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Spirituality is vital to holistic patient care and should be proactively addressed by healthcare providers as unmet spiritual needs are a major source of suffering for patients living with chronic illnesses. However, spiritual concerns are seldom referenced by clinicians during disease-related treatment discussions, particularly for minority and under-resourced patients. This paper outlines a protocol for administering and evaluating a culturally-responsive spiritual care intervention conducted with chronically ill African Americans receiving care at a community safety net health service. A total of 60 African American patients who have chronic conditions and are aged 50 or older will be recruited for this study and randomly assigned to either the intervention (spiritual care program delivered by a board-certified chaplain) or the control group. All participants will complete a baseline interview that encompasses demographic information, religiosity, spiritual well-being, quality of life, and perception of care. Follow-up surveys will be conducted 12 weeks post-baseline, and participants assigned to the intervention group will also undergo a semi-structured acceptability and feasibility interview. Effect size measures and bivariate tests will be used to compare pre- and post-test outcomes while the interviews will be analyzed using constant comparative and thematic analysis. Study findings will assess the feasibility and effectiveness of a culturally-responsive spiritual care intervention for under-resourced African American patients with chronic illnesses. Furthermore, the provision of spiritual care may help patients clarify their healthcare values and decision making priorities.

Background The goal of this paper is to develop a more thorough understanding of the experiences of LGBT older adults living with dementia and their caregivers. Methods A phenomenological approach using in-depth interviews with current or former caregivers of LGBT persons living with Alzheimer’s disease (AD) was conducted. Results Participants ranged in age from 44–77 years old; 74% were lesbian, 16% gay, 5% straight, and 5% unknown. Five themes were identified from the analysis: Caregiver tension and isolation; financial stress & security; lack of social support & connection; engineering grief support, and entrapment of past and present stigma and discrimination. Conclusions Discrimination related to LGBT status was an important theme over the participants’ lives and occurred for several during dementia care. While other themes were similar to prior AD studies, LGBT status affected these other aspects of the caregiving experience. Findings can inform future programs that better meet needs of LGBT people and those who care for them.

Substituted judgment is often invoked as a guide for decision making when a patient lacks decision making capacity and has no advance directive. Using substituted judgment, doctors and family members try to make the decision that the patient would have made if he or she were able to make decisions. However, empirical evidence suggests that the moral basis for substituted judgment is unsound. In spite of this, many physicians and bioethicists continue to rely on the notion of substituted judgment. Given compelling evidence that the use of substituted judgment has insurmountable flaws, other approaches should be considered. One approach provides limits on decision making using a best interest standard based on community norms. A second approach uses narrative techniques and focuses on each patient’s dignity and individuality rather than his or her autonomy.

Introduction As cancer care increasingly shifts to outpatient settings, patients with incurable cancer and their caregivers face growing challenges in addressing supportive oncology needs across five domains: informational, physical, emotional, social, and spiritual. Integration of supportive care in routine oncology practice—or primary palliative care—remains limited. Oncology encounters prioritize clinical agendas, leaving little time for supportive care and setting the stage for adverse outcomes. This study pilot tested a primary palliative care communication intervention, PRECURSOR (NCT05995860), using a nonrandomized (10 usual care control, 10 intervention) approach in a gynecology oncology clinic. Methods PRECURSOR combines a brief Freelisting activity—used to elicit communication intentions about supportive oncology needs among patients, caregivers, and providers—with an educational handout on the five domains of supportive oncology needs. Primary outcomes were feasibility (≥25% enrollment rate; ≥4 enrollments/month) and acceptability (overall and by component). Exploratory outcomes were communication behaviors (qualitatively coded from audio-recorded encounters) and post-encounter outcomes (via surveys). Results Of 1356 screened, 78 were eligible, and 20 enrolled (26%) in 38 weeks (2 enrollments/month). Most (70-78%) patients, caregivers, and providers rated PRECURSOR as acceptable overall. Patients and caregivers found both components acceptable, but providers favored the educational handout. Among exploratory outcomes, a greater proportion of the supportive oncology needs discussed during encounters were initiated by patients in the intervention group (46%), compared to control (37%). Average distress and anxiety scores were lower in the intervention group. No other patterns were observed among the exploratory outcomes. Qualitative findings indicated PRECURSOR was valuable, but refinements were suggested to increase impact. Conclusions PRECURSOR was a feasible and acceptable primary palliative care communication intervention in the outpatient oncology setting. PRECURSOR holds potential to foster more patient-centered communication about supportive oncology needs and improve the psychological well-being of patients and caregivers facing incurable cancer, though refinements are needed.

BackgroundMany hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient’s hospitalization.ObjectiveTo determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.DesignObservational study at three hospitals in a Midwest metropolitan area.ParticipantsHospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.Main MeasuresCommunication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4–6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).Key ResultsThe mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (β = −0.30, p = 0.003) and higher decision quality (β = −0.44, p < 0.0001). Information was associated with higher post-traumatic stress (β = 0.23, p = 0.022) but also higher satisfaction (β = 0.61, p < 0.001).ConclusionsEmotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.

IntroductionProviding care management, treatment and support to patients with Alzheimer’s Disease and Related Dementias (ADRD) is a difficult task for health systems. Over the past 20 years, interventions designed to improve outcomes for patients living in the community with dementia and their care partners have moved progressively, but separately, from large scale trials and pragmatic models of collaborative care. Given the projected increase in the number of people living with dementia coupled with the realignment of payment for services to be value-based and provided in the community, system-level approaches are needed to address the complex needs of patients with a dementia diagnosis and their care partners. We designed a statewide, pragmatic trial to evaluate virtual delivery of an evidence-based dementia collaborative care program on patient healthcare utilization and medication use.Methods and analysisThe Aging Brain Care Virtual (ABCV) program is a 12-month embedded, cluster randomized, usual care controlled trial designed to test the effectiveness of a virtual dementia collaborative care program in 24 Indiana University Health primary care clinics (12 intervention, 12 control) across the state of Indiana, enrolling 860 persons living with dementia (430 intervention, 430 control) and their care partners. ABCV relies on a tailored approach in which dyad needs are identified during virtual visits and addressed with standardized protocols previously tested in a randomized controlled trial delivered in person. The ABCV trial will measure emergency department utilization (primary outcome) and appropriate medication use (secondary outcome) at 12 months using electronic medical record data. Additionally, this study will use semi-structured interviews with care partners and clinicians to explore the implementation context, process and outcomes of the ABCV program.Ethics and disseminationEthics approval was obtained from the Indiana University Institutional Review Board (20249). Research findings will be published in peer-reviewed journals and presented at scientific conferences.Trial registration numberNCT06245499.

IntroductionAn important goal of advance care planning (ACP) is ensuring that patients receive care concordant with their preferences. High-quality evidence is needed about the effect of ACP on this and other outcomes.Methods and analysisPlanning Ahead is a randomised controlled trial to test the effectiveness of facilitated ACP in community-dwelling older adults including those with normal cognition and those with Alzheimer’s Disease and Related Dementias (ADRD) who are at high risk of death. The primary aim is to determine the effect of the intervention on discordance between preferences for medical treatments and the treatments received in the year after the intervention. Secondary outcomes include decision-making quality, care at the end of life and cost. Eligible patients have a primary care provider at one of two Midwest health systems, have an approximate 33% mortality risk and do not have a POLST form at baseline. Patients with capacity can invite the person they would choose to be their healthcare decision maker to participate as a study partner. A surrogate decision maker enrols and receives the intervention for patients who lack capacity due to ADRD. The intervention uses the Respecting Choices Advanced Steps (RCAS) model of ACP delivered by a registered nurse and includes identification of the patient’s values and goals, education about ACP and the POLST form and the opportunity to complete a POLST form.Ethics and disseminationThe study is approved by the Indiana University Institutional Review Board. Primary and secondary analyses will be published in peer-reviewed journals. We also plan dissemination through the media. We will construct a deidentified data set that could be available to other researchers. Survey data will be preserved and shared via the NIH-supported National Archive of Computerised Data on Ageing’s (NACDA) Open Ageing Repository (OAR).Trial registration numberNCT04070183.

Background Alzheimer’s disease and related dementias (ADRD) impact a woman’s life expectancy and her ability to participate in medical decision-making about breast cancer screening, necessitating the involvement of family caregivers. Making decisions about mammography screening for women with ADRD is stressful. There are no data that suggest that breast cancer screening helps women with ADRD live longer or better. Decision aids may improve the quality of decision-making about mammography for ADRD patients and may inform family caregivers about the risks, benefits, and need for decision-making around mammography screening. Methods/design The Decisions about Cancer Screening in Alzheimer’s Disease (DECAD) trial, a randomized controlled clinical trial, will enroll 426 dyads of older women with ADRD (≥75 years) and a family caregiver from clinics and primary-care practices in Indiana to test a novel, evidence-based decision aid. This decision aid includes information about the impact of ADRD on life expectancy, the benefit of mammograms, and the impact on the quality of life for older women with ADRD. Dyads will be randomized to receive the decision aid or active control information about home safety. This trial will examine the effect on the caregiver’s decisional conflict (primary outcome) and the caregiver’s decision-making self-efficacy (secondary outcome). A second follow-up at 15 months will include a brief, semi-structured interview with the caregiver regarding the patient’s experience with mammograms and decision-making about mammograms. At the same time, a review of the patient’s electronic medical record (EMR) will look at discussions about mammography with their primary-care physician and mammogram orders, receipt, results, and burden (e.g., additional diagnostic procedures due to false-positive results, identification of an abnormality on the screening exam but further work-up declined, and identification of a clinically unimportant cancer). A third follow-up at 24 months will extract EMR data on mammogram orders, occurrences, results, and the burden of mammograms. Discussion We hypothesize that caregivers who receive the decision aid will have lower levels of decisional conflict and higher levels of decision-making self-efficacy compared to the control group. We also hypothesize that the DECAD decision aid will reduce mammography use among older women with ADRD. Trial registration Clinical Trials Register, NCT03282097 . Registered on 13 September 2017.

ABSTRACT BACKGROUND The use of online social networks (OSNs) among physicians and physicians-in-training, the extent of patient–doctor interactions within OSNs, and attitudes among these groups toward use of OSNs is not well described. OBJECTIVE To quantify the use of OSNs, patient interactions within OSNs, and attitudes toward OSNs among medical students (MS), resident physicians (RP), and practicing physicians (PP) in the United States. DESIGN/SETTING A random, stratified mail survey was sent to 1004 MS, 1004 RP, and 1004 PP between February and May 2010. MEASUREMENTS Percentage of respondents reporting OSN use, the nature and frequency of use; percentage of respondents reporting friend requests by patients or patients’ family members, frequency of these requests, and whether or not they were accepted; attitudes toward physician use of OSNs and online patient interactions. RESULTS The overall response rate was 16.0% (19.8% MS, 14.3% RP, 14.1% PP). 93.5% of MS, 79.4% of RP, and 41.6% of PP reported usage of OSNs. PP were more likely to report having visited the profile of a patient or patient’s family member (MS 2.3%, RP 3.9%, PP 15.5%), and were more likely to have received friend requests from patients or their family members (MS 1.2%, RP 7.8%, PP 34.5%). A majority did not think it ethically acceptable to interact with patients within OSNs for either social (68.3%) or patient-care (68.0%) reasons. Almost half of respondents (48.7%) were pessimistic about the potential for OSNs to improve patient–doctor communication, and a majority (79%) expressed concerns about maintaining patient confidentiality. CONCLUSION Personal OSN use among physicians and physicians-in-training mirrors that of the general population. Patient–doctor interactions take place within OSNs, and are more typically initiated by patients than by physicians or physicians-in-training. A majority of respondents view these online interactions as ethically problematic.

BackgroundPatients who undergo the complex series of transitions from the hospital to a skilled nursing facility (SNF) back to home represent a unique patient population with multiple comorbidities and impaired functional abilities. The needs and outcomes of patients who are discharged from the hospital to SNF before returning home are understudied in care transitions scholarship.ObjectiveTo study the patient and caregiver challenges and perspectives on transitions from the hospital to the SNF and back to home.DesignBetween 48 h and 1 week after discharge from the SNF, semi-structured interviews were performed with a convenience sample of patients and caregivers in their homes. Within 1 to 2 weeks after the baseline interview, follow-up interviews were performed over the phone.ParticipantsA total of 39 interviewees comprised older adults undergoing the series of transitions from hospital to skilled nursing facility to home and their informal caregivers.Main MeasuresA constructionist, grounded-theory approach was used to code the interviews, identify major themes and subthemes, and develop a theoretical model explaining the outcomes of the SNF to home transition.Key ResultsThe mean age of the patients was 76.6 years and 64.8 years for the caregivers. Four major themes were identified: comforts of home, information needs, post-SNF care, and independence. Patients noted an extended time away from home and were motivated to return to and remain in the home. Information needs were variably met and affected post-SNF care, including medication management, appointments, and therapy gains and setbacks. Interviewees identified independent function at home as the most important outcome of the transition home.ConclusionsPost-SNF in home support is needed rapidly after discharge from the SNF to prevent adverse outcomes. In-home support needs to be highly individualized based on a patient’s and caregiver’s unique situation and needs.