American Journal of Hospice & Palliative Medicine最新文献

Hospice care involves focusing on our patients' goals of care and good symptom management. This coincides with a focus on their comfort, dignity, and respect. Working with lesbian, gay, bisexual, transgender, queer and/or questioning (LGBTQ+) patients on a hospice service can be challenging for medical staff. Many of these potential challenges relate to lack of training of medical professionals. These patients often receive discriminatory care compared to those who do not identify as LGBTQ+. This case study describes an assigned-male-at-birth Veteran admitted to a Veterans Affairs Community Living Center (CLC) hospice service who, after admission, informed staff of the strong desire to go forward with gender reassignment. Despite a prognosis of 6 months, working with the Veteran to help achieve these goals, supporting the medical plans for providing gender-transition information, and focusing on addressing the Veteran with appropriate pronouns were critical to our medical team's support for our Veteran at this difficult time.

Introduction: Thanks to advances in healthcare and technology, adolescents with medical complexity (AMC) and life-threatening conditions are living longer lives and may be expected to transition to adult health care. Yet, current systems and policies of transition care may not reflect their needs, those of their family, or the impact of social determinants of health. The goal of this study was to describe the relationship between social determinants of health and high-quality transition care. Methods: Retrospective cohort study of the 2019-2020 National Survey of Children's Health. The main outcome variable was any support for transition to adult health care. Independent variables were based on a social determinants of health framework. Weighted logistic regression was used to evaluate the association between social determinants and any support for transition to adult health care. Results: Final weighted sample included 444,915 AMC. AMC were distributed across income levels, most commonly lived in the South, and in supportive, resilient communities. More than 50% experienced adverse childhood events and less than 50% had adequate insurance. Less than one third received any transition support from providers; those who did reported time alone with the provider or active management. Social determinants related to missed days of school, community support/family context, and poverty were associated with both receipt and absence of transition care. Conclusion: AMC and their families navigate complex environments and associated stressors. Social determinants of health, particularly economic, community/social, and healthcare exert significant and nuanced influence. Such impacts should be incorporated into transition care.

Background: Despite the extensive literature on facilitating advance care planning (ACP) with patients with serious illnesses, opportunities to include surrogates or family caregivers are overlooked. The research objective was to examine whether previous medical decision-making involvement for a loved one is associated with one's own ACP conversations with family and the potential mediating effect of knowledge of a loved one's end-of-life treatment preferences. Methods: This study employed a cross-sectional design using data from the 2016 Kaiser Family Foundation/The Economist Four-Country Survey on Aging and End-of-Life Medical Care. The sample included 627 US adults who completed the survey and were involved in making medical decisions for a loved one in the past. Multiple binary logistic regression and linear regression models were established for mediation analyses. Results: Participants in our nationally derived sample were largely confident in their knowledge of a deceased loved one's end-of-life treatment preferences. 66.8% of the sample had ACP conversations with family. The involvement in a loved one's medical decision making was significantly associated with higher odds of having ACP conversations with family (OR = 1.93, P = .01), but this relationship was significantly mediated by knowledge of one's end-of-life treatment preferences (b = .31, Boot CI = .12-.49). Conclusions: Previous experience in making medical decisions for a loved one may facilitate one's own ACP behavior through knowing a loved one's end-of-life treatment preferences. Clinicians in end-of-life settings are uniquely positioned to engage family members who were involved in medical decision-making for others before in ACP.

Background: Despite the growing increase in the utilization of hospice in the U.S, disparities exist in the utilization of hospice. Accumulating evidence has shown that neighborhood characteristics have an impact on availability of hospice agencies.

Objective: To assess the association between neighborhood social vulnerability and hospice agency availability.

Methods: Using the Medicare Post-Acute Care and Hospice Provider Utilization and Payment Public Use Files (PAC PUF) for 2019. Hospice agency addresses were geocoded to the census tract level. Multivariable Poisson regression models were used to assess the association between socioeconomic status SVI theme and hospice agency availability adjusting for number of home health agencies, primary care health profession shortage, per cent Black, and Percent Hispanic at the census tract level and rurality.

Results: The socioeconomic status SVI subtheme was associated with decreased likelihood of hospice agency availability (adjusted IRR (aIRR), .56; 95% CI, .50- .63; P < .001). Predominantly Black, and predominantly Hispanic neighborhoods had lower rates of hospice agency availability (aIRR, .48; 95% CI, .39-.59; P < .001 and aIRR, .29; 95% CI, .24-.36; P < .001), respectively.

Conclusion: Neighborhood socioeconomic disadvantage was associated with lower availability of hospice agencies. Policies aimed at increasing access to hospice should be cognizant of neighborhood socioeconomic disadvantage.

Objective: to examine the validity of a novel dyspnea scale, Edmonton Dyspnea Inventory in idiopathic pulmonary fibrosis (IPF). Methods: Edmonton Dyspnea Inventory (EDI), is a clinical instrument to measure dyspnea severity with activities of daily living, exercise and rest using a numeric rating scale (0 -10). Consecutive IPF patients (2012-2018) with baseline MRC and EDI were included. To validate EDI, psychometric analysis was conducted. Correlations between EDI, MRC and lung function were examined. Group-based trajectory modeling was used to group patients based on dyspnea severity. Net Reclassification Improvement (NRI) was calculated to assess the improvement in 1-year mortality prediction by adding trajectory groups to MRC grade. Results: 100 consecutive IPF patients were identified; mean age 73 years (SD = 9) and 65% males; 73% were in MRC grades ≥3. Item analysis showed all 8 EDI components have excellent discrimination power with ability to differentiate patients with varying dyspnea severity. EDI has good internal consistency (Cronbach α = .92). Exploratory factor analysis showed a one-factor solution with loadings from .66 to .89 suggesting 8 EDI components measured essentially one dimension of dyspnea. All EDI components were correlated with MRC and some with lung function. Modeling data identified three EDI dyspnea severity groups with differing mortality (P = .009). The addition of EDI dyspnea severity groups to the MRC score improved 1-year mortality prediction (NRI = .66; 95% CI, .18-1.14). Conclusions: EDI is a valid dyspnea instrument, correlated with MRC and lung function. It can categorize IPF patients into 3 dyspnea severity groups associated with increased mortality. Key Message: We describe the development of a novel scale, Edmonton Dyspnea Inventory, that facilitates measurement of dyspnea severity in the context of daily activities in patients with IPF. The results indicate that the new instrument is valid and correlated to MRC. It identifies 3 categories of severity not recognized by MRC with impact on mortality. Knowledge of dyspnea severity can help triage patients and assign appropriate therapies.

Introduction: More than 35% of hospice care recipients 65 and older have a dementia diagnosis. Yet family care partners of persons living with dementia report feeling unprepared to address their hospice recipient's changing needs nearing end of life. Hospice clinicians may have unique insight into the knowledge needs of family care partners and strategies for end-of-life dementia caregiving.

Methods: Semi-structured interviews were conducted with 18 hospice physicians, nurse practitioners, nurses, and social workers. Interview transcripts were deductively analyzed using thematic analysis to examine clinicians' perspectives on gaps and strategies related to family care partner knowledge about end-of-life dementia caregiving.

Results: We identified 3 themes related to gaps in family care partners' knowledge: dementia is a progressive, fatal disease; end-of-life symptoms and symptom management in persons living with advanced dementia; and understanding hospice goals and guidelines. Three themes related to clinicians' strategies to increase knowledge included: providing education; teaching strategies to facilitate coping and preparedness for end-of-life care; and communicating with empathy.

Discussion: Clinicians perceive gaps in knowledge specific to dementia and end of life among family care partners. These gaps include a lack of understanding of Alzheimer's symptom progression and strategies to manage common symptoms. Recommendations for approaches to reduce knowledge gaps include providing education and strategies delivered with empathy toward the family care partner experience.

Conclusion: Clinicians who work with persons living with dementia receiving hospice care have valuable insights regarding family care partners' gaps in knowledge. Implications on the training and preparation of hospice clinicians working with this care partner population are discussed.

Hospice care facilities are required to provide prescription drugs related to a hospice patient's terminal illness. From October 2010 to present, the Center for Medicare and Medicaid Services (CMS) has issued a series of communications regarding Medicare paying for hospice patients' prescription drugs under Part D that should be covered under the hospice Medicare Part A benefit. On April 4, 2011, CMS issued specific policy guidance to providers aimed at preventing inappropriate billing. While CMS has documented Part D prescription decreases in hospice patients, no research exists that connects these decreases and the policy guidance. This study aims to evaluate the effect of the April 4, 2011, policy guidance on hospice patients' Part D prescriptions. This study employed generalized estimating equations to assess (1) total monthly average prescriptions of all medications and (2) four categories of commonly prescribed hospice medications in pre-and-post policy guidance. This research used the Medicare claims of 113,260 Part D-enrolled Medicare male patients aged 66 and older between April 2009 and March 2013, including 110,547 non-hospice patients and 2713 hospice patients. Hospice patients' monthly average total Part D prescriptions decreased from 7.3 pre-policy guidance to 6.5 medications following the issuing of the guidance, while the four categories of hospice-specific medications decreased from .57 to .49. The findings of this study show that CMS's guidance issued to providers to prevent the inappropriate billing of hospice patients' prescriptions to the Part D benefit may lead to Part D prescription decreases as observed in this sample.

Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using person-level Medicaid claims of 1,788 pediatric hospice enrollees who resided in the Appalachian Region between 2011 and 2013. A database of boundaries of Appalachian counties, postal addresses of hospices, and population-weighted county centroids of residences of hospice enrollees driving times from the nearest hospices were calculated. A choropleth map was created to visualize rural/urban differences in receiving hospice care. The average driving time from hospice to child residence was 28 minutes (SD = 26). The longest driving time was in Eastern Kentucky-126 minutes (SD = 32), and the shortest was in South Carolina-11 min (SD = 9.1). The most significant differences in driving times between rural and urban counties were found in Virginia 28 (SD = 7.5) and 5 minutes (SD = 0), respectively, Tennessee-43 (SD = 28) and 8 minutes (SD = 7), respectively; and West Virginia-49 (SD = 30) and 12 minutes (SD = 4), respectively. Many pediatric hospice patients reside in isolated counties with long driving times from the nearest hospices. State-level policies should be developed to reduce driving times from hospice providers.

Introduction: Little is known regarding circumstances surrounding advanced care planning (ACP) for patients with amyotrophic lateral sclerosis (ALS). We aim to describe preferences, and perspectives surrounding ACP in patients with ALS.

Methods: We conducted a survey of patients with ALS. Survey questions were related to advance directive completion and ACP discussions regarding end-of-life (EoL) choices.

Results: 49 surveys were included. Patients have given thought to advance directives, goals of care, and EoL treatments within months of diagnosis (Median: 1 month; IQR: .6 - 3 months). Twenty-seven opened dialogue with spouses, 24 with family members, 19 with health professionals and 16 with their lawyer. Eighty percent were comfortable discussing advance directives and power of attorney while fewer (70%) are less comfortable regarding specific aspects of care such as CPR or invasive ventilation. Only one barrier to discussion was identified with one patient reporting they did not wish to talk about the topic. There was no significant correlation between timing of diagnosis and whether an EoL discussion had occurred (τ_b = .23, P = .14: n = 42). Level of feeling informed was significantly associated with making EoL decisions for CPR, legal arrangements for a decision maker and completion of living will or AD.

Conclusion: In this small cohort, a substantial proportion of ALS patients initiated EoL conversations early. When feeling informed, patients were more likely to make specific EoL choices. Findings suggest an opportunity for providers to help facilitate conversations, ensuring patient wishes.