"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.

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.

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.

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.

Nurse practitioners' completion of Physician Orders for Scope of Treatment forms in West Virginia: A secondary analysis of 12 months of data from the state registry.

BACKGROUND AND PURPOSE: Advanced care planning documents, such as the Physician Orders for Life-Sustaining Treatment (POLST), require authorized medical provider signatures; only recently have nurse practitioners (NPs) been authorized to sign these forms. Recent legislation in West Virginia (WV) granting NPs signatory authority on POLST forms and the creation of a statewide registry provides an opportunity to examine the completion rates. The aim of this study was to investigate how recent legislation allowing NPs signatory authority for POLST forms has affected POLST completion. METHODS: Data were obtained from the WV statewide registry of POST forms completed by all authorized personnel. Forms submitted by NPs were compared with those completed by physicians on patient demographics, setting, resuscitation status, level of medical intervention, and errors. Variables were cross-tabulated by provider type to determine whether and how NP POST completion differed from that of physicians. CONCLUSIONS: Forty-five NPs submitted 430 POST forms to the WV registry, which constituted 14.4% of the POST forms received. Ten NPs in community and hospital specialist palliative care teams submitted more than two thirds of these 430 forms. Nurse practitioner-completed POST forms were more likely to order do not resuscitate and comfort measures than POST forms ordered by physicians (both p < .001) and to be without errors (p < .001). IMPLICATIONS FOR PRACTICE: Nurse practitioners practicing in specialist palliative care roles in communities and hospitals have embraced the use of POST and followed through on complete and accurate completion of the forms. With this signatory authority, primary and specialist NPs have the potential to improve end-of-life care.

Palliative Care Disincentives in CKD: Changing Policy to Improve CKD Care.

The dominant health delivery model for advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States, which focuses on provision of dialysis, is ill-equipped to address many of the needs of seriously ill patients. Although palliative care may address some of these gaps in care, its integration into advanced CKD care has been suboptimal due to several health system barriers. These barriers include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives. This article reviews policies that affect the delivery of palliative care for this population, discusses reforms that could address disincentives to palliative care, identifies quality measurement issues for palliative care for individuals with advanced CKD and ESRD, and considers potential pitfalls in the implementation of new models of integrated palliative care. Reforming health care delivery in ways that remove policy disincentives to palliative care for patients with advanced CKD and ESRD will fill a critical gap in care.

Cross-Cultural Adaptation of the Physician Orders for Life-Sustaining Treatment Form to Brazil.

BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) paradigm is considered one of the most important strategies to respect patients' values at the end of life in the United States. The cross-cultural adaptation of POLST entailed several methodological considerations, which may be informative for international researchers who may also consider bringing POLST to their countries as a means to promote care at the end of life that is consistent with patients' preferences. OBJECTIVE: To report the methods and outcome of the cross-cultural adaptation of the POLST form to Brazil. DESIGN: Cross-cultural adaptation study. SETTING/SUBJECTS: Twenty physicians and 10 patients at a university hospital participated in the pilot tests. RESULTS: The cross-cultural adaptation process included choosing which existing POLST form(s) to use as a source, deciding the intended reading level, which healthcare professionals should be allowed to sign the form, and consultation with attorneys, bioethicists, and members of the National POLST Paradigm Task Force. Pilot tests occurred in two stages using different approaches. First, 20 physicians were trained about POLST and asked for any unclear aspects related to the form. Second, trained investigators completed POLST forms after engaging in advance care planning conversations with 10 hospitalized patients or patients' surrogates. CONCLUSIONS: This report provides a basis for future cross-cultural adaptations of POLST to other countries. The authors hope such new adaptations will broaden the possibilities of research using POLST and also may promote wider provision of care at the end of life that is consistent with patients' preferences.

Association of Physician Orders for Life-Sustaining Treatment Form Use With End-of-Life Care Quality Metrics in Patients With Cancer.

PURPOSE: Many patients with advanced cancer receive aggressive treatment near the end of life. The Physician Orders for Life-Sustaining Treatment (POLST) form is an innovation that converts patient preferences into medical orders. We compared the end-of-life care of patients with advanced cancer who had completed POLST forms with that of patients who had advance directives (ADs). METHODS: We studied 2,159 West Virginians with ADs and/or POLST forms in the West Virginia e-Directive Registry who died as a result of cancer between January 2011 and February 2016. Data from the Vital Registration Office (date, site, and cause of death) were merged with those from the registry (form type, completion date, and hospice admission). The primary outcome variables were out-of-hospital death (OHD) and hospice admission. RESULTS: The percentage of patients with OHD was 85.7% for patients with POLST forms compared with 72.0% for those with ADs ( P < .001). The odds of OHD for patients with POLST forms were 2.33 times those of patients with ADs. The percentage of patients admitted to hospice was 49.9% for those with POLST forms compared with 27.0% for those with ADs ( P < .001). The odds of being admitted to hospice for patients with POLST forms were 2.69 times those of patients with ADs. CONCLUSION: Advance care planning with completion of POLST forms compared with ADs in patients with advanced cancer was associated with two quality end-of-life care metrics: OHD and hospice admission. Our study suggests that goals-of-care discussions including POLST form completion may improve end-of-life care for patients with advanced cancer.

Research Priorities for Palliative Care for Older Adults with Advanced Chronic Kidney Disease.

Older adults with advanced chronic kidney disease (CKD) often have multiple comorbid conditions, a high symptom burden, and limited life expectancy. There is mounting concern that the intensive patterns of care that many of these patients receive at the end of life are discordant with their values and preferences. The nephrology community has recognized that there are significant unmet palliative care needs in this population. In this article, we identify three broad areas of knowledge deficit where more evidence is needed to support the "best care possible" for this population: (1) what matters most to older adults with advanced CKD and their caregivers near the end of life; (2) how the nephrology community can best support older adults with advanced CKD to navigate complex treatment decisions throughout their illness; and (3) how the healthcare system should be reconfigured to promote patient- and family-centered care for older adults with advanced CKD. Research priorities include identifying opportunities for improving the end-of-life experience of older adults with CKD and their caregivers; developing and testing communication interventions before and during dialysis to ensure that treatment decisions reflect patients' preferences; and assessing the effectiveness of palliative care in improving quality of life for patients and caregivers, satisfaction with care, and aligning treatment decisions with patient goals and preferences.

Integrating Supportive Care Principles Into Dialysis Decision Making: A Primer for Palliative Medicine Providers.

Despite advances in predialysis care and dialysis technology, patients with advanced chronic kidney disease and end-stage renal disease continue to experience multiple comorbidities, a high symptom burden, a shortened life expectancy, and substantial physical, emotional, and spiritual suffering. Patients with acute kidney injury and end-stage renal disease, especially if they are older, often undergo prolonged hospitalizations, greater use of intensive medical treatment, and limited survival. Unfortunately, most nephrologists are not trained to conduct shared decision-making conversations to elicit patients' values, preferences, and goals for treatment and address their patients' multifactorial suffering. These patients would benefit from the integration of supportive care principles into their care. This article addresses how supportive care specialists can collaborate with nephrology clinicians to provide patient-centered supportive care and identifies resources to assist them in this endeavor.

Unmet Supportive Care Needs in U.S. Dialysis Centers and Lack of Knowledge of Available Resources to Address Them.

CONTEXT: Because of high symptom burden, numerous comorbidities, and shortened life expectancy, dialysis patients are increasingly recognized as appropriate candidates for early and continuous supportive care. OBJECTIVES: The objectives of this study were to describe dialysis professionals' perceptions of the adequacy of supportive care in dialysis centers, barriers to providing it, suggestions for improving it, and familiarity with the existing evidence-based resources for supportive care of dialysis patients. METHODS: The Coalition for Supportive Care of Kidney Patients conducted an online survey of dialysis professionals and administrators solicited through the 18 End-Stage Renal Disease Networks and the Renal Physicians Association. RESULTS: Only 4.5% of 487 respondents believed their dialysis centers were presently providing high-quality supportive care. They identified bereavement support, spiritual support, and end-of-life care discussions as the top three unmet needs. They reported that lack of a predictive algorithm for prognosis was the top barrier, and "guidelines to help with decision-making in seriously ill patients" was the top priority to improve supportive care. A majority of respondents were unaware that an evidence-based validated prognostic model and a clinical practice guideline to help with decision-making were already available. CONCLUSION: Dialysis professionals report significant unmet supportive care needs and barriers in their centers with only a small minority rating themselves as competently providing supportive care. There is an urgent need for education of dialysis professionals about available supportive care resources to provide quality supportive care to dialysis patients.

Palliative Care Training during Fellowship: A National Survey of U.S. Hematology and Oncology Fellows.

BACKGROUND: Despite requirements for palliative care training during fellowship, there is a paucity of recent data regarding the attitudes, knowledge, and skills of hematology/ oncology fellows in palliative care. OBJECTIVE: Our aim was to assess fellows' attitudes toward and quality of training in palliative care during fellowship and perceived preparedness to care for patients at the end of life (EOL). METHODS: In May 2013 a cross-sectional survey of hematology/oncology fellows was conducted. RESULTS: Fellows from 93 of 138 fellowship programs responded (67.4%). Of the 347 fellows e-mailed, 176 participated. Nearly all fellows (99%) indicated that physicians have a responsibility to help patients at EOL. Fellows felt their overall training in fellowship was superior to training in EOL care (4.24±0.78 versus 3.53±0.99 on a 5-5 scale where 1=poor and 5=excellent, p<0.0001). Fellows who had a rotation in palliative care during fellowship (44.9%) reported better teaching on managing a patient at EOL than those who did not (3.91±1.0 versus 3.21±0.87, p<0.0001). Fellows reporting better teaching in EOL care felt better prepared to care for patients at EOL (r=0.52, p<0.0001). More than 25% reported not being explicitly taught how to assess prognosis, when to refer a patient to hospice, or how to conduct a family meeting to discuss treatment options. CONCLUSION: Many recent oncology fellows are still inadequately prepared to provide palliative care to their patients. There is significant room for improvement with regards to the quality of palliative care training in U.S. hematology/oncology fellowship programs.

A palliative approach to dialysis care: a patient-centered transition to the end of life.

As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients' informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach.

Dying on dialysis: the case for a dignified withdrawal.

Acceleration of comorbid illness in patients undergoing long-term maintenance hemodialysis may be manifested by clinical deterioration that is subtle and not immediately life-threatening. Nonetheless, it is emotionally debilitating for patients and families in addition to being medically and ethically challenging for treating nephrologists. A marked decline in clinical status warrants review of the balance of benefits to burdens dialysis is providing to a given patient and should trigger conversation about the option of withdrawal using an individualized patient-centered, rather than disease-oriented, approach. This paper presents a rationale for and an objective approach to initiating and managing dialysis withdrawal for patients who wish to withdraw because of unsatisfactory quality of life and those (many with significant cognitive impairment) for whom withdrawal is deemed appropriate because the burdens of continuing treatment substantially outweigh the benefits.

Improving end-of-life care for ESRD patients: an initiative for professionals.

The Coalition for Supportive Care of Kidney Patients convened subject matter experts (SMEs) to assess the current state of palliative care for pre-dialysis (chronic kidney disease) and end-stage renal disease patients (stages 3-5). The SMEs noted that in the final month of life, dialysis patients have the higher percentage of hospitalizations, longer length of stay, greater intensive care admissions, and higher number of deaths in hospitals than cancer or heart failure patients, but use hospice only half as much as these two groups. The group identified a strategic approach and framework for achieving specific aims to improve palliative care education of health care providers, raise awareness of supportive care resources, define palliative care skills for nephrologists, and continue the implementation of shared decision-making for individualized patient-centered care.

To dialyze or not: the patient with metastatic cancer and AKI in the intensive care unit.

AKI severe enough to necessitate renal replacement therapy occurs in approximately 5% of patients admitted to the intensive care unit (ICU) and is associated with in-hospital mortality in excess of 50%. Complicating factors, such as cancer, can increase in-hospital mortality to 85%. Intensivists often expect that consulted nephrologists will provide dialysis when asked to do so, without considering whether it is likely to benefit the patient and therefore is medically and ethically appropriate. In this Attending Rounds, on the basis of the evidence and recommendations in Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, a clinical practice guideline, a case of anuric AKI in the ICU is presented and analyzed. Woven into the discussion are insights from the clinical and ethics literature on this topic, along with the experience of the author. This Attending Rounds presents an approach to deciding when it is not appropriate to dialyze patients with AKI in the ICU.