An Integrative Review of the State of POLST Science: What Do We Know and Where Do We Go?

OBJECTIVES: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research. DESIGN: Integrative review. SETTING AND PARTICIPANTS: Not applicable. METHODS: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization. RESULTS: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified. CONCLUSIONS AND IMPLICATIONS: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes.

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.

JPSM Controversies in Palliative Care: "What is the Most Important, Measurable Goal of Serious Illness Conversations in the Ambulatory Setting?"

There is widespread agreement that clinicians should talk to seriously ill patients and their families about their illnesses. However, advance directives as a quality metric have been called into question because of the lack of data that these conversations lead to goal-concordant care. The controversy has led many to reexamine the purpose of conversations with seriously ill patients and what should be discussed in ambulatory visits.  In this Controversies in Palliative care, experts in palliative care review the literature and suggest both how it influences their clinical practice and what research needs to be done to clarify the controversy. While there is not a single outcome that the experts agree on, they posit a variety of different ways to assess these conversations.

Factors influencing clinician decision-making about POLST use with nursing facility residents: A qualitative study.

BACKGROUND: National POLST guidance indicates POLST is intended for individuals at risk of life-threatening clinical events due to serious illness. Even though this patient population includes many, but not all, nursing facility residents, there is evidence that POLST is used broadly in this setting. This study aimed to identify clinician perspectives regarding factors that influence their decision-making about whether to use POLST with nursing facility residents and to distinguish between inappropriate and appropriate use. METHODS: We conducted a descriptive qualitative study to explore the experience of nursing facility clinicians using POLST with residents and deciding who is appropriate and inappropriate for POLST. Participants were purposively sampled from multiple states using POLST. Interviews were audio-recorded and professionally transcribed. We used rapid qualitative analysis to code data and identify themes. RESULTS: We interviewed 28 clinicians from 14 states about how they decided whether to use POLST with nursing facility residents and to distinguish between inappropriate and appropriate use. Four themes emerged as factors driving clinician-decision-making POLST use: (1) belief that "everyone is appropriate"; (2) resident and family preferences; (3) resident health status; and (4) policies requiring POLST [Correction added after first online publication on 07 Feb 2024. The word "For" has been changed to "Four" in the previous sentence.]. In most cases, participants cited resident and family preferences for treatment limitations as well as prognosis and clinical assessments in determining when POLST use was appropriate. Factors influencing potentially inappropriate POLST use included nursing facility policies requiring POLST completion that preempted clinical judgments of appropriateness. CONCLUSIONS: Findings highlight the disconnect between National POLST guidance and current use of POLST in nursing facilities. Policies requiring POLST use in nursing facilities and the belief that "everyone is appropriate" may impede clinician autonomy and lead to potentially inappropriate POLST use. Given varying approaches to POLST use in nursing facilities, there is a need to refocus attention on the intended population for POLST.

Advance Care Planning in the United States: A 2023 review.

Advance Care Planning (ACP) in the US is complex due in part to a lack of a unified health care system, though more recent policy changes permitting reimbursement for ACP conversations offer some hope. One key barrier to ACP is public perceptions of ACP, made worse by a historical focus on messaging that is unappealing and does not meet people's need to focus on the present before contemplating the future. As we learn more about how to engage the public, there is also increasing recognition that the previous focus on making very specific decisions about the future needs to shift to a focus on preparing people for communication and decision making. Numerous programs exist for health care professionals to support meaningful explorations of goals, values, and preferences, and there is growing availability of resources to support this work, both in the community and health care setting. Further research is needed to understand the full complexity of ACP implementation and to identify person-centred outcomes to support high quality ACP.

Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE): Protocol for a randomized controlled trial in persons with advanced dementia.

BACKGROUND: Dementia affects 6.5 million persons in the U.S., a number which is expected to double by 2060. More than half of persons with dementia die at home, creating an enormous burden for both patients and caregivers. However, there is a paucity of research on community-based palliative care interventions for advanced dementia. OBJECTIVES: The Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE) study is a randomized trial to test the effectiveness of a collaborative predominantly telehealth home-based intervention for persons with advanced dementia residing in the community and their primary, informal caregivers. The primary aim is to determine if this palliative care focused supportive intervention is superior to usual care in reducing neuropsychiatric symptoms of dementia. Secondarily, intervention effects on other patient symptoms (e.g., pain), caregiver distress and depression, and emergency department (ED)/hospitalization events are examined. METHODS: The study population consists of participant pairs comprising a person with dementia and their primary, informal caregiver. The person with dementia must be ≥65 years old, with a clinical diagnosis of moderate to severe dementia. A total of 201 demographically and socioeconomically diverse participant pairs have been randomized to the IN-PEACE care coordination intervention (n = 99) or usual care (n = 102). Outcome assessments are conducted at baseline, and quarterly for up to 2 years (3, 6, 9, 12, 15, 18, 21, and 24 months). DISCUSSION: IN-PEACE results will inform care for the large number of individuals with advanced dementia residing in the community and enable informal caregivers to provide effective home-based care. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT03773757.

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.

POLST recall, concordance, and decision quality outcomes among nursing home residents and surrogate decision-makers.

BACKGROUND: POLST orders are actionable in an emergency, so it is important that the decisions be of high quality and concordant with current preferences. The goal of this study is to determine the relationship between concordance and decision quality outcomes, including decision satisfaction and decisional conflict, among nursing facility residents and surrogates who recall POLST. METHODS: We completed structured interviews in 29 nursing facilities with 275 participants who had previously signed a POLST form. This included residents who were still making their own medical decisions (n = 123) and surrogate decision-makers for residents without decisional capacity (n = 152). POLST recall was defined as remembering talking about and/or completing the POLST form previously signed by the participant. Concordance was determined by comparing preferences elicited during a standardized interview with the POLST form on file. Decisional conflict, decision satisfaction, and conversation quality were assessed with standardized tools. RESULTS: Half of participants (50%) remembered talking about or completing the POLST form, but recall was not associated with the length of time since POLST completion or concordance with existing preferences. In multivariable analyses, there was no association between POLST recall, concordance, and decision quality outcomes, though satisfaction was associated with conversation quality. CONCLUSIONS: Half of the residents and surrogates in this study recalled the POLST they previously signed. Neither the age of the form nor the ability to recall the POLST conversation should be considered indicators of whether existing POLST orders match current preferences. Findings confirm a relationship between POLST conversation quality and satisfaction, underscoring the importance of POLST completion as a communication process.

Don't Throw the Baby Out With the Bathwater: Meta-Analysis of Advance Care Planning and End-of-life Cancer Care.

CONTEXT: There is ongoing discourse about the impact of advance care planning (ACP) on end-of-life (EOL) care. No meta-analysis exists to clarify ACP's impact on patients with cancer. OBJECTIVE: To investigate the association between, and moderators of, ACP and aggressive vs. comfort-focused EOL care outcomes among patients with cancer. METHODS: Five databases were searched for peer-reviewed observational/experimental ACP-specific studies that were published between 1990-2022 that focused on samples of patients with cancer. Odds ratios were pooled to estimate overall effects using inverse variance weighting. RESULTS: Of 8,673 articles, 21 met criteria, representing 33,541 participants and 68 effect sizes (54 aggressive, 14 comfort-focused). ACP was associated with significantly lower odds of chemotherapy, intensive care, hospital admissions, hospice use fewer than seven days, hospital death, and aggressive care composite measures. ACP was associated with 1.51 times greater odds of do-not-resuscitate orders. Other outcomes-cardiopulmonary resuscitation, emergency department admissions, mechanical ventilation, and hospice use-were not impacted. Tests of moderation revealed that the communication components of ACP produced greater reductions in the odds of hospital admissions compared to other components of ACP (e.g., documents); and, observational studies, not experimental, produced greater odds of hospice use. CONCLUSION: This meta-analysis demonstrated mixed evidence of the association between ACP and EOL cancer care, where tests of moderation suggested that the communication components of ACP carry more weight in influencing outcomes. Further disease-specific efforts to clarify models and components of ACP that work and matter to patients and caregivers will advance the field.

Pain trajectories of nursing home residents.

BACKGROUND: Understanding changes in nursing home (NH) resident pain over time would provide a more informed perspective, allowing opportunities to alter the course of illness, plan care, and set priorities. Therefore, the purpose of this analysis was to identify and characterize clinically meaningful, dynamic pain trajectories in NH residents. METHODS: Retrospective longitudinal analysis of NH resident pain scores with a length of stay >100 days (N = 4864). Group-based trajectory modeling was applied to Minimum Data Set 3.0 assessments to identify pain trajectories. Trajectories were then characterized using unadjusted and adjusted cross-sectional associations between residents' demographic and clinical characteristics and their pain trajectory. RESULTS: We identified four distinct trajectories: (1) consistent pain absence (48.9%), (2) decreasing-increasing pain presence (21.8%), (3) increasing-decreasing pain presence (15.3%), and (4) persistent pain presence (14.0%). Demographics of younger age and living in a rural area were associated with the persistent pain presence trajectory. Clinical variables of obesity and intact cognition were associated with being in the persistent pain presence trajectory. A smaller proportion of residents with moderately or severely impaired cognition were in any of the trajectory groups with pain. CONCLUSIONS: We identified and characterized four pain trajectories among NH residents, including persistent pain presence which was associated with demographic characteristics (younger, female, rural) and clinical factors (obese, fracture, contracture). Moreover, residents with a diagnosis of Alzheimer's disease or dementia were less likely to be in any of the three trajectories with pain, likely representing the difficulty in evaluating pain in these residents. It is important that NH staff understand, recognize, and respond to the factors associated with the identified pain trajectories to improve mitigation of potentially persistent pain (e.g., hip fracture, contracture) or improve proxy pain assessment skills for residents at risk for under reporting of pain (e.g., Alzheimer's Disease).

Reasons for Discordance Between Life-Sustaining Treatment Preferences and Medical Orders in Nursing Facilities Without POLST.

BACKGROUND: Life-sustaining treatment (LST) orders are important communication tools used to ensure preference-concordant care at the end of life. Recent studies reveal concerning rates of discordance between current preferences and documented LST orders, especially in nursing facilities without POLST. Reasons for discordance in facilities using POLST have been explored, however the majority of nursing facilities in the United States do not yet use the POLST form. DESIGN: Qualitative descriptive study using constant comparative analysis. SETTING: Nursing facilities in Indiana (n = 6) not using POLST. PARTICIPANTS: Residents (n = 15) and surrogate decision-makers of residents without decisional capacity (n = 15) with discordance between current preferences and documented LST orders. MEASUREMENTS: Do not resuscitate, do not hospitalize (DNH), and do not intubate (DNI) orders were extracted from medical charts. Current preferences were elicited using the Respecting Choices Advanced Steps model. A semi-structured interview guide was used to explore reasons for discordance between current preferences and LST orders. RESULTS: Reasons for discordance included: (1) inadequate information about the range of available LST options, what each involves, and how to formally communicate preferences; (2) no previous discussion with facility staff; (3) no documentation of previously expressed preferences; and (4) family involvement. CONCLUSION: Reasons for discordance between expressed preferences and LST orders suggest that in facilities without a uniform and systematic LST order documentation strategy like POLST, these conversations may not occur and/or be documented. Staff should be aware that residents and surrogates may have preferences about LSTs that require strategic solicitation and documentation.

Prevalence and Factors Associated with Pain in Nursing Home Residents: A Systematic Review of the Literature.

OBJECTIVES: To describe the pain prevalence in nursing home (NH) residents and the factors associated with the experience of pain. DESIGN: Systematic review of descriptive studies. SETTING AND PARTICIPANTS: Three electronic databases were searched from 2010 to September 2020 in English. Descriptive studies that examined pain in NH residents, reported pain prevalence, and/or associated factors were included. Studies that focused exclusively on a specific disease or type of care such as cancer or hospice were excluded. METHODS: Two reviewers independently screened, selected, extracted data, and assessed risk of bias from included studies; narrative synthesis was performed. The review was guided by the Biopsychosocial Model of Chronic Pain for Older Adults. RESULTS: Twenty-six studies met our inclusion criteria. Overall, the prevalence of current pain ranged from 22.2% to 85.0%, the prevalence of persistent pain ranged from 19.5% to 58.5%, and the prevalence of chronic pain ranged from 55.9% to 58.1%. A variety of pain scales were used reporting higher pain prevalence for those using self-report measures (31.8% to 78.8%) or proxy measures (29.5% to 85.0%) compared with using chart review (22.2% to 29.3%) as the source of pain information. The studies reviewed provide support that certain diseases and clinical conditions are associated with pain. Impairment in activities of daily living (ADL) (12 studies), cognition (9 studies), depression (9 studies), and arthritis (9 studies) are the most widely studied factors, whereas depression, ADL impairment, arthritis, dementia, and cognitive impairment present the strongest association with pain. CONCLUSION AND IMPLICATIONS: This review highlights the complexities of pain in NH residents and has implications for both clinical practice and future research. Understanding the factors that underlie the experience of pain, such as depression, is useful for clinicians evaluating pain and tailoring management therapies. In addition, the gaps in knowledge uncovered in this review are important areas for future research.

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.

Prevalence and Predictors of Symptoms in Persons with Advanced Dementia Living in the Community.

Background: Behavioral, psychological, and physical symptoms are prevalent in advanced dementia, as well as major contributors to poor quality of life, health care costs, caregiver burden, and nursing home placement. Objectives: To determine the frequency and severity of symptoms in persons with advanced dementia living in the community, as well as the association between symptoms and satisfaction with care, and the identification of factors associated with symptom burden. Design: Baseline data from a clinical trial testing the effectiveness of collaborative care home-based management for patients with advanced dementia. Setting/Subjects: Two hundred and one patient-caregiver dyads from an urban area in the United States, who were still residing in the community. Measurements: Caregivers completed the Symptom Management in End-of-Life Dementia (SM-EOLD) and Satisfaction with Care in End-of-Life Dementia (SWC-EOLD) scales. Results: Patients' mean age was 83.1; 67.7% were women, and most were either White (50.2%) or African American (43.8%). Most (88.1%) had severe dementia (Functional Assessment Staging Tool [FAST] stage 6 or 7). SM-EOLD mean score was 29.3 (on 0-45 scale) and SWC-EOLD score was 32.6 (on 10-40 scale). Pain, agitation, anxiety, and resistiveness to care were present at least weekly in ≥40% of patients. Multivariable linear regression modeling showed that higher neuropsychiatric symptom severity (assessed by the Neuropsychiatric Inventory), increased caregiver strain, and higher medical comorbidity were all independently associated with increased symptom burden. Satisfaction with care was high and had only a modest correlation (r = 0.20) with symptom burden. Conclusions: Community-dwelling patients with advanced dementia and their caregivers may benefit from home-based palliative care interventions to identify and manage burdensome symptoms.

Caught in a Loop with Advance Care Planning and Advance Directives: How to Move Forward?

Completion of an advance care planning (ACP) process and/or an advance directive should result in patients receiving the care they desire at the end of life. However, three decades of research have shown that is just not the case. ACP has been a front runner in developing the science within palliative care. Some positive outcomes such as lowering levels of surrogate grief may be associated with ACP. Yet, it does not appear that further ACP research will ensure that seriously ill patients will get goal-concordant care. An unfortunate consequence of palliative care research and advocacy so far is the misguided notion of many hospital systems trying to solve their palliative care problems by only implementing an ACP initiative. At best, ACP is but one tool in the collective palliative care toolbox. New tools are needed. Given that we have finite resources, future research should focus more on tools to improve symptom management, better models of care, and systems that will ensure goal-concordant care that meet the needs of the population that the health care system is designed to meet.

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.].