Referral and Beyond: Restructuring the Kidney Transplant Process to Support Greater Access in the United States.

Advocates for improved equity in kidney transplant in the US have recently focused efforts on initiatives to increase referral for transplant evaluation. However, because donor kidneys remain scarce, increased referrals are likely to result in an increasing number of patients proceeding through the evaluation process without ultimately receiving a kidney. Unfortunately, the process of referral and evaluation can be highly resource-intensive for patients, families, transplant programs, and payers. Patients and families may incur out-of-pocket expenses and be required to complete testing and treatments that they might not have chosen in the course of routine clinical care. Kidney transplant programs may struggle with insufficient capacity, inefficient workflow, and challenging programmatic finances and payers will need to absorb the increased expenses of upfront pretransplant costs. Increased referral in isolation may risk simply transmitting system stress and resulting disparities to downstream processes in this complex system. We argue that success in efforts to improve access through increased referrals hinges on adaptations to the pretransplant process more broadly. We call for an urgent reevaluation and redesign at multiple levels of the pretransplant system in order to achieve the aim of equitable access to kidney transplantation for all patients with kidney failure.

System-Level Strategies to Improve Home Dialysis: Policy Levers and Quality Initiatives.

Advocacy and policy change are powerful levers to improve quality of care and better support patients on home dialysis. While the kidney community increasingly recognizes the value of home dialysis as an option for patients who prioritize independence and flexibility, only a minority of patients dialyze at home in the United States. Complex system-level factors have restricted further growth in home dialysis modalities, including limited infrastructure, insufficient staff for patient education and training, patient-specific barriers, and suboptimal physician expertise. In this article, we outline trends in home dialysis use, review our evolving understanding of what constitutes high-quality care for the home dialysis population (as well as how this can be measured), and discuss policy and advocacy efforts that continue to shape the care of US patients and compare them with experiences in other countries. We conclude by discussing future directions for quality and advocacy efforts.

Experiences of US Clinicians Contending With Health Care Resource Scarcity During the COVID-19 Pandemic, December 2020 to December 2021.

Importance: The second year of the COVID-19 pandemic saw periods of dire health care resource limitations in the US, sometimes prompting official declarations of crisis, but little is known about how these conditions were experienced by frontline clinicians. Objective: To describe the experiences of US clinicians practicing under conditions of extreme resource limitation during the second year of the pandemic. Design, Setting, and Participants: This qualitative inductive thematic analysis was based on interviews with physicians and nurses providing direct patient care at US health care institutions during the COVID-19 pandemic. Interviews were conducted between December 28, 2020, and December 9, 2021. Exposure: Crisis conditions as reflected by official state declarations and/or media reports. Main Outcomes and Measures: Clinicians' experiences as obtained through interviews. Results: Interviews with 23 clinicians (21 physicians and 2 nurses) who were practicing in California, Idaho, Minnesota, or Texas were included. Of the 23 total participants, 21 responded to a background survey to assess participant demographics; among these individuals, the mean (SD) age was 49 (7.3) years, 12 (57.1%) were men, and 18 (85.7%) self-identified as White. Three themes emerged in qualitative analysis. The first theme describes isolation. Clinicians had a limited view on what was happening outside their immediate practice setting and perceived a disconnect between official messaging about crisis conditions and their own experience. In the absence of overarching system-level support, responsibility for making challenging decisions about how to adapt practices and allocate resources often fell to frontline clinicians. The second theme describes in-the-moment decision-making. Formal crisis declarations did little to guide how resources were allocated in clinical practice. Clinicians adapted practice by drawing on their clinical judgment but described feeling ill equipped to handle some of the operationally and ethically complex situations that fell to them. The third theme describes waning motivation. As the pandemic persisted, the strong sense of mission, duty, and purpose that had fueled extraordinary efforts earlier in the pandemic was eroded by unsatisfying clinical roles, misalignment between clinicians' own values and institutional goals, more distant relationships with patients, and moral distress. Conclusions and Relevance: The findings of this qualitative study suggest that institutional plans to protect frontline clinicians from the responsibility for allocating scarce resources may be unworkable, especially in a state of chronic crisis. Efforts are needed to directly integrate frontline clinicians into institutional emergency responses and support them in ways that reflect the complex and dynamic realities of health care resource limitation.

Beyond Autonomy: Ethics of Decision Making About Treatments for Kidney Failure at the Extremes of Age.

Decisions around initiating and forgoing treatments for kidney failure are complex, and contemporary approaches to medical decision making are designed to uphold patients' own preferences and values when there are multiple clinically reasonable treatment options. When patients do not have cognitive capacity to make their own decisions, these models can be adapted to support the previously expressed preferences of older adults and to promote open futures as autonomous persons for young children. Nonetheless, an autonomy-focused approach to decision making may not align with other overlapping values and needs of these groups. Dialysis profoundly shapes life experience. Values framing decisions about this treatment extend beyond independence and self-determination and vary between life stages. Patients at the extremes of age may place a strong emphasis on dignity, caring, nurturing, and joy. Models of decision making tailored to support an autonomous individual may also discount the role of family as not only surrogate decision makers but stakeholders whose lives and experience are interwoven with a patient's and will be shaped by their treatment decisions. These considerations underline a need to more flexibly incorporate a diversity of ethical frameworks to support medical decisions, especially for the very young and old, when facing complex medical decisions such as initiating or forgoing treatments for kidney failure.

Value Placed on Comfort vs Life Prolongation Among Patients Treated With Maintenance Dialysis.

Importance: Patients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values. Objective: To evaluate the association of patients' health care values with engagement in advance care planning and end-of-life care. Design, Setting, and Participants: Survey study of patients who received maintenance dialysis between 2015 and 2018 at dialysis centers in the greater metropolitan areas of Seattle, Washington, and Nashville, Tennessee, with longitudinal follow-up of decedents. Logistic regression models were used to estimate probabilities. Data analysis was conducted between May and October 2022. Exposures: A survey question about the value that the participant would place on longevity-focused vs comfort-focused care if they were to become seriously ill. Main Outcomes and Measures: Self-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims. Results: Of 933 patients (mean [SD] age, 62.6 [14.0] years; 525 male patients [56.3%]; 254 [27.2%] identified as Black) who responded to the question about values and could be linked to registry data (65.2% response rate [933 of 1431 eligible patients]), 452 (48.4%) indicated that they would value comfort-focused care, 179 (19.2%) that they would value longevity-focused care, and 302 (32.4%) that they were unsure about the intensity of care they would value. Many had not completed an advance directive (estimated probability, 47.5% [95% CI, 42.9%-52.1%] of those who would value comfort-focused care vs 28.1% [95% CI, 24.0%-32.3%] of those who would value longevity-focused care or were unsure; P < .001), had not discussed hospice (estimated probability, 28.6% [95% CI, 24.6%-32.9%] comfort focused vs 18.2% [95% CI, 14.7%-21.7%] longevity focused or unsure; P < .001), or had not discussed stopping dialysis (estimated probability, 33.3% [95% CI, 29.0%-37.7%] comfort focused vs 21.9% [95% CI, 18.2%-25.8%] longevity focused or unsure; P < .001). Most respondents wanted to receive cardiopulmonary resuscitation (estimated probability, 78.0% [95% CI, 74.2%-81.7%] comfort focused vs 93.9% [95% CI, 91.4%-96.1%] longevity focused or unsure; P < .001) and mechanical ventilation (estimated probability, 52.0% [95% CI, 47.4%-56.6%] comfort focused vs 77.9% [95% CI, 74.0%-81.7%] longevity focused or unsure; P < .001). Among decedents, the percentages of participants who received an intensive procedure during the final month of life (estimated probability, 23.5% [95% CI, 16.5%-31.0%] comfort focused vs 26.1% [95% CI, 18.0%-34.5%] longevity focused or unsure; P = .64), discontinued dialysis (estimated probability, 38.3% [95% CI, 32.0%-44.8%] comfort focused vs 30.2% [95% CI, 23.0%-37.8%] longevity focused or unsure; P = .09), and enrolled in hospice (estimated probability, 32.2% [95% CI, 25.7%-38.7%] comfort focused vs 23.3% [95% CI, 16.4%-30.5%] longevity focused or unsure; P = .07) were not statistically different. Conclusions and Relevance: This survey study found that there appeared to be a disconnect between patients' expressed values, which were largely comfort focused, and their engagement in advance care planning and end-of-life care, which reflected a focus on longevity. These findings suggest important opportunities to improve the quality of care for patients receiving dialysis.

Complexity and Challenges of the Clinical Diagnosis and Management of Long COVID.

Importance: There is increasing recognition of the long-term health effects of SARS-CoV-2 infection (sometimes called long COVID). However, little is yet known about the clinical diagnosis and management of long COVID within health systems. Objective: To describe dominant themes pertaining to the clinical diagnosis and management of long COVID in the electronic health records (EHRs) of patients with a diagnostic code for this condition (International Statistical Classification of Diseases and Related Health Problems, Tenth Revision [ICD-10] code U09.9). Design, Setting, and Participants: This qualitative analysis used data from EHRs of a national random sample of 200 patients receiving care in the Department of Veterans Affairs (VA) with documentation of a positive result on a polymerase chain reaction (PCR) test for SARS-CoV-2 between February 27, 2020, and December 31, 2021, and an ICD-10 diagnostic code for long COVID between October 1, 2021, when the code was implemented, and March 1, 2022. Data were analyzed from February 5 to May 31, 2022. Main Outcomes and Measures: A text word search and qualitative analysis of patients' VA-wide EHRs was performed to identify dominant themes pertaining to the clinical diagnosis and management of long COVID. Results: In this qualitative analysis of documentation in the VA-wide EHR, the mean (SD) age of the 200 sampled patients at the time of their first positive PCR test result for SARS-CoV-2 in VA records was 60 (14.5) years. The sample included 173 (86.5%) men; 45 individuals (22.5%) were identified as Black and 136 individuals (68.0%) were identified as White. In qualitative analysis of documentation pertaining to long COVID in patients' EHRs 2 dominant themes were identified: (1) clinical uncertainty, in that it was often unclear whether particular symptoms could be attributed to long COVID, given the medical complexity and functional limitations of many patients and absence of specific markers for this condition, which could lead to ongoing monitoring, diagnostic testing, and specialist referral; and (2) care fragmentation, describing how post-COVID-19 care processes were often siloed from and poorly coordinated with other aspects of care and could be burdensome to patients. Conclusions and Relevance: This qualitative study of documentation in the VA EHR highlights the complexity of diagnosing long COVID in clinical settings and the challenges of caring for patients who have or are suspected of having this condition.

Staffing crisis capacity: a different approach to healthcare resource allocation for a different type of scarce resource.

Severe staffing shortages have emerged as a prominent threat to maintaining usual standards of care during the COVID-2019 pandemic. In dire settings of crisis capacity, healthcare systems assume the ethical duty to maximise aggregate population-level benefit of existing resources. To this end, existing plans for rationing mechanical ventilators and intensive care unit beds in crisis capacity focus on selecting individual patients who are most likely to survive and prioritising these patients to receive scarce resources. However, staffing capacity is conceptually different from availability of these types of discrete resources, and the existing strategy of identifying and prioritising patients with the best prognosis cannot be readily adapted to fit this real-world scenario. We propose that two alternative approaches to staffing resource allocation offer a better conceptual fit: (1) prioritise the worst off: restrict access to acute care services and hospital admission for patients at relatively low clinical risk and (2) prioritise staff interventions with high near-term value: universally restrict selected interventions and treatments that require substantial staff time and/or energy but offer minimal near-term patient benefit. These strategies-while potentially resulting in care that deviates from usual standards-support the goal of maximising the aggregate benefit of scarce resources in crisis capacity settings triggered by staffing shortages. This ethical framework offers a foundation to support institutional leaders in developing operationalisable crisis capacity policies that promote fairness and support healthcare workers.

Implications of Cross-System Use Among US Veterans With Advanced Kidney Disease in the Era of the MISSION Act: A Qualitative Study of Health Care Records.

Importance: Since 2014, when Congress passed the Veterans Access Choice and Accountability (Choice) Act (replaced in 2018 with the more comprehensive Maintaining Internal Systems and Strengthening Integrated Outside Networks [MISSION] Act), the Department of Veterans Affairs (VA) has been paying for US veterans to receive increasing amounts of care in the private sector (non-VA care or VA community care). However, little is known about the implications of these legislative changes for the VA system. Objective: To describe the implications for the VA system of recent increases in VA-financed non-VA care. Design, Setting, and Participants: This qualitative study was a thematic analysis of documentation in the electronic health records (EHRs) of a random sample of US veterans with advanced kidney disease between June 6, 2019, and February 5, 2021. Exposures: Mentions of community care in participant EHRs. Main Outcomes and Measures: Dominant themes pertaining to VA-financed non-VA care. Results: Among 1000 study participants, the mean (SD) age was 73.8 (11.4) years, and 957 participants (95.7%) were male. Three interrelated themes pertaining to VA-financed non-VA care emerged from qualitative analysis of documentation in cohort member EHRs: (1) VA as mothership, which describes extensive care coordination by VA staff members and clinicians to facilitate care outside the VA and the tendency of veterans and their non-VA clinicians to rely on the VA to fill gaps in this care; (2) hidden work of veterans, which describes the efforts of veterans and their family members to navigate the referral process, and to serve as intermediaries between VA and non-VA clinicians; and (3) strain on the VA system, which describes a challenging referral process and the ways in which cross-system care has stretched the traditional roles of VA staff and clinicians and interfered with VA care processes. Conclusions and Relevance: The findings of this qualitative study describing VA-financed non-VA care for veterans with advanced kidney disease spotlight the substantial challenges of cross-system use and the strain placed on the VA system, VA staff and clinicians, and veterans and their families in recent years. These difficult-to-measure consequences of cross-system care should be considered when budgeting, evaluating, and planning the provision of VA-financed non-VA care in the private sector.

Perspectives of Triage Team Members Participating in Statewide Triage Simulations for Scarce Resource Allocation During the COVID-19 Pandemic in Washington State.

Importance: The COVID-19 pandemic prompted health care institutions worldwide to develop plans for allocation of scarce resources in crisis capacity settings. These plans frequently rely on rapid deployment of institutional triage teams that would be responsible for prioritizing patients to receive scarce resources; however, little is known about how these teams function or how to support team members participating in this unique task. Objective: To identify themes illuminating triage team members' perspectives and experiences pertaining to the triage process. Design, Setting, and Participants: This qualitative study was conducted using inductive thematic analysis of observations of Washington state triage team simulations and semistructured interviews with participants during the COVID-19 pandemic from December 2020 to February 2021. Participants included clinician and ethicist triage team members. Data were analyzed from December 2020 through November 2021. Main Outcomes and Measures: Emergent themes describing the triage process and experience of triage team members. Results: Among 41 triage team members (mean [SD] age, 50.3 [11.4] years; 21 [51.2%] women) who participated in 12 simulations and 21 follow-up interviews, there were 5 Asian individuals (12.2%) and 35 White individuals (85.4%); most participants worked in urban hospital settings (32 individuals [78.0%]). Three interrelated themes emerged from qualitative analysis: (1) understanding the broader approach to resource allocation: participants strove to understand operational and ethical foundations of the triage process, which was necessary to appreciate their team's specific role; (2) contending with uncertainty: team members could find it difficult or feel irresponsible making consequential decisions based on limited clinical and contextual patient information, and they grappled with ethically ambiguous features of individual cases and of the triage process as a whole; and (3) transforming mindset: participants struggled to disentangle narrow determinations about patients' likelihood of survival to discharge from implicit biases and other ethically relevant factors, such as quality of life. They cited the team's open deliberative process, as well as practice and personal experience with triage as important in helping to reshape their usual cognitive approach to align with this unique task. Conclusions and Relevance: This study found that there were challenges in adapting clinical intuition and training to a distinctive role in the process of scarce resource allocation. These findings suggest that clinical experience, education in ethical and operational foundations of triage, and experiential training, such as triage simulations, may help prepare clinicians for this difficult role.