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.
Importance: Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care.
Objectives: To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death.
Design, Setting, and Participants: This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019.
Exposure: Cessation of dialysis treatment before death.
Main Outcomes and Measures: Bereaved Family Survey ratings.
Results: Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001).
Conclusions and Relevance: This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.
BACKGROUND/PURPOSE: Do-not-resuscitate (DNR) is a legal order that demonstrates a patient's will to avoid further suffering from advanced treatment at the end of life. The concept of palliative care is increasingly accepted, but the impacts of different major illnesses, geographic regions, and health expenses on DNR rates remain unclear.
METHODS: This study utilized the two-million National Health Insurance (NHI) Research Database to examine the percentage of DNR rates among all deaths in hospitals from 2001 to 2011. DNR in the study was defined as no resuscitation before death in hospitals. Death records were extracted from the database and correlated with healthcare information. Descriptive statistics were compiled to examine the relationships between DNR rates and variables including major illnesses, geographic regions, and NHI spending.
RESULTS: A total of 126,390 death records were extracted from the database for analysis. Among cancer-related deaths, pancreatic cancer patients had the highest DNR rate (86.99%) and esophageal cancer patients had the lowest DNR rate (71.62%). The higher DNR rate among cancer-only patients (79.53%) decreased with concomitant dialysis (66.07%) or ventilator use (57.85%). The lower DNR rates in patients with either chronic dialysis (51.27%) or ventilator use (59.10%) increased when patients experienced these two conditions concomitantly (61.31%). Although DNR rates have consistently increased over time across all regions of Taiwan, a persistent disparity was noted between the East and the South (76.89% vs. 70.78% in 2011, p < 0.01). After adjusting for potential confounders, DNR patients had significantly lower NHI spending one year prior to death ($67,553), compared with non-DNR patients.
CONCLUSION: Our study found that DNR rates varied across cancer types and decreased in cancer patients with concomitant chronic dialysis or ventilator use. Disparities in DNR rates were evident across geographic regions in Taiwan. A wider adoption of the DNR policy may achieve substantial savings in health expenses and improve patients' quality of life.
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.
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: Palliative care has improved the quality of end-of-life (EOL) care and lowered the health care cost of cancer, and these benefits should be extended to patients with other serious illnesses including end-stage kidney disease. We evaluated the quality of EOL care, survival probabilities, and health care costs for dialysis patients in their last month of life.
Methods: We conducted a population-based study and analyzed data from Taiwan’s Longitudinal Health Insurance Database, which contains claims information of patient medical records, health care costs, and insurance system exit dates (our proxy for death between 2006 and 2011).
Results: Data of 1177 adult patients who died of chronic hemodialysis or peritoneal dialysis were investigated. The mean age of these patients was 69.7 ± 11.9 years, and 585 (49.7%) were women. Some patients with dialysis received cardiopulmonary resuscitation (66.9%), died in a hospital (65.0%), or were admitted to an intensive care unit (51.0%) in the last month of life. We further classified these patients into two groups, namely dialysis with cancer (DC) (n = 149) and dialysis without cancer (D) (n = 1028). Only 19 dialysis patients received palliative care, and the proportion of patients receiving palliative care was higher in the DC group than in the D group (11.4% vs. 0.2%). The mean health care costs per person during the final month of life was similar between the DC and D groups (USD 2755 ± 259 vs. USD 2827 ± 88). Multivariate logistic regression showed that the DC group had lower odds of receiving cardiopulmonary resuscitation (CPR) (OR: 0.39, CI = 0.26–0.56, p < 0.001) procedures, higher odds of longer hospital stays than the third quartile (> 25 days) (OR: 1.52, CI = 1.01–2.29, p = 0.0046), and higher odds of being hospitalized more than once (OR: 2.26, CI = 1.42–3.59, p = 0.001) than the D group in the last month of life after adjustments.
Conclusions: DC patients received hospice care more frequently, received CPR less frequently, and had similar health care costs. DC patients also had a higher risk of a hospital stay that lasted more than 25 days and more than one hospitalization compared with D patients in the final month of life.
OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.
METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.
RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.
CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.
Confrontés à des soins exigeants, parfois vitaux, quelle place reste-t-il pour la réflexivité et la considération de ce qui resiste en soi. La sensation d'une mise en impasse, vécue seul ou à plusieurs, peut alors traverser tous les acteurs. Dans ce contexte, un travail de conflictualité appellerait une déconstruction patiente pour chaque acteur, dans la sécurité d'un partenariat soignant-soigné et un exercice interdisciplinaire.
BACKGROUND: Economic evaluations of advance care planning (ACP) in people with chronic kidney disease are scarce. However, past studies suggest ACP may reduce healthcare costs in other settings. We aimed to examine hospital costs and outcomes of a nurse-led ACP intervention compared with usual care in the last 12 months of life for older people with end-stage kidney disease managed with haemodialysis.
METHODS: We simulated the natural history of decedents on dialysis, using hospital data, and modelled the effect of nurse-led ACP on end-of-life care. Outcomes were assessed in terms of patients' end-of-life treatment preferences being met or not, and costs included all hospital-based care. Model inputs were obtained from a prospective ACP cohort study among dialysis patients; renal registries and the published literature. Cost-effectiveness of ACP was assessed by calculating an incremental cost-effectiveness ratio (ICER), expressed in dollars per additional case of end-of-life preferences being met. Robustness of model results was tested through sensitivity analyses.
RESULTS: The mean cost of ACP was AUD$519 per patient. The mean hospital costs of care in last 12 months of life were $100,579 for those who received ACP versus $87,282 for those who did not. The proportion of patients in the model who received end-of-life care according to their preferences was higher in the ACP group compared with usual care (68% vs. 24%). The incremental cost per additional case of end-of-life preferences being met was $28,421. The greatest influence on the cost-effectiveness of ACP was the probability of dying in hospital following dialysis withdrawal, and costs of acute care.
CONCLUSION: Our model suggests nurse-led ACP leads to receipt of patient preferences for end-of-life care, but at an increased cost.
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.
BACKGROUND: The population of end-stage renal failure (ESRF) receiving dialysis treatment is increasing worldwide. For most patients with ESRF, dialysis can extend their life. However, treatment can be demanding and time-consuming. Despite dialysis treatment, many patients continue to experience various sufferings.
METHODS: A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering of ESRF patients on maintenance dialysis in Malaysia. The results were thematically analyzed.
RESULTS: Nineteen ESRF patients were interviewed. The themes and subthemes were: (I) physical suffering-physical symptoms and functional limitations, (II) psychological suffering-the emotions and thoughts of suffering, (III) social suffering-healthcare-related suffering and burdening of others and (IV) spiritual suffering-the queries of suffering.
CONCLUSIONS: These findings may help healthcare professionals to fill in the gaps in the delivery of best renal palliative care.
BACKGROUND: Despite the increasing use of erythropoiesis-stimulating agent (ESA) in patients receiving dialysis, few studies have examined the benefits of ESA for patients with chronic kidney disease receiving palliative care.
OBJECTIVE: We designed a retrospective observational study to evaluate the effect of ESA in treating anemia of renal disease among adult patients receiving palliative care instead of dialysis. The primary objective was to assess whether ESA can reduce the transfusion burden and hospitalization.
RESULTS: Thirty-nine patients receiving ESA were matched with a control group of 39 patients without ESA. Their mean age and glomerular filtration rates were 76.7 (10.2) years and 11.6 (5.7) mL/min/1.73 m2, respectively. Baseline hemoglobin levels were comparable in the ESA and control groups; their corresponding values were 10.2 (1.5) and 10.1 (1.4) g/dL. During 1-year observation period, 34 units of red cell transfusion occurred in patients receiving ESA, whereas 128 units of red cell were transfused to patients in control group. Patients in the control group had higher transfusion rate (incidence rate ratio [IRR]: 3.63; 95% confidence interval [CI]: 2.49-5.31; P < .00001) and higher admission rates (IRR: 2.34; 95% CI: 1.80-3.03; P < .000001) than the ESA group even after adjustment for comorbidities.
CONCLUSIONS: High disease burden of palliative care among patients with stage 4 to 5 chronic kidney disease was reflected by transfusion requirement and hospitalization rates, both of which were shown to be significantly ameliorated by ESA treatment.
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.
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.
Introduction: To determine the prevalence, severity, and change in symptoms experienced by dialysis patients following the introduction of use of a symptom-reporting questionnaire in nephrology clinic.
Methods: This is an observational study of 160 prevalent dialysis patients. Palliative care Outcome Scale symptom (POS-renal) questionnaires modified for patients with end-stage kidney disease were completed at baseline and follow-up (median 3 months), with results available to nephrologists at clinic appointments.
Findings: The baseline prevalence of individual symptoms ranged from 15% to 66%. The most common symptoms were lack of energy (66%) and poor mobility (58%). The median number of symptoms was 7/17 (interquartile range [IQR]: 4-10). Forty-nine percent of patients rated at least 1 symptom as severe or overwhelming. At follow-up, the median number of symptoms experienced was unchanged at 7/17 (IQR: 3-10). However, there was considerable flux in symptom severity. On average, individual symptoms that were present at baseline improved in 56% of patients and worsened in 18%; only 26% had stable symptom severity. Individual symptoms newly occurred in 8% to 20% of patients between time points, with 77% of patients experiencing at least 1 new symptom. The percent of patients rating at least 1 symptom as severe or overwhelming was reduced from 49% to 39% (P = .040).
Conclusions: Use of the POS-renal questionnaire identified a high symptom burden. The presence and severity of symptoms changed dramatically over a short follow-up period, highlighting the need for regular surveillance of symptoms in the dialysis population. Routine use of a symptom questionnaire in clinic may be useful for the identification and management of symptoms in dialysis patients.
BACKGROUND: Few studies have explored dialysis patients' perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area.
MATERIALS AND METHODS: In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients' knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues.
RESULTS: The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist.
CONCLUSION: Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions.
OBJECTIVE: Hemodialysis (HD) is the most common renal replacement therapy for patients with end-stage renal disease in Taiwan. The use of HD in hospice care and its impact on terminal cancer patients remains unclear.
METHODS: Using claim data from the Taiwan National Health Insurance Research Database, all patients who died from cancer and claim data of their terminal admissions in hospice from 2007 to 2010. Those with a comorbid diagnosis of renal failure or who had health insurance claims data for HD were enrolled.
RESULTS: A total of 5482 subjects were identified, of whom 4484 received HD and 998 did not. The HD group was significantly correlated with a younger age and high costs of terminal hospice admission. After adjusting for age and gender, the HD group was positively associated with a long hospice stay, in-hospice death, bone/connective tissue/breast cancers, and secondary/metastatic cancers, but negatively associated with genitourinary cancer. Compared with Department of Health/municipal hospitals, patients at both national and private university-affiliated hospitals were less likely to undergo HD.
CONCLUSIONS: For terminal cancer patients under hospice care, HD was associated with a younger age, long terminal hospice stay, and high medical costs. Some types of cancers were associated with HD. University-affiliated hospitals played significant roles in non-HD renal supportive care. In-hospice HD is still common in Taiwan. Dialysis withdrawal and alternative care have space to promoting in hospice care.
Purpose: Between 2000 and 2012, the incident dialysis population in the United States increased by nearly 60%, most sharply among adults 75 years and older. End-of-life (EOL) conversations among dialysis patients are associated with better patient-centered outcomes and lower use of aggressive interventions in the last month of life. This study examined how health literacy may affect engagement, comprehension, and satisfaction with EOL conversations among elderly dialysis patients.
Design and Methods: Qualitative/descriptive study with semi-structured interviews about health literacy, EOL conversations, and goals of care with 31 elderly dialysis patients at 2 centers in Boston. Themes were interpreted in the context of Nutbeam's health literacy framework.
Results: Despite high mortality risk in this population, only 13% of patients had discussed EOL preferences with physicians, half had discussed EOL with their social network, and 25% of participants explicitly stated that they had never considered EOL preferences. Less than 30% of participants could correctly define terminology commonly used in EOL conversations. Analyses yielded 5 themes: (1) Misunderstanding EOL terminology; (2) Nephrologists reluctant to discuss EOL; (3) Patients conforming to socially constructed roles; (4) Discordant expectations and dialysis experiences; and (5) Reconciling EOL values and future care. Patients had limited understanding of EOL terminology, lacked of opportunities for meaningful EOL discussion with providers and family, resulting in uncertainty about future care.
Implications: Limited health literacy presents a substantial barrier to communication and could lead to older adults committing to an intensive pattern of care without adequate information. Clinicians should consider health literacy when discussing dialysis initiation.
Patients with end-stage renal disease supported on dialysis experience high morbidity and mortality. Little is known about family caregiver experiences during the disease. Qualitative research methods were used to explore the experiences of family caregivers caring for patients receiving dialysis. In-depth, semi-structured, in-person interviews were completed with 18 family caregivers in rural and urban settings. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic and descriptive analysis. Major themes identified included challenges navigating the health system, caregiver burden, perceptions of palliative care, symptom management, and decision-making. Caregiver burdens are significant including physical, emotional, social, and economic dimensions. There is a need to recognize and improve support for family caregivers and increase collaboration with nephrology and palliative care services from commencement of dialysis until death and into bereavement.