The American journal of hospice & palliative care最新文献

This study aimed to develop the "Home Hospice Nursing Care Scale" to assess the care provided by visiting nurses to patients with end-stage cancer and evaluate its reliability and validity. A draft of the scale was created based on a descriptive survey conducted among oncology nurse specialists and certified oncology nurses working as home-visit nurses. A questionnaire survey was administered to 1,770 home-visit nurses working at 296 functionally strengthening home-visit nursing establishments. A total of 436 valid responses were obtained (valid response rate: 24.6%). Exploratory factor analysis identified 5 factors comprising 40 items: care that supports the values of the patient and their family members, partnership involving the patient and their family members to maintain home care, care that allows for living with loved ones until end of life, care that supports the daily lives of family caregivers, and care that reconciles the feelings of those involved. Confirmatory factor analysis demonstrated that the goodness-of-fit indices of the model were as follows: GFI = 0.846, AGFI = 0.828, CFI = 0.915, and RMSEA = 0.050. Cronbach's α coefficients ranged from 0.77 to 0.93. Criterion-related validity was verified by the Healthcare Professionals' Attitudes towards Terminal Home Care Scale and Difficulties with Home Palliative Cancer Care Scale. The reliability and validity of the scale was verified, which demonstrates its utility. Future challenges include analyzing factors related to home hospice nursing care and developing an educational program based on the future study. Key words: home hospice, end-of-life, cancer, nursing, scale development, reliability, validity.

ObjectivesTo explore American Muslims' perceptions and experiences regarding hospice care within the United States.MethodsA qualitative descriptive study of 11 participants, including one patient and ten family caregivers. Data was collected through semi-structured interviews and analyzed using a framework approach to identify key themes related to perceptions, ethical concerns, and experiences with hospice care.ResultsThree primary themes emerged: 1) notions of when hospice care should be sought; 2) Islamic ethical concerns about sedation and nutrition, and 3) positive experiences with hospice care accommodating religious beliefs and providing support. Participants' perceptions of the need for hospice care varied, though many associated it with the last hours or days of life. Ethical concerns emerged around the use of medications like morphine, which could lead to sedation and interfere with religious practices, such as prayer and a final testification of faith. Additionally, the ethical concerns regarding nutrition and hydration for terminally ill patients raised questions about the alignment of such practices with Islamic bioethical values, which emphasize both preserving life and avoiding harm. Positive experiences included respect for religious beliefs, Qur'an recitations, and accommodation of prayer times.ConclusionMisconceptions about hospice conflicting with religious practices and Islamic ethical concerns may influence the acceptance and utilization of hospice care within the American Muslim community. Tailored educational initiatives and the integration of religious values into hospice care can foster informed decision-making, enhance patient satisfaction, and improve overall care outcomes.

ContextThe hospital discharge process is fraught for patients with serious illness and their caregivers.ObjectivesWe sought to understand palliative care patient and caregiver concerns regarding the patient-centeredness of the hospital discharge process.MethodsWe conducted semi-structured interviews with 11 patients receiving palliative care and 4 caregivers. Caregivers were interviewed with patient or alone, for a total of 13 interviews. Interviews were focused on the patient-centeredness of the discharge process, completeness of discharge education, and readmission. Transcripts were analyzed using an inductive approach with open coding.ResultsWe identified four themes: (i) symptoms, (ii) relationship to illness, (iii) variance in patient-provider alignment, and (iv) discharge readiness, including readmission. Physical and non-physical symptoms were common, though non-pain symptoms were more frequently concerns. Illness understanding and empowerment by the discharge process were low, with participants seeking more information. Alignment varied by provider with closer relationships with bedside nurses and outpatient providers, especially oncologists, than inpatient providers. Readmission was not perceived to be avoidable but was associated with symptom burden. Discharge readiness was mixed; common concerns included lack of clarity regarding next steps and post-discharge services. Up to 40% of participants reported incomplete education on given topics.ConclusionOur qualitative study of patients and caregivers receiving palliative care identified unmet needs in the discharge process: non-pain symptom burden, gaps in empowerment and illness understanding, and mixed discharge readiness. Relationship to care informs subsequent engagement with care and medical decision-making. Future interventions should focus on strengthening patient and caregiver empowerment and illness understanding.

ObjectiveExamine the relationship between race and ethnicity and area-level social deprivation and Medicare home health care (HHC) agency quality for seriously ill older adults receiving HHC.MethodsA linear probability fixed effects model analyzed the association between patient-level predictors and HHC agency quality (star-rating), controlling for neighborhood level fixed effects. Linear mixed regression modeled the relationship between area-level social deprivation and receiving care from a high-quality HHC agency. An interaction term between race and social deprivation index quartiles examined whether racial disparities in accessing high-quality HHC agencies depended on the level of neighborhood social deprivation.ResultsThe final sample consisted of 213 491 Medicare beneficiaries. Reduced access to high-quality HHC was associated with identifying as Black (1.2 % point lower, P < .001), having Medicaid (5.5 % point lower, P < .0001), and living in a neighborhood with high social deprivation (6.5% point lower, P < .001). The effect of race on access to high-quality HHC persisted regardless of the level of neighborhood social deprivation.ConclusionsFor people living with serious illness, living in areas with higher social deprivation is associated with lower-quality HHC. Patient race and ethnicity has a consistent effect reducing access to high-quality HHC agencies, regardless of neighborhood. Future research must investigate ways to improve access to high-quality HHC for racial and ethnic historically marginalized populations who are seriously ill, especially in areas of high social deprivation. This includes understanding what policies, organizational structures, or care processes impede or improve access to high-quality care.

PurposeTo determine the feasibility of mapping interdisciplinary role ownership over actionable practices identified from qualitative comments in the Veterans Affairs Bereaved Family Survey (BFS).MethodsWe polled two providers from each of 14 disciplines as to whether an actionable practice that improved end-of-life care quality sits within their scope of practice. We grouped practices by having the greatest, middle, and fewest number of disciplines that claimed role ownership and then characterized what roles were shared.Major FindingsMedicine, nursing, social work, and occupational therapy claimed role ownership of the greatest number of practices among the 14 disciplines. Chaplaincy and the allied health disciplines had a comparatively more limited range of role ownership of practices. Practices with the greatest number of professionals claiming role ownership were general professional behaviors that do not require specialized training (e.g., being easy to talk to). Practices with the middle number of role ownership required clinical specialization (e.g., offering non-pharmacological interventions to reduce agitation). Practices with the fewest number of disciplines required a narrower skill set (e.g., signing the death certificate in a timely manner) or administrative authority to perform (e.g., providing adequate nursing staff).ConclusionsThis project demonstrated the feasibility of mapping BFS actionable practices across disciplines. A larger sample and rigorous statistical analysis are required for application at a health care system level. Understanding role ownership can then guide efforts relating to role ownership and role sharing for end-of-life quality improvement activities.

BackgroundPalliative Care, Geriatrics and Emergency physicians are exposed to death, terminally ill patients and distress of patients and their families. As physicians bear witness to patients' suffering, they are vulnerable to the costs of caring-the emotional distress associated with providing compassionate and empathetic care to patients. If left unattended, this may culminate in burnout and compromise professional identity. This study aims to provide a better understanding of suffering across various practice settings and specialties to guide the design of support frameworks for physicians and their patients.MethodsFrom August 2023 to September 2024, semi-structured interviews were conducted with sixteen Palliative Care, 12 Geriatrics and 13 Emergency physicians from various hospitals in Malaysia. Interview transcripts were analyzed using both inductive and deductive qualitative analyses.ResultsData analysis revealed three key domains: (1) living and dying well, (2) definition of suffering, and (3) impact of patient suffering on physicians.ConclusionPhysicians' concepts of a good life and death frame their notions of suffering beyond the antithesis of a good life. Suffering is found to be distress at a loss of control, independence and dignity, alongside the presence of physical, emotional and existential distress. Witnessing patient suffering predisposes to physician suffering as they question their goals and roles in patient care. Our findings underscore the need for host organizations, hospitals and clinical departments to invest more in the care of their physicians. We believe these findings ought to be applicable to many resource-limited nations and other health care professionals beyond Malaysian shores.

BackgroundThe literature lacks conclusive evidence regarding whether palliative care training confers a protective or predisposing influence on compassion fatigue. The present study hypothesizes that training in palliative care is associated with minor compassion fatigue levels among physicians and an improvement in their confidence in several procedures.AimTo explore the physicians experiences with and without palliative care training who work as general practitioners in order to assess the prevalence of compassion fatigue in these groups.MethodsThis is a quantitative and qualitative cross-sectional survey. For data analysis, Mann-Whitney and Pearson's chi-squared test tests were used considering P < 0.05 for significance.ResultsThe majority respondents had no training in palliative care (77.8%), however, 58.3% declared that they cared for at least 1 palliative care patient every 2 shifts - an intermediate frequency in our analysis. Trauma levels among doctors were classified as medium (24 ± 6), burnout as low (19 ± 5) and compassion as medium (41 ± 5). Professionals without training in palliative care had higher rates of burnout (P = 0.002), but there was no association between training and rates of trauma or compassion.ConclusionsDoctors with training in palliative care in Brazil showed lower burnout rates when working as general practitioners in secondary hospitals. This could instigate the implementation of educational programs in palliative care at hospitals and the further development of the field so as to improve professionals' performance at patients' treatment. There was no difference between Trauma and Compassion scores.

ObjectivesTo evaluate the impact of patient and caregiver hospice care (HC) and palliative care (PC) beliefs and patient/caregiver belief-agreement on subsequent utilization of HC/PC among racially and ethnically diverse patients.MethodsA prospective cohort study of newly diagnosed patients ≥18 years old with advanced lung cancer and their caregivers was conducted. Participants completed validated surveys at multiple points and electronic health records were reviewed to evaluate utilization. Logistic regression models were used: (i) to estimate the association between caregiver health belief composite scores and utilization of HC or PC; and (ii) to estimate the association between level of agreement between patient and caregivers, and utilization of HC or PC.ResultsAmong the 43 patient/caregiver dyads enrolled in the study, 27 (63%) identified as Black and/or Latino (minoritized) and 16 (37%) as Non-Hispanic White (non-minoritized). Mean age was 65.2 ± 10.2 and 52.1 ± 15.2 years among patients and caregivers, respectively. Minoritized patients held more negative health beliefs (2.7 ± 6.7 vs. 7.1 ± 4.9; p = 0.02) than their non-minoritized counterparts however, they were more likely to use HC and/or PC (67% vs. 25%; p = 0.02). Level of health belief agreement between patients and caregivers was lower in minoritized vs non-minoritized dyads (mean (SD) Kappa: 0.31 (0.18) vs. 0.18 (0.18); p < 0.01). Caregiver beliefs and patient/caregiver agreement in beliefs did not predict utilization of HC/PC.ConclusionMinoritized lung cancer patients held more negative beliefs about HC/PC yet were more likely to receive HC/PC. Further work is needed to understand factors that impact utilization among diverse patients with advanced cancer.

Hospital readmissions within 30 days are a significant concern due to their negative impact on patient outcomes and healthcare system costs.¹ This retrospective study explores the impact of palliative medicine consultation on reducing readmission rates for patients with severe, life-limiting illnesses. Real-world data from a 21-hospital system was analyzed for six specific diagnoses, including heart failure, sepsis, pneumonia, and chronic obstructive pulmonary disease. The study found a statistically significant reduction in readmissions for patients with sepsis, pneumonia, heart failure and (to a lesser extent) stroke who received palliative medicine consultation compared to those who did not. The findings suggest that palliative medicine consultation for these patients leads to reduced readmission and implies potential improved quality outcomes and cost savings. This study highlights the potential of palliative medicine as a multifactorial approach to reduce readmissions and potentially improve patient outcomes in the future.

Background: Prior research has shown that advance care planning (ACP) knowledge and discussion varies among racial and ethnic groups. However, little is known if similar disparities exist within the sexual minority (SM) population. Objectives: To investigate racial disparities in ACP knowledge, discussion, and decision making within the SM population. Methods: Data from an online survey (N = 281) asked Black and White SM adults ages 50+ about their knowledge and actions about future healthcare wishes and their healthcare experiences. A series of multivariable logistic regressions were conducted to examine the association between ACP knowledge, discussion, and medical decision-making and race, while adjusting for other demographic and health-related variables. Results: On average, respondents were 57 years old (SD = 6.04) and just over half identified as being White (52%) and as men (55%). Most participants had heard of ACP (74%) and had an ACP discussion with someone (65%). Sixty-six percent of participants were very comfortable with medical decision-making. White SM adults had higher odds of having ACP knowledge (aOR = 3.56; 95% CI = 1.78, 7.07) and discussions (aOR = 2.43; 95% CI = 1.28, 4.61). While no racial differences were found in comfort with medical decision-making, other sociodemographics were significantly associated with comfort with medical decision-making. Conclusion: Outcomes from this work indicate persistent racial disparities in ACP within the SM population in addition to highlighting other factors that influence ACP. These findings emphasize the need for resources to address this systemic issues and to ensure that SM adults have access to and engage in ACP.