American Journal of Hospice & Palliative Medicine最新文献

Proximal femoral fractures in frail patients have a poor prognosis. Despite the high mortality, little is known about the quality of dying (QoD) while this is an integral part of palliative care and could influence decision making on nonoperative- (NOM) or operative management (OM). To identify the QoD in frail patients with a proximal femoral fracture. Data from the prospective FRAIL-HIP study, that studied the outcomes of NOM and OM in institutionalized older patients ≥70 years with a limited life expectancy who sustained a proximal femoral fracture, was analyzed. This study included patients who died within the 6-month study period and whose proxies evaluated the QoD. The QoD was evaluated with the Quality of Dying and Death (QODD) questionnaire resulting in an overall score and 4 subcategory scores (Symptom control, Preparation, Connectedness, and Transcendence). In total 52 (64% of NOM) and 21 (53% of OM) of the proxies responded to the QODD. The overall QODD score was 6.8 (P₂₅-P₇₅ 5.7-7.7) (intermediate), with 34 (47%) of the proxies rating the QODD 'good to almost perfect'. Significant differences in the QODD scores between groups were not noted (NOM; 7.0 (P₂₅-P₇₅ 5.7-7.8) vs OM; 6.6 (P₂₅-P₇₅ 6.1-7.2), P = .73). Symptom control was the lowest rated subcategory in both groups. The QoD in frail older nursing home patients with a proximal femoral fracture is good and humane. QODD scores after NOM are at least as good as OM. Improving symptom control would further increase the QoD.

Background: Palliative Care also encompasses the dimension of spiritual pain. Pastoral care workers and chaplains are specialists in the provision of spiritual care. Decreasing religious affiliation and increasing spiritual diversification in modern societies raise the question of the function of pastoral care.

Aim: The goal of this study is to answer the question of what pastoral care workers can offer to dying residents in hospices and palliative care units.

Design: A qualitative interview study was designed to explore the specific perspective of pastoral care workers in a multidisciplinary environment. The study is based on differentiation theory which is particularly well adjusted to reveal differences in perspectives in so called 'holistic' care settings. The reporting follows the COREQ guidelines.

Setting: Problem centered interviews were conducted at five hospices and two palliative care units.

Results: Eight pastoral care workers were interviewed (5 Catholic, 3 Protestant, mean age of 58 years). The analysis of the interviews revealed three major themes: (A) Self-positioning in relation to the organization, (B) Offering conversations to patients and relatives, (C) Performing religious rituals. Minor themes were: mediating conflicts between patients, relatives and staff, sensing moods in silence with patients and organizing workshops for staff.

Conclusion: In modern hospice care, pastoral care workers routinely address the problem of making death more tangible and of answering the unanswerable question of what comes afterwards. Through this, they support dying residents in hospices and palliative care units in dealing with the inexplicability of death.

Objective: Palliative care often plays a pivotal role in supporting informal caregivers of persons living with dementia who experience a lack of continuity in care. Dementia caregiver activation, the caregiver's willingness and ability to navigate care needs, requires communication skills for developing relationships with healthcare providers. Communication activation is important because caregivers facilitate physician and patient information exchange. This study aimed to explore changes in communication outcomes (attitude, knowledge, and skills) and impact on caregiver communication activation (confidence, self-report) following completion of a brief communication module. Methods: A 15-minute asynchronous online module was developed to provide caregivers with communication skills for working with doctors and nurses. Caregivers completed pre/post module measures of communication outcomes, a vignette for applying communication strategies and were interviewed within a week of module completion to assess self-reported communication activation. Module acceptability was also evaluated. Results: Communication knowledge (P < .01) significantly increased and nearly all participants (99%) demonstrated use of module-specific communication skills after completing the module. While not statistically significant, caregiver attitudes were in the expected direction. Caregiver self-reported communication confidence (P < .001) significantly increased and 84% of caregivers described communication activation at post-module. Caregivers (83%) were likely to recommend the module. Conclusions: The brief communication module for dementia caregivers in this project offers an online resource with low time-burden that results in caregiver communication activation. Future testing in the clinical setting will increase understanding of its efficacy and integration and could be a viable resource for palliative care providers.

Introduction: Personality traits, specifically neuroticism, are related to stress in surrogate decision-makers (SDMs) in outpatient settings. We hypothesized that intrinsic traits are related to SDM stress in the intensive care unit (ICU) to determine if personality considerations should be included in interventions to support SDMs.

Methods: Eligible participants (adult SDMs of non-capacitated ICU patients) completed validated questionnaires including stress (Impact of Events Scale-Revised, IES-R) and personality (Big Five Inventory, BFI) within 72 hours of ICU admission and again at 3 months post-ICU discharge (in addition to a qualitative interview). Bivariate Pearson correlations explored the relationship between BFI and IES-R at each time point (95% CI) and t-tests explored the relationship between stress and COVID-19. Mixed-methods analysis integrated qualitative and quantitative data.

Results: Of 32 SDMs, 71.9% were female, 93.8% white, and 97.0% were family members. Neuroticism was not significantly correlated to IES-R at 72 hours (r = 0.09; p = 0.64), but r increased 3 months post-discharge (r = 0.32; p = 0.07). Other BFI traits did not show similar patterns. Total stress was greater in surrogates of COVID-19-positive patients (COVID-19-positive: 60.6; COVID-19-negative: 49.8; p = 0.025). Mixed-methods analysis demonstrated that participants with high neuroticism scores had poorer emotional regulation than those with low neuroticism scores.

Conclusions: This study supports that personality, particularly neuroticism, influences the stress of SDMs in the ICU. Further study of personality traits may identify surrogates who are at higher risk of stress-related disorders, which can guide future interventions.

Background: Despite documented benefits of Advance Care Planning (ACP), it is still under-utilized in the U.S. Our study aimed to examine whether experiencing a loved one's death is associated with one's own ACP behavior among adults in the U.S. and the potential moderating effect of age. Method: Using a nationwide cross-sectional survey design with probability sampling weights, our study included 1006 adults in the U.S. who participated in and completed the Survey on Aging and End-of-Life Medical Care. Three binary logistic regression models were established to investigate the relationship between death exposure and different aspects of ACP (i.e., informal conversations with family members and doctors and formal advance directives completion). The moderation analysis was subsequently conducted to examine moderating effects of age. Results: The exposure to a loved one's death was significantly associated with higher odds of having conversations with family about end-of-life medical care preferences among the 3 indicators of ACP (OR = 2.03, P < .001). Age significantly moderated the association between death exposure and ACP conversations with doctors (OR = .98, P = .017). The facilitation effect of death exposure on informal ACP engagement in discussing end-of-life medical wishes with doctors is stronger among younger adults than older adults. Conclusions: Exploring an individual's previous experience with a loved one's death might be an effective way to broach the concept of ACP among adults of all ages. This strategy may be particularly useful in facilitating discussions of end-of-life medical wishes with doctors among younger adults than older adults.

Background: Early and integrated palliative care is recommended for patients with idiopathic pulmonary fibrosis. Unfortunately, palliative care delivery remains poor due to various barriers in practice. This study describes various palliative care delivery models in a real-world cohort of patients with idiopathic pulmonary fibrosis, examines the predictors of survival in this cohort of patients, and explores the impact of palliative care on survival. Design: Charts were reviewed retrospectively and analyzed. The primary outcome was survival during a 4-year follow-up period. Two multivariable models were created to examine the impact of therapeutic strategies including palliative intervention on survival. Results: 298 patients with idiopathic pulmonary fibrosis were enrolled from 3 interstitial lung disease clinics with different palliative care models in Edmonton, Canada; Bristol, UK; and Kingston, Canada. 200 (67%) patients received palliative care and 119 (40%) died during follow up. Primary palliative care models (Edmonton and Bristol) delivered palliative care to 96% and 100% respectively compared 21% in the referral model (Queens). Palliative care [adjusted hazard ratio (aHR) .28 (.12-.65)] along with the use of antifibrotics [aHR .56 (.37-.84)], and body mass index >30 [aHR .47 (.37-.85)] reduced the risk of death in our idiopathic pulmonary fibrosis cohort. Opioid use was associated with worse survival [aHR 2.11 (1.30-23.43)]. Conclusions: Both palliative care and antifibrotic use were associated with survival benefit in this cohort of patients with idiopathic pulmonary fibrosis after adjusting for covariates. The benefit was seen despite differences in disease severity and different palliative care delivery models.

Background: Patients, caregivers, and healthcare professionals often describe a "good death" as a pain-free process. However, many patients experience pain during their last weeks of life. Advance directives (ADs) are legally binding documents that allow individuals to express their wishes for end-of-life care which should include management of their pain.

Methods: An interprofessional team conducted a comprehensive analysis of ADs from all 50 states and the District of Columbia to assess the inclusion of language that reflects patients' wishes for pain relief at the end of life.

Results: Thirty-seven (73%) of the 51 entities examined reflected the prototypical directive, containing explicit instructions for withholding or withdrawing interventions that may prolong suffering rather than options for treating pain. Of these, 12 (24%) did not include the word "pain". Only 14 states (27%) provided clear guidance for managing pain. Unexpectantly, researchers found that 13 (25%) addressed the common fears of patients, caregivers, and healthcare teams when using opioids to relieve suffering, such as addiction, sedation, appetite, or respiratory suppression, and hastening death.

Conclusion: The majority of ADs reviewed lacked clear and comprehensive measures for addressing pain relief. This deficiency may contribute to the undertreatment of pain and amplify the anxiety felt by patients, families, and healthcare providers when making end-of-life decisions. The results highlight the need for improvements in ADs to help ensure that patients' wishes regarding pain management are adequately addressed, documented and respected.

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

Introduction: Palliative care is a medical and humanitarian approach that improves the quality of life of patients, and their families, who are facing problems associated with chronic and life-threatening illnesses. Few studies have evaluated the effectiveness of mindfulness-based interventions for terminally ill or incurable patients. The aim of this study was to systematically review the literature on the effect of mindfulness-based interventions on symptom control and quality of life in patients in palliative care.

Methods: PubMed, Web of Science and Cochrane databases were searched for articles, published between January 2017 and December 2022, in English, including randomized controlled and clinical trials. Participants: terminally ill or incurable patients. Interventions: any mindfulness-based intervention. Comparators: any. Outcomes: symptom control and quality of life. The risk of bias was analysed through Cochrane's ROB-2 tool.

Results: Eight studies were included involving 609 patients and 75 dyads patients-spousal caregivers. The overall risk of bias was low to moderate. Mindfulness-based interventions are helpful in managing suffering, anxiety and depressive symptoms, fatigue, insomnia, drowsiness, appetite, and spiritual well-being.

Conclusion: Mindfulness-based interventions control several symptoms and improve spiritual quality of life in patients in palliative care. Additionally, their informal caregivers also benefit from these interventions. Future trials are crucial to investigate other effects of mindfulness-based interventions, and their long-term benefits, in patients in palliative care.

Introduction: Financial toxicity has negative implications for patient well-being and health outcomes. There is a gap in understanding financial toxicity for patients undergoing palliative radiotherapy (RT). Methods: A review of patients treated with palliative RT was conducted from January 2021 to December 2022. The FACIT-COST (COST) was measured (higher scores implying better financial well-being). Financial toxicity was graded according to previously suggested cutoffs: Grade 0 (score ≥26), Grade 1 (14-25), Grade 2 (1-13), and Grade 3 (0). FACIT-TS-G was used for treatment satisfaction, and EORTC QLQ-C30 was assessed for global health status and functional scales. Results: 53 patients were identified. Median COST was 25 (range 0-44), 49% had Grade 0 financial toxicity, 32% Grade 1, 15% Grade 2, and 4% Grade 3. Overall, cancer caused financial hardship among 45%. Higher COST was weakly associated with higher global health status/Quality of Life (QoL), physical functioning, role functioning, and cognitive functioning; moderately associated with higher social functioning; and strongly associated with improved emotional functioning. Higher income or Medicare or private coverage (rather than Medicaid) was associated with less financial toxicity, whereas an underrepresented minority background or a non-English language preference was associated with greater financial toxicity. A multivariate model found that higher area income (HR .80, P = .007) and higher cognitive functioning (HR .96, P = .01) were significantly associated with financial toxicity. Conclusions: Financial toxicity was seen in approximately half of patients receiving palliative RT. The highest risk groups were those with lower income and lower cognitive functioning. This study supports the measurement of financial toxicity by clinicians.