregiving consequences and needs related to interactions with healthcare professionals (HCPs). ZBI-12 (Zarit Burden Interview) was used to assess CG burden, and PROMIS-29 (Patient Reported Outcomes Measurement Information System) to assess QoL. Caregivers completed the study instruments in person, while they were in the clinic. CaTCoN scores from our study were compared with cancer caregivers' historical data.

Results: 18 CG were enrolled, mean age 54 [14] years; 72% were white and 77% were women. 61% worked full time; 45% provided >20 hours of care per week. Two-thirds cared for patients with alcoholic liver disease. All CaTCoN scores were no different from CGs of cancer patients (all P > .05). The total ZBI score (mean SD 12.4 [8.3]) did not differ from published scores for CG of cancer patients (12.0 [8.5]). 44% had high (≥12) ZBI scores reflecting "high burden." Their PROMIS-29 T scores, compared to those with low burden, showed more anxiety (P = .01), depression (P = .04), fatigue (P = .02) and deteriorated social function (P = .009). Physical function and social function were diminished among these CGs compared to the general population (P < .0001).

Conclusion: CGs of patients being evaluated for LT suffer from high burden similar to cancer CGs and have reduced physical and social function. Despite the small sample size, the data completion rate was almost 100%.

Advance care planning (ACP) is a nuanced process where patients identify their goals and consider their preferences for medical care over time. Recent systematic reviews have shown mixed findings about the association of ACP with the provision of goal-concordant care, completion of advance directives, and health care utilization. Despite a lack of consistent benefit, patients and clinicians value ACP and policy makers at the state and federal level have been moving ACP policies forward. All fifty states have policies regarding advance directives, and federal policy has had important implications on promoting awareness of ACP and its corresponding legal documents such as advance directives. However, challenges to effectively incentivize and facilitate the delivery of high-quality ACP exist. This paper provides an overview of key federal policy aspects and barriers that affect ACP use including: limitations of Medicare ACP billing codes, disparities in telemedicine access, difficulties with interoperability of advance directives, and underutilization of ACP as a mandatory measure in federal programs. This paper highlights key opportunities to improve federal ACP policy. Because ACP is an essential part of high-quality care and is deeply embedded in state and federal policies, it is imperative that clinicians are knowledgeable about these issues so they may more effectively engage in ACP policy.

Background and Objectives: Advance Care Planning (ACP) is a critical tool in advancing patient self-determination in health care delivery. Despite increasing research into racial/ethnic minorities' engagement with ACP in the US, studies on Muslim Americans are relatively scarce. We aimed to examine levels of ACP engagement among Muslim adults and measure associations between socio-demographic and religiosity characteristics and ACP engagement. Methodology: This was a survey study among Muslims attending mosque seminars in Chicago and Washington DC. Religiosity characteristics were assessed using a modified version of the Duke University Religion Index (DUREL) and the Psychological Measure of Islamic Religiousness (PMIR). ACP engagement was measured by the 4-item ACP Engagement Survey (4-ACPES) and 2 additional items covering ACP religious dimensions. Statistical analyses were performed using SPSS 28.0. Results: Out of 152 respondents, 56.2% to 72.6% were in the pre-contemplation stage of ACP across the 6 ACP items. Bivariate analyses showed that ACP engagement was correlated with participant age, ethnicity, duration of stay in the US and country of birth. Multivariable analyses demonstrated no association between religiosity characteristics and ACP engagement; independent predictors of ACP engagement were race/ethnicity (being South Asian), country of birth (born outside the US) and duration of stay in the US (longer years). Discussion/Conclusion: Our study suggests that American Muslims are largely unprepared to engage with ACP. Moreover, religiosity does not predict ACP engagement. We call for greater community outreach and educational programs that instill awareness and knowledge on the importance of ACP, and provide resources for tailored religiously-oriented conversations that assist individuals with ACP.

Background: We tested a novel hospice-specific patient decision aid to determine whether the decision aid could improve hospice knowledge, opinions of hospice, and decision self-efficacy in making decisions about hospice. Methods: Two patient-level randomized studies were conducted using two different cohorts. Recruitment was completed from March 2019 through May 2020. Cohort #1 was recruited from an academic hospital and a safety-net hospital and Cohort #2 was recruited from community members. Participants were randomized to review a hospice-specific patient decision aid. The primary outcomes were change in hospice knowledge, hospice beliefs and attitudes, and decision self-efficacy Wilcoxon signed rank tests were used to evaluate differences on the primary outcomes between baseline and 1-month. Participants: Participants were at least 65 years of age. A total of 266 participants enrolled (131 in Cohort #1 and 135 in Cohort #2). Participants were randomized to the intervention group (n = 156) or control group (n = 109). The sample was 74% (n = 197) female, 58% (n = 156) African American and mean age was 74.9. Results: Improvements in hospice knowledge between baseline and 1-month were observed in both the intervention and the control groups with no differences between groups (.43 vs .275 points, P = .823). There were no observed differences between groups on Hospice Beliefs and Attitudes scale (3.29 vs 3.08, P = .076). In contrast, Decision Self-Efficacy improved in both groups and the effect of the intervention was significant (8.04 vs 2.90, P = -.027). Conclusions: The intervention demonstrated significant improvements in decision self-efficacy but not in hospice knowledge or hospice beliefs and attitudes.

Background: Clinical trial evidence on the effect of palliative care models in reducing aggressive end-of-life care is inconclusive. We previously reported on an integrated inpatient palliative care and medical oncology co-rounding model that significantly reduced hospital bed-days and postulate additional effect on reducing care aggressiveness.

Objectives: To compare the effect of a co-rounding model vs usual care in reducing receipt of aggressive treatment at end-of-life.

Methods: Secondary analysis of an open-label stepped-wedge cluster-randomized trial comparing two integrated palliative care models within the inpatient oncology setting. The co-rounding model involved pooling specialist palliative care and oncology into one team with daily review of admission issues, while usual care constituted discretionary specialist palliative care referrals by the oncology team. We compared odds of receiving aggressive care at end-of-life: acute healthcare utilization in last 30 days of life, death in hospital, and cancer treatment in last 14 days of life between patients in two trial arms.

Results: 2145 patients were included in the analysis, and 1803 patients died by 4th April 2021. Median overall survival was 4.90 (4.07 - 5.72) months in co-rounding and 3.75 (3.22 - 4.21) months in usual care, with no difference in survival (P = .12). We found no significant differences between both models with respect to receipt of aggressive care at end-of-life. (Odds Ratio .67 - 1.27; all P > .05).

Conclusion: The co-rounding model within an inpatient setting did not reduce aggressiveness of care at end-of-life. This could be due in part to the overall focus on resolving episodic admission issues.

Introduction: This study describes the end-of-life (EOL) care planning and bereavement practices among adult day services centers (ADSC) when an ADSC participant is dying or has died. Methods: Data are from the 2018 National Study of Long-term Care Providers' biennial survey of ADSCs. Respondents were asked about the following 4 practices: 1) honoring the deceased in some public way in this center; 2) offering bereavement services to staff and participants; 3) documenting in the care plan what is important to the individual at the end of life (EOL), such as the presence of family or religious or cultural practices; and 4) discussing spiritual needs at care planning conferences. ADSC characteristics included US Census region, metropolitan statistical area status, Medicaid authorization, electronic health records (EHR) use, for-profit status, employment of aides, services provision, and model type. Results: About 50% to 30% of ADSCs offered the EOL care planning or bereavement services. Honoring the deceased was the most common practice (53%), followed by bereavement services (37%), discussing spiritual needs (29%), and documenting what is important at EOL (28%). Fewer ADSCs in the West had EOL practices relative to the other regions. The EOL planning and bereavement practices were offered more often in ADSCs that used EHRs, accepted Medicaid, employed an aide, provided nursing, hospice, and palliative care services, and were categorized as medical models, compared with ADSCs without these characteristics. Conclusion: These results highlight the importance of understanding how ADSCs provide EOL and bereavement care to participants who are near EOL.

Background: The rising trend of providing palliative care to residents in Canadian long-term care facilities places additional demands on care staff, increasing their risk of burnout. Interventions and strategies to alleviate burnout are needed to reduce its impact on quality of patient care and overall functioning of healthcare organizations.

Aim: To examine the feasibility of implementing online modules with the primary goal of determining recruitment and retention rates, completion time and satisfaction with the modules. A secondary goal was to describe changes in burnout and related symptoms associated with completing the modules.

Setting: This single-arm, nonrandomized feasibility study was conducted in five long-term care sites of a publicly-funded healthcare organization in Vancouver, British Columbia, Canada. Eligible participants were clinical staff who worked at least 1 day per month.

Results: A total of 103 study participants consented to participate, 31 (30.1%) of whom were lost to follow-up. Of the remaining 72 participants, 64 (88.9%) completed the modules and all questionnaires. Most participants completed the modules in an hour (89%) and found them easy to understand (98%), engaging (84%), and useful (89%). Mean scores on burnout and secondary traumatic stress decreased by .9 (95% CI: .1-1.8; d = .3) and 1.4 (95% CI: .4-2.4; d = .4), respectively; mean scores on compassion satisfaction were virtually unchanged.

Conclusions: Modules that teach strategies to reduce burnout among staff in long-term care are feasible to deliver and have the potential to reduce burnout and related symptoms. Randomized controlled trials are needed to assess effectiveness and longer-term impact.

Purpose: Advance directives (AD) are recommended for persons with lung cancer, yet few studies have investigated AD and healthcare power of attorney (HCPOA) documentation for this population in rural regions of the United States. The purpose of this study was to examine demographic and clinical factors associated with AD and HCPOA documentation for persons with lung cancer in rural eastern North Carolina (ENC). Methods: A cross-sectional retrospective chart review was conducted to collect demographic and clinical data from electronic health records from 2017 to 2021 at a tertiary cancer center and regional satellite sites in ENC. Descriptive statistics and Chi-Square Tests of Independence were used for data analysis. Findings: The sample's mean age was 69.5 years (n = 402, SD = 10.5, range = 28 - 92). Most participants were male (58%) and had a smoking history (93%). Consistent with regional population statistics, 32% of persons were black, and 52% lived in rural counties. Just 18.5% of the sample had a documented AD and 26% had a healthcare power of attorney. Black persons had significantly lower AD and HCPOA (P < .001) documentation than white persons. Rural-dwellers had significantly lower HCPOA documentation than urban-dwellers (P = .03). For all other variables, no significant differences were found. Conclusions: These findings suggest that AD and HCPOA documentation are low for persons with lung cancer in ENC, particularly for black persons and rural-dwellers. This disparity highlights the need for enhanced advance care planning (ACP) access to and outreach in the region.