The prevalence of end-stage kidney disease is increasing, particularly among older people and those with multiple comorbidities. Typically, patients who develop end-stage kidney disease receive renal replacement therapies such as dialysis; however, this treatment can significantly affect quality of life and may not prolong life in older patients. Therefore, some patients may choose not to undergo dialysis and instead choose conservative management, which involves a palliative approach that focuses on maintaining quality of life and advance care planning. This article details the steps involved in a conservative kidney management pathway for end-stage kidney disease, including symptom management and advance care planning. It also discusses the importance of a palliative approach for patients receiving dialysis.
Background and Objectives: The Acute Kidney Outreach to Reduce Deterioration and Death trial was a large pilot study for a cluster-randomized trial of acute kidney injury (AKI) outreach.
Methods: An observational control (before) phase was conducted in two teaching hospitals (9 miles apart) and their respective catchment areas. In the intervention (after) phase, a working-hours AKI outreach service operated for the intervention hospital/area for 20 weeks, with the other site acting as a control. All AKI alerts in both hospital and community patients were screened for inclusion. Major exclusion criteria were patients who were at the end of life, unlikely to benefit from outreach, lacking mental capacity or already referred to the renal team. The intervention arm included a model of escalation of renal care to AKI patients, depending on AKI stage. The 30-day primary outcome was a combination of death, or deterioration, as shown by any need for dialysis or progression in AKI stage. A total of 1762 adult patients were recruited; 744 at the intervention site during the after phase.
Results: A median of 3.0 non-medication recommendations and 0.5 medication-related recommendations per patient were made by the outreach team a median of 15.7 h after the AKI alert. Relatively low rates of the primary outcomes of death within 30 days (11–15%) or requirement for dialysis (0.4–3.7%) were seen across all four groups. In an exploratory analysis, at the intervention hospital during the after phase, there was an odds ratio for the combined primary outcome of 0.73 (95% confidence interval 0.42–1.26; P = 0.26).
Conclusions: An AKI outreach service can provide standardized specialist care to those with AKI across a healthcare economy. Trials assessing AKI outreach may benefit from focusing on those patients with ‘mid-range’ prognosis, where nephrological intervention could have the most impact.
BACKGROUND: End-stage renal disease (ESRD) patients have significant symptom burden. Reduced provider awareness of symptoms contributes to underutilization of symptom management resources.
METHOD: We hypothesized that improved nephrologist awareness of symptoms leads to symptom improvement. In this prospective, multicenter interventional study, 53 (age >65) ESRD inpatients underwent symptom assessment using the modified Edmonton Symptom Assessment System (ESAS) at admission and 1-week post-discharge. Physicians caring for the enrollees were asked if they felt their patients would die within the year, and then sequentially randomized to receive the results of the baseline survey (group 1) or to not receive the results (group 2).
RESULTS: Fifty-two patients completed the study; 1 died. Baseline characteristics were compared. For 70% of the total cohort, physicians reported that they would not be surprised if their patient died within a year. There was no difference in baseline scores of the patients between the 2 physician groups. Severity ratings were compared between in-hospital and post discharge scores and between physicians who received the results versus those that did not. Total ESAS scores improved more in group 1 (12.9) than in group 2 (9.2; p = 0.04). Among individual symptoms, there was greater improvement in pain control (p = 0.02), and nominal improvement in itching (p = 0.03) in group 1 as compared to group 2. There were 3 palliative care consults.
CONCLUSIONS: Our findings reinforce the high symptom burden prevalent in older ESRD patients. The improvement in total scores, and individual symptoms of pain and itching in group 1 indicates better symptom control when physician awareness is increased. Residual symptoms post hospitalization and low utilization of palliative care resources are suggestive of a missed opportunity by nephrologists to address the high symptom burden at the inpatient encounter, which is selective for sick patients and/or indication of inadequacy of dialysis to control these symptoms.
BACKGROUND: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.
METHODS: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.
RESULTS: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.
CONCLUSIONS: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.
Background: Life expectancy in patients with end-stage kidney disease treated with hemodialysis (HD) is limited, and as such, the presence of an advanced care directive (ACD) may improve the quality of death as experienced for patients and families. Strategies to discuss and implement ACDs are limited with little being known about the status of Do Not Resuscitate (DNR) orders in the Canadian HD population.
Objectives: Using data from the Dialysis Outcomes and Practice Patterns Study (DOPPS), we set out to (1) examine the variability in DNR orders across Canada and its largest province, Ontario and (2) identify clinical and functional status measures associated with a DNR order.
Design: We conducted a retrospective cohort study using data from the DOPPS Canada Phase 4 to 6 from 2009 to 2017.
Setting: DOPPS facilities in Canada.
Patients: All adults (>18 years) who initiated chronic HD with a documented ACD were included.
Measurements: ACD and DNR orders.
Methods: Descriptive statistics were compared for baseline characteristics (demographics, comorbidities, medications, facility characteristics, and patient functional status) and DNR status. The crude proportion of patients per facility with a DNR order was calculated across Canada and Ontario. Functional status was determined by activities of daily living and components of the Kidney Disease Quality of Life (KDQOL)-validated questionnaire. We used generalized estimating equations (GEEs) to create sequential multivariable models (demographics, comorbidities, and functional status) of variables associated with DNR status.
Results: A total of 1556 (96% of total) patients treated with HD had a documented ACD and were included. A total of 10% of patients had a DNR order. The crude variation of DNR status differed considerably across facilities within Canada, between Ontario and non-Ontario, and within Ontario (interprovince variation = 6.3%-17.1%, Ontario vs non-Ontario = 8.2% vs 11.7%, intraprovincial variation [Ontario] = 1%-26%). Patients with a DNR order were more commonly older, white, with cardiac comorbidities, with less or shorter predialysis care compared with those without a DNR order. Patients with a DNR order reported lower energy, more difficulty with transfers, meal preparation, household tasks, and financial management. In a multivariate model, age, cardiac disease, stroke, dialysis duration, and intradialytic weight gain were associated with DNR status.
Limitations: Relatively small number of events or measures in certain categories.
Conclusions: A large inter- and intraprovincial (Ontario) variation was observed regarding DNR orders across Canada highlighting areas for potential quality improvement. While functional status did not appear to have a bearing on the presence of a DNR order, the presence of various comorbidities was associated with the presence of a DNR order.
BACKGROUND: Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences.
METHODS: Nephrology clinic patients age = 60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared.
RESULTS: Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers.
CONCLUSIONS: Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.
BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care.
RESULTS: Overall, 52% of cohort members spent = 2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns.
CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.
Kidney supportive care (KSC) is a patient-centered model of multidisciplinary care designed for patients with advanced chronic kidney disease (CKD) and end-stage kidney disease (ESKD). Our goal was to characterize the types, frequencies, and costs of services accessed by patients enrolled in a KSC program. We analyzed health care utilization data prospectively collected from 102 patients who enrolled in the KSC program during the first 52 weeks of its existence. The data comprised program appointments, emergency department presentations, ambulance service use, outpatient visits, inpatient episodes, and dialysis treatments made within the Brisbane area of Metro North. Costs of resource use were estimated using Queensland Health funding principles and guidelines. Analyses included descriptive statistics, correlations, and multivariate regressions. During the median program participation of 22 weeks, patients had 3975 contacts with health care, with the total value of services amounting to nearly A$3 million. Dialysis treatments accounted for 70% of visits and 49% of costs. Patients receiving dialysis had higher utilization of outpatient services and associated cost, compared to patients who were not dialyzed. The presence of diabetes and the choice of conservative pathway were both predictors of higher frequency and cost of services. Longer program participation was associated with lower weekly utilization and cost. The program attracted patients representing various characteristics, pathways, needs, and outcomes. Exploring these patterns will enable better understanding of the patient population and improved service planning, in KSC and similar programs that aim to comprehensively address the needs of patients with advanced CKD and ESKD.
For those with end-stage renal disease (ESRD), renal replacement therapies, such as hemodialysis, are perceived as being beneficial to extend quantity of life––but often at the great expense of quality of life.
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BACKGROUND: Study findings show that although palliative care decreases symptom burden, it is still underused in patients with ESKD. Little is known about disparity in use of palliative care services in such patients in the inpatient setting.
METHODS: To investigate the use of palliative care consultation in patients with ESKD in the inpatient setting, we conducted a retrospective cohort study using the National Inpatient Sample from 2006 to 2014 to identify admitted patients with ESKD requiring maintenance dialysis. We compared palliative care use among minority groups (black, Hispanic, and Asian) and white patients, adjusting for patient and hospital variables.
RESULTS: We identified 5,230,865 hospitalizations of such patients from 2006 through 2014, of which 76,659 (1.5%) involved palliative care. The palliative care referral rate increased significantly, from 0.24% in 2006 to 2.70% in 2014 (P<0.01). Black and Hispanic patients were significantly less likely than white patients to receive palliative care services (adjusted odds ratio [aOR], 0.72; 95% confidence interval [95% CI], 0.61 to 0.84, P<0.01 for blacks and aOR, 0.46; 95% CI, 0.30 to 0.68, P<0.01 for Hispanics). These disparities spanned across all hospital subtypes, including those with higher proportions of minorities. Minority patients with lower socioeconomic status (lower level of income and nonprivate health insurance) were also less likely to receive palliative care.
CONCLUSIONS: Despite a clear increase during the study period in provision of palliative care for inpatients with ESKD, significant racial disparities occurred and persisted across all hospital subtypes. Further investigation into causes of racial and ethnic disparities is necessary to improve access to palliative care services for the vulnerable ESKD population.
Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty.
Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice.
Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction.
Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD] = 16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range = 0–60; SD = 9.1), with a mean of 7.5 (SD = 3.7) individual physical symptoms (range = 0–15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decision-making conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively.
Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.
Background: Self-rated health (SRH) and the surprise question (SQ) capture perceptions of health and are independent risk factors for poor outcomes. Little is known about their association with physiologic and functional decline.
Objective: Determine the association of SRH and SQ with frailty and functional status in older adults with chronic kidney disease (CKD) and their utility as screening tools.
Design: Prospective cohort study.
Setting/Subjects: Two hundred seventy-two adults, age =60 years, with advanced CKD seen in nephrology clinic.
Measurements: Patients completed SRH and were evaluated for frailty (Fried criteria and Clinical Frailty Scale [CFS]) and functional status (Katz and Lawton indices of activities of daily living [ADLs] and instrumental ADLs [iADLs]). Providers completed the SQ. Correlations were evaluated using Spearman's rho.
Results: Fifteen percent of patients were frail, 8% had =1 ADL deficit, and 29% had =1 iADL deficit. SRH and SQ were moderately correlated with frailty and iADLs. A SRH of excellent, very good, or good was predictive of nonfrail status (Fried negative predictive value [NPV]: 0.92; CFS NPV: 0.92) and preserved ADL function (NPV for =1 deficit: 0.96). A SQ response of 5, 4, or 3 (i.e., surprised) was predictive of nonfrail status and preserved ADL function (CFS NPV: 0.90; ADL =1 deficit NPV: 0.95). A SQ response of 1 or 2 had a positive predictive value of 0.64 for =1 iADL deficit.
Conclusions: Subjective health measures may be useful screening tools for frailty and functional status.
BACKGROUND: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory.
AIM: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease.
RESEARCH DESIGN AND PARTICIPANTS: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data.
ETHICAL CONSIDERATIONS: Ethical approval was obtained (Dnr 2014/304-31).
FINDINGS AND DISCUSSION: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress.
CONCLUSION: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.
BACKGROUND: In Germany, practice patterns of conservative renal care (CRC), dialysis withdrawal (DW), and concomitant palliative care in patients who choose these options are unknown.
METHOD: A survey was designed including 13 structured and one open questions on the management and frequency of CRC and DW, local palliative care structure, and fundamentals of the decision-making process, and addressed to the head physicians of all renal centers (n = 193) of a non-profit renal care provider (KfH - Kuratorium für Dialyse und Nierentransplantation, Neu-Isenburg, Germany).
RESULTS: Response rate was 62.2% (n = 122 centers) comprising 14,197 prevalent dialysis patients and 159,652 renal outpatients. Two-thirds of the respondents were men (85% in the age group between 45 and 64 years). Mean time of experience in renal medicine was 22.2 years in men, 20.8 years in women. 94% of all centers provided CRC with a different frequency and proportion of patients (mean 8.4% of the center population, median 5%, range 0-50%). Mean proportion of DW was 2.85% per year (median 2%, range 1-15%). Physicians and center features were not significantly associated with utilization of CRC or DW. Palliative care management varied including local palliative teams, support by general physicians, or by the renal team itself. Hospice care was only established in patients undergoing CRC. Fundamentals of the decision-making process were the desire of the patient (90% in CRC, 67% in DW). Patients undergoing CRC changed their opinion towards treatment modality "frequently" in 18% of the cases, "occasionally" in 73%. Physicians' decisions were mostly driven by presumed fatal prognosis and poor physical or mental conditions of the individual patient. Different barriers to provide palliative care for the renal population like lack of education in palliative medicine, shortness of staff, lack of financial resources, and local palliative care structures were reported.
CONCLUSION: Compared to international numbers, in Germany, proportion of CRC and DW reported by non-profit renal centers is in the lower range. Center practice of palliative care management varies and is driven by availability of local palliative care resources and presumably by attitudes of the renal teams. Quality of palliative care and the decision-making process need further evaluation.
Aim: The aim of the study is to assess which factors are associated with self-efficacy for making these decisions in surrogates of end-stage kidney disease patients.
Materials and Methods: Cross-sectional study conducted in the hemodialysis clinic of a private hospital in Mexico City. A total of 124 surrogates of patients in hemodialysis were included in the study. Self-efficacy for decision-making was assessed with the Family Decision-Making Self-Efficacy Scale. As factors related to decision-making self-efficacy, sociodemographic data, health information, and professional help received for dealing with end-of-life issues were assessed in both patients and surrogates. Functional status and advanced directives of the patient as well as prior experience in decision-making of the surrogates were also included. Logistic regression models were used to establish the associations.
Results: The mean age of participants was 49.4 years (standard deviation: 14). Factors associated to decision-making self-efficacy were awareness of the surrogate about the terminal disease of the patient (P < 0.001), prior conversation between the surrogate and the patient about end-of-life preferences (P = 0.037), time between the patient was told dialysis was required and accepting it inferior to 1 month (P = 0.016), and visual impairment of the patient (0.040).
Conclusions: This study provides information of which factors are associated with self-effectiveness in surrogates of terminally ill renal patients so that strategies based on these considerations might be implemented in the future.
Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.
BACKGROUND: Latinos with end-stage renal disease (ESRD) have worse mental and kidney composite health-related quality of life (HRQOL) scores compared to non-Latino ESRD patients. Latino ESRD patients uniquely report that social factors (e.g., lack of care coordination, food insecurity, and low health literacy) and mental health influence their HRQOL. We developed a culturally tailored peer navigator (PN) intervention to improve the HRQOL of Latinos on hemodialysis.
OBJECTIVE: To determine the feasibility of the PN intervention.
DESIGN: Single-arm prospective study. The PN provided individualized support with advance care planning, care coordination, and counseling about the importance of diet and mental health.
SETTING AND PARTICIPANTS: Latino with ESRD receiving scheduled outpatient thrice-weekly hemodialysis or reliant on emergency-only hemodialysis in Denver.
MAIN MEASURES: Recruitment, retention rates, data completeness, intervention dose, patient- and staff-reported satisfaction with the intervention.
RESULTS: Of 49 eligible patients, 40 (82%) agreed to participate. The majority of participants received scheduled outpatient hemodialysis (75%), 20 were women (50%), with a mean (standard deviation [SD]) age of 56 (13) years. No participants withdrew from the intervention. One participant died. The mean (SD) number of PN visits per participant was 7 (2) and the mean (SD) length of the visits was 97 minutes (49). The majority of visits took place at the hemodialysis facility (59%) and home (27%). The vast majority of participants reported that the PN improved their quality of life as a patient on hemodialysis (95%).
CONCLUSIONS: The PN intervention achieved feasibility goals and was well received by participants.
BACKGROUND: Lower extremity amputation is common among patients with ESRD, and often portends a poor prognosis. However, little is known about end-of-life care among patients with ESRD who undergo amputation.
METHODS: We conducted a mortality follow-back study of Medicare beneficiaries with ESRD who died in 2002 through 2014 to analyze patterns of lower extremity amputation in the last year of life compared with a parallel cohort of beneficiaries without ESRD. We also examined the relationship between amputation and end-of-life care among the patients with ESRD.
RESULTS: Overall, 8% of 754,777 beneficiaries with ESRD underwent at least one lower extremity amputation in their last year of life compared with 1% of 958,412 beneficiaries without ESRD. Adjusted analyses of patients with ESRD showed that those who had undergone lower extremity amputation were substantially more likely than those who had not to have been admitted to-and to have had prolonged stays in-acute and subacute care settings during their final year of life. Amputation was also associated with a greater likelihood of dying in the hospital, dialysis discontinuation before death, and less time receiving hospice services.
CONCLUSIONS: Nearly one in ten patients with ESRD undergoes lower extremity amputation in their last year of life. These patients have prolonged stays in acute and subacute health care settings and appear to have limited access to hospice services. These findings likely signal unmet palliative care needs among seriously ill patients with ESRD who undergo amputation as well as opportunities to improve their care.
Our cellphones rang. Sally, a long-timediabetic who had recently restarted dialysis after decades with a transplant was onthe line from the Emergency Department. She seldom called us directly, but now she was panicky and shouting into the phone.“If this is the way it’s going to be, if my mind is going to be messed up, then I might as well quit dialysis. I don’t want tol ive this way.”She was stuttering and confused,possibly related to the newly diagnosedosteomyelitis or its treatment, but she was oriented enough to know what she was saying. She’d had this conversation many times with her nephrology team. Sally had weathered innumerable complications of type 1 diabetes over more than 50 years and had watched many of her counter-parts deteriorate and die. Sally was never one to say,“I quit,”but she always articulated the importance of quality of life over quantity. As she often told us,“There are worse things than death.