Complex Transitions from Skilled Nursing Facility to Home: Patient and Caregiver Perspectives.

BACKGROUND: Patients 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. OBJECTIVE: To study the patient and caregiver challenges and perspectives on transitions from the hospital to the SNF and back to home. DESIGN: Between 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. PARTICIPANTS: A 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 MEASURES: A 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 RESULTS: The 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. CONCLUSIONS: Post-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.

Factors Associated with Physician Moral Distress Caring for Hospitalized Elderly Patients Needing a Surrogate Decision-maker: a Prospective Study.

BACKGROUND: When working with surrogate decision-makers, physicians often encounter ethical challenges that may cause moral distress which can have negative consequences for physicians. OBJECTIVE: To determine frequency of and factors associated with physicians' moral distress caring for patients requiring a surrogate. DESIGN: Prospective survey. PARTICIPANTS: Physicians (n = 154) caring for patients aged 65 years and older and their surrogate decision-makers (n = 362 patient/surrogate dyads). Patients were admitted to medicine or medical intensive care services, lacked decisional capacity and had an identified surrogate. MAIN MEASURES: Moral distress thermometer. KEY RESULTS: Physicians experienced moral distress in the care of 152 of 362 patients (42.0%). In analyses adjusted for physician, patient, and surrogate characteristics, physician/surrogate discordance in preferences for the plan of care was not significantly associated with moral distress. Physicians were more likely to experience moral distress when caring for older patients (1.06, 1.02-1.10), and facing a decision about life-sustaining treatment (3.58, 1.54-8.32). Physicians were less likely to experience moral distress when caring for patients residing in a nursing home (0.40, 0.23-0.69), patients who previously discussed care preferences (0.56, 0.35-0.90), and higher surrogate ratings of emotional support from clinicians (0.94, 0.89-0.99). Physicians' internal discordance when they prefer a more comfort-focused plan than the patient is receiving was associated with significantly higher moral distress (2.22, 1.33-3.70) after adjusting for patient, surrogate, and physician characteristics. CONCLUSIONS: Physician moral distress occurs more frequently when the physician is male, the patient is older or requires decisions about life-sustaining treatments. These findings may help target interventions to support physicians. Prior discussions about patient wishes is associated with lower distress and may be a target for patient-centered interventions.

POLST Facilitation in Complex Care Management: A Feasibility Study.

BACKGROUND:: The Physician Orders for Life-Sustaining Treatment (POLST) form is an advance care planning tool designed for seriously ill patients. The discussions needed for high-quality POLST decision-making are time intensive and often do not occur in the outpatient setting. OBJECTIVE:: We conducted a single-arm feasibility study of POLST facilitation by nonphysicians using Respecting Choices Last Steps, a standardized, structured approach to facilitation of POLST conversations. SETTING/PARTICIPANTS:: Community-dwelling adults aged 65 and older enrolled in a complex care management program in a Midwestern urban hospital. MEASUREMENTS:: We assessed the feasibility and acceptability by determining the proportion of eligible patients who enrolled and completed the study, by adherence to the Respecting Choices protocol, and by responses to qualitative and quantitative survey items about the intervention. RESULTS:: We enrolled 18 (58.1%) of 31 eligible patients, with a mean age of 77.8 years (standard deviation: 6.95); 12 were African American. The POLST facilitation was delivered to all 18; 10 (55.6%) completed POLST forms. Direct observation of intervention delivery using a checklist found 85% of the required elements were performed by facilitators. We completed 6- to 8-week follow-up interviews in 16 of 18 patients (88.9%). We found 87.5% of decision makers agreed or strongly agreed that "Talking about the (POLST) form helped me think about what I really want." CONCLUSIONS:: The POLST facilitation can be successfully delivered to frail older adults in a complex care management setting, with high fidelity to protocol. Further research is needed to demonstrate the effects of this approach on decision quality and other patient-reported outcomes.

Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial.

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.

Nontraditional Surrogate Decision Makers for Hospitalized Older Adults.

BACKGROUND: Without advanced preparation of legal documents, state law determines who may serve as a surrogate decision maker for patients in hospitals. OBJECTIVES: To examine the relationship characteristics associated with traditional versus nontraditional health care surrogates who are making medical decisions for patients in hospitals. RESEARCH DESIGN: Secondary analysis of a baseline cross-sectional survey of a larger prospective observational study. SUBJECTS: In total, 364 patient/surrogate dyads consisting of patients aged 65 years and older admitted to the medical or medical intensive care unit services who lacked decision-making capacity based on a physician assessment and also had a surrogate available. RESULTS: This study of surrogate decision makers for hospitalized older adults found that the relationships of nontraditional surrogates such as, nieces, nephews, and friends serving in the surrogate role is nearly identical to those of traditional, first degree relatives serving as a surrogate. Over two-thirds (71.2%) of nontraditional surrogates saw the patient in-person at least weekly compared with 80.8% of legal surrogates (P-value, 0.9023). Almost all traditional and nontraditional surrogates discussed the patient's medical preferences with the patient (96.9% of legal surrogates and 89.2% of nontraditional surrogates; P=0.0510). CONCLUSIONS: This study shows that both traditional and nontraditional surrogates, who are a patient's primary care giver have similar relationships with patients. The findings of this study suggest that requiring family members such as grandchildren to take the extra step of formal appointment through a legal channel may not be necessary to protect patients. Therefore, broader state laws expanding the list of surrogates authorized by state statute to include more nontraditional surrogates may be necessary.

Communication Quality Predicts Psychological Well-Being and Satisfaction in Family Surrogates of Hospitalized Older Adults: An Observational Study.

BACKGROUND: Many 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. OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults. DESIGN: Observational study at three hospitals in a Midwest metropolitan area. PARTICIPANTS: Hospitalized 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 MEASURES: Communication 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 RESULTS: The 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 (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001). CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.

How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults.

BACKGROUND: Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. OBJECTIVES: We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so. DESIGN AND PARTICIPANTS: We performed a secondary data analysis of a study conducted at three local hospitals that surveyed surrogate decision-makers for hospitalized patients 65 years of age and older. MAIN MEASURES: Surrogates rated the importance of 16 decision-making principles and selected the one that was most important. We divided the surrogates into two groups: those who prioritized patient preferences and those who prioritized patient well-being. We analyzed the two groups for differences in knowledge of patient preferences, presence of advance directives, and psychological outcomes. KEY RESULTS: A total of 362 surrogates rated an average of six principles as being extremely important in decision-making; 77.8% of surrogates selected a patient well-being principle as the most important, whereas only 21.1% selected a patient preferences principle. Advance directives were more common to the patient preferences group than the patient well-being group (61.3% vs. 44.9%; 95% CI: 1.01-3.18; p = 0.04), whereas having conversations with the patient about their health care preferences was not a significant predictor of surrogate group identity (81.3% vs. 67.4%; 95% CI: 0.39-1.14; p = 0.14). We found no differences between the two groups regarding surrogate anxiety, depression, or decisional conflict. CONCLUSIONS: While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

Validation of the Family Inpatient Communication Survey.

CONTEXT: Although many family members who make surrogate decisions report problems with communication, there is no validated instrument to accurately measure surrogate/clinician communication for older adults in the acute hospital setting. OBJECTIVES: The objective of this study was to validate a survey of surrogate-rated communication quality in the hospital that would be useful to clinicians, researchers, and health systems. METHODS: After expert review and cognitive interviewing (n = 10 surrogates), we enrolled 350 surrogates (250 development sample and 100 validation sample) of hospitalized adults aged 65 years and older from three hospitals in one metropolitan area. The communication survey and a measure of decision quality were administered within hospital days 3 and 10. Mental health and satisfaction measures were administered six to eight weeks later. RESULTS: Factor analysis showed support for both one-factor (Total Communication) and two-factor models (Information and Emotional Support). Item reduction led to a final 30-item scale. For the validation sample, internal reliability (Cronbach's alpha) was 0.96 (total), 0.94 (Information), and 0.90 (Emotional Support). Confirmatory factor analysis fit statistics were adequate (one-factor model, comparative fit index = 0.981, root mean square error of approximation = 0.62, weighted root mean square residual = 1.011; two-factor model comparative fit index = 0.984, root mean square error of approximation = 0.055, weighted root mean square residual = 0.930). Total score and subscales showed significant associations with the Decision Conflict Scale (Pearson correlation -0.43, P < 0.001 for total score). Emotional Support was associated with improved mental health outcomes at six to eight weeks, such as anxiety (-0.19 P < 0.001), and Information was associated with satisfaction with the hospital stay (0.49, P < 0.001). CONCLUSION: The survey shows high reliability and validity in measuring communication experiences for hospital surrogates. The scale has promise for measurement of communication quality and is predictive of important outcomes, such as surrogate satisfaction and well-being.

Wishard Volunteer Advocates Program: an intervention for at-risk, incapacitated, unbefriended adults.

Unbefriended, incapacitated individuals who lack surrogates to make medical decisions present a complex problem to the healthcare providers who treat them. Adults without surrogates are among the most vulnerable in the community and are often alone and estranged from family, neglected and abused, and at risk of receiving inappropriate medical treatment. This article describes the program model and outcomes for the first 2 years of the Wishard Volunteer Advocates Program (WVAP), a guardianship program using trained, supervised volunteers as surrogates for unbefriended, incapacitated individuals. Of the 50 individuals enrolled during the study period, 20 were female, and 39 were Caucasian and 11 African American. Their average age was 67. Nineteen were insured with Medicare as primary and Medicaid as supplementary insurance. Ninety-eight percent had four or more comorbid conditions at the time of the index hospitalization. Before program referral, many lived alone in unsafe conditions. Adult Protective Services was involved in almost half of the cases at the time of the index hospitalization. Approximately half of the participants required some type of property management. Healthcare usage data demonstrated that most were not receiving medical care before WVAP enrollment; the data indicated a decrease in emergency department visits and hospitalization after WVAP enrollment. The WVAP completed Medicaid applications for 12 participants, resulting in $297,481.62 in reimbursement for the index hospitalization and a payer source for subsequent hospitalization and long-term care. The volunteer advocate model provides an efficient and quality mechanism for providing unbefriended individuals with surrogates.