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.

"Diving in the deep-end and swimming": a mixed methods study using normalization process theory to evaluate a learning collaborative approach for the implementation of palliative care practices in hemodialysis centers.

BACKGROUND: Normalization Process Theory (NPT) is an implementation theory that can be used to explain how and why implementation strategies work or not in particular circumstances. We used it to understand the mechanisms that lead to the adoption and routinization of palliative care within hemodialysis centers. METHODS: We employed a longitudinal, mixed methods approach to comprehensively evaluate the implementation of palliative care practices among ten hemodialysis centers participating in an Institute for Healthcare Improvement Breakthrough- Series learning collaborative. Qualitative methods included longitudinal observations of collaborative activities, and interviews with implementers at the end of the study. We used an inductive and deductive approach to thematic analysis informed by NPT constructs (coherence, cognitive participation, collective action, reflexive monitoring) and implementation outcomes. The NoMAD survey, which measures NPT constructs, was completed by implementers at each hemodialysis center during early and late implementation. RESULTS: The four mechanisms posited in NPT had a dynamic and layered relationship during the implementation process. Collaborative participants participated because they believed in the value and legitimacy of palliative care for patients receiving hemodialysis and thus had high levels of cognitive participation at the start. Didactic Learning Sessions were important for building practice coherence, and sense-making was solidified through testing new skills in practice and first-hand observation during coaching visits by an expert. Collective action was hampered by limited time among team members and practical issues such as arranging meetings with patients. Reflexive monitoring of the positive benefit to patient and family experiences was key in shifting mindsets from disease-centric towards a patient-centered model of care. NoMAD survey scores showed modest improvement over time, with collective action having the lowest scores. CONCLUSIONS: NPT was a useful framework for understanding the implementation of palliative care practices within hemodialysis centers. We found a nonlinear relationship among the mechanisms which is reflected in our model of implementation of palliative care practices through a learning collaborative. These findings suggest that the implementation of complex practices such as palliative care may be more successful through iterative learning and practice opportunities as the mechanisms for change are layered and mutually reinforcing. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04125537 . Registered 14 October 2019 - Retrospectively registered.

Implementation and Effectiveness of a Learning Collaborative to Improve Palliative Care for Seriously Ill Hemodialysis Patients.

BACKGROUND AND OBJECTIVES: Limited implementation of palliative care practices in hemodialysis may contribute to end-of-life care that is intensive and not patient centered. We determined whether a learning collaborative for hemodialysis center providers improved delivery of palliative care best practices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Ten US hemodialysis centers participated in a pre-post study targeting seriously ill patients between April 2019 and September 2020. Three practices were prioritized: screening for serious illness, goals of care discussions, and use of a palliative dialysis care pathway. The collaborative educational bundle consisted of learning sessions, communication skills training, and implementation support. The primary outcome was change in the probability of complete advance care planning documentation among seriously ill patients. Health care utilization was a secondary outcome, and implementation outcomes of acceptability, adoption, feasibility, and penetration were assessed using mixed methods. RESULTS: One center dropped out due to the coronavirus disease 2019 pandemic. Among the remaining nine centers, 20% (273 of 1395) of patients were identified as seriously ill preimplementation, and 16% (203 of 1254) were identified as seriously ill postimplementation. From the preimplementation to postimplementation period, the adjusted probability of complete advance care planning documentation among seriously ill patients increased by 34.5 percentage points (95% confidence interval, 4.4 to 68.5). There was no difference in mortality or in utilization of palliative hemodialysis, hospice referral, or hemodialysis discontinuation. Screening for serious illness was widely adopted, and goals of care discussions were adopted with incomplete integration. There was limited adoption of a palliative dialysis care pathway. CONCLUSIONS: A learning collaborative for hemodialysis centers spanning the coronavirus disease 2019 pandemic was associated with adoption of serious illness screening and goals of care discussions as well as improved documentation of advance care planning for seriously ill patients. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Pathways Project: Kidney Supportive Care, NCT04125537.

Barriers and Facilitators to Active Medical Management without Dialysis.

Multiple studies document there are patients for whom hemodialysis can be predicted not to offer a survival advantage. The medical evidence also includes reports of strong, active medical management without dialysis programs in Australia, Canada, and the United Kingdom, yet the nephrology community in the United States has yet to provide to patients with end stage kidney disease an active medical management without dialysis option available throughout the country. This article reviews barriers and facilitators to starting such a program and offers recommendations for the components that have enabled international programs to be successful.

The Role of Kidney Supportive Care and Active Medical Management Without Dialysis in Supporting Well-Being in Kidney Care.

People living with kidney failure often experience a higher symptom burden (including anxiety and depression) and lower quality of life than patients with other serious chronic diseases. The end of life for these patients is characterized by high intensity of treatment (such as intensive care unit stays) and lack of support for family. Kidney supportive care, which emphasizes quality of life, person-centered care, and holistic care for the person and their family, is an approach that improves well-being by aligning care with the patient's preferences and goals. Kidney supportive care encompasses identifying seriously ill patients, eliciting patient values and goals through shared decision making and advance care planning, assessing and managing symptoms, communicating prognosis, offering active medical management without dialysis, and planning and managing care transitions, especially at the end of life. Models, strategies, and tools for incorporating kidney supportive care and active medical management without dialysis into existing workflows are available. However, barriers to implementation in the United States include clinician knowledge gaps, current workflows, and financial incentives, which make it difficult to break from the de facto default practice of starting dialysis for patients with kidney failure regardless of age, frailty, or debilitating condition. Policy changes are needed to fully implement kidney supportive care in the United States.

Pathways Project: Development of a Multimodal Innovation To Improve Kidney Supportive Care in Dialysis Centers.

Current care models for older patients with kidney failure in the United States do not incorporate supportive care approaches. The absence of supportive care contributes to poor symptom management and unwanted forms of care at the end of life. Using an Institute for Healthcare Improvement Collaborative Model for Achieving Breakthrough Improvement, we conducted a focused literature review, interviewed implementation experts, and convened a technical expert panel to distill existing evidence into an evidence-based supportive care change package. The change package consists of 14 best-practice recommendations for the care of patients seriously ill with kidney failure, emphasizing three key practices: systematic identification of patients who are seriously ill, goals-of-care conversations with identified patients, and care options to respond to patient wishes. Implementation will be supported through a collaborative consisting of three intensive learning sessions, monthly learning and collaboration calls, site data feedback, and quality-improvement technical assistance. To evaluate the change package's implementation and effectiveness, we designed a mixed-methods hybrid study involving the following: (1) effectiveness evaluation (including patient outcomes and staff perception of the effectiveness of the implementation of the change package); (2) quality-improvement monitoring via monthly tracking of a suite of quality-improvement indicators tied to the change package; and (3) implementation evaluation conducted by the external evaluator using mixed methods to assess implementation of the collaborative processes. Ten dialysis centers across the country, treating approximately 1550 patients, will participate. This article describes the process informing the intervention design, components of the intervention, evaluation design and measurements, and preliminary feasibility assessments. Clinical Trial registry name and registration number: Pathways Project: Kidney Supportive Care, NCT04125537.

Use of a State Registry to Compare Practices of Physicians and Nurse Practitioners in Completing Physician Orders for Life-Sustaining Treatment Forms.

Background: Understanding the role of nonphysicians in Physician Orders for Life-Sustaining Treatment (POLST) completion is limited. Objectives: To examine the role that nurse practitioners (NPs) play in POLST completion and differences between NPs and physicians in POLST orders. Design: Retrospective observational study. Setting/Subjects: A total of 3829 POLST forms submitted to the West Virginia (WV) e-Directive Registry between July 1, 2018 and June 30, 2019, which was completed by 98 NPs and 511 physicians. Measurements: POLST forms completed and orders in POLST Section A and Section B by all physicians and NPs according to practice (primary care, palliative care, hospital, and nursing home) and by palliative care physicians and NPs only. Results: NPs completed almost twice as many forms on average as physicians (9.54 ± 20.82 vs. 5.66 ± 17.18, p = 0.0064). NPs constituted 16.10% (98/609) of the clinicians writing POLST forms but completed 24.40% (935/3829) of the forms (p < 0.001). Compared with physicians' orders, a greater percentage of NP's orders was for do-not-resuscitate in Section A (87.20% vs. 72.60%, p < 0.001) and comfort measures in Section B (42.90% vs. 33.10%, p < 0.001). There was a greater percentage of NPs in palliative care practice than physicians (23.50% vs. 6.07%, p < 0.001), and palliative care NPs completed 64.20% (600/935) of the forms submitted by NPs compared with palliative care physicians who completed 17.90% (517/2894) of the forms submitted by physicians (p < 0.001). Conclusions: In WV, physician and NP POLST completion differs based on practice. NPs completed significantly more POLST forms on average and more often ordered comfort measures. NPs can play a significant role in POLST completion.

Recommendations for Public Policy Changes to Improve Supportive Care for Seriously Ill Patients With Kidney Disease.

National and international nephrology organizations have identified substantial unmet supportive care needs of patients with kidney disease and issued recommendations. In the United States, the most recent comprehensive effort to change kidney care, the Advancing American Kidney Health Initiative, does not explicitly address supportive care needs, although it attempts to implement more patient-centered care. This Perspective from the leaders of the Coalition for Supportive Care of Kidney Patients advocates for urgent policy changes to improve patient-centered care and the quality of life of seriously ill patients with kidney disease. It argues for the provision of supportive care by an interdisciplinary team led by nephrology clinicians to improve shared decision-making, advance care planning, pain and symptom management, the explicit offering of active medical management without dialysis as an option for patients who may not benefit from dialysis, and the removal by the Centers for Medicare & Medicaid Services and all other payors of financial and regulatory disincentives to quality supportive care, including hospice, for patients with or approaching kidney failure. It also emphasizes that all educational and accreditation programs for nephrology clinicians include kidney supportive care and its essential role in the care of patients with kidney disease.

To What Extent Do Physician Orders for Life-Sustaining Treatment (POLST) Reflect Patients' Preferences for Care at the End of Life?

OBJECTIVE: To assess whether medical orders within Physician Orders for Life-Sustaining Treatment (POLST) forms reflect patients' preferences for care at the end of life. DESIGN: This cross-sectional study assessed the agreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation performed by an independent researcher during a single episode of hospitalization. SETTING AND PARTICIPANTS: Inpatients at a single public university hospital, aged 21 years or older, and for whom one of their attending physicians provided a negative answer to the following question: "Would I be surprised if this patient died in the next year?" Data collection occurred between October 2016 and September 2017. MEASURES: Agreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation was measured by kappa statistics. RESULTS: Sixty-two patients were interviewed. Patients' median (interquartile range) age was 62 (56-70) years, and 21 patients (34%) were women. Overall, in 7 (11%) cases, disagreement in at least 1 medical order for life-sustaining treatment was found between POLST forms and the content of the independent advance care planning conversation. The kappa statistic for cardiopulmonary resuscitation was 0.92 [95% confidence interval (CI): 0.82-1.00]; for level of medical intervention, 0.90 (95% CI: 0.81-0.99); and for artificially administered nutrition, 0.87 (95% CI: 0.75-0.98). CONCLUSIONS AND IMPLICATIONS: The high level of agreement between medical orders in POLST forms and the documentation in an independent advance care planning conversation offers further support for the POLST paradigm. In addition, the finding that the agreement was not 100% underscores the need to confirm frequently that POLST medical orders accurately reflect patients' current values and preferences of care.

How COVID-19 Changed Advance Care Planning: Insights From the West Virginia Center for End-of-Life Care.

CONTEXT: Coronavirus disease 2019 (COVID-19) led to increased attention nationally on advance care planning. OBJECTIVES: To describe the impact COVID-19 had on advance care planning based on changes in the calls to the West Virginia Center for End-of-Life Care (center) and in the volume and types of documents requested from and submitted to the center and its e-Directive Registry (registry). METHODS: A retrospective and observational analysis between January 1, 2020 and June 30, 2020 of calls to the center; advance directives downloaded from the center's Web site as well as mailed to the public and medical orders mailed to health care professionals on request to the center; and advance directives and medical orders submitted to the registry. RESULTS: The nature of calls changed to COVID-19-related topics, including confirmation of forms on the registry, urgent desire to initiate advance care planning, temporary rescindment of treatment-limiting forms, and questions on how to honor patients' wishes in advance directives and medical orders in light of their COVID-19 status. Also in the first six months of 2020, the center distributed more advance directives than it had during the same months in the last five years and more medical orders than it had in the preceding four years when there were no revisions to the medical order forms required by changes to the state law. CONCLUSION: COVID-19 resulted in a new sense of urgency regarding advance care planning by West Virginians with increased attention to document their wishes and ensure that they were in the registry.

Evaluation of a Video Decision Aid to Reduce Decisional Conflict in Physician Orders for Life-Sustaining Treatment (POLST) Decision-Making.

BACKGROUND/OBJECTIVES: Physician Orders for Life-Sustaining Treatment (POLST) is recommended as a preferred practice for advance care planning with seriously ill patients. Decision aids can assist patients in advance care planning, but there are limited studies on their use for POLST decisions. We hypothesized that after viewing a POLST video, decision aid participants would demonstrate increased knowledge and satisfaction and decreased decisional conflict. DESIGN: Pre-and postintervention with no control group. SETTING/PARTICIPANTS: Fifty community-dwelling adults aged 65 and older asked to complete a POLST based on a hypothetical condition. INTERVENTIONS: Video decision aid for Sections A and B of the POLST form. MEASUREMENTS: Pre- and postintervention participant knowledge, decisional satisfaction, decisional conflict, and acceptability of video decision aid. RESULTS: Use of the video decision aid increased knowledge scores from 11.24 ± 2.77 to 14.32 ± 2.89, P < .001, improved decisional satisfaction 10.14 ± 3.73 to 8.70 ± 3.00, P = .001, and decreased decisional conflict 12 ± 9.42 to 8.15 ± 9.13, P < .001. All participants reported that they were comfortable using the video decision aid, that they would recommend it to others, and that it clarified POLST decisions. CONCLUSIONS: Participants endorsed the use of a POLST video decision aid, which increased their knowledge of POLST form options and satisfaction with their decisions, and decreased their decisional conflict in POLST completion. This pilot study provides preliminary support for the use of video decision aids for POLST decision-making. Future research should evaluate a decision aid for the entire POLST form and identify patient preferences for implementing POLST decision aids into clinical practice.

Renal Replacement Therapy in Patients With Stage IV Cancer Admitted to the Intensive Care Unit With Acute Kidney Injury at a Comprehensive Cancer Center Was Not Associated With Survival.

INTRODUCTION: In patients with advanced cancer, prolongation of life with treatment often incurs substantial emotional and financial expense. Among hospitalized patients with cancer since acute kidney injury (AKI) is known to be associated with much higher odds for hospital mortality, we investigated whether renal replacement therapy (RRT) use in the intensive care unit (ICU) was a significant independent predictor of worse outcomes. METHODS: We retrospectively reviewed patients admitted in 2005 to 2014 who were diagnosed with stage IV solid tumors, had AKI, and a nephrology consult. The main outcomes were survival times from the landmark time points, inpatient mortality, and longer term survival after hospital discharge. Logistic regression and Cox proportional regression were used to compare inpatient mortality and longer term survival between RRT and non-RRT groups. Propensity score-matched landmark survival analyses were performed with 2 landmark time points chosen at day 2 and at day 7 from ICU admission. RESULTS: Of the 465 patients with stage IV cancer admitted to the ICU with AKI, 176 needed RRT. In the multivariate logistic regression model after adjusting for baseline serum albumin and baseline maximum Sequential Organ Failure Assessment (SOFA), the patients who received RRT were not significantly different from non-RRT patients in inpatient mortality (odds ratio: 1.004 [95% confidence interval: 0.598-1.684], P = .9892). In total, 189 patients were evaluated for the impact of RRT on long-term survival and concluded that RRT was not significantly associated with long-term survival after discharge for patients who discharged alive. Landmark analyses at day 2 and day 7 confirmed the same findings. CONCLUSIONS: Our study found that receiving RRT in the ICU was not significantly associated with inpatient mortality, survival times from the landmark time points, and long-term survival after discharge for patients with stage IV cancer with AKI.

Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial.

BACKGROUND: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. METHODS: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients' preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. DISCUSSION: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. TRIAL REGISTRATION: ClinicalTrials.gov NCT04153890, Registered on 4 November 2019.

Evaluation of the Interrater Reliability of End-of-Life Medical Orders in the Physician Orders for Life-Sustaining Treatment Form.

Importance: Despite its spread in much of the United States and increased international interest, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm still lacks supporting evidence. The interrater reliability of the POLST form to translate patients' values and preferences into medical orders for care at the end of life remains to be studied. Objective: To assess the interrater reliability of the medical orders documented in POLST forms. Design, Setting, and Participants: This cross-sectional study was conducted in a public university hospital in southeastern Brazil. Two independent researchers interviewed the same patients or decision-making surrogates (n = 64) during a single episode of hospitalization within a time frame of 1 to 7 days. Eligible participants were hospitalized adults aged 21 years or older who were expected to remain hospitalized for at least 4 days and whose attending physician responded no to the question, Would I be surprised if this patient died in the next year? Data collection occurred between November 1, 2015, and September 20, 2016, and first data analyses were performed on October 3, 2016. Main Outcomes and Measures: Interrater reliability as measured by κ statistics. Results: Of the 64 participants interviewed in the study, 53 (83%) were patients and 11 (17%) were surrogates. Patients' mean (SD) age was 64 (14) years, and 35 patients (55%) and 8 surrogates (73%) were women. Overall, in 5 cases (8%), disagreement in at least 1 medical order for life-sustaining treatment was found in the POLST form, changing from the first interview to the second interview. The κ statistic for cardiopulmonary resuscitation was 0.92 (95% CI, 0.80-1.00); for level of medical intervention, 0.89 (95% CI, 0.76-1.00); and for artificially administered nutrition, 0.92 (95% CI, 0.83-1.00). Conclusions and Relevance: The high interrater reliability of the medical orders in POLST forms appears to offer further support for this advance care planning paradigm; in addition, the finding that this interrater reliability was not 100% underscores the need to ensure that patients or their surrogates have decision-making capacity and to confirm that the content of POLST forms accurately reflects patients' current treatment preferences.

Derivation and validation of a prognostic model to predict mortality in patients with advanced chronic kidney disease.

BACKGROUND: Guiding patients with advanced chronic kidney disease (CKD) through advance care planning about future treatment obliges an assessment of prognosis. A patient-specific integrated model to predict mortality could inform shared decision-making for patients with CKD. METHODS: Patients with Stages 4 and 5 CKD from Massachusetts (749) and West Virginia (437) were prospectively evaluated for clinical parameters, functional status [Karnofsky Performance Score (KPS)] and their provider's response to the Surprise Question (SQ). A predictive model for 12-month mortality was derived with the Massachusetts cohort and then validated externally on the West Virginia cohort. Logistic regression was used to create the model, and the c-statistic and Hosmer-Lemeshow statistic were used to assess model discrimination and calibration, respectively. RESULTS: In the derivation cohort, the SQ, KPS and age were most predictive of 12-month mortality with odds ratios (ORs) [95% confidence interval (CI)] of 3.29 (1.87-5.78) for a 'No' response to the SQ, 2.09 (95% CI 1.19-3.66) for fair KPS and 1.41 (95% CI 1.15-1.74) per 10-year increase in age. The c-statistic for the 12-month mortality model for the derivation cohort was 0.80 (95% CI 0.75-0.84) and for the validation cohort was 0.74 (95% CI 0.66-0.83). CONCLUSIONS: Our integrated prognostic model for 12-month mortality in patients with advanced CKD had good discrimination and calibration. This model provides prognostic information to aid nephrologists in identifying and counseling advanced CKD patients with poor prognosis who are facing the decision to initiate dialysis or pursue medical management without dialysis.