Concurrent Hospice and Dialysis Care: Considerations for Implementation.

IMPORTANCE: Hospice positively impacts care at the end of life for patients and their families. However, compared to the general Medicare population, patients on dialysis are half as likely to receive hospice. Concurrent hospice and dialysis care offers an opportunity to improve care for people living with end-stage kidney disease (ESKD). OBJECTIVE: We sought to (1) develop a conceptual model of the Program and (2) identify key components, resources, and considerations for further implementation. DESIGN: We conducted a template analysis of qualitative interviews and convened a community advisory panel (CAP) to get feedback on current concurrent care design and considerations for dissemination and implementation. PARTICIPANTS: Thirty-nine patients with late-stage chronic kidney disease (CKD), family caregivers, bereaved family caregivers, hospice clinicians, nephrology clinicians, administrators, and policy experts participated in interviews. A purposive subset of 19 interviewees composed the CAP. MAIN MEASURES: Qualitative feedback on concurrent care design refinements, implementation, and resources. KEY RESULTS: Participants identified four themes that define an effective model of concurrent hospice and dialysis: it requires (1) timely goals-of-care conversations and (2) an interdisciplinary approach; (3) clear guidelines ensure smooth transitions for patients and families; and (4) hospice payment policy must support concurrent care. CAP participants provided feedback on the phases of an effective model of concurrent hospice and dialysis, and resources, including written and interactive educational materials, communication tools, workflow processes, and order sets. CONCLUSIONS: We developed a conceptual model for concurrent hospice and dialysis care and a corresponding resource list. In addition to policy changes, clinical implementation and educational resources can facilitate scalable and equitable dissemination of concurrent care. Concurrent hospice and dialysis care must be systematically evaluated via a hybrid implementation-effectiveness trial that includes the resources outlined herein, based on our conceptual model of concurrent care delivery.

"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.

Advance Care Planning Coaching in CKD Clinics: A Pragmatic Randomized Clinical Trial.

RATIONALE & OBJECTIVE: Although guidelines recommend more and earlier advance care planning (ACP) for patients with chronic kidney disease (CKD), scant evidence exists to guide incorporation of ACP into clinical practice for patients with stages of CKD prior to kidney failure. Involving nephrology team members in addition to primary care providers in this important patient-centered process may increase its accessibility. Our study examined the effect of coaching implemented in CKD clinics on patient engagement with ACP. STUDY DESIGN: Multicenter, pragmatic randomized controlled trial. SETTING & PARTICIPANTS: Three CKD clinics in different states participated: 273 patients consented to participate, 254 were included in analysis. Eligible patients were 55 years or older, had stage 3-5 CKD, and were English speaking. INTERVENTION: Nurses or social workers with experience in nephrology or palliative care delivered individualized in-person ACP sessions. The enhanced control group was given Make Your Wishes About You (MY WAY) education materials and was verbally encouraged to bring their completed advance directives to the clinic. OUTCOME: Primary outcome measures were scores on a 45-point ACP engagement scale at 14 weeks and a documented advance directive or portable medical order at 16 weeks after enrollment. RESULTS: Among 254 participants analyzed, 46.5% were 65-74 years of age, and 54% had CKD stage 3. The coached patients scored 1.9 points higher at 14 weeks on the ACP engagement scale (ß = 1.87 [95% CI, 0.13-3.64]) adjusted for baseline score and site. Overall, 32.8% of intervention patients (41 of 125) had an advance directive compared with 17.8% (23 of 129) of patients in the control group. In a site-adjusted multivariable model, coached patients were 79% more likely to have a documented advance directive or portable medical order (adjusted risk ratio, 1.79 [95% CI, 1.18-2.72]), with the impact principally evident at only 1 study site. LIMITATIONS: Small number of study sites and possible unrepresentativeness of the broader CKD population by study participants. CONCLUSIONS: Individualized coaching may be effective in enhancing ACP, but its impact may be influenced by the health care environment where it is delivered. FUNDING: The Patrick and Catherine Weldon Donaghue Medical Research Foundation, via the Greater Value Portfolio. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT03506087.

Implementing Advance Care Planning for dialysis patients: HIGHway project.

BACKGROUND: Patients undergoing hemodialysis have a high mortality rate and yet underutilize palliative care and hospice resources. The Shared Decision Making-Renal Supportive Care (SDM-RSC) intervention focused on goals of care conversations between patients and family members with the nephrologist and social worker. The intervention targeted deficiencies in communication, estimating prognosis, and transition planning for seriously ill dialysis patients. The intervention showed capacity to increase substantially completion of advance care directives. The HIGHway Project, adapted from the previous SDM-RSC, scale up training social workers or nurses in dialysis center in advance care planning (ACP), and then support them for a subsequent 9-month action period, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. METHODS: We will train between 50-60 dialysis teams, led by social workers or nurses, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. This implementation project uses the Knowledge to Action (KTA) Framework within the Consolidated Framework for Implementation Research (CFIR) to increase adoption and sustainability in the participating dialysis centers. This includes a curriculum about how to hold ACP conversation and coaching with monthly teleconferences through case discussion and mentoring. An application software will guide on the process and provide resources for holding ACP conversations. Our project will focus on implementation outcomes. Success will be determined by adoption and effective use of the ACP approach. Patient and provider outcomes will be measured by the number of ACP conversations held and documented; the quality and fidelity of ACP conversations to the HIGHway process as taught during education sessions; impact on knowledge and skills; content, relevance, and significance of ACP intervention for patients, and Supportive Kidney Care (SKC) App usage. Currently HIGHway is in the recruitment stage. DISCUSSION: Effective changes to advance care planning processes in dialysis centers can lead to institutional policy and protocol changes, providing a model for patients receiving dialysis treatment in the US. The result will be a widespread improvement in advance care planning, thereby remedying one of the current barriers to patient-centered, goal-concordant care for dialysis patients. TRIAL REGISTRATION: The George Washington University Protocol Record NCR213481, Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons with Kidney Disease on Dialysis, is registered in ClinicalTrials.gov Identifier: NCT05324878 on April 11th, 2022.

Challenges in communication, prognostication and dialysis decision-making in the COVID-19 pandemic: implications for interdisciplinary care during crisis settings.

PURPOSE OF REVIEW: Using case vignettes, we highlight challenges in communication, prognostication, and medical decision-making that have been exacerbated by the coronavirus disease-19 (COVID-19) pandemic for patients with kidney disease. We include best practice recommendations to mitigate these issues and conclude with implications for interdisciplinary models of care in crisis settings. RECENT FINDINGS: Certain biomarkers, demographics, and medical comorbidities predict an increased risk for mortality among patients with COVID-19 and kidney disease, but concerns related to physical exposure and conservation of personal protective equipment have exacerbated existing barriers to empathic communication and value clarification for these patients. Variability in patient characteristics and outcomes has made prognostication nuanced and challenging. The pandemic has also highlighted the complexities of dialysis decision-making for older adults at risk for poor outcomes related to COVID-19. SUMMARY: The COVID-19 pandemic underscores the need for nephrologists to be competent in serious illness communication skills that include virtual and remote modalities, to be aware of prognostic tools, and to be willing to engage with interdisciplinary teams of palliative care subspecialists, intensivists, and ethicists to facilitate goal-concordant care during crisis settings.

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.

Make Your Wishes About You (MY WAY): Using Motivational Interviewing to Foster Advance Care Planning for Patients with Chronic Kidney Disease.

Advance care planning for persons with chronic kidney disease is under-utilized despite evidence it can improve care at the end of life. Motivational interviewing and Stages of Change Theory can help healthcare professionals elicit behavior change. This article outlines an approach to advance care planning using motivational interviewing with a healthcare coach to assist patients in expressing their unique values and wishes regarding care at the end of life. This Make Your Wishes About You (MY WAY) approach to advance care planning for patients with chronic kidney disease includes patient education material and a coach training curriculum freely available from the Coalition for Supportive Care of Kidney Patients.

Providing supportive care to patients with kidney disease.

While it may never be "easy" to face these issues with patients, families, and caregivers, CSCKP hopes the best practices and tools outlined in this article, also available at www.kidney-supportivecare.org, will be helpful to renal professionals in providing quality supportive and end-of-life care to their patients. Encouraging and participating in shared decision making with patients and their loved ones can help all involved create an approach to care with which everyone is comfortable. The relationships formed through shared decision making will help keep the lines of communication open, which is essential as needs and prognosis change. This type of health care provider/patient relationship may also encourage patients to share more about their symptoms, as not all patients are forthcoming about their symptoms or pain, and thereby facilitate better assessment and treatment by clinicians. Working with a palliative care specialist may be necessary when symptoms become more challenging to manage and referral to hospice may need to be considered. Helping patients, families, and caregivers understand their options, assisting them in completing advance care plans, and ultimately respecting their wishes are all encompassed within the delivery of patient-centered care.

Advanced Care Planning in Chronic Kidney Disease: Qualitative Impact of the MY WAY Intervention.

CONTEXT: Despite recommendations for shared decision-making and advanced care planning (ACP) for people with chronic kidney disease (CKD), such conversations are infrequent. The MY WAY educational and patient coaching intervention aimed to promote high-quality ACP. OBJECTIVES: This qualitative substudy sought to gain participant feedback on the MY WAY ACP coaching intervention, and how it impacted their wishes, perceptions of kidney care, and factors that helped them reflect on ACP. METHODS: We conducted semi-structured interviews with participants from the intervention arm of the MY WAY study about their prior experience with ACPs in the context of CKD, impressions of the MY WAY intervention, and outcomes of the MY WAY intervention. We conducted a qualitative thematic analysis of transcribed interviews. RESULTS: Among 15 intervention participants, the following major themes emerged: 1) Patients with CKD approach ACP with varied experiences; 2) Patients felt the MY WAY coaching intervention supported ACP by reinforcing values; and 3) Patients found the coaching intervention focused on end of life, but not necessarily on decision making regarding CKD. CONCLUSION: Participants perceived the coaching intervention to have high utility in facilitating ACP, but had a limited impact on CKD-specific decision-making. These findings suggest that the coach plays a crucial role in comfort with ACP conversations and that ACP readiness and engagement may not correlate with treatment preferences or understanding of CKD treatment decisions.

Medicare Hospice Policy Changes and Beneficiaries' Rate of Live Discharge and Length-of-Stay.

CONTEXT: The 2014 Improving Medicare Post-Acute Care Transformation (IMPACT) Act systemized audits of long hospice stays, and the 2016 two-tier payment system decreased daily reimbursement rates after 60 days of enrollment. Both aimed to reduce long stays. OBJECTIVES: Examine how live discharge rates and length of stay changed in relation to the policies. METHODS: We computed monthly hospice-level percent live discharges and length of stay using 2008-2019 Medicare hospice claims. We compared prepolicies trends and postpolicies trends overall, within Alzheimer's disease and related dementias (ADRD) patients, within lung cancer patients, and stratified by hospice ownership (for-profit vs. nonprofit/government-owned). RESULTS: We included 10,539,912 and 10,453,025 episodes of care in the analytical samples for live discharge and length of stay analyses, respectively. Overall percent live discharges declined during the prepolicies period (-0.13 percentage-points per month, 95% CI: -0.14, -0.12), but exhibited no significant change during the postpolicies period. Trends were driven primarily by for-profits, with similar patterns within ADRD and lung cancer patients. Overall, mean length of stay increased over time, with greater rate of increase during the postpolicies period (0.41 days per month, 95% CI: 0.39, 0.42) compared to the prepolicies period (0.12 days per month, 95% CI: 0.10, 0.14). Length-of-stay increased faster among ADRD patients, but changed minimally for lung cancer patients. CONCLUSION: Live discharge rates declined significantly during the prepolicies period, but plateaued after implementation of the policies, driven by changes in for-profits. However, the policies did not reduce length of stay, which increased at faster rates, suggesting that postpolicies excess live discharges were not restricted to long-stay patients.

Evaluation of Federal Policy Changes to the Hospice Benefit and Use of Hospice for Persons With ADRD.

Importance: Hospice is an important end-of-life service for patients with Alzheimer disease and related dementias (ADRD). Objective: To determine whether hospice use among patients with ADRD changed in association with recent policies aimed at reducing hospice misuse and long hospice stays, an outcome that may have disproportionately affected patients with ADRD because of their lengthy end-of-life trajectories. Design Setting and Participants: This observational cross-sectional study used Medicare hospice claims data from Medicare hospice episodes of care beginning between July 2008 and December 2019 among Medicare hospice beneficiaries 65 years or older at time of enrollment. Data analysis was conducted between September 2019 and June 2021. Exposures: The 2014 Improving Medicare Post-Acute Care Transformation (IMPACT) Act, which systematized audits of hospices with a high proportion of long stays, and the 2016 2-tier payment system, which reduced daily reimbursement rates after 60 days. Main Outcomes and Measures: Monthly percentage of (1) new patient enrollees, (2) patient census, and (3) care days provided to patients with an ADRD code. Results: The sample included 11 124 992 unique hospice episodes between 2008 and 2019; mean (SD) patient enrollment age ranged from 82.0 (8.2) years to 82.8 (8.7) years; the percentage of male patients ranged from 40.5% to 42.7%, and the percentage of Black, Hispanic, and White patients ranged from 7.7% to 8.2%, 1.5% to 2.0%, and 86.2% to 88.8%, respectively, across years. The percentage of new enrollees with an ADRD code dropped significantly during the months of IMPACT passage (-1.42 percentage points; 95% CI, -2.13 to -0.71) and implementation (-1.98 percentage points; 95% CI, -2.70 to -1.26) but rose again during the following months. While no significant changes were observed at the time of 2-tier payment implementation (0.15 percentage points; 95% CI, -0.21 to 0.51), the average rate of increase during the subsequent period was slower (0.01 percentage points per month; 95% CI, 0-0.02) than in earlier periods (0.05; 95% CI, 0.04-0.06 during the baseline period). Similar patterns were observed for the percentage of patient census and care days provided to patients with an ADRD code. Conclusions and Relevance: The results of this cross-sectional study of Medicare hospice claims data suggested that recent Medicare policies were associated with immediate and lasting reductions in the share of patients receiving hospice care with an ADRD code compared with expectations from preimplementation trends. Future research should examine mechanisms through which hospices enacted change and consequences for quality of care.

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.

Development of Subspecialty-Specific Reporting Milestones for Hospice and Palliative Medicine Fellowship Training in the U.S.

Continuing the transition to competency-based education, Hospice and Palliative Medicine (HPM) fellowship programs began using context-free reporting milestones (RMs) for internal medicine subspecialties in 2014 but quickly recognized that they did not reflect the nuanced practice of the field. This article describes the development of 20 subspecialty-specific RMs through consensus group process and vetting by HPM educators. A workgroup of content experts used an iterative consensus building process between December 2017 and February 2019 to draft new RMs and create a supplemental guide that outlines the intent of each RM, examples of each developmental trajectory, assessment methods, and resources to guide educators. Program directors, program coordinators, and designated institutional officers were contacted directly to solicit feedback. Most respondents agreed or strongly agreed that each RM represented a realistic progression of knowledge, skills, and behaviors, and that the set of milestones adequately discriminated between meaningful levels of competency. Similarly, respondents felt that the supplemental guide was a useful resource. The result is a set of carefully developed and broadly vetted RMs that represent a progression of development for HPM physicians during one year of clinical fellowship training.

The Growing Demand for Hospice and Palliative Medicine Physicians: Will the Supply Keep Up?

CONTEXT: The need for hospice and palliative care is growing rapidly as the population increases and ages and as both hospice and palliative care become more accepted. Hospice and palliative medicine (HPM) is a relatively new physician specialty, currently training 325 new fellows annually. Given the time needed to increase the supply of specialty-trained physicians, it is important to assess future needs to guide planning for future training capacity. OBJECTIVES: We modeled the need for and supply of specialist HPM physicians through the year 2040 to determine whether training capacity should continue growing. METHODS: To create a benchmark for need, we used a population-based approach to look at the current geographic distribution of the HPM physician supply. To model future supply, we calculated the annual change in current supply by adding newly trained physicians and subtracting physicians leaving the labor force. RESULTS: The current U.S. supply of HPM specialists is 13.35 per 100,000 adults 65 and older. This ratio varies greatly across the country. Using alternate assumptions for future supply and demand, we project that need in 2040 will range from 10,640 to almost 24,000 HPM specialist physicians. Supply will range from 8100 to 19,000. CONCLUSION: Current training capacity is insufficient to keep up with population growth and demand for services. HPM fellowships would need to grow from the current 325 graduates annually to between 500 and 600 per year by 2030 to assure sufficient physician workforce for hospice and palliative care services given current service provision patterns.