RESUMO
Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings.
Assuntos
Prestação Integrada de Cuidados de Saúde , Insuficiência Renal Crônica , Insuficiência Renal , Humanos , Rim , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapia , Tratamento ConservadorRESUMO
RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.
Assuntos
Cuidados Paliativos na Terminalidade da Vida , Transplante de Rim , Assistência Terminal , Humanos , Estados Unidos , Cuidados Paliativos/métodos , Assistência Terminal/métodos , AloenxertosRESUMO
The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
Assuntos
Falência Renal Crônica/terapia , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/métodos , Qualidade de Vida , Diálise Renal , Humanos , Estados UnidosRESUMO
Kidney supportive care is the application of palliative medicine principles and practices to patients with kidney disease. The goal is alleviation of suffering through treatment of symptoms, empathic communication, and support for psychosocial distress. Kidney supportive care includes primary palliative care provided by nephrology teams, as well as referral of patients with complex distress for comanagement by an interprofessional specialty palliative care team, when available. The team may include physicians, nurses, social workers, chaplains, and dieticians. Comanagement with nephrologists offers an additional layer of support to patients and families as prognostic awareness, patient preferences, and care decisions are explored. Kidney supportive care can be offered to patients experiencing acute kidney injury or chronic kidney disease, including those with kidney failure treated by kidney replacement therapy (dialysis and transplantation). Kidney supportive care includes but is not limited to end-of-life care. This installment of the Core Curriculum in Nephrology outlines several practical applications of kidney supportive care, with a focus on the nephrologist's approach to symptom management, active medical management of kidney failure without dialysis (also known as comprehensive conservative care), acute kidney injury in seriously ill patients, and withdrawal from dialysis.
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Falência Renal Crônica/terapia , Nefrologia/educação , Cuidados Paliativos , Fatores Etários , Comorbidade , Congressos como Assunto , Currículo , Tomada de Decisão Compartilhada , Objetivos , Hospitais para Doentes Terminais , Humanos , Internacionalidade , Equipe de Assistência ao Paciente , Qualidade de VidaRESUMO
Moral distress occurs when individuals are unable to act in accordance with what they believe to be ethically correct or just. It results from a discrepancy between a clinician's perception of "the right thing to do" and what is actually happening and is perpetuated by perceived constraints that limit the individual from speaking up or enacting change. Moral distress is reported by many clinicians in caring for patients with serious illness, including chronic kidney disease and kidney failure. If left unidentified, unexpressed, or unaddressed, moral distress may cause burnout, exhaustion, detachment, and ineffectiveness. At an extreme, moral distress may lead to a desire to abandon the speciality entirely. This article offers an international perspective on moral distress in nephrology in diverse contexts and health care systems. We examine and discuss the sociocultural factors that contribute to moral distress in nephrology and offer suggestions for interventions from individual provider, facility, and health care systems perspectives to reduce the impact of moral distress on nephrology providers.
Assuntos
Tomada de Decisão Clínica , Pessoal de Saúde , Acessibilidade aos Serviços de Saúde/ética , Falência Renal Crônica/terapia , Princípios Morais , Nefrologia/ética , Angústia Psicológica , Assistência Terminal , Planejamento Antecipado de Cuidados , Tratamento Conservador/ética , Família , Humanos , Futilidade Médica/ética , Enfermagem em Nefrologia , Enfermeiras e Enfermeiros , MédicosRESUMO
With an increasingly aging population and improved mortality in individuals with end-stage kidney disease, more surgeries are being performed on patients with all stages of chronic kidney disease (CKD). This high-risk population carries unique risk factors that have been associated with increased adverse perioperative outcomes, including acute kidney injury, cardiovascular events, and mortality. In this article, we review the literature describing absolute risks associated with common surgeries performed in patients with CKD and patients receiving maintenance dialysis. We also review perioperative optimization with special risk assessment including evaluation of cardiovascular and bleeding risk evaluation, hypertension management, and timing of dialysis. Predictive model scores are reviewed as a method to stratify risk for acute kidney injury, major adverse cardiac events, or other serious complications with elective surgeries. A multidisciplinary approach with individualized counseling is necessary to counsel the patient with advanced CKD or patients treated with maintenance dialysis considering elective surgery.
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Artroplastia do Joelho , Osteoartrite do Joelho/cirurgia , Cuidados Pré-Operatórios/métodos , Diálise Renal/métodos , Insuficiência Renal Crônica/terapia , Medição de Risco/métodos , Progressão da Doença , Humanos , Masculino , Pessoa de Meia-Idade , Osteoartrite do Joelho/complicações , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/diagnóstico , Fatores de Risco , Índice de Gravidade de DoençaAssuntos
Reanimação Cardiopulmonar/mortalidade , Serviços Médicos de Emergência/métodos , Parada Cardíaca Extra-Hospitalar/mortalidade , Parada Cardíaca Extra-Hospitalar/terapia , Idoso , Reanimação Cardiopulmonar/métodos , Causas de Morte , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , Mortalidade Hospitalar/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Diálise Renal/efeitos adversos , Diálise Renal/métodos , Medição de Risco , Análise de SobrevidaRESUMO
With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.
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Assistência Ambulatorial , Cuidados Paliativos , Insuficiência Renal Crônica , Humanos , Idoso , Insuficiência Renal Crônica/terapia , Idoso de 80 Anos ou mais , Planejamento Antecipado de Cuidados , Estados Unidos , Feminino , MasculinoRESUMO
In this review, we discuss common challenges at the interface between dialysis access planning, prognostication, and patient-centered decision making. Particularly for patients whose survival benefit from dialysis is attenuated by advanced age or other serious illness, knowing the potential complications and anticipated frequency of access procedures is essential for patients and families to be able to conceptualize what life on dialysis will look like. Although starting dialysis with a functioning graft or fistula is associated with reduced infection rates, mortality, hospitalizations, and cost compared with a central venous catheter, these benefits must be weighed against the chance that early access placement in an elderly or seriously ill patient is an unnecessary surgery because the chronic kidney disease never progresses, the patient dies before developing an indication to start dialysis, or, the patient prefers conservative kidney management over dialysis. Kidney palliative care is a growing subspecialty of nephrology focused on helping seriously ill patients navigate complex medical decisions, and may be useful for intensive goals-of-care discussions about treatment and access options for patients with limited anticipated survival because of age or other serious illness.
Assuntos
Falência Renal Crônica , Insuficiência Renal Crônica , Humanos , Idoso , Diálise Renal/métodos , Cuidados Paliativos , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/terapia , Rim , Falência Renal Crônica/terapiaRESUMO
Maintaining independence is the top health-related priority reported by older patients with advanced kidney disease.1 Unfortunately, functional losses such as fatigue, skeletal muscle loss, infection, cognitive decline, and diminished aerobic capacity are very common among patients receiving hemodialysis for chronic kidney failure. Such functional losses are associated with higher mortality2-4 and affect patients' physical activity level and overall quality of life. Indeed, symptom burden and mortality in patients receiving hemodialysis rival those in patients with cancer.5 Nephrology societies, clinicians, and above all patients and families are therefore interested in preserving quality of life and function for patients on dialysis.
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Falência Renal Crônica , Diálise Renal , Humanos , Antídotos , Qualidade de Vida , Exercício FísicoRESUMO
Patient and family advisory councils (PFACs) represent one method of engaging patients and families in clinical program development and research, but existing practices too often exclude marginalized and minority voices. As a kidney palliative care team (KidneyPal) at a large academic medical center, we sought to create a PFAC that explicitly considered equity and inclusion in its approach to advisor recruitment. We developed two major innovations to reduce selection bias in our KidneyPal PFAC: adaptation to an entirely virtual process and alteration of the advisor recruitment and enrollment process. We eliminated several potential barriers to participation for our patients and their family members, a population with higher rates of advanced age, nonwhite ethnicity, and limited English proficiency than the local general population. We removed application requirements including lengthy online training modules, detailed employment history, a personal essay, and a criminal background check. The KidneyPal PFAC may act as a model for improving equity and inclusion in virtual patient advisory councils.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Pacientes , Etnicidade , RimRESUMO
Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Medicina , Humanos , Estados Unidos , Cuidados Paliativos , Atenção à SaúdeRESUMO
Patients with cancer and kidney disease experience a range of symptoms that impact their quality of life. Pain, fatigue, decreased appetite, and depression are all common in this population. Kidney palliative care is patient-centered medical care focused on reducing symptoms and defining individualized goals of care for patients and their families. Pharmacologic management of pain in patients with cancer and kidney disease requires recognition of the type of pain, its cause, and the risks and benefits of different medication classes. This review describes basic symptom management options as well as considerations for discussing goals of care, prognosis, and end of life.
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Nefropatias , Neoplasias , Humanos , Nefropatias/complicações , Neoplasias/complicações , Neoplasias/terapia , Dor , Cuidados Paliativos , Qualidade de VidaRESUMO
BACKGROUND: Expanding specialty palliative care within complex health systems involves consideration of patients' unmet needs, clinicians' perceptions of palliative care, and the availability of palliative care resources. Prior to this quality improvement (QI) project, palliative care services in our health system primarily served oncology patients. INTERVENTION: We undertook a prospective strategic planning process that included executive sponsorship and engagement of institutional leaders and clinicians to help define which palliative care services were most needed by the health system. MEASURES: We interviewed and surveyed a broad range of clinicians including physicians, nurse practitioners, and social workers. OUTCOMES: The two most prominent themes that emerged from the stakeholder engagement process were clinicians' wish for specialty-aligned interprofessional palliative care teams and for expansion of nononcology palliative care access. CONCLUSION: Careful needs assessment and stakeholder engagement can result in goal-directed and data-driven expansion of palliative care services within tertiary health care systems.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Atenção Terciária à Saúde , Estudos Prospectivos , OncologiaRESUMO
Across the world, challenges for clinicians providing health care during the coronavirus disease 2019 (COVID-19) pandemic are highly prevalent and have been widely reported. Perspectives of provider groups have conveyed wide-ranging experiences of adversity, distress, and resilience. In understanding and responding to the emotional and psychological implications of the pandemic for renal clinicians, it is vital to recognize that many experiences also have been ethically challenging. The COVID-19 pandemic has prompted rapid and extensive transformation of health care systems and widely impacted care provision, heightening the risk of barriers to fulfillment of ethical duties. Given this, it is likely that some clinicians also have experienced moral distress, which can occur if an individual is unable to act in accordance with their moral judgment owing to external barriers. This review presents a global perspective of potential experiences of moral distress in kidney care during the COVID-19 pandemic. Using nephrology cases, we discuss why moral distress may be experienced by health professionals when withholding or withdrawing potentially beneficial treatments owing to resource constraints, when providing care that is inconsistent with local prepandemic best practice standards, and when managing dual professional and personal roles with conflicting responsibilities. We argue that in addition to responsive and appropriate health system supports, resources, and education, it is imperative for health care providers to recognize and prevent moral distress to foster the psychological well-being and moral resilience of clinicians during extended periods of crisis within health systems.
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COVID-19 , Nefropatias/terapia , Princípios Morais , Nefrologia , Estresse Ocupacional/etiologia , Angústia Psicológica , Transtornos de Estresse Pós-Traumáticos/etiologia , Adulto , Idoso de 80 Anos ou mais , Temas Bioéticos , Atenção à Saúde/ética , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nefrologia/éticaRESUMO
Kidney palliative care is a growing subspecialty of clinical practice, education, and research in nephrology. It is an essential aspect of care for patients across the continuum of advanced kidney disease who have high symptom burden, multidimensional communication needs, and limited life expectancy. Training in kidney palliative care can occur in a variety of ways, from didactic curricula and clinical experiences embedded in nephrology fellowship training to the pursuit of additional dedicated fellowship training in palliative care. At this time, a minority of nephrologists pursue formal fellowship training in specialty palliative care. This article will discuss opportunities and challenges in building a skilled workforce that will address the palliative needs of patients living with advanced kidney disease.
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Nefrologistas/provisão & distribuição , Nefrologia , Cuidados Paliativos , Planejamento Antecipado de Cuidados , Tomada de Decisão Clínica , Mão de Obra em Saúde , Humanos , Falência Renal Crônica/terapia , Nefrologia/educação , Diálise Renal , Avaliação de SintomasRESUMO
Judaism, one of the world's oldest religions, claims an estimated 14.3 million members worldwide. There is great diversity in terms of identity, practice, and belief among people who identify as Jewish. As of 2017, 40% of the global Jewish community resided in the United States, making it essential for palliative care clinicians to understand religious and cultural issues related to their serious illness care. In this article, we will discuss 10 important concepts relevant to the inpatient care, advance care planning, and bereavement needs of Jewish patients and families.