The American journal of hospice & palliative care最新文献

Background: Advance care planning involves discussing individuals' future medical treatment and care preferences. Nurses, due to their close relationships with patients and families, may be well-positioned to lead these discussions. Exploring the components and characteristics of nurse-led ACP interventions is essential for enhancing their implementation, effectiveness, and sustainability.

Objective: This scoping review aimed to explore the characteristics of nurse-led ACP interventions in adult patients, identify the populations and settings where these interventions have been utilized, and the outcomes of these interventions in the U.S.

Methods: A scoping review was conducted following Arksey and O'Malley's five-stage framework. Using keywords related to nurse-led ACP interventions, a comprehensive search was performed across PubMed, Web of Science, CINAHL, EMBASE, and PsycINFO databases.

Results: Twelve studies met the inclusion criteria. These studies were conducted in varied settings. Registered nurses, oncology nurse navigators, and other specialized nurses primarily delivered nurse-led ACP interventions. The interventions ranged from one to two sessions and utilized various models and resources such as the Five Wishes and Respecting Choices.

Conclusions: Nurse-led ACP interventions have shown significant positive outcomes, including increased engagement in ACP, improved attitudes towards ADs, higher completion rates of ADs, and enhanced patient-surrogate congruence. These interventions are well-received by patients and can be implemented in diverse settings. However, a general guideline regarding nurse-led ACP interventions is needed to address the specific duration, sessions, and mode of delivery required for their optimal effectiveness.

Background: Hepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined.

Aim: This pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm.

Design: Patients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed.

Results: Twenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'.

Conclusion: There is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.

Rationale: Outpatients with interstitial lung disease often experience serious symptoms, yet infrequently receive palliative care. Objective: To determine the feasibility and clinical impact of a mobile application (PCplanner) in an outpatient setting. Methods: We conducted a pilot randomized controlled trial among adults with interstitial lung disease in a single-center academic clinic. Clinical outcomes included change in Needs at the End-of-Life Screening Tool (NEST) scale between baseline and 3 months as well as frequency of advance care planning discussions and referrals to palliative care services. Results: Observed feasibility outcomes were similar to targeted benchmarks including randomization rates (82.1% vs 80%) and retention (84.8% vs 80%). Mean NEST scores between the intervention and control group were 38.9 (SD, 18.9) vs 41.5 (SD, 20.5) at baseline, 34.6 (SD, 18.9) vs 33.6 (SD, 19.4) at 1 month after clinic visit, 40.5 (SD, 21.6) vs 35.3 (SD, 25.0) at 3 months after clinic visit. Changes in NEST scores between baseline and 3 months showed no difference in the primary outcome (P = 0.481, 95% CI [-8.45, 17.62]). Conclusion: Among patients with interstitial lung disease, a mobile app designed to focus patients and clinicians on palliative care principles demonstrated evidence of feasibility. Although changes in self-reported needs were similar between intervention and control groups, more patients in the intervention group updated their advance directives and code status compared to the control group. Clinical Trial Registration: Palliative Care Planner (PCplanner) NCT05095363. https://www.clinicaltrials.gov/study/NCT05095363.

Background: Patients from underrepresented racial and ethnic groups (URGs) in the United States (US) experience disparities in accessing palliative care (PC) at the end of life (EOL). Additionally, little effort has been made to understand their experiences with PC.

Objectives: To identify and synthesize existing literature on PC experiences among adults from URGs in nursing homes, community settings, and hospitals in the US.

Methods: Guided by the Joanna Briggs Institute methodological recommendation and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we conducted a scoping review. We searched PubMed, EMBASE, CINAHL, Scopus, and ProQuest Dissertations & Theses Global from inception to January 2024.

Results: We included five studies representing Hispanic/Latino, American Indian, African/Black American, and Chinese individuals. Data were organized around two themes: navigating PC pathway and choices and practices during PC. Navigating PC pathway theme highlights that despite the several barriers URGs face when accessing PC, they seek PC services due to their limited formal family assistance in managing their chronic conditions and pain. The choices and practices during PC theme emphasize the roles URG family members play in EOL care, the patient's care preferences, and their spiritual practices and beliefs related to EOL care.

Conclusion: This scoping review reveals limited literature about URG experiences with PC and highlights the need for more studies to focus on making PC services more accessible to URGs and providing culturally sensitive care to meet the needs of the diverse growing US population.

Background: Palliative care addresses a range of needs, from symptom management to providing support to patients with hepatocellular cancer (HCC) and their families throughout the illness. However, research on palliative care in HCC remains limited, particularly during the COVID-19 pandemic. This study investigates the healthcare utilization associated with palliative care referral among patients with HCC. Methods: This is a retrospective cross-sectional analysis conducted using the National Inpatient Sample (NIS) database from 2019 to 2021 among patients with HCC age ≥18 years. Results: Among the 35,220 hospitalizations with HCC as the principal diagnosis, 18.7% received inpatient palliative care referrals. Factors associated with increased palliative care referrals included age ≥65 years, Midwest region, Charlson Comorbidity Index (CCI) score ≥3, and end-of-life care, as reflected by discharge resulting in death. No racial or insurance disparities were observed. Palliative care consultations were associated with lower total hospital costs ($20,573 vs $26,035, <0.0001). A higher prevalence of "do-not-resuscitate" status was also found among patients with palliative care referrals. Conclusion: The study provides an understanding of palliative care utilization across pre-pandemic and pandemic periods. Factors such as advanced age, hospital region, and underlying comorbidities influenced the likelihood of referral, with no discernible racial or insurance disparities identified. Palliative care involvement has also been shown to provide cost-effective supportive care with lower hospital costs. These findings provide invaluable guidance for optimizing the integration of palliative care alongside HCC management.

Purpose: The use of antibiotics for end-of-life patients is controversial; currently there is limited guidance on the use of antibiotics in hospice patients. The threat of antibiotic resistance, risk of adverse events, variable efficacy, and time to benefit in hospice patients makes their use divisive. Patients' potential care needs are estimated using the palliative performance scale (PPS) with lower scores indicating more care is required. The purpose of this project is to examine the utilization of antibiotics for urinary tract infections (UTIs) in hospice patients.

Methods: This multi-center retrospective observational cohort study evaluated the prescribing of antibiotics in symptomatic vs asymptomatic hospice patients being treated for UTIs and assessed antibiotic initiation based on PPS of ≥30% or <30%. Patients included in this study were adults initiated on oral antibiotics for UTI. Exclusion criteria included antibiotics initiated prior to admission, prophylactic antibiotics, non-oral antibiotics, or if the patient revoked election of hospice.

Results: A total of 56 patients were prescribed antibiotics for UTIs during the 1-year study period. Half of the antibiotics were prescribed appropriately based on documented symptoms when starting the antibiotics. There was not a statistically significant difference between appropriate utilization based on PPS ≥30% or <30% using the Mann-Whitney U test (P = 0.255).

Conclusion: The prescribing of antibiotics in end-of-life patients is not always appropriate regardless of the PPS. This may indicate that antibiotics are initiated in asymptomatic hospice patients, and the utilization of unnecessary medications presents the risk of adverse effects.

Backgrounds: Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. Method: A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12 months. Baseline (T₀) and three-month post-intervention (T₁) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. Results: A sample of 628 FCs were enrolled at T_0, and 40.0% completed the T₁ assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T₀, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T₀ and T₁, spouses experienced a greater reduction in worries about patients, than adult children. Conclusions: The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.

Background: Empirical investigations on health care professionals' (HCPs) perception of dignity have already spotted common themes in preserving dignity in end-of-life care. However, heterogenic assessment results of varying HCP groups exist. This pilot study wants to provide further evidence on HCPs' rating of dignity-impairing aspects based on a patient-centered concept, especially regarding different underlying job profiles and other professional characteristics.

Methods: In a quantitative study design, the rating of dignity-impairing factors in end-of-life care via an adapted version of the Patient Dignity Inventory (aPDI) was assessed. Participants of the relevant professional groups were recruited via convenience sampling from a region of Germany.

Results: From the final sample of participants, 229 questionnaires were analyzed. The overall importance of each dignity-impairing aspect in end-of-life care was considered to be very high by all different HCP groups. Nonetheless, ratings differed between professions: nursing staff had the highest ratings of importance compared to both physicians and individuals with multiple occupations. Participants with previous knowledge in bioethics also rated some aspects as more important compared to those without this feature.

Conclusion: With the findings of this investigation, an insight of how professionals rate impairments of dignity at the end of life based on a patient-centered concept is given. Thus, a link between empirical research and medical ethics is added. Potential normative implications for HCPs in practice of a dignified care can be derived, consisting of actively addressing social topics as well as further stressing ethics as a fundamental subject in the training and continuing education.

Background: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice.

Objective: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers.

Methods: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis.

Results: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges.

Conclusion: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

Context: Spiritual care is recognition of patient and caregiver spiritual/religious needs and attention to those needs. Caregivers of African American hospice patients are more likely to report worse emotional/religious support. Yet, spiritual care delivery and roles of community clergy and chaplains for African American hospice patients are not well understood.

Objectives: Examine who provides spiritual care to African American hospice patients and caregivers.

Methods: Partnering with large, urban/suburban community hospice, we interviewed caregivers of deceased African American hospice patients (n = 12), their clergy (n = 3) and chaplains (n = 5). Using a phenomenological qualitative study design, we coded transcripts and deceased patient chart data and conducted thematic analysis to identify themes.

Results: Community clergy and chaplains tend to not interact and provide different aspects of emotional, religious and spiritual support to hospice patients and families. Clergy and chaplains agreed that rapport and openness of the patient were main factors in meeting spiritual care needs. Clergy provided interaction with a trusted person and connection to church, congregational support, religious beliefs/theology, and practices. Chaplains focused on present needs and issues of death and dying.

Conclusion: Clergy and chaplains have distinct, complementary roles in providing spiritual care to African American hospice patients and families. Both are needed to provide desired spiritual care for African American hospice patients and their caregivers. Robust spiritual care programs need to ensure chaplains have sufficient time to spend with patients and families and incorporate collaboration, handoffs and integrated processes for clergy and chaplains. Research is needed on effectively including clergy in hospice spiritual care delivery.