Search

Objectives: Morbidity and mortality are higher in older adults with COVID-19, but their decisions about aggressive care, severity of disease, and outcomes during the first surge in New York City are not well characterized. We sought to determine if the oldest patients chose intubation and comfort care at different rates compared to younger geriatric patients. We also studied outcomes among patients admitted with severe disease and those who chose aggressive versus comfort care. Methods: This retrospective analysis used electronic health record data from patients 65 years and older at two medical centers in New York City admitted between 3/5/2020 and 5/15/2020. The primary outcome was comfort care orders, and secondary outcomes included death, palliative care consultation, goals of care discussion, code status, and ventilator weaning. Results: Of the 854 patients, 214 were in the oldest old (OO, age > = 85) group, 269 middle old (MO, age 75-84), and 371 young old (YO, age 65-74). Among those with serious disease, the OO were more likely to choose comfort care (45% vs. 21% MO and 6.8% YO), less likely to be intubated (17% vs. 37% MO and 44% YO), more likely to have a palliative care consult, more likely to be DNR/DNI on admission (60% vs. 17% MO and 9.3%% YO), and more likely to die during admission (65% vs. 42% MO and 21% YO) (all p-values < 0.001). Of all 216 intubated patients, 78% of the OO died, versus 66% of the MO and 36% of the YO (p =

Background: One‐third of people living with dementia (PLWD) have highly fragmented care (i.e., care spread across many ambulatory providers without a dominant provider). It is unclear whether PLWD with fragmented care and their caregivers perceive gaps in communication among the providers involved and whether any such gaps are perceived as benign inconveniences or as clinically meaningful, leading to adverse events. We sought to determine the frequency of perceived gaps in communication (coordination) among providers and the frequency of self‐reported adverse events attributed to poor coordination. Methods: We conducted a cross‐sectional study in the context of a Medicare accountable care organization (ACO) in New York in 2022–2023. We included PLWD who were attributed to the ACO, had fragmented care in the past year by claims (reversed Bice‐Boxerman Index ≥0.86), and were in a pragmatic clinical trial on care management. We used an existing survey instrument to determine perceptions of care coordination and perceptions of four adverse events (repeat tests, drug–drug interactions, emergency department visits, and hospital admissions). ACO care managers collected data by telephone, using clinical judgment to determine whether each survey respondent was the patient or a caregiver. We used descriptive statistics to summarize results. Results: Of 167 eligible PLWD, surveys were completed for 97 (58.1%). Of those, 88 (90.7%) reported having >1 ambulatory visit and >1 ambulatory provider and were thus at risk for gaps in care coordination and included in the analysis. Of those, 23 respondents were patients (26.1%) and 64 were caregivers (72.7%), with one respondent's role missing. Overall, 57% of respondents reported a problem (or "gap") in the coordination of care and, separately, 18% reported an adverse event that they attributed to poor care coordination. Conclusion: Gaps in coordination of care for PLWD are reported to be very common and often perceived as hazardous. [ABSTRACT FROM AUTHOR]

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings. [ABSTRACT FROM AUTHOR]

Caregivers of individuals with Alzheimer's disease and related dementias experience significant burden and adverse outcomes. Enhancing caregiver self-efficacy has the potential to mitigate these negative impacts, yet little is known about its relationship with other aspects of caregiving. This study examined the relationship between self-efficacy and outcomes; identified factors associated with self-efficacy; examined the mediating role of self-efficacy; and analyzed whether there were racial/ethnic differences. Data from caregivers (N = 243) were collected from the Caring for the Caregiver Network study. Participants' level of self-efficacy, depression, burden, and positive aspects of caregiving was assessed using validated measures. Two self-efficacy subscales predicted caregiver depression, burden, and positive aspects of caregiving. Being White, a spouse, or having a larger social network predicted lower self-efficacy for obtaining respite. Higher income and lower preparedness predicted lower self-efficacy for controlling upsetting thoughts and responding to disruptive behaviors. Self-efficacy for controlling upsetting thoughts mediated the relationship between preparedness and depression along with the relationship between preparedness and burden. Race/ethnicity did not improve model fit. Self-efficacy plays an important role in caregiver outcomes. These findings indicate that strategies to improve caregiver self-efficacy should be an integral component of caregiver interventions. [ABSTRACT FROM AUTHOR]

Background : Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives : To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects : Participants included certified HMDs obtained from a public website. Results : Participants' responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient's terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient's needs. Conclusions : HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs' expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting. [ABSTRACT FROM AUTHOR]

Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice. Objectives: To identify the information needs of informal home hospice caregivers. Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis). Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization. Measured: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition. Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides. Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers. [ABSTRACT FROM AUTHOR]

Introduction: We sought to determine the prevalence and risk factors associated with fecal incontinence (FI) in the home hospice setting. Methods: We conducted a retrospective cohort study of patients served by a hospice agency. Data on patient characteristics were extracted from hospice medical records. The primary outcome, FI, was assessed routinely during clinical visits to the patient's home. Descriptive statistics were used to summarize patient characteristics. A Cox proportional hazards regression model was estimated for FI to examine associations with sociodemographic and clinical characteristics of patients. Results: A total of 15 432 patients were eligible. Patients were female (59.0%) and 75 years or older (23.5% were 75-84; 39.9% were 85+). Most patients with FI indicated incontinence at the time of hospice admission (64.5%; n = 4314), with the average onset period being approximately 18 days from admission (mean = 17.9, standard deviation = 50.6). Increasing age represented a risk factor for FI (hazard ratio [HR] = 1.01 [confidence interval, CI = 1.01-1.01]). The absence of a health-care proxy was associated with an increased risk of FI (HR = 1.11 [CI = 1.04-1.19]). Greater risk of FI was observed among patients with dementia (HR = 1.34 [1.24-1.46]) and stroke (HR = 1.42 [1.26-1.60]) compared to patients with cancer. Patients referred to hospice from settings other than the hospital also had a greater risk of FI compared to those referred from the hospital (HR = 1.17 [1.11-1.23]). Conclusion: Fecal incontinence is a highly prevalent condition among home hospice patients and most patients indicated FI upon admission (median time to detection = 18 days). Further studies are needed to identify modifiable risk factors for FI detection and its symptom management in this patient population. [ABSTRACT FROM AUTHOR]

Background: The transition into home hospice care is often a critical time in a patient’s medical care. Studies have shown patients and caregivers desire continuity with their physicians at the end of life (EoL). However, it is unclear what roles primary care physicians (PCPs) play and what challenges they face caring for patients transitioning into home hospice care. Objectives: To understand PCPs’ experiences, challenges, and preferences when their patients transition to home hospice care. Design: Nineteen semi-structured phone interviews with PCPs were conducted. Study data were analyzed using standard qualitative methods. Participants: Participants included PCPs from 3 academic group practices in New York City. Measured: Physician recordings were transcribed and analyzed using content analysis. Results: Most PCPs noted that there was a discrepancy between their actual role and ideal role when their patients transitioned to home hospice care. Primary care physicians expressed a desire to maintain continuity, provide psychosocial support, and collaborate actively with the hospice team. Better establishment of roles, more frequent communication with the hospice team, and use of technology to communicate with patients were mentioned as possible ways to help PCPs achieve their ideal role caring for their patients receiving home hospice care. Conclusions: Primary care physicians expressed varying degrees of involvement during a patient’s transition to home hospice care, but many desired to be more involved in their patient’s care. As with patients, physicians desire to maintain continuity with their patients at the EoL and solutions to improve communication between PCPs, hospice providers, and patients need to be explored. [ABSTRACT FROM AUTHOR]