What Clinicians and Researchers Should Know About the Evolving Field of Advance Care Planning: a Narrative Review.

Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP's evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of "clinically meaningful" ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients' values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP's continued evolution to better serve patients and their care partners.

Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers.

BACKGROUND: Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes. METHODS: In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy. RESULTS: Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning. CONCLUSIONS: A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing. TRIAL REGISTRATION: ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007 .

Pain and Associated Factors in Nursing Home Residents.

BACKGROUND: Understanding factors associated with risk of pain allows residents and clinicians to plan care and set priorities, however, factors associated with pain in nursing home residents has not been conclusively studied. AIM: To evaluate the association between pain and nursing home (NH) resident demographic and clinical characteristics. DESIGN: Retrospective analysis of Minimum Data Set 3.0 records of nursing home residents residing in 44 Indiana NHs between September 27, 2011 and December 27, 2019 (N = 9,060). RESULTS: Pain prevalence in this sample of NH residents was 23.7%. Of those with pain, 28.0% experienced moderate to severe/frequent pain and 54.6% experienced persistent pain. Risk factors for moderate to severe/frequent pain include female sex; living in a rural setting; intact, mildly, or moderately impaired cognition; arthritis; contracture; anxiety; and depression. In contrast, stroke and Alzheimer's disease and Alzheimer's-disease related dementias (AD/ADRD) were associated with decreased risk of reporting moderate to severe/frequent pain, likely representing both the under-assessment and under-reporting of pain among cognitively impaired NH residents. Risk factors for persistent pain included age <70, Black race, living in a rural location, intact cognition, contracture, and depression. CONCLUSIONS: Pain remains a pressing problem for NH residents. In this study, we identified demographic and clinical factors associated with moderate to severe frequent pain and persistent pain. Residents with a diagnosis of AD/ADRD were less likely to report pain, likely representing the difficulty of evaluating pain in these residents. It is important to note that those with cognitive impairment may not experience any less pain, but assessment and reporting difficulties may make them appear to have less pain. Knowledge of factors associated with pain for NH residents has the potential for improving the ability to predict, prevent, and provide better pain care in NH residents.

Age-specific rates of hospital transfers in long-stay nursing home residents.

INTRODUCTION: hospital transfers and admissions are critical events in the care of nursing home residents. We sought to determine hospital transfer rates at different ages. METHODS: a cohort of 1,187 long-stay nursing home residents who had participated in a Centers for Medicare and Medicaid demonstration project. We analysed the number of hospital transfers of the study participants recorded by the Minimum Data Set. Using a modern regression technique, we depicted the annual rate of hospital transfers as a smooth function of age. RESULTS: transfer rates declined with age in a nonlinear fashion. Rates were the highest among residents younger than 60 years of age (1.30-2.15 transfers per year), relatively stable between 60 and 80 (1.17-1.30 transfers per year) and lower in those older than 80 (0.77-1.17 transfers per year). Factors associated with increased risk of transfers included prior diagnoses of hip fracture (annual incidence rate ratio or IRR: 2.057, 95% confidence interval (CI): [1.240, 3.412]), dialysis (IRR: 1.717, 95% CI: [1.313, 2.246]), urinary tract infection (IRR: 1.755, 95% CI: [1.361, 2.264]), pneumonia (IRR: 1.501, 95% CI: [1.072, 2.104]), daily pain (IRR: 1.297, 95% CI: [1.055,1.594]), anaemia (IRR: 1.229, 95% CI [1.068, 1.414]) and chronic obstructive pulmonary disease (IRR: 1.168, 95% CI: [1.010,1.352]). Transfer rates were lower in residents who had orders reflecting preferences for comfort care (IRR: 0.79, 95% CI: [0.665, 0.936]). DISCUSSION: younger nursing home residents may require specialised interventions to reduce hospital transfers; declining transfer rates with the oldest age groups may reflect preferences for comfort-focused care.

The design and conduct of a pragmatic cluster randomized trial of an advance care planning program for nursing home residents with dementia.

BACKGROUND/AIMS: A significant number of people with Alzheimer's disease or related dementia diagnoses will be cared for in nursing homes near the end of life. Advance care planning (ACP), the process of eliciting and documenting patient-centered preferences for care, is considered essential to providing high quality care for this population. Nursing homes are currently required by regulations to offer ACP to residents and families, but no training requirements exist for nursing home staff, and approaches to fulfilling this regulatory and ethical responsibility vary. As a result, residents may receive care inconsistent with their goals, such as unwanted hospitalizations. Pragmatic trials offer a way to develop and test ACP in real-world settings to increase the likelihood of adoption of sustainable best practices. METHODS: The "Aligning Patient Preferences-a Role Offering Alzheimer's patients, Caregivers, and Healthcare Providers Education and Support (APPROACHES)" project is designed to pragmatically test and evaluate a staff-led program in 137 nursing homes (68 = intervention, 69 = control) owned by two nursing home corporations. Existing nursing home staff receive standardized training and implement the ACP Specialist program under the supervision of a corporate lead. The primary trial outcome is the annual rate of hospital transfers (admissions and emergency department visits). Consistent with the spirit of a pragmatic trial, study outcomes rely on data already collected for quality improvement, clinical, or billing purposes. Configurational analysis will also be performed to identify conditions associated with implementation. RESULTS: Partnerships with large corporate companies enable the APPROACHES trial to rely on corporate infrastructure to roll out the intervention, with support for a corporate implementation lead who is charged with the initial introduction and ongoing support for nursing home-based ACP Specialists. These internal champions connect the project with other company priorities and use strategies familiar to nursing home leaders for the initiation of other programs. Standardized data collection across nursing homes also supports the conduct of pragmatic trials in this setting. DISCUSSION: Many interventions to improve care in nursing homes have failed to demonstrate an impact or, if successful, maintain an impact over time. Pragmatic trials, designed to test interventions in real-world contexts that are evaluated through existing data sources collected routinely as part of clinical care, are well suited for the nursing home environment. A robust program that increases access to ACP for nursing home residents has the potential to increase goal-concordant care and is expected to reduce hospital transfers. If successful, the ACP Specialist Program will be primed for rapid translation into nursing home practice to reduce unwanted, burdensome hospitalizations and improve the quality of care for residents with dementia.

Leveraging Value-Based Purchasing to Improve Advance Care Planning.

Advance care planning (ACP) is an important component of person-centered care for older adults in nursing facilities. Although nursing facilities have a statutory obligation to offer ACP to residents, there are no minimum training requirements for staff. Lack of consistent ACP training contributes to significant variability in ACP conversation quality, inaccurate or incomplete documentation of preferences, and infrequent re-evaluation of prior decisions. Indiana added ACP training for nursing facility staff to the Value-Based Purchasing formula for 2019. Facilities received 5 points (of a 100-point total formula) if at least one staff member completed the designated ACP training during the year. ACP Foundations Training was developed by faculty at Indiana University and made available to all Indiana nursing facilities. A total of 1,087 participants, representing 94.2% (501 of 532) Indiana nursing facilities, completed the training. Approximately every participant (99.4%) agreed that the training had practical value. This academic-government partnership was successful in providing basic information about ACP to staff at most nursing facilities across Indiana and offers a model for states to provide critical educational content to nursing facility staff by incentivizing training. [Journal of Gerontological Nursing, 48(2), 31-35.].

Do Life-sustaining Treatment Orders Match Patient and Surrogate Preferences? The Role of POLST.

BACKGROUND: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices. OBJECTIVE: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms. DESIGN: Chart review and interviews. SETTING: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use). PARTICIPANTS: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms. MAIN MEASUREMENTS: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83). KEY RESULTS: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance. CONCLUSIONS: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.

Facility and resident characteristics associated with variation in nursing home transfers: evidence from the OPTIMISTIC demonstration project.

BACKGROUND: Centers for Medicare and Medicaid Services (CMS) funded demonstration project to evaluate financial incentives for nursing facilities providing care for 6 clinical conditions to reduce potentially avoidable hospitalizations (PAHs). The Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) site tested payment incentives alone and in combination with the successful nurse-led OPTIMISTIC clinical model. Our objective was to identify facility and resident characteristics associated with transfers, including financial incentives with or without the clinical model. METHODS: This was a longitudinal analysis from April 2017 to June 2018 of transfers among nursing home residents in 40 nursing facilities, 17 had the full clinical + payment model (1726 residents) and 23 had payment only model (2142 residents). Using CMS claims data, the Minimum Data Set, and Nursing Home Compare, multilevel logit models estimated the likelihood of all-cause transfers and PAHs (based on CMS claims data and ICD-codes) associated with facility and resident characteristics. RESULTS: The clinical + payment model was associated with 4.1 percentage points (pps) lower risk of all-cause transfers (95% confidence interval [CI] - 6.2 to - 2.1). Characteristics associated with lower PAH risk included residents aged 95+ years (- 2.4 pps; 95% CI - 3.8 to - 1.1), Medicare-Medicaid dual-eligibility (- 2.5 pps; 95% CI - 3.3 to - 1.7), advanced and moderate cognitive impairment (- 3.3 pps; 95% CI - 4.4 to - 2.1; - 1.2 pps; 95% CI - 2.2 to - 0.2). Changes in Health, End-stage disease and Symptoms and Signs (CHESS) score above most stable (CHESS score 4) increased the risk of PAH by 7.3 pps (95% CI 1.5 to 13.1). CONCLUSIONS: Multiple resident and facility characteristics are associated with transfers. Facilities with the clinical + payment model demonstrated lower risk of all-cause transfers compared to those with payment only, but not for PAHs.

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.

Exploring provider-surrogate communication during POLST discussions for individuals with advanced dementia.

OBJECTIVES: This qualitative descriptive study explored provider-surrogate communication during Physician Orders for Life-Sustaining Treatment (POLST) discussions for patients with advanced dementia. METHODS: Data from participant observations and audio-recordings of ten POLST discussions were analyzed using directed content analysis within the context of an existing conceptual model of Communication and Surrogate Decision Making. RESULTS: Surrogates primarily focused on making sense of the clinical information about life-sustaining treatments during POLST conversations. Providers delivered clinical information about the trajectory of dementia, life-sustaining treatments, and/or features of POLST. They also demonstrated emotional support, by valuing what the surrogate said, acknowledging the surrogate's emotions, listening carefully, understanding the patient as a person, and eliciting questions. However, providers rarely conveyed comprehensive information about the patient's current condition and end-of-life treatment options. Also, open communication of expectations and preferred decision-making roles was rarely observed during the discussions. CONCLUSION: Findings highlight areas that require providers' attention to conduct effective communication, such as delivering comprehensive information about life-sustaining treatments including discussion of risks and benefits in the context of dementia. Findings also support the use of the conceptual model as a framework to examine provider-surrogate communication in the context of POLST discussions, advanced dementia, and non-hospital settings. Additional research is necessary to confirm these findings in larger, more diverse groups of patients, surrogates, and providers.