Le respect de l’autonomie du patient est essentiel. Il peut rédiger des directives anticipées en vue d’une situation où il ne pourrait plus s’exprimer. Actuellement, peu de personnes les ont rédigées. Nous avons réalisé une étude sur la faisabilité de la mise en place systématique des directives anticipées chez des patients hémodialysés. Cette étude prospective monocentrique a été menée dans un centre d’hémodialyse ambulatoire en 4 étapes : un questionnaire remis aux soignants ; la sélection puis l’information des patients ; la rédaction assistée des directives anticipées par les patients intéressés ; l’évaluation des causes de non-participation. Les soignants connaissent mal le dispositif et ont des réticences : le manque de connaissances médicales du patient, l’angoisse générée par la discussion sur la fin de vie. Cinquante-six patients (51,6 %) ont été inclus et ont reçu les informations. Neuf d’entre eux ont souhaité rédiger leurs directives anticipées sur un formulaire adapté, huit les ont finalisées (7,4 % de la population initiale). La majorité souhaitait une limitation thérapeutique. Vingt-neuf patients ayant reçu l’information n’ont pas souhaité les rédiger, les raisons étant : ils se sentent bien ou pensent que leurs proches prendraient les bonnes décisions. Dix-huit patients sont sortis du centre pendant l’étude. Le développement des directives anticipées nécessite l’information et la formation des soignants, ainsi que l’accompagnement des patients. Peu de patients sont allés au bout de la démarche. La limite de la « compétence » du patient à décider pour lui est difficile à définir. Le rôle du médecin est central pour l’accompagner.
Introduction: The transplant waiting list exceeds the number of organs available. One means of increasing the organ pool is to broaden potential donors to include those with chronic diseases.
Research Questions: The study tested the effectiveness of using peer mentors to encourage individuals on dialysis to enroll on an organ donor registry.
Design: Dialysis units were pair-matched by size and racial composition and then randomized to one of 2 interventions: meetings with a peer mentor (experimental intervention) or organ donation mailings (control). Peer mentors were trained to discuss organ donation with individuals on dialysis during in-person meetings at dialysis units. The primary outcome was verified registration in the state’s donor registry.
Results: After adjusting for age, gender, race, income, and education and accounting for correlation within the dialysis center, there was a significant intervention effect. Among individuals in the intervention group, the odds of enrolling (verified) on the donor registry were 2.52 times higher than those in the control group.
Discussion: The use of peer mentors to discuss donating organs after death with individuals on dialysis can increase enrollment on a donor registry. Dispelling myths about chronic illness and donation can counter widely held misconceptions and help persons make an informed choice about end-of-life decisions and present an opportunity to increase the number of organs and tissues available for transplant.
Context: Uremic pruritus (UP) affects up to half of all patients with kidney disease and has been independently associated with poor patient outcomes. UP is a challenging symptom for clinicians to manage as there are no validated guidelines for its treatment.
Objectives: The study aimed to develop and validate an algorithm and patient information toolkit for the treatment of UP in patients with kidney disease.
Methods: The study involved a literature search and development of an initial draft algorithm, followed by content and face validation of this algorithm. Validation entailed three rounds of interviews with six nephrology clinicians per round. Participants assessed the relevance of each component of the algorithm and then rated a series of statements on a scale of 1-5 to assess face validity of the algorithm. After each round, the content validity index (CVI) of each algorithm component was calculated, and the algorithm was revised by the study team in response to findings. This process was followed by a second study that developed and validated a patient information pamphlet and video.
Results: Algorithm validation participants were affiliated with three institutions and included seven physicians, four registered nurses, three nurse practitioners, three pharmacists, and a dietician. The average CVI of the algorithm components across all three rounds was 0.89, with 0.80 commonly cited as the lower acceptable limit for content validation. More than 78% of participants rated each face validity statement as “Agree” or “Strongly Agree”. For the patient information tools, five clinicians and 15 patients were included in validation. The average CVI was 1.00 for both tools, and the average face validity was 92%.
Conclusion: A treatment algorithm and patient information toolkit for managing UP in patients with kidney disease were developed and validated through expert review. Further research will be conducted on implementation of the treatment algorithm and evaluating patient-reported outcomes.
Context: Patients with end-stage renal disease undergoing dialysis experience multiple concurrent symptoms. These symptoms cluster together and have negative impacts on patient outcomes. However, information on changes in symptom clusters over time is limited.
Objectives: This longitudinal study examined the stability of symptom clusters and their impacts on health-related quality of life and functional status over a period of one year.
Methods: Eligibility criteria were patients diagnosed with end-stage renal disease; had received dialysis consecutively for at least three months; and had given written informed consent. Dialysis Symptom Index, Kidney Disease Quality of Life 36, and Karnofsky Performance Status Scale were used to evaluate the impacts of symptom clusters and outcomes. Exploratory factor analyses and multiple regression analyses were used to determine symptom clusters and their associations with patient outcomes.
Results: Among the 354 recruited patients, 271 completed the 12-month assessment. Four symptom clusters were identified across the three assessments, namely, uremic, gastrointestinal, skin, and emotional. Within each cluster, the specific symptoms were varied. The uremic symptom cluster accounted for the largest amount of variability. Across the three assessments, a higher uremic cluster factor score was associated with poorer physical well-being, whereas a higher emotional cluster factor score was consistently associated with poorer mental well-being.
Conclusion: Symptoms in patients on dialysis clustered in relatively stable patterns. The four symptom clusters identified had consistent negative effects on various aspects of patients' well-being. Our findings suggest the need for ongoing symptom assessment and early recognition of symptoms that may contribute to adverse patient outcomes.
Introduction: The End of Life Care in Advanced Kidney Disease Framework suggests that renal units should create a renal supportive care register (RSCR) to promote consistent communication with patients and to encourage advance care planning. The aim of the RSCR at Birmingham Heartlands Hospital is to identify patients who are requiring dialysis with a prognosis of less than 12 months. This work aims to explore whether patients were identified appropriately on the RSCR, and if conversations around withdrawal of dialysis and end of life took place.
Methods: We reviewed the inpatient and outpatient consultations of patients who died while listed on the RSCR between 1 January 2016 and 31 December 2018. We recorded the dates when patients were added to the RSCR and when they died. We reviewed conversations around dialysis withdrawal and events at the end of life.
Results and discussion: Data from Proton, the renal team’s coding system, showed that there were 80 deaths of patients listed on the RSCR: 59% were male, 41% were female. The median age at death was 77.5 years (interquartile range (IQR) 12.25 years). Thirty-eight per cent of these patients had an alert on Concerto, the hospital’s main electronic system, informing users that the patient was on the RSCR.
Eighty-eight per cent of patients were listed on the RSCR within 12 months of death; 69% of these were listed on the day they died. For the remaining patients who were listed on the register, Fig 1 illustrates that the median time to death from being placed on the register was 1.75 months (IQR 7.54 months).
Thirty-eight per cent of patients were offered a conversation on withdrawal of dialysis; 70% of these then opted to withdraw. Cited reasons for continuing dialysis after these conversations were families’ refusal to accept palliation and denial. Of those who did not have dialysis formally withdrawn prior to death, there were reports of dialysis being withheld due to low blood pressure and patients being too unwell to come in from home for dialysis.
Eighty-seven per cent had valid ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) forms. Two patients who did not have DNACPR forms received CPR (without return of spontaneous circulation) on the day of their death in hospital. Preferred place of death (PPD) was established in 20% of patients (Fig 2). While the majority of patients asked chose their PPD as home, 65% of patients on the RSCR died in hospital.
We recommend that all patients on the RSCR should have alerts placed on Concerto. This would ensure that the wider hospital, who may not know the patient as well as the renal team, are prompted to think about advance care planning. The literature reinforces that alerts can improve healthcare professionals’ engagement with conversations around resuscitation.2
Conclusion: Our data suggests that the deterioration of these patients may have been unrecognised. While some deaths are likely to be unexpected, we are missing opportunities to engage patients with end-stage renal disease in advance care planning.
Context: Universal screening to identify vulnerable patients who may receive limited benefits from life-sustaining treatments can facilitate palliative care in dialysis populations.
Objectives: We aimed to develop prediction models for 1-year mortality in peritoneal dialysis patients.
Methods: This prospective cohort study included 401 adult Taiwanese prevalent peritoneal dialysis patients (average age 56.2 ± 14 years). In addition to obtaining clinical characteristics and laboratory data, the primary care nurses evaluated the “surprise question” and “palliative care screening tool” for each patient in March 2015. Multivariate logistic regression models were conducted to predict the primary outcome of 1-year all-cause mortality.
Results: There were 34 (8.5%) patients who died during the first year of follow-up. Patients allocated to the “not surprised” group according to the surprise question and those who received a score = 4 on the palliative care screening tool had increased odds of death [odds ratio 24.68 (95% CI 10.66 - 57.13) and 12.18 (95% CI 5.66 - 26.21), respectively]. We also developed a clinical risk model for 1-year mortality that included sex, dialysis vintage, coronary artery disease, malignancy, normalized protein nitrogen appearance, white blood cell count, and serum albumin and sodium levels. Integrating the surprise question, palliative care screening tool, and clinical risk model exhibited good discrimination with an area under the receiver operating characteristic curve of 0.95. Kaplan-Meier analysis showed worse survival in high risk patients predicted by the integrated model (log-rank P<.001).
Conclusion: screening with the use of the integrated measurement can identify high-risk peritoneal dialysis patients. This approach may facilitate palliative care interventions for at-risk the subpopulations.
Background: Renal failure is a chronic disease that can seriously affect quality of life (QOL). Health-Related QOL represents the physical, psychological, and social domains of health that are influenced by a person's experience, beliefs, expectations, and perceptions. The aim of this study is to explore QOL of Stage 5 chronic kidney disease (CKD) patients on maintenance hemodialysis (MHD) in South India.
Materials and Methods: This was a cross-sectional observational study conducted among patients with CKD undergoing MHD at 11 major centers in South India. Demographic data were collected using a predesigned questionnaire. QOL index was measured using the 26-item WHOQOL-BREF questionnaire, and statistical analysis was carried out using the SPSS version 24 (Academy of Medical Sciences, Kannur, Kerala, India).
Results: Five hundred and three patients undergoing MHD were enrolled, and the following QOL scores were recorded: social relationship (51.65 ± 21.03), environmental (46.91 ± 19.29), psychological (41.07 ± 20.30), and physical health (40.17 ± 17.05). QOL of patients declined with aging in all four domains. Being male, younger, educated, and unmarried appeared to have a favorable effect on several aspects of patients' QOL.
Conclusion: The evaluation of QOL in CKD patients undergoing hemodialysis showed that it was relatively compromised. Because the patients had a chronic, progressive irreversible disease, the most affected was physical domain. Age, education, employment, and marital status were found to affect one or more domains of QOL. Age and education are significant independent variables; as the age increases, QOL decreases, and higher the education better the QOL.
BACKGROUND: Associations of demographic factors with elective dialysis withdrawal and setting of death, patterns of illness trajectories preceding death, and how illness trajectories, particularly worsening putative disability, are associated with elective withdrawal are poorly understood.
METHODS: Using United States Renal Data System data, we performed a case-control analysis of hemodialysis patients who died in 2010-2015. A disability proxy score characterized disability; logistic regression identified characteristics associated with death from withdrawal and with death setting; and group-based trajectory models characterized the trajectory of disability in the months preceding death.
RESULTS: We identified 14,571 (9.2%) patients who withdrew and 144,305 (90.8%) who died of a non-withdrawal cause. Women were more likely than men to withdraw (OR 1.19, 95% CI 1.15-1.24). The most rural patients were more likely to withdraw than the most urban (OR 1.37, 95% CI 1.25-1.50). Medicaid coverage (a marker for impoverishment) was associated with less withdrawal (OR 0.90, 95% CI 0.86-0.94). Disability proxy score was strongly related to withdrawal: the OR for patients in the highest score category was 31.16 (95% CI 28.40-34.20) versus those with a score of 0. Women and whites (vs. blacks) were overrepresented in the worst, versus better, proxy disability score trajectory. In-hospital death and death in the intensive care unit were more common in women and minorities than in men and whites, but less common in the most rural patients.
CONCLUSIONS: Important differences separate patients who electively withdraw from those who die of non-withdrawal causes. Worsening disability, in particular, may be a marker for withdrawal.
Background: Lack of awareness about the life-limiting nature of renal failure is a significant barrier to palliative care for older adults with end-stage renal disease.
Objective: To train nephrologists to use the best case/worst case (BC/WC) communication tool to improve shared decision making about dialysis initiation for older patients with limited life expectancy.
Design: This is a pre-/postinterventional pilot study.
Setting/Subjects: There were 16 nephrologists and 30 patients of age 70 years and older with estimated glomerular filtration rate (eGFR) <20 mL/min per 1.73 m2 in outpatient nephrology clinics, in Madison, WI.
Measurements: Performance of tool elements, content of communication about dialysis, shared decision making, acceptability of the intervention, decisions to pursue dialysis, and palliative care referrals were measured.
Results: Fifteen of 16 nephrologists achieved competence performing the BC/WC tool with standardized patients, executing at least 14 of 19 items. Nine nephrologists met with 30 patients who consented to audio record their clinic visit. Before training, clinic visits focused on laboratory results and preparation for dialysis. After training, nephrologists noted that declining kidney function was “bad news,” presented dialysis and “no dialysis” as treatment options, and elicited patient preferences. Observer-measured shared decision-making (OPTION 5) scores improved from a median of 20/100 (interquartile range [IQR] 15–35) before training to 58/100 (IQR 55–65). Patients whose nephrologist used the BC/WC tool were less likely to make a decision to initiate dialysis and were more likely to be referred to palliative care.
Conclusions: Nephrologists can learn to use the BC/WC tool with older patients to improve shared decision making about dialysis, which may increase access to palliative care.
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.