Reasons for Refusing Home-based Palliative Care: A Qualitative Study of Patients and Caregivers

Abstract Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that coverage for palliative care may be insufficient to expanding patient access to home-based palliative care. Research has yet to explore palliative care barriers from the perspective of palliative care-eligible patients and their caregivers. To identify patients and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers, we conducted a qualitative study using semi-structured individual interviews. Participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed via telephone. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the program explanation; and suggestions for improving messaging around home-based palliative care. Researchers used grounded theory to identify the themes within the transcripts. Two researchers independently coded the transcripts and then met to compare coding and reconciled discrepancies until 100% consensus was reached. Identified themes related to home-based palliative care referral barriers included reluctance to have home visits, timing, lack of palliative care knowledge, misconceptions of palliative care, and patients’ self-perceived health condition (not sick enough for palliative care). Themes related to recommendations for overcoming these barriers included preferring a palliative care referral from healthcare providers or from insurance company and clearer presentation of palliative care service. Findings reinforce the need for additional palliative care education among patients with serious illness and the importance of delivering the information from a trusted source.


END-OF-LIFE POWER DYNAMICS IN A TRIAD RELATIONSHIP: ADVANCE CARE PLANNING FOR OLDER ADULTS WITH DEMENTIA IN CHINA
Yifan Lou, 1 Jinyu Liu, 1 and Bei Wu, 2 1. Columbia University,New York,New York,United States,2. New York University,New York,New York,United States Objective: Primary family caregiver (CG), other family members (FM), and medical professionals (MP) play important roles in medical decision-making for older adults with dementia, who often have lost the capacity to make decisions on their own. Power dynamics within the CG-FM-MP triad relationship determine the process and outcome of the decision-making. Guided by Rahl's relational power model, this study is among the first to understand the experiences of advance care planning among Chinese. Method: This study includes a total of 25 primary CGs or FMs and 5 MPs from 3 neurology departments. Hybrid grounded theory method was used to analyze the preliminary data we had so far. Based on the dimensions of power, we analyzed the power base, means, and scope of each agent in each interview to determine the power comparability. Results: Three types of triadic power relations were categorized: 1) shared-power with shared-decision, in which three agents shared the power of decision-making and CG as the lawful decision-maker makes the final decisions; 2) balanced-power with reversedpatriarchal decisions, in which FM's power is over both CG and MP and become the actual decision-maker; and 3) unbalanced power with conflicting decisions, in which neither CG and FM has absolute power over each other and MP becomes the actual decision-maker implicitly. Conclusion: The study provides a framework for researchers and practitioners to understand the ACP process for Chinese older adults, which helps develop intervention strategies to improve surrogates' ACP knowledge and reduce potential conflicts during the stressful process for the population.

RACIAL DIFFERENCES IN THE IMPACT OF SUBJECTIVE LIFE EXPECTANCY ON ADVANCE CARE PLANNING
Yifan Lou, 1 and Deborah Carr, 2 1. Columbia University,New York,New York,United States,2. Boston University,Boston,Massachusetts,United States The need for advance care planning (ACP) is heightened during the COVID-19 pandemic, especially for older Blacks and Latinx persons who are at a disproportionate risk of death from both infectious and chronic disease. A potentially important yet underexplored explanation for well-documented racial disparities in ACP is subjective life expectancy (SLE), which may impel or impede ACP. Using Health and Retirement Study data (n=7484), we examined the extent to which perceived chances of living another 10 years (100, 51-99, 50, 1-49, or 0 percent) predict three aspects of ACP (living will (LW), durable power of attorney for health care designations (DPAHC), and discussions). We use logistic regression models to predict the odds of each ACP behavior, adjusted for sociodemographic, health, and depressive symptoms. We found modest evidence that SLE predicts ACP behaviors. Persons who are 100% certain they will be alive in ten years are less likely (OR = .68 and .71, respectively) whereas those with pessimistic survival prospects are more likely (OR = 1.23 and 1.15, respectively) to have a LW and a DPAHC, relative to those with modest perceived survival. However, upon closer inspection, these patterns hold only for those whose LW specify aggressive measures versus no LW. We found no race differences for formal aspects of planning (LW, DPAHC) although we did detect differences for informal discussions. Blacks with pessimistic survival expectations are more likely to have discussions, whereas Latinos are less likely relative to whites. We discuss implications for policies and practices to increase ACP rates.

REASONS FOR REFUSING HOME-BASED PALLIATIVE CARE: A QUALITATIVE STUDY OF PATIENTS AND CAREGIVERS Valeria Cardenas, YuJun Zhu, Anna Rahman, and Susan Enguidanos, University of Southern California, Los Angeles, California, United States
Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that coverage for palliative care may be insufficient to expanding patient access to home-based palliative care. Research has yet to explore palliative care barriers from the perspective of palliative care-eligible patients and their caregivers. To identify patients and caregivers' perceived barriers to home-based palliative care and their recommendations for overcoming these barriers, we conducted a qualitative study using semi-structured individual interviews. Participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed via telephone. Our interview protocol elicited participants' perspectives on home-based palliative care services; positive and negative aspects of the program explanation; and suggestions for improving messaging around home-based palliative care. Researchers used grounded theory to identify the themes within the transcripts. Two researchers independently coded the transcripts and then met to compare coding and reconciled discrepancies until 100% consensus was reached. Identified themes related to home-based palliative care referral barriers included reluctance to have home visits, timing, lack of palliative care knowledge, misconceptions of palliative care, and patients' self-perceived health condition (not sick enough for palliative care). Themes related to recommendations for overcoming these barriers included preferring a palliative care referral from healthcare providers or from insurance company and clearer presentation of palliative care service. Findings reinforce the need for additional palliative care education among patients with serious illness and the importance of delivering the information from a trusted source.

INESSS, Montréal, Canada
With years, the health-needs of an individual become numerous and more complex, resulting in the requirement of an even more appropriate offer of health services. However, it is known that different factors make the services and the request of the population to health care unequally, especially the interregional variations. These are represented by a gap between the offer of healthcare and the need of the populations. The aim of this study was 1) to map the relationship between the location of the healthcare services in Quebec and population aged 65 years and over, and 2) to identify the characteristics related to the geographic variations in access to healthcare. We used data from "statcan.gc.ca", "donneesquebec.ca" and "msss.gouv.qc.ca" regarding the facilities, their capacity, their services, and the populations' characteristics. Analyses were performed on QGIS and R software. As expected, our results showed that there is a gap between the healthcare needs and the services: older people need a large amount of diverse services which are not always provided by secluded areas. Moreover, it also appeared that the deprivation index is related to the offer of health care. As this project takes part in a global project studying the health care trajectories of older people in Quebec using their administrative health databases, those findings will help better understand the impact of the geographic factors for the interregional variations of healthcare. The Diabetes Prevention Program (DPP) lifestyle intervention demonstrated that meeting the weight loss (WL) and activity goals prevents/delays type 2 diabetes. Older DPP participants, 60-85 years, reduced the risk of developing diabetes by 71% versus 58% in those <60 years. Currently, community translated DPP-based lifestyle interventions including Group Lifestyle Balance (DPP-GLB), are reimbursed by Medicare for overweight/obese older adults with prediabetes. This effort examined the impact of age group (60-65: reference, 66-70, ≥71 years) on both DPP-GLB maintenance session attendance (months 7-12) and achieving the 5% WL goals at 6-and 12-months. Data were combined from two identical 12-month DPP-GLB intervention trials involving overweight/obese adults with prediabetes and/or metabolic syndrome. Participants ≥60 years attending ≥4 sessions (months 0-6), with complete data on session attendance and WL were included (n=145; age=68.7 + 5.8 years, range 60-88; 79% women). Participants aged 66-70 years (N=46) were more likely to meet the 6-month 5% WL goal (67.4%) vs. 60-65 years (N=51; 45.1%; p=0.03). Participants aged 66-70 (69.6%) and ≥71 years (N=48; 60.4%) were more likely to meet the 12-month WL goal vs. 60-65 years (35.3%; 66-70: p=0.0007; ≥71: p=0.01). Maintenance attendance did not vary by age group with approximately 30% of each group attending ≥4 of 6 maintenance sessions (p=0.55). In conclusion, adults 66+ vs. 60-65 years more successfully met the clinically meaningful 5% WL goals at 6 and 12 months. With nationwide implementation of communitybased "real-world" DPP-GLB lifestyle interventions, better understanding of program success across older adult age groups will enhance program reach and effectiveness.

INPATIENT DIAGNOSIS OF DELIRIUM AND ENCEPHALOPATHY: CODING TRENDS IN 2011-2018
Jeffrey Franks, Jami Anderson, Richard Kennedy, and Huifeng Yun, University of Alabama at Birmingham, Birmingham, Alabama, United States Physicians have long debated the diagnosis of acute confusional states as delirium or encephalopathy, often based on specialty. Recently, CMS assigned a lower severity to the nonspecific behavioral diagnosis of delirium than for the pathophysiological diagnosis of encephalopathy, potentially exacerbating these disagreements. Therefore, we sought to evaluate trends in these two diagnoses among hospitalized adults. Using 2011-2018 IBM MarketScan datasets, we identified delirium/encephalopathy patients who were ≥ 18 years and enrolled with medical and pharmacy coverage for each calendar year. Delirium/encephalopathy were defined using validated ICD-9/10 codes among hospitalized patients. We identified the physician specialties associated with the hospitalization and comorbidities using ICD9/10 inpatient/ outpatient diagnosis codes within one year prior to the diagnosis of delirium or encephalopathy. Log-binomial models were used to evaluate the trends adjusting for age, gender, insurance and comorbidities. We identified 10,418 delirium and 87,393 encephalopathy hospitalized patients in 2011-2018. Of these patients, the total number of patients with either diagnosis increased, but the proportion of patients with delirium for each year decreased from 20% in 2011 to 9% in 2018. During the 8 years, neurologists and internists