Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

Suffering and Symptoms At the End of Life in ICU Patients Undergoing Renal Replacement Therapy.

BACKGROUND: We know little about the end-of-life suffering and symptoms of intensive care unit (ICU) decedents in general and those who undergo renal replacement therapy (RRT) in particular. OBJECTIVES: To examine differences in end-of-life suffering and various symptoms' contribution to suffering between ICU decedents who did not undergo RRT, those who underwent RRT for end-stage kidney disease (ESKD), and those who underwent RRT for acute kidney injury (AKI). METHODS: This is a cross-sectional study conducted at a quaternary-level referral hospital September 2015-March 2017. Nurses completed interviews about ICU patients' suffering and symptoms in their final week. We dichotomized overall suffering into elevated and non-elevated and each symptom as contributing or not to a patient's suffering. RESULTS: Sixty-four nurses completed interviews on 165 patients. Median patient age was 67 years (interquartile range 57, 78); 41% were female. In a multivariable model, undergoing RRT for AKI (odds ratio [OR] 2.95, 95% confidence interval [CI] 1.34-6.49) was significantly associated with elevated suffering compared to no RRT; undergoing RRT for ESKD was not. Adjusting for length of stay, AKI-RRT patients were more likely than non-RRT patients to have fecal incontinence (OR 2.21, 95% CI 1.00-4.93), painful broken skin (OR 2.41, 95% CI 1.14-5.12), and rashes (OR 3.61, 95% CI 1.35-9.67) contributing to their suffering. CONCLUSIONS: Undergoing RRT for AKI was associated with elevated suffering in the last week of life in ICU decedents. Painful broken skin, rashes, and fecal incontinence were more likely to contribute to suffering in AKI-RRT patients than in non-RRT patients. How to reduce suffering associated with AKI-RRT in ICU patients merits further study.

Patient reactions to witnessed medical events in the dialysis center or to the sudden absence of other patients from the center: A qualitative study.

INTRODUCTION: Patients receiving in-center maintenance hemodialysis (HD) spend a significant amount of time together. To date, little or no research has examined how these patients perceive and process other patients' medical events in and absences from their centers. We therefore undertook this qualitative study using semi-structured interviews to explore these phenomena from the patient perspective. METHODS: Patients at a suburban Pittsburgh HD center participated in semi-structured interviews in April to May 2011, reporting on their impressions of their relationships with other patients in the center; their experiences of witnessing clinical decompensations in the center; and their reactions to absences of fellow patients from the center. Trained coders developed a codebook and applied it to interview transcripts. FINDINGS: There were 17 participants, 47% women, 29% black, with median age 63 years. Almost every participant had witnessed other patients' medical events during HD. Three main themes emerged in analysis of interviews: (1) incomplete knowledge of many aspects of witnessed events and patient absences in the HD center; (2) a process of "filling in the blanks": Participants used their own past events and absences to help process other patients' events and absences and used other patients' events and absences to help process their own future events and absences; and (3) participants' broad support for HD center staff being able to share with other patients basic information about their whereabouts if they themselves are absent from the center. DISCUSSION: Witnessed medical events in and patients' absences from the HD center are not only common but are also important to patients, who struggle to process these events and absences due to limited information about what actually happened. Interventions, such as providing patients with more information, could improve patients' experience of witnessed events and fellow patients' absences and potentially impact other patient-centered outcomes.

Nephrology Provider Surprise Question Response and Hospitalizations in Older Adults with Advanced CKD.

BACKGROUND: Older adults with advanced non-dialysis-dependent chronic kidney disease (NDD-CKD) face a high risk of hospitalization and related adverse events. METHODS: This prospective cohort study followed nephrology clinic patients ≥60 years old with NDD-CKD stages 4-5. After an eligible patient's office visit, study staff asked the patient's provider to rate the patient's risk of death within the next year using the surprise question ("Would you be surprised if this patient died in the next 12 months?") with a 5-point Likert scale response (1, "definitely not surprised" to 5, "very surprised"). We used a statewide database to ascertain hospitalization during follow-up. RESULTS: There were 488 patients (median age 72 years, 51% female, 17% black) with median estimated glomerular filtration rate 22 mL/min/1.73 m2. Over a median follow-up of 2.1 years, the rates of hospitalization per 100 person-years in the respective response groups were 41 (95% confidence interval [CI]: 34-50), "very surprised"; 65 (95% CI: 55-76), "surprised"; 98 (95% CI: 85-113), "neutral"; 125 (95% CI: 107-144), "not surprised"; and 120 (95% CI: 94-151), "definitely not surprised." In a fully adjusted cumulative probability ordinal regression model for proportion of follow-up time spent hospitalized, patients whose providers indicated that they would be "definitely not surprised" if they died spent a greater proportion of follow-up time hospitalized compared with those whose providers indicated that they would be "very surprised" (odds ratio 2.4, 95% CI: 1.0-5.7). There was a similar association for time to first hospitalization. CONCLUSION: Nephrology providers' responses to the surprise question for older patients with advanced NDD-CKD were independently associated with proportion of future time spent hospitalized and time to first hospitalization. Additional studies should examine how to use this information to provide patients with anticipatory guidance on their possible clinical trajectory and to target potentially preventable hospitalizations.

Health Outcome Priorities of Older Adults with Advanced CKD and Concordance with Their Nephrology Providers' Perceptions.

BACKGROUND: Older adults with advanced CKD have significant pain, other symptoms, and disability. To help ensure that care is consistent with patients' values, nephrology providers should understand their patients' priorities when they make clinical recommendations. METHODS: Patients aged ≥60 years with advanced (stage 4 or 5) non-dialysis-dependent CKD receiving care at a CKD clinic completed a validated health outcome prioritization tool to ascertain their health outcome priorities. For each patient, the nephrology provider completed the same health outcome prioritization tool. Patients also answered questions to self-rate their health and completed an end-of-life scenarios instrument. We examined the associations between priorities and self-reported health status and between priorities and acceptance of common end-of-life scenarios, and also measured concordance between patients' priorities and providers' perceptions of priorities. RESULTS: Among 271 patients (median age 71 years), the top health outcome priority was maintaining independence (49%), followed by staying alive (35%), reducing pain (9%), and reducing other symptoms (6%). Nearly half of patients ranked staying alive as their third or fourth priority. There was no relationship between patients' self-rated health status and top priority, but acceptance of some end-of-life scenarios differed significantly between groups with different top priorities. Providers' perceptions about patients' top health outcome priorities were correct only 35% of the time. Patient-provider concordance for any individual health outcome ranking was similarly poor. CONCLUSIONS: Nearly half of older adults with advanced CKD ranked maintaining independence as their top heath outcome priority. Almost as many ranked being alive as their last or second-to-last priority. Nephrology providers demonstrated limited knowledge of their patients' priorities.

Survival after acute hemodialysis in Pennsylvania, 2005-2007: a retrospective cohort study.

BACKGROUND: Little is known about acute hemodialysis in the US. Here we describe predictors of receipt of acute hemodialysis in one state and estimate the marginal impact of acute hemodialysis on survival after accounting for confounding due to illness severity. MATERIALS AND METHODS: This is a retrospective cohort study of acute-care hospitalizations in Pennsylvania from October 2005 to December 2007 using data from the Pennsylvania Health Care Cost Containment Council. Exposure variable is acute hemodialysis; dependent variable is survival following acute hemodialysis. We used multivariable logistic regression to determine propensity to receive acute hemodialysis and then, for a Cox proportional hazards model, matched acute hemodialysis and non-acute hemodialysis patients 1∶5 on this propensity. RESULTS: In 2,131,248 admissions of adults without end-stage renal disease, there were 6,657 instances of acute hemodialysis. In analyses adjusted for predicted probability of death upon admission plus other covariates and stratified on age, being male, black, and insured were independent predictors of receipt of acute hemodialysis. One-year post-admission mortality was 43% for those receiving acute hemodialysis, compared to 13% among those not receiving acute hemodialysis. After matching on propensity to receive acute hemodialysis and adjusting for predicted probability of death upon admission, patients who received acute hemodialysis had a higher risk of death than patients who did not over at least 1 year of follow-up (hazard ratio 1·82, 95% confidence interval 1·68-1·97). CONCLUSIONS: In a populous US state, receipt of acute hemodialysis varied by age, sex, race, and insurance status even after adjustment for illness severity. In a comparison of patients with similar propensity to receive acute hemodialysis, those who did receive it were less likely to survive than those who did not. These findings raise questions about reasons for lack of benefit.