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BACKGROUND: For older adults with kidney failure who are not referred for transplant, medical management is an alternative to dialysis. OBJECTIVE: To compare survival and home time between older adults who started dialysis at an estimated glomerular filtration rate (eGFR) less than 12 mL/min/1.73 m2 and those who continued medical management. DESIGN: Observational cohort study using target trial emulation. SETTING: U.S. Department of Veterans Affairs, 2010 to 2018. PARTICIPANTS: Adults aged 65 years or older with chronic kidney failure and eGFR below 12 mL/min/1.73 m2 who were not referred for transplant. INTERVENTION: Starting dialysis within 30 days versus continuing medical management. MEASUREMENTS: Mean survival and number of days at home. RESULTS: Among 20 440 adults (mean age, 77.9 years [SD, 8.8]), the median time to dialysis start was 8.0 days in the group starting dialysis and 3.0 years in the group continuing medical management. Over a 3-year horizon, the group starting dialysis survived 770 days and the group continuing medical management survived 761 days (difference, 9.3 days [95% CI, -17.4 to 30.1 days]). Compared with the group continuing medical management, the group starting dialysis had 13.6 fewer days at home (CI, 7.7 to 20.5 fewer days at home). Compared with the group continuing medical management and forgoing dialysis completely, the group starting dialysis had longer survival by 77.6 days (CI, 62.8 to 91.1 days) and 14.7 fewer days at home (CI, 11.2 to 16.5 fewer days at home). LIMITATION: Potential for unmeasured confounding due to lack of symptom assessments at eligibility; limited generalizability to women and nonveterans. CONCLUSION: Older adults starting dialysis when their eGFR fell below 12 mL/min/1.73 m2 who were not referred for transplant had modest gains in life expectancy and less time at home. PRIMARY FUNDING SOURCE: U.S. Department of Veterans Affairs and National Institutes of Health.
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RATIONALE & OBJECTIVE: Available decision aids for patients about treatment of advanced chronic kidney disease (CKD) often lack information on conservative kidney management (CKM). We assessed the feasibility and acceptability of a decision aid on CKM among patients with advanced CKD and their family members. STUDY DESIGN: Randomized pilot trial. SETTING & PARTICIPANTS: Patients aged≥75 years with stage 4 or 5 CKD and their family members at 4 medical centers in the greater Seattle area between August 2020 and December 2021. INTERVENTIONS: Usual care with or without a decision aid on CKM. OUTCOME: Acceptability was assessed by attrition rates between the initial study visit (T1) and the 3-month follow-up evaluation (T3). The primary outcome and measure of feasibility was the proportion of participants who discussed CKM with a health care provider between T1 and T3. RESULTS: We randomized 92 patients of whom 86 (55.8% male; age 82±6 years; 82.6% White) completed T1-42 in the usual care arm and 44 in the usual care plus decision aid arm-and 56 family members of whom 53 (18.9% male; age 71±11 years; 86.8% White) completed T1-20 in usual care arm and 33 in the usual care plus decisions aid arm. The attrition rates were 21% versus 21% (P=1.0) for patients, and 10% versus 18% (P=0.46) for family members in the usual care versus usual care plus decisions aid arms. Receipt of the decision aid significantly increased discussion of CKM with a health care provider for patients (26.4% vs 3.0%, P=0.007) and family members (26.9% vs 0, P=0.02). LIMITATIONS: Possible limited generalizability because participants were a relatively homogenous group. The decision aid focuses on CKM and may be less applicable to those with limited knowledge of kidney replacement therapies. CONCLUSIONS: A CKM decision aid was feasible and acceptable, and increased discussion of this treatment option with health care providers. This aid may serve as a useful adjunct to the currently available educational tools on treatments for advanced CKD. FUNDING: Grant from a not-for-profit entity (National Palliative Care Research Center). TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT04919941.
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Técnicas de Apoio para a Decisão , Insuficiência Renal Crônica , Humanos , Masculino , Feminino , Projetos Piloto , Insuficiência Renal Crônica/terapia , Cuidados Paliativos , RimRESUMO
RATIONALE & OBJECTIVE: Greater understanding of the challenges to shared decision making about treatment of advanced chronic kidney disease (CKD) is needed to support implementation of shared decision making in clinical practice. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Patients aged≥65 years with advanced CKD and their clinicians recruited from 3 medical centers participated in semi-structured interviews. In-depth review of patients' electronic medical records was also performed. ANALYTICAL APPROACH: Interview transcripts and medical record notes were analyzed using inductive thematic analysis. RESULTS: Twenty-nine patients (age 73±6 years, 66% male, 59% White) and 10 of their clinicians (age 52±12 years, 30% male, 70% White) participated in interviews. Four themes emerged from qualitative analysis: (1) competing priorities-patients and their clinicians tended to differ on when to prioritize CKD and dialysis planning above other personal or medical problems; (2) focusing on present or future-patients were more focused on living well now while clinicians were more focused on preparing for dialysis and future adverse events; (3) standardized versus individualized approach to CKD-although clinicians tried to personalize care recommendations to their patients, the patients perceived their clinicians as taking a monolithic approach to CKD that was predicated on clinical practice guidelines and medical literature rather than the patients' lived experiences with CKD and personal values and goals; and (4) power dynamics-patients described cautiously navigating a power differential in their therapeutic relationship with their clinicians whereas clinicians seemed less attuned to these power dynamics. LIMITATIONS: Thematic saturation was based on patient interviews. Themes presented might incompletely reflect clinicians' perspectives. CONCLUSIONS: Efforts to improve shared decision making for treatment of advanced CKD will likely need to explicitly address differences between patients and their clinicians in approaches to decision making about treatment of advanced CKD and perceived power imbalances in the therapeutic relationship.
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Tomada de Decisão Compartilhada , Insuficiência Renal Crônica , Tratamento Conservador , Tomada de Decisões , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Diálise Renal , Insuficiência Renal Crônica/terapiaRESUMO
BACKGROUND: Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD). OBJECTIVE: To understand the prognostic information preferences expressed by older patients with CKD. DESIGN AND PARTICIPANTS: Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic. APPROACH: Semi-structured telephone or in-person interviews to explore patients' preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis. KEY RESULTS: We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation. CONCLUSION: Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.
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Falência Renal Crônica , Insuficiência Renal Crônica , Tomada de Decisões , Feminino , Humanos , Falência Renal Crônica/terapia , Masculino , Prognóstico , Pesquisa Qualitativa , Diálise Renal , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapiaRESUMO
RATIONALE & OBJECTIVE: Little is known about perceptions of conservative care among patients with advanced kidney disease in the United States. STUDY DESIGN: Qualitative study using cognitive interviewing about attitudes regarding conservative care using decision aids on treatments for advanced kidney disease developed outside the United States. SETTING & PARTICIPANTS: 14 patients 75 years or older with advanced kidney disease, defined as estimated glomerular filtration rate≤20mL/min/1.73m2 and not receiving maintenance dialysis, and 6 of their family members. ANALYTICAL APPROACH: Thematic analysis of participants' reactions to descriptions of conservative care taken from various clinical care decision aids. RESULTS: Participants were mostly White (n=15) and had at least some college education (n=16). Four themes emerged from analysis of interviews: (1) core elements of conservative care: aspects of conservative care that were appealing to participants included a whole-person, team-based, and structured approach to care that focused on symptom management, maintaining current lifestyle, and managing health setbacks; (2) importance of how conservative care is framed: participants were more receptive to conservative care when this was framed as an active rather than passive treatment approach and were receptive to statements of uncertainty about future course of illness and prognosis; (3) an explicit approach to shared decision making: participants believed decisions about conservative care and dialysis should address considerations about risk and benefits of treatment options, family and clinician perspectives, and patients' goals, values, and preferences; and (4) relationship between conservative care and dialysis: although conservative care models outside the United States are generally intended to serve as an alternative to dialysis, participants' comments implied that they did not see conservative care and dialysis as mutually exclusive. LIMITATIONS: Themes identified may not generalize to the broader population of US patients with advanced kidney disease and their family members. CONCLUSIONS: Participants were favorably disposed to a whole-person multidisciplinary approach to conservative care, especially when framed as an active treatment approach. Models of conservative care excluding the possibility of dialysis were less embraced, suggesting that current models will require adaptation to meet the needs of US patients and their families.
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Atitude Frente a Saúde , Tratamento Conservador , Família , Falência Renal Crônica/terapia , Idoso , Idoso de 80 Anos ou mais , Técnicas de Apoio para a Decisão , Atenção à Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente , Pesquisa Qualitativa , Qualidade de Vida , Diálise Renal , Estados UnidosRESUMO
BACKGROUND: Patients with advanced kidney disease are less likely than many patients with other types of serious illness to enroll in hospice. Little is known about real-world clinical decision-making related to hospice for members of this population. METHODS: We used a text search tool to conduct a thematic analysis of documentation pertaining to hospice in the electronic medical record system of the Department of Veterans Affairs, for a national sample of 1000 patients with advanced kidney disease between 2004 and 2014 who were followed until October 8, 2019. RESULTS: Three dominant themes emerged from our qualitative analysis of the electronic medical records of 340 cohort members with notes containing hospice mentions: (1) hospice and usual care as antithetical care models: clinicians appeared to perceive a sharp demarcation between services that could be provided under hospice versus usual care and were often uncertain about hospice eligibility criteria. This could shape decision-making about hospice and dialysis and made it hard to individualize care; (2) hospice as a last resort: patients often were referred to hospice late in the course of illness and did not so much choose hospice as accept these services after all treatment options had been exhausted; and (3) care complexity: patients' complex care needs at the time of hospice referral could complicate transitions to hospice, stretch the limits of home hospice, and promote continued reliance on the acute care system. CONCLUSIONS: Our findings underscore the need to improve transitions to hospice for patients with advanced kidney disease as they approach the end of life.
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Cuidados Paliativos na Terminalidade da Vida , Falência Renal Crônica/terapia , Veteranos , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Tomada de Decisão Clínica , Registros Eletrônicos de Saúde , Definição da Elegibilidade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Transferência de Pacientes , Pesquisa Qualitativa , Diálise RenalRESUMO
RATIONALE & OBJECTIVE: It is relatively unusual for US patients with advanced chronic kidney disease (CKD) to forgo initiation of maintenance dialysis. Our objective was to describe practice approaches of US nephrologists who have provided conservative care for members of this population. STUDY DESIGN: Qualitative study using semi-structured interviews. SETTING & PARTICIPANTS: A national sample of 21 nephrologists experienced in caring for patients with advanced CKD who decided not to start dialysis. ANALYTICAL APPROACH: Grounded theory methods to identify dominant themes reflecting nephrologists' experiences with and approaches to conservative care for patients with advanced CKD. RESULTS: Nephrologists who participated in this study were primarily from academic practices (n=14) and urban areas (n=15). Two prominent themes emerged from qualitative analysis reflecting nephrologists' experiences with and approaches to conservative care: (1) person-centered practices, which described a holistic approach to care that included basing treatment decisions on what mattered most to individual patients, framing dialysis as an explicit choice, being mindful of sources of bias in medical decision making, and being flexible to the changing needs, values, and preferences of patients; and (2) improvising a care infrastructure, which described the challenges of managing patients conservatively within health systems that are not optimally configured to support their needs. Participating nephrologists described cobbling together resources, assuming a range of different health care roles, preparing patients to navigate health systems in which initiation of dialysis served as a powerful default, and championing the principles of conservative care among their colleagues. LIMITATIONS: The themes identified likely are not generalizable to most US nephrologists. CONCLUSIONS: Insights from a select group of US nephrologists who are early adopters of conservative care signal the need for a stronger cultural and health system commitment to building care models capable of supporting patients who choose to forgo dialysis.
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Competência Clínica , Tomada de Decisão Clínica , Tratamento Conservador/normas , Falência Renal Crônica/terapia , Nefrologistas/normas , Pesquisa Qualitativa , Diálise Renal/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Diálise Renal/normas , Estados UnidosRESUMO
BACKGROUND: Understanding ethical concerns that arise in the care of patients with advanced kidney disease may help identify opportunities to support medical decision-making. OBJECTIVE: To describe the clinical contexts and types of ethical concerns that arise in the care of patients with advanced kidney disease. DESIGN: Retrospective cohort study. PARTICIPANTS: A total of 28,568 Veterans with advanced kidney disease between 2000 and 2009 followed through death or 2011. EXPOSURE: Clinical scenarios that prompted clinicians to consider an ethics consultation as documented in the medical record. MAIN MEASURES: Dialysis initiation, dialysis discontinuation, receipt of an intensive procedure during the final month of life, and hospice enrollment. KEY RESULTS: Patients had a mean age of 67.1 years, and the majority were male (98.5%) and white (59.0%). Clinicians considered an ethics consultation for 794 patients (2.5%) over a median follow-up period of 2.7 years. Ethical concerns involved code status (37.8%), dialysis (54.5%), other invasive treatments (40.6%), and noninvasive treatments (61.1%) and were related to conflicts between patients, their surrogates, and/or clinicians about treatment preferences (79.3%), who had authority to make healthcare decisions (65.9%), and meeting the care needs of patients versus obligations to others (10.6%). Among the 20,583 patients who died during follow-up, those for whom clinicians had considered an ethics consultation were less likely to have been treated with dialysis (47.6% versus 62.0%, adjusted odds ratio [aOR] 0.63, 95% CI 0.53-0.74), more likely to have discontinued dialysis (32.5% versus 20.9%, aOR 2.07, CI 1.61-2.66), and less likely to have received an intensive procedure in the last month of life (8.9% versus 18.9%, aOR 0.41, CI 0.32-0.54) compared with patients without documentation of clinicians having considered consultation. CONCLUSIONS: Clinicians considered an ethics consultation for patients with advanced kidney disease in situations of conflicting preferences regarding dialysis and other intensive treatments, especially when these treatments were not pursued.
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Cuidados Paliativos na Terminalidade da Vida , Nefropatias , Assistência Terminal , Idoso , Feminino , Humanos , Masculino , Diálise Renal , Estudos RetrospectivosRESUMO
BACKGROUND: Older adults with advanced non-dialysis-dependent chronic kidney disease (NDD-CKD) face a high risk of hospitalization and related adverse events. METHODS: This prospective cohort study followed nephrology clinic patients ≥60 years old with NDD-CKD stages 4-5. After an eligible patient's office visit, study staff asked the patient's provider to rate the patient's risk of death within the next year using the surprise question ("Would you be surprised if this patient died in the next 12 months?") with a 5-point Likert scale response (1, "definitely not surprised" to 5, "very surprised"). We used a statewide database to ascertain hospitalization during follow-up. RESULTS: There were 488 patients (median age 72 years, 51% female, 17% black) with median estimated glomerular filtration rate 22 mL/min/1.73 m2. Over a median follow-up of 2.1 years, the rates of hospitalization per 100 person-years in the respective response groups were 41 (95% confidence interval [CI]: 34-50), "very surprised"; 65 (95% CI: 55-76), "surprised"; 98 (95% CI: 85-113), "neutral"; 125 (95% CI: 107-144), "not surprised"; and 120 (95% CI: 94-151), "definitely not surprised." In a fully adjusted cumulative probability ordinal regression model for proportion of follow-up time spent hospitalized, patients whose providers indicated that they would be "definitely not surprised" if they died spent a greater proportion of follow-up time hospitalized compared with those whose providers indicated that they would be "very surprised" (odds ratio 2.4, 95% CI: 1.0-5.7). There was a similar association for time to first hospitalization. CONCLUSION: Nephrology providers' responses to the surprise question for older patients with advanced NDD-CKD were independently associated with proportion of future time spent hospitalized and time to first hospitalization. Additional studies should examine how to use this information to provide patients with anticipatory guidance on their possible clinical trajectory and to target potentially preventable hospitalizations.
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Hospitalização/estatística & dados numéricos , Nefrologistas/estatística & dados numéricos , Insuficiência Renal Crônica/mortalidade , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Taxa de Filtração Glomerular , Humanos , Masculino , Razão de Chances , Estudos Prospectivos , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapia , Medição de Risco/métodos , Medição de Risco/estatística & dados numéricos , Índice de Gravidade de Doença , Inquéritos e Questionários/estatística & dados numéricos , Fatores de TempoRESUMO
This Core Curriculum article models a person-centered approach to care for older adults with kidney disease. We provide background information on the principles of person-centered care and outline ways in which this approach contrasts with the more disease-based approaches that dominate current medical education and practice. Using hypothetical cases, we discuss 3 clinical scenarios that arise commonly when caring for older adults with kidney disease: (1) a moderate reduction in estimated glomerular filtration rate, (2) new-onset nephrotic-range proteinuria, and (3) the prospect of starting dialysis. For each scenario, we summarize relevant available evidence and model what a person-centered approach might look like. In discussing each scenario, we highlight: (1) the considerable heterogeneity in clinical presentation, circumstances, priorities, and values that exist among older adults with kidney disease; (2) the importance of interpreting available evidence and clinical practice guidelines in the context of what is relevant to each patient; (3) methods for grounding discussions about care and treatment options in the realities of each patient's situation and what is most meaningful to them; and (4) the importance of setting aside one's own biases and practice style to ensure that patients' own values and goals guide their care.
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Geriatria , Nefrologia , Assistência Centrada no Paciente , Insuficiência Renal Crônica/terapia , Idoso , Currículo , Geriatria/educação , Geriatria/métodos , Humanos , Nefrologia/educação , Nefrologia/métodos , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/tendênciasRESUMO
BACKGROUND: Little is known about patterns of end-of-life care for patients with advanced kidney disease not treated with maintenance dialysis. STUDY DESIGN: Case series. SETTING & PARTICIPANTS: A sample of 14,071 patients with sustained estimated glomerular filtration rates < 15mL/min/1.73m2 treated in the US Veterans Affairs health care system who died during 2000 to 2011. Before death, 12,756 of these patients had been treated with dialysis, 503 had been discussing and/or preparing for dialysis therapy, and for 812, there had been a decision not to pursue dialysis therapy. OUTCOMES: Hospitalization and receipt of an intensive procedure during the final month of life, in-hospital death, and palliative care consultation and hospice enrollment before death. RESULTS: Compared with decedents treated with dialysis, those for whom a decision not to pursue dialysis therapy had been made were less often hospitalized (57.3% vs 76.8%; OR, 0.40 [95% CI, 0.34-0.46]), less often the recipient of an intensive procedure (3.5% vs 24.6%; OR, 0.15 [95% CI, 0.10-0.22]), more often the recipient of a palliative care consultation (52.6% vs 21.6%; OR, 4.19 [95% CI, 3.58-4.90]), more often used hospice services (38.7% vs 18.2%; OR, 3.32 [95% CI, 2.83-3.89]), and died less frequently in a hospital (41.4% vs 57.3%; OR, 0.78 [95% CI, 0.74-0.82]). Hospitalization (55.5%; OR, 0.39 [95% CI, 0.32-0.46]), receipt of an intensive procedure (13.7%; OR, 0.60 [95% CI, 0.46-0.77]), and in-hospital death (39.0%; OR, 0.47 [95% CI, 0.39-0.56]) were also less common among decedents who had been discussing and/or preparing for dialysis therapy, but their use of palliative care and hospice services was similar. LIMITATIONS: Findings may not be generalizable to groups not well represented in the Veterans Affairs health care system. CONCLUSIONS: Among decedents, patients not treated with dialysis before death received less intensive patterns of end-of-life care than those treated with dialysis. Decedents for whom there had been a decision not to pursue dialysis therapy before death were more likely to receive palliative care and hospice.
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Falência Renal Crônica/mortalidade , Falência Renal Crônica/terapia , Assistência Terminal/métodos , Assistência Terminal/tendências , United States Department of Veterans Affairs/tendências , Veteranos , Idoso , Idoso de 80 Anos ou mais , Feminino , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Estudos Retrospectivos , Estados Unidos/epidemiologiaRESUMO
Little is known about the circumstances under which older adults initiate chronic dialysis and subsequent outcomes. Using national registry data, we conducted a retrospective analysis of 416,657 Medicare beneficiaries aged ≥67 years who initiated chronic dialysis between January 1995 and December 2008. Our goal was to define the relationship between health care intensity around the time of dialysis initiation and subsequent survival and patterns of hospitalization, use of intensive procedures (mechanical ventilation, feeding tube placement, and cardiopulmonary resuscitation), and discontinuation of dialysis before death. We found that most patients (64.5%) initiated dialysis in the hospital, including 36.6% who were hospitalized for ≥2 weeks and 7.4% who underwent one or more intensive procedures. Compared with patients who initiated dialysis in the outpatient setting, those who received the highest intensity of care at dialysis initiation (those hospitalized ≥2 weeks and receiving at least one intensive procedure) had a shorter median survival (0.7 versus 2.1 years; P<0.001), spent a greater percentage of remaining follow-up time in the hospital (median, 22.9% versus 3.1%; P<0.001), were more likely to undergo subsequent intensive procedures (44.9% versus 26.0%; adjusted hazard ratio, 2.33; 95% confidence interval [CI], 2.27 to 2.39), and were less likely to have discontinued dialysis before death (19.1% versus 26.2%; adjusted odds ratio, 0.68; 95% CI, 0.65 to 0.72). In conclusion, most older adults initiate chronic dialysis in the hospital. Those who have a prolonged hospital stay and receive other forms of life support around the time of dialysis initiation have limited survival and more intensive patterns of subsequent healthcare utilization.
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Diálise Renal , Idoso , Idoso de 80 Anos ou mais , Reanimação Cardiopulmonar , Estudos de Coortes , Nutrição Enteral , Feminino , Hospitalização , Humanos , Falência Renal Crônica/mortalidade , Falência Renal Crônica/terapia , Tempo de Internação , Masculino , Medicare , Sistema de Registros , Respiração Artificial , Estudos Retrospectivos , Índice de Gravidade de Doença , Estados Unidos/epidemiologiaRESUMO
Advanced kidney disease is a progressive life-limiting illness associated with high symptom burden, disability, and highly intensive care near the end of life. There is growing interest in integrating palliative care principles into the care of patients with advanced kidney disease to improve care and outcomes for these patients. The United States (US) Department of Veterans Affairs (VA) has been a leader in advancing palliative care initiatives across its health system and whose experience and approach may be instructive to other health systems seeking to develop kidney palliative care (KPC) services. Herein, we review current KPC programs in the VA and highlight the different models of care that programs have been adopted and how key components of goals of care conversations and advance care planning, symptom management, multidisciplinary care, patient selection, and quality improvement have been implemented across programs. VA KPC programs have adopted "parallel", "merged", and "embedded" models of KPC that reflect the different configurations of partnerships between nephrology and palliative care providers to deliver KPC. A primary service of VA KPC programs is providing goals of care conversations and advance care planning to referred patients and systematically documenting the outcomes of these discussions in standardized note templates in the electronic medical record. Symptom management is delivered by KPC providers through regular shared or sequential visits with patients' nephrology providers and is guided by patient responses to validated symptom surveys. Programs are staffed by allied health professionals, such as chaplains, pharmacists, social workers, and dieticians, to provide whole-person care and regularly huddle with nephrology staff to reach a shared understanding of each patient's care needs and plan. KPC programs implement champions who select patients in greatest need of KPC using a combination of clinical events that trigger referral for KPC and validated mortality risk prediction scores that are automatically generated in each patient's medical record. KPC programs also routinely collect clinical, patient-reported, process, and care quality measures to assess its services. The experiences of the VA highlight novel approaches that strive to close the care gaps in meeting the KPC needs of patients with advanced kidney disease.
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Cuidados Paliativos , United States Department of Veterans Affairs , Humanos , Estados Unidos , United States Department of Veterans Affairs/organização & administração , Planejamento Antecipado de Cuidados/organização & administração , Falência Renal Crônica/terapiaRESUMO
BACKGROUND: Many nephrology providers express difficulty in discussing care options for patients who forgo kidney replacement therapy (KRT), which hampers their ability to help patients make decisions about their current and future treatment of kidney disease. METHODS: We conducted a qualitative study using interviews with a national sample of nephrology providers (i.e., physicians and advanced practice providers) who participated in US professional societies between July and December 2022. We performed a thematic analysis of interviews to identify emergent themes reflecting providers' experiences discussing care for patients who forgo KRT. RESULTS: There were 21 providers (age 54±13years, female 81%, White 32%) who participated in interviews, of which 43% were physicians and most (57%) practiced in academic settings. Three dominant themes emerged from interviews: 1) Inconsistent terminology: while providers sought to use terms to describe care for patients who forgo KRT that affirmed patients' decision, clearly conveyed that KRT would not be pursued, and were familiar to patients and other providers, they disagreed about which terms satisfied these priorities; 2) Blurred distinctions between KRT and its alternative: providers' descriptions of their care practices suggested that differences in their approaches to caring for patients who forgo KRT and those who are planning to pursue KRT could be opaque; and, 3) Deciphering patients' decision to forgo KRT: providers did not readily accept patients' expressed preferences to forgo KRT at face value and described using a variety of methods to assess whether patients would follow through with their decision. CONCLUSIONS: Providers used different, inconsistent terms to describe care for patients who forgo KRT. They disagreed about what this care entailed and were uncertain about what patients might mean when they express not wanting to undergo KRT.
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Nearly half of the persons receiving dialysis in the United States are aged 65 years or older. Kidney failure occurs most frequently in older adults, and typically triggers a discussion regarding dialysis treatment. In this Special Article, we describe the journey of Mr. Howard Russell, an older adult who experienced kidney failure and underwent dialysis. Using the experience of Mr. Russell, we illustrate the complexity of dialysis decision-making, including how disease trajectory and health policy can potentially impede older adults from achieving "what matters." Our intent is to provide guidance regarding these barriers and support to clinicians who are sharing similar journeys with older adults making decisions about dialysis. Based on Mr. Russell's journey, we suggest that when discussing dialysis with an older adult, four points be considered: (1) recognize if dialysis is needed long-term; (2) understand what matters for the older adult; (3) sync the treatment plan when what matters changes; and (4) set up with resources for kidney failure, which is limited but evolving.