The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths.

BACKGROUND: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital. METHODS: This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0-24 in an academic tertiary children's hospital in South Korea. Participants were categorized into before (2011-2013; pre-period) and after (2017-2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients. RESULTS: We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease. CONCLUSIONS: SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients' and their families' values and preferences.

Exploring Hospital Transfers for Long-Stay Nursing Home Residents With End-Stage Renal Disease.

BACKGROUND: Nursing home residents with end-stage renal disease (ESRD) are an understudied, yet growing population within nursing homes. PURPOSE: To describe hospital transfers for nursing home residents diagnosed with ESRD and receiving hemodialysis. METHODS: Data were analyzed for residents with ESRD transferred to the hospital between October 2016 and September 2020 (n = 219). Descriptive statistics, bivariate analyses, logistic regression, and content analysis were used for analysis. RESULTS: Clinical factors associated with transfers included abnormal vitals, altered mental state, and pain. Other factors included lack of care planning and advance directives, provider communication, resident/family preferences, missing/refusing dialysis, and facility resources. The odds of an observation/emergency department only visit was 2.02 times larger when transferred from the dialysis clinic. CONCLUSIONS: Advance care planning and coordinated care between nursing home and dialysis clinics are needed along with proactive planning when residents miss dialysis or experience a condition change at the dialysis clinic.

Japanese Local Governments' Dissemination Activities for Advance Care Planning: A Descriptive Analysis of a Nationwide Survey during the COVID-19 Pandemic.

This study aims to compare the awareness-raising activities between municipalities with and without focused anti-infection measures during the 2019 coronavirus disease (COVID-19) pandemic. Descriptive analysis was conducted using a nationwide self-administered questionnaire survey on municipalities' activities for residents and for healthcare providers and care workers (HCPs) in October 2022 in Japan. This study included 433 municipalities that had conducted awareness-raising activities before 2019 Fiscal Year. Workshops for residents were conducted in 85.2% of the municipalities, and they were more likely to be conducted in areas with focused anti-infection measures than those without measures (86.8% vs. 75.4%). Additionally, 85.9% of the municipalities were impacted by the pandemic; 50.1% canceled workshops, while 26.0% switched to a web-based style. Activities for HCPs were conducted in 55.2-63.7% of the municipalities, and they were more likely to be conducted in areas with focused anti-infection measures. A total of 50.6-62.1% of the municipalities changed their workshops for HCPs to a web-based style. Comparisons between areas with and without focused anti-infection measures indicated that the percentages of those impacted for all activities were not significantly different. In conclusion, awareness-raising activities in municipalities were conducted with new methods during the COVID-19 pandemic. Using information technology is essential to further promote such activities for residents.

Associations between Latino ethnicity and the use of emotional support and completion of advance directives.

OBJECTIVES: Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives. METHODS: The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health-sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios. RESULTS: Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion. SIGNIFICANCE OF RESULTS: Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.

Advance Care Planning Experiences Among Sexual and Gender Minority People.

Importance: Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. Objectives: To increase understanding of barriers and facilitators of ACP facing SGM individuals. Design, Setting, and Participants: This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Exposures: Self-identified SGM. Main Outcomes and Measures: The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. Results: A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. Conclusions and Relevance: This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Association of an Advance Care Planning Video and Communication Intervention With Documentation of Advance Care Planning Among Older Adults: A Nonrandomized Controlled Trial.

Importance: COVID-19 has disproportionately killed older adults and racial and ethnic minority individuals, raising questions about the relevance of advance care planning (ACP) in this population. Video decision aids and communication skills training offer scalable delivery models. Objective: To assess whether ACP video decision aids and a clinician communication intervention improved the rate of ACP documentation during an evolving pandemic, with a focus on African American and Hispanic patients. Design, Setting, and Participants: The Advance Care Planning: Communicating With Outpatients for Vital Informed Decisions trial was a pre-post, open-cohort nonrandomized controlled trial that compared ACP documentation across the baseline pre-COVID-19 period (September 15, 2019, to March 14, 2020), the COVID-19 wave 1 period (March 15, 2020, to September 14, 2020), and an intervention period (December 15, 2020, to June 14, 2021) at a New York metropolitan area ambulatory network of 22 clinics. All patients 65 years or older who had at least 1 clinic or telehealth visit during any of the 3 study periods were included. Main Outcomes and Measures: The primary outcome was ACP documentation. Results: A total of 14 107 patients (mean [SD] age, 81.0 [8.4] years; 8856 [62.8%] female; and 2248 [15.9%] African American or Hispanic) interacted with clinicians during the pre-COVID-19 period; 12 806 (mean [SD] age, 81.2 [8.5] years; 8047 [62.8%] female; and 1992 [15.6%] African American or Hispanic), during wave 1; and 15 106 (mean [SD] 80.9 [8.3] years; 9543 [63.2%] female; and 2535 [16.8%] African American or Hispanic), during the intervention period. Clinicians documented ACP in 3587 patients (23.8%) during the intervention period compared with 2525 (17.9%) during the pre-COVID-19 period (rate difference [RD], 5.8%; 95% CI, 0.9%-7.9%; P = .01) and 1598 (12.5%) during wave 1 (RD, 11.3%; 95% CI, 6.3%-12.1%; P < .001). Advance care planning was documented in 447 African American patients (30.0%) during the intervention period compared with 233 (18.1%) during the pre-COVID-19 period (RD, 11.9%; 95% CI, 4.1%-15.9%; P < .001) and 130 (11.0%) during wave 1 (RD, 19.1%; 95% CI, 11.7%-21.2%; P < .001). Advance care planning was documented for 222 Hispanic patients (21.2%) during the intervention period compared with 127 (13.2%) during the pre-COVID-19 period (RD, 8.0%; 95% CI, 2.1%-10.9%; P = .004) and 82 (10.2%) during wave 1 (RD, 11.1%; 95% CI, 5.5%-14.5%; P < .001). Conclusions and Relevance: This intervention, implemented during the evolving COVID-19 pandemic, was associated with higher rates of ACP documentation, especially for African American and Hispanic patients. Trial Registration: ClinicalTrials.gov Identifier: NCT04660422.

Treatment intensity and mortality among COVID-19 patients with dementia: A retrospective observational study.

BACKGROUND: We sought to determine whether dementia is associated with treatment intensity and mortality in patients hospitalized with COVID-19. METHODS: This study includes review of the medical records for patients >60 years of age (n = 5394) hospitalized with COVID-19 from 132 community hospitals between March and June 2020. We examined the relationships between dementia and treatment intensity (including intensive care unit [ICU] admission and mechanical ventilation [MV] and care processes that may influence them, including advance care planning [ACP] billing and do-not-resuscitate [DNR] orders) and in-hospital mortality adjusting for age, sex, race/ethnicity, comorbidity, month of hospitalization, and clustering within hospital. We further explored the effect of ACP conversations on the relationship between dementia and outcomes, both at the individual patient level (effect of having ACP) and at the hospital level (effect of being treated at a hospital with low: <10%, medium 10%-20%, or high >20% ACP rates). RESULTS: Ten percent (n = 522) of the patients had documented dementia. Dementia patients were older (>80 years: 60% vs. 27%, p < 0.0001), had a lower burden of comorbidity (3+ comorbidities: 31% vs. 38%, p = 0.003), were more likely to have ACP (28% vs. 17%, p < 0.0001) and a DNR order (52% vs. 22%, p < 0.0001), had similar rates of ICU admission (26% vs. 28%, p = 0.258), were less likely to receive MV (11% vs. 16%, p = 0.001), and more likely to die (22% vs. 14%, p < 0.0001). Differential treatment intensity among patients with dementia was concentrated in hospitals with low, dementia-biased ACP billing practices (risk-adjusted ICU use: 21% vs. 30%, odds ratio [OR] = 0.6, p = 0.016; risk-adjusted MV use: 6% vs. 16%, OR = 0.3, p < 0.001). CONCLUSIONS: Dementia was associated with lower treatment intensity and higher mortality in patients hospitalized with COVID-19. Differential treatment intensity was concentrated in low ACP billing hospitals suggesting an interplay between provider bias and "preference-sensitive" care for COVID-19.

Effects of screening for geriatric conditions and advance care planning at the Medicare Annual Wellness Visit.

BACKGROUND: The Medicare Annual Wellness Visit (AWV) requires screening for geriatrics conditions and can include advance care planning (ACP). We examined (1) the prevalence of positive screens for falls, cognitive impairment, and activities of daily living (ADL) impairment, (2) referrals/orders generated potentially in response, and (3) the increase in ACP among those with two AWVs. METHODS: In this retrospective analysis, we used electronic medical record data from a Mid-Atlantic group ambulatory practice. We included adults age > 65 who had ≥1 AWV (n = 16,176) in years 2014-2017. Analyses on high-risk prescribing were limited to those (n = 13,537) with ≥3 months of follow up and ACP to those (n = 9097) with two AWVs. We used responses from the AWV health risk questionnaire to identify screening status for falls, cognitive and ADL impairment and whether an older adult had an ACP. For each screen we identified orders/referrals placed potentially in response (e.g., physical therapy for falls). High-risk medications were based on the 2019 Beers Criteria. RESULTS: Positive screening rates were 38% for falls, 23% for cognition, and 32% for ADL impairment. The adjusted odds of having an order placed potentially in response to the screening were 1.8 (95% CI 1.6-2.0) for falls, 1.4 (1.3-1.7) for cognition, 2.8 (2.4-3.3) for ADL impairment. The adjusted odds of a high-risk prescription in the 3 months after a positive screen were 2.1 (95% CI 1.8-2.5) for falls and 1.9 (95% CI 1.6-2.4) for cognition. Of those with two AWVs, 48% had an ACP at the first AWV. Among the remaining 52% with no ACP at the first AWV, the predicted probability of having an ACP at the second AWV was 0.22 (95% CI 0.18-0.25). CONCLUSION: Our results may indicate positive effects of screening for geriatric conditions at the AWV, and highlight opportunities to improve geriatrics care related to prescribing and ACP.

Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients: A Qualitative Study.

Importance: Early discussion of end-of-life (EOL) care preferences improves clinical outcomes and goal-concordant care. However, most EOL discussions occur approximately 1 month before death, despite most patients desiring information earlier. Objective: To describe successful navigation and missed opportunities for EOL discussions (eg, advance care planning, palliative care, discontinuation of disease-directed treatment, hospice care, and after-death wishes) between oncologists and outpatients with advanced cancer. Design, Setting, and Participants: This study is a secondary qualitative analysis of outpatient visits audio-recorded between November 2010 and September 2014 for the Studying Communication in Oncologist-Patient Encounters randomized clinical trial. The study was conducted at 2 US academic medical centers. Participants included medical, gynecological, and radiation oncologists and patients with stage IV malignant neoplasm, whom oncologists characterized as being ones whom they "…would not be surprised if they were admitted to an intensive care unit or died within one year." Data were analyzed between January 2018 and August 2020. Exposures: The parent study randomized participants to oncologist- and patient-directed interventions to facilitate discussion of emotions. Encounters were sampled across preintervention and postintervention periods and all 4 treatment conditions. Main Outcomes and Measures: Secondary qualitative analysis was done of patient-oncologist dyads with 3 consecutive visits for EOL discussions, and a random sample of 7 to 8 dyads from 4 trial groups was analyzed for missed opportunities. Results: The full sample included 141 patients (54 women [38.3%]) and 39 oncologists (8 women [19.5%]) (mean [SD] age for both patients and oncologists, 56.3 [10.0] years). Of 423 encounters, only 21 (5%) included EOL discussions. Oncologists reevaluated treatment options in response to patients' concerns, honored patients as experts on their goals, or used anticipatory guidance to frame treatment reevaluation. In the random sample of 31 dyads and 93 encounters, 35 (38%) included at least 1 missed opportunity. Oncologists responded inadequately to patient concerns over disease progression or dying, used optimistic future talk to address patient concerns, or expressed concern over treatment discontinuation. Only 4 of 23 oncologists (17.4%) had both an EOL discussion and a missed opportunity. Conclusions and Relevance: Opportunities for EOL discussions were rarely realized, whereas missed opportunities were more common, a trend that mirrored oncologists' treatment style. There remains a need to address oncologists' sensitivity to EOL discussions, to avoid unnecessary EOL treatment.

English and Spanish-speaking vulnerable older adults report many barriers to advance care planning.

BACKGROUND/OBJECTIVES: Advance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates. DESIGN: Validated questionnaires listing patient, family/friend, and clinician/system-level ACP barriers and an open-ended question on ACP barriers. SETTING: Two San Francisco public/Department of Veterans Affairs hospitals. PARTICIPANTS: One thousand two hundred and forty-one English and Spanish-speaking patients, aged 55 and older, with two or more chronic conditions. MEASUREMENTS: The open-ended question on ACP barriers was analyzed using content analysis. We conducted chart review for prior ACP documentation. We used chi-square/Wilcoxon rank-sum tests and logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation. RESULTS: Participant mean age was 65 ± 7.4 years; they were 74% from racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. A total of 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported at least one ACP barrier (mean: 5.6 ± 4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to "God" (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%), and mistrust (37%). Compared with those with no barriers, participants with at least one reported barrier were more likely to be from a racial/ethnic minority group (76% vs 53%), Spanish-speaking (39% vs 6%), with fair-to-poor health (48% vs 34%), and limited health literacy (39% vs 9%) (p < 0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted odds ratio = 0.64, 95% confidence interval [0.42, 0.98]). CONCLUSION: English- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation. Barriers must be considered when developing customized ACP interventions for diverse older adults.

Impact of group visits for older patients with heart failure on advance care planning outcomes: Preliminary data.

OBJECTIVE: Advance care planning (ACP) is critically important for heart failure patients, yet important challenges exist. Group visits can be a helpful way to engage patients and caregivers in identifying values and preferences for future care in a resource-efficient way. We sought to evaluate the impact of group visits for ACP among older adults with heart failure and their caregivers on ACP-related outcomes. METHODS: We conducted a mixed-methods pilot study evaluating the impact of an ACP group visit for older adults with heart failure and their caregivers on ACP-related outcomes including readiness and self-efficacy. The evidence-based PREPARE for Your Care video-based intervention was used to guide the group visits. Twenty patients and 10 caregivers attended one of the five 90-min group visits led by a trained facilitator. Group visit participants completed pre-, post-, and 1-month follow-up surveys using validated 5-point ACP readiness and self-efficacy scales. Qualitative feedback obtained within 3 days of a group visit was analyzed using a directed content analysis. RESULTS: Patient participants had a median age of 78 years. Approximately half were female while caregiver participants were mostly female. Participants were predominantly white. Patient readiness scores improved significantly pre-to-post (+0.53; p = 0.002) but was not sustained at 1-month follow-up. Patient and caregiver self-efficacy showed some improvement pre-to-post but was also not sustained at follow-up. Interviews revealed positive impacts of group visits across the three themes: encouraging reviewing or revisiting prior ACP activities, motivating patients to take direct steps towards ACP, and serving as a "wake-up" call to action. CONCLUSIONS: Disease-focused group visits may have a short-term effect on ACP outcomes but ongoing touchpoints are likely necessary to sustain ACP over time. The results highlight a need for follow-up ACP conversations after a single group visit. Timing for follow-ups and the ideal person to follow-up ACP conversations needs to be explored.

Advance care planning among Medicare beneficiaries with dementia undergoing surgery.

IMPORTANCE: Advance care planning (ACP), in which patients or their surrogates discuss goals and preferences for care with physicians, attorneys, friends, and family, is an important approach to help align goals with actual treatment. ACP may be particularly valuable in patients with advanced serious illnesses such as Alzheimer's disease and related dementias (ADRDs) for whom surgery carries significant risks. OBJECTIVE: To determine the frequency, timing, and factors associated with ACP billing in Medicare beneficiaries with ADRD undergoing nontrauma inpatient surgery. DESIGN: This national cohort study analyzes Medicare fee-for-service claims data from 2016 to 2017. All patients had a 6-month lookback and follow-up period. SETTING: National Medicare fee-for-service data. PARTICIPANTS: All patients with ADRD, defined according to the Chronic Conditions Warehouse, undergoing inpatient surgery from July 1, 2016 to June 30, 2017. EXPOSURES: Patient demographics, medical history, and procedural outcomes. MAIN OUTCOME: ACP billing codes from 6 months before to 6 months after admission for inpatient surgery. RESULTS: This study included 289,428 patients with ADRD undergoing surgery, of whom 21,754 (7.5%) had billed ACP within the 6 months before and after surgical admission. In a multivariable analysis, patients of white race, male sex, and residence in the Southern and Midwestern United States were at the highest risk of not receiving ACP. Of all patients who received ACP, 5960 (27.4%) did so before surgery while 12,658 (52.8%) received ACP after surgery. Timing of ACP after surgery was associated with an Elixhauser comorbidity index of 3 or higher (1.23, p = 0.045) and major postoperative complication or death (odds ratio 1.52, p < 0.0001). CONCLUSIONS AND RELEVANCE: Overall ACP billing code use is low among Medicare patients with ADRD undergoing surgery. Billed ACP appears to have a reactive pattern, occurring most commonly after surgery and in association with postoperative mortality and complications. Additional study is warranted to understand barriers to use.

A national profile of kinlessness at the end of life among older adults: Findings from the Health and Retirement Study.

BACKGROUND/OBJECTIVES: The majority of end-of-life (EOL) caregiving is provided by unpaid family members. An increasing number of older adults are kinless (without close family/partnerships) and may have insufficient caregiver support to remain at home at the EOL. We therefore determined what proportion of older adults are kinless at the EOL and assessed the association of kinlessness with EOL care. DESIGN: Retrospective analysis of Health and Retirement Study decedents, 2002-2015. SETTING: US population-based sample. PARTICIPANTS: Decedents age 51+ who died within 1 year of interview (n = 3844) and subset who are community-dwelling at last interview. MEASUREMENTS: Kinlessness was defined as lacking a spouse/partner and children. Primary outcome measure was location of death. Secondary outcome measures included contextual EOL measures such as symptom burden and caregiver support. RESULTS: A total of 7.4% of decedents were kinless at the EOL. Kinless decedents were more likely to be female, nonwhite, enrolled in Medicaid, living alone, or living in a nursing home prior to death. Although community-dwelling kinless decedents received fewer hours of caregiving per week at the EOL (34.7 vs. 56.2, p < 0.05) and were more likely to die in nursing homes (18.1% vs. 10.3%, p < 0.05) than those with kin, they did not have higher EOL symptom burden or treatment intensity (e.g., intensive care unit use). In multinomial logistic analysis controlling for demographic and illness characteristics, kinless decedents living in the community before death had a twofold increased risk of dying in the nursing home (odds ratio [OR] = 2.02 [95% confidence interval (CI) = 1.09-3.72]) and a trend toward increased risk of hospital death (OR = 1.60 [95% CI = 0.96-2.69]) versus home setting. CONCLUSIONS: Kinless individuals are more likely to die in nursing homes, even if they are living in the community in their last year of life. Expanded long-term care services and policies are needed to enable all older adults regardless of their family support systems to receive high-quality EOL care.

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives.

BACKGROUND: Older patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement. METHODS: In semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4-5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data. RESULTS: We conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients' wishes are known). CONCLUSIONS: Patients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.

Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers.

Importance: The burden of end-of-life care for patients with cirrhosis is increasing in the US, and most of these patients, many of whom are not candidates for liver transplant, die in institutions receiving aggressive care. Advance care planning (ACP) has been associated with improved end-of-life outcomes for patients with other chronic illnesses, but it has not been well-characterized in patients with decompensated cirrhosis. Objective: To describe the experience of ACP in patients with decompensated cirrhosis at liver transplant centers. Design, Setting, and Participants: For this multicenter qualitative study, face-to-face semistructured interviews were conducted between July 1, 2017, and May 30, 2018, with clinicians and patients with decompensated cirrhosis at 3 high-volume transplant centers in California. Patient participants were adults and had a diagnosis of cirrhosis, at least 1 portal hypertension-related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher. Clinician participants were health care professionals who provided care during the illness trajectory. Main Outcomes and Measures: Experiences with ACP reported by patients and clinicians. Participants were asked about the context, behaviors, thoughts, and decisions concerning elements of ACP, such as prognosis, health care preferences, values and goals, surrogate decision-making, and documentation. Results: The study included 42 patients (mean [SD] age, 58.2 [11.2] years; 28 men [67%]) and 46 clinicians (13 hepatologists [28%], 11 transplant coordinators [24%], 9 hepatobiliary surgeons [20%], 6 social workers [13%], 5 hepatology nurse practitioners [11%], and 2 critical care physicians [4%]). Five themes that represent the experiences of ACP were identified: (1) most patient consideration of values, goals, and preferences occurred outside outpatient visits; (2) optimistic attitudes from transplant teams hindered the discussions about dying; (3) clinicians primarily discussed death as a strategy for encouraging behavioral change; (4) transplant teams avoided discussing nonaggressive treatment options with patients; and (5) surrogate decision makers were unprepared for end-of-life decision-making. Conclusions and Relevance: This study found that, despite a guarded prognosis, patients with decompensated cirrhosis had inadequate ACP throughout the trajectory of illness until the end of life. This finding may explain excessively aggressive life-sustaining treatment that patients receive at the end of life.

Perceptions of the Importance of Advance Care Planning During the COVID-19 Pandemic Among Older Adults Living With HIV.

Background: The importance of advance care planning (ACP) discussions have been heightened during the COVID-19 pandemic. We assessed advance directive completion, healthcare proxy (HCP), and attitudes toward ACP among older adults ages 50+ living with HIV during the COVID-19 pandemic. Methods: Internet-based surveys were administered to 100 participants residing in the Coachella Valley, California from April to June 2020. We examined self-reported completion of an advance directive, HCP, and attitudes toward ACP before and after COVID-19. Adjusted regressions were performed on attitudes toward ACP. Results: Participants' mean age was 64.2 years, most were non-Hispanic white (88.0%), men (96.0%), and identified as sexual minorities (96.0%). Many reported having an advance directive (59.6%) or HCP (67.3%). Most (57.6%) believed ACP to be more important now compared to the pre-pandemic era. Having an advance directive was associated with increase in age, higher education, living with other people, never having an AIDS diagnosis, and current undetectable viral load (p < 0.05). Having a HCP was associated with higher education, being married/partnered, and living with other people (p < 0.05). In a logistic regression model adjusted for education and living situation, the belief that ACP was more important during COVID was associated with not having an advance directive (OR: 5.07, 95% CI: 1.78-14.40) and fear of COVID-19 infection (OR: 4.17, 95% CI: 1.61-10.76.) Conclusions: The COVID-19 pandemic presents a window of opportunity to engage people aging with HIV in ACP discussions, particularly those who do not already have an advance directive.

An advance care planning long-term care initiative in response to COVID-19.

OBJECTIVE: Describe a systematic approach to address advance care planning (ACP) during a COVID-19 outbreak and its impact on the incidence of new do-not-hospitalize (DNH) directives among long-term care (LTC) residents. DESIGN: Prospective quality improvement initiative. SETTING: Two long-term chronic care campuses within a large academic healthcare organization. PARTICIPANTS: LTC residents with activated healthcare proxies who lacked DNH directives based on documentation in the electronic medical record (EMR) as of April 13, 2020. INTERVENTION: Using a structured discussion guide, trained healthcare staff from various disciplines contacted the residents' proxies to conduct COVID-19 focused ACP discussions. Residents without DNH directives with COVID-19 were prioritized. Preferences ascertained in the discussion were communicated to the residents' primary care teams and directives were updated in the EMR accordingly. MEASUREMENTS: Residents who acquired a new DNH directive during the study initiative were determined using the EMR. Subsequent changes in DNH orders, hospitalizations, and deaths were ascertained by retrospective chart review from the date of new DNH through August 5, 2020. RESULTS: At baseline, 315/581 (54%) of LTC residents did not have a DNH directive. Their mean age was 87 (±9) years and 70% were female. Following ACP discussions, 124/315 (39%) of residents acquired a new DNH directive. Among residents with new DNH directives, 65/124 (52%) were diagnosed with COVID-19 from April 2, 2020 to May 21, 2020. During follow-up, only 6/124 (4.8%) residents had their DNH order reversed, 2/124 (1.6%) residents were hospitalized with illnesses unrelated to COVID-19, and 29/124 (23%) died. CONCLUSIONS: There was substantial opportunity to increase the proportion of LTC residents with DNH orders during the COVID-19 pandemic through a systematic ACP initiative which utilized real-time EMR data. New directives to avoid hospitalizations were sustained among the majority of residents beyond the peak of the pandemic.

Patient participation and associated factors in the discussions on do-not-attempt-resuscitation and end-of-life disclosure: a retrospective chart review study.

BACKGROUND: Patient participation is a key foundation of advance care planning (ACP). However, a patient himself/herself may be left out from sensitive conversations such as end-of-life (EOL) care discussions. The objectives of this study were to investigate patients' participation rate in the discussion of Cardiopulmonary Resuscitation (CPR) / Do-Not-Attempt-Resuscitation (DNAR) order, and in the discussion that the patient is at his/her EOL stage (EOL disclosure), and to explore their associated factors. METHODS: This is a retrospective chart review study. The participants were all the patients who were hospitalized and died in a university-affiliated teaching hospital (tertiary medical facility) in central Tokyo, Japan during the period from April 2018 to March 2019. The following patients were excluded: (1) cardiopulmonary arrest on arrival; (2) stillbirth; (3) under 18 years old at the time of death; and (4) refusal by their bereaved family. Presence or absence of CPR/DNAR discussion and EOL disclosure, patients' involvement in those discussions, and their associated factors were investigated. RESULTS: CPR/DNAR discussions were observed in 336 out of the 358 patients (93.9%). However, 224 of these discussions were carried out without a patient (patient participation rate 33.3%). Male gender (odds ratio (OR) = 2.37 [95% confidence interval (CI) 1.32-4.25]), living alone (OR = 2.51 [1.34-4.71]), and 1 year or more from the date of diagnosis (OR = 1.78 [1.03-3.10]) were associated with higher patient's participation in CPR/DNAR discussions. The EOL disclosure was observed in 341 out of the 358 patients (95.3%). However, 170 of the discussions were carried out without the patient (patient participation rate 50.1%). Patients who died of cancer (OR = 2.41[1.45-4.03]) and patients without mental illness (OR=2.41 [1.11-5.25]) were more likely to participate in EOL disclosure. CONCLUSIONS: In this clinical sample, only up to half of the patients participated in CPR/DNAR discussions and EOL disclosure. Female, living with family, a shorter period from the diagnosis, non-cancer, and mental illness presence are risk factors for lack of patients' participation in CPR/DNAR or EOL discussions. Further attempts to facilitate patients' participation, based on their preference, are warranted.