Global access and quality of conservative kidney management.

BACKGROUND: Conservative kidney management (CKM) describes supportive care for people living with kidney failure who choose not to receive or are unable to access kidney replacement therapy (KRT). This study captured the global availability of CKM services and funding. METHODS: Data came from the International Society of Nephrology Global Kidney Health survey conducted between June and September 2022. Availability of CKM, infrastructure, guidelines, medications and training were evaluated. RESULTS: CKM was available in some form in 61% of the 165 responding countries. CKM chosen through shared decision-making was available in 53%. Choice-restricted CKM-for those unable to access KRT-was available in 39%. Infrastructure to provide CKM chosen through shared decision-making was associated with national income level, reported as being "generally available" in most healthcare settings for 71% of high-income countries, 50% of upper-middle-income countries, 33% of lower-middle-income countries and 42% of low-income countries. For choice-restricted CKM, these figures were 29%, 50%, 67% and 58%, respectively. Essential medications for pain and palliative care were available in just over half of the countries, highly dependent upon income setting. Training for caregivers in symptom management in CKM was available in approximately a third of countries. CONCLUSIONS: Most countries report some capacity for CKM. However, there is considerable variability in terms of how CKM is defined, as well as what and how much care is provided. Poor access to CKM perpetuates unmet palliative care needs, and must be addressed, particularly in low-resource settings where death from untreated kidney failure is common.

Capacity for the management of kidney failure in the International Society of Nephrology North America and the Caribbean region: report from the 2023 ISN Global Kidney Health Atlas (ISN-GKHA).

The International Society of Nephrology Global Kidney Health Atlas charts the availability and capacity of kidney care globally. In the North America and the Caribbean region, the Atlas can identify opportunities for kidney care improvement, particularly in Caribbean countries where structures for systematic data collection are lacking. In this third iteration, respondents from 12 of 18 countries from the region reported a 2-fold higher than global median prevalence of dialysis and transplantation, and a 3-fold higher than global median prevalence of dialysis centers. The peritoneal dialysis prevalence was lower than the global median, and transplantation data were missing from 6 of the 10 Caribbean countries. Government-funded payments predominated for dialysis modalities, with greater heterogeneity in transplantation payor mix. Services for chronic kidney disease, such as monitoring of anemia and blood pressure, and diagnostic capability relying on serum creatinine and urinalyses were universally available. Notable exceptions in Caribbean countries included non-calcium-based phosphate binders and kidney biopsy services. Personnel shortages were reported across the region. Kidney failure was identified as a governmental priority more commonly than was chronic kidney disease or acute kidney injury. In this generally affluent region, patients have better access to kidney replacement therapy and chronic kidney disease-related services than in much of the world. Yet clear heterogeneity exists, especially among the Caribbean countries struggling with dialysis and personnel capacity. Important steps to improve kidney care in the region include increased emphasis on preventive care, a focus on home-based modalities and transplantation, and solutions to train and retain specialized allied health professionals.

Patient views regarding cannabis use in chronic kidney disease and kidney failure: a survey study.

BACKGROUND: Cannabis is frequently used recreationally and medicinally, including for symptom management in patients with kidney disease. METHODS: We elicited the views of Canadian adults with kidney disease regarding their cannabis use. Participants were asked whether they would try cannabis for anxiety, depression, restless legs, itchiness, fatigue, chronic pain, decreased appetite, nausea/vomiting, sleep, cramps and other symptoms. The degree to which respondents considered cannabis for each symptom was assessed with a modified Likert scale ranging from 1 to 5 (1, definitely would not; 5, definitely would). Multilevel multivariable linear regression was used to identify respondent characteristics associated with considering cannabis for symptom control. RESULTS: Of 320 respondents, 290 (90.6%) were from in-person recruitment (27.3% response rate) and 30 (9.4%) responses were from online recruitment. A total of 160/320 respondents (50.2%) had previously used cannabis, including smoking [140 (87.5%)], oils [69 (43.1%)] and edibles [92 (57.5%)]. The most common reasons for previous cannabis use were recreation [84/160 (52.5%)], pain alleviation [63/160 (39.4%)] and sleep enhancement [56/160 (35.0%)]. Only 33.8% of previous cannabis users thought their physicians were aware of their cannabis use. More than 50% of respondents probably would or definitely would try cannabis for symptom control for all 10 symptoms. Characteristics independently associated with interest in trying cannabis for symptom control included symptom type (pain, sleep, restless legs), online respondent {ß = 0.7 [95% confidence interval (CI) 0.1-1.4]} and previous cannabis use [ß = 1.2 (95% CI 0.9-1.5)]. CONCLUSIONS: Many patients with kidney disease use cannabis and there is interest in trying cannabis for symptom control.

Association between Goals of Care Designation orders and health care resource use among seriously ill older adults in acute care: a multicentre prospective cohort study.

BACKGROUND: The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization. METHODS: This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city). RESULTS: We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20). INTERPRETATION: Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.

Efficacy of Advance Care Planning Videos for Patients: A Randomized Controlled Trial in Cancer, Heart, and Kidney Failure Outpatient Settings.

BACKGROUND: Patient videos about advance care planning (ACP; hereafter "Videos"), were developed to support uptake of provincial policy and address the complexity of patients' decision-making process. We evaluate self-administered ACP Videos, compare the studies' choice of outcomes, show correlations between the patients' ACP actions, and discuss implications for health care policy. OBJECTIVE: To test the efficacy of the Videos on patients' ACP/goals of care designation conversations with a health care provider. DESIGN, SETTING, AND PARTICIPANTS: Using a 2-arm, 1:1 randomized controlled trial, we recruited outpatients with a diagnosis of kidney failure, heart failure, metastatic lung, gastrointestinal, or gynecological cancer from 22 sites. Analysis followed the intention-to-treat principle. INTERVENTIONS: Videos describing the ACP process and illustrating the resuscitative, medical, and comfort levels of care. MAIN OUTCOMES AND MEASURES: The primary outcome was the proportion of participants who reported having an ACP/goals of care designation (GCD) conversation with a health care provider by 3 mo. Outcomes were measured using the Behaviours in Advance Care Planning and Actions Survey, an online survey capturing ACP attitudes, processes, and actions. RESULTS: We analyzed 241 and 217 participants at baseline and 3 mo, respectively. The proportion of participants who had an ACP/GCD conversation with a health care provider by 3 mo was significantly different between study arms (46% intervention; 32% control; adjusted odds ratio, 1.83; P = 0.032). Adjusted for the quality of conversations, there was no significant difference. CONCLUSIONS: Videos as stand-alone tools do not engage individuals in high-quality ACP. Pragmatic trials are necessary to evaluate their impact on downstream outcomes when integrated into intentional, comprehensive conversations with a health care provider. Considering the strong correlation between 2 activities (physicians discussing options, patients telling health care providers preferences), policy should focus on empowering patients to initiate these conversations.

Personalized Approach and Precision Medicine in Supportive and End-of-Life Care for Patients With Advanced and End-Stage Kidney Disease.

Kidney supportive care requires a highly personalized approach to care. Precision medicine holds promise for a deeper understanding of the pathophysiology of symptoms and related syndromes and more precise individualization of prognosis and treatment estimates, therefore providing valuable opportunities for greater personalization of supportive care. However, the major drivers of quality of life are psychosocial, economic, lifestyle, and preference-based, and consideration of these factors and skilled communication are integral to the provision of excellent and personalized kidney supportive care. This article discusses the concepts of personalized and precision medicine in the context of kidney supportive care and highlights some opportunities and limitations within these fields.

Home Palliative Service Utilization and Care Trajectory Among Ontario Residents Dying on Chronic Dialysis.

BACKGROUND: Many patients who receive chronic hemodialysis have a limited life expectancy comparable to that of patients with metastatic cancer. However, patterns of home palliative care use among patients receiving hemodialysis are unknown. OBJECTIVES: We aimed to undertake a current-state analysis to inform measurement and quality improvement in palliative service use in Ontario. METHODS: We conducted a descriptive study of outcomes and home palliative care use by Ontario residents maintained on chronic dialysis using multiple provincial healthcare datasets. The period of study was the final year of life, for those died between January 2010 and December 2014. RESULTS: We identified 9611 patients meeting inclusion criteria. At death, patients were (median [Q1, Q3] or %): 75 (66, 82) years old, on dialysis for 3.0 (1.0-6.0) years, 41% were women, 65% had diabetes, 29.6% had dementia, and 13.9% had high-impact neoplasms, and 19.9% had discontinued dialysis within 30 days of death. During the last year of life, 13.1% received ⩾1 home palliative services. Compared with patients who had no palliative services, those who received home palliative care visits had fewer emergency department and intensive care unit visits in the last 30 days of life, more deaths at home (17.1 vs 1.4%), and a lower frequency of deaths with an associated intensive care unit stay (8.1 vs 37.8%). CONCLUSIONS: Only a small proportion of patients receiving dialysis in Ontario received support through the home palliative care system. There appears to be an opportunity to improve palliative care support in parallel with dialysis care, which may improve patient, family, and health-system outcomes.

CONTEXTE: L'espérance de vie de bon nombre de patients traités par hémodialyse chronique se compare à celle des patients atteints d'un cancer métastatique. Cependant, les tendances d'utilisation des soins palliatifs à domicile chez les patients hémodialysés sont encore peu connues. OBJECTIF DE L'ÉTUDE: Nous souhaitions faire une analyse de l'état actuel des choses afin d'éclairer sur la mesure et l'amélioration de la qualité des soins palliatifs en Ontario. MÉTHODOLOGIE: Nous avons mené une étude descriptive des issues pour les patients et de l'utilisation des soins palliatifs à domicile chez les patients hémodialysés en Ontario. Plusieurs ensembles de données provinciales en soins de santé ont été employés pour procéder à l'analyse. La dernière année de vie des patients décédés entre janvier 2010 et décembre 2014 a constitué la période étudiée. RÉSULTATS: Les patients satisfaisant les critères d'inclusion étaient au nombre de 9 611. La cohorte était constituée à 41 % de femmes. Au moment du décès, l'âge médian (Q1; Q3) des patients était de 75 ans (66; 82 ans) et la médiane de la durée des traitements d'hémodialyse était de trois ans en moyenne (1,0; 6,0 ans). Parmi les comorbidités recensées au décès, 65 % des patients étaient aussi diabétiques, environ un tiers (29,3 %) étaient atteints de démence et 13,9 % présentaient des néoplasmes. Dans les 30 jours précédant leur décès, 19,9 % des patients avaient cessé leurs traitements de dialyse. Au cours de la dernière année de vie, seulement 13,1 % des patients de la cohorte avaient reçu au moins un service de soins palliatifs à domicile. Lorsque comparés aux patients n'ayant reçu aucun service en soins palliatifs, ils se sont moins souvent présentés aux urgences et ont moins souvent séjourné dans les unités de soins intensifs. De plus, une plus grande proportion des patients ayant reçu des soins palliatifs sont décédés à domicile, soit 17,1 % contre 1,4 % des patients n'ayant reçu aucun service en soins palliatifs. Enfin, le taux de mortalité associé à un séjour aux soins intensifs s'est avéré bien inférieur chez les patients qui avaient reçu des soins palliatifs, soit 8,1 % contre 37,8 % pour les patients n'ayant reçu aucun service de soins palliatifs. CONCLUSION: En Ontario, une très faible proportion des patients hémodialysés a reçu du soutien par l'entremise du système de soins palliatifs à domicile au cours de la période étudiée. Il semble donc y avoir une possibilité d'améliorer l'offre de soins palliatifs parallèlement aux traitements de dialyse; et ceci pourrait avoir une incidence positive sur les patients et leurs proches, de même que sur le système de santé.

Behaviors in Advance Care Planning and ACtions Survey (BACPACS): development and validation part 1.

BACKGROUND: Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS). METHODS: We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved. RESULTS: Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24-38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification. CONCLUSIONS: Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool.

Supportive Care: Integration of Patient-Centered Kidney Care to Manage Symptoms and Geriatric Syndromes.

Dialysis care is often associated with poor outcomes including low quality of life (QOL). To improve patient-reported outcomes, incorporation of the patient's needs and perspective into the medical care they receive is essential. This article provides a framework to help clinicians integrate symptom assessment and other measures such as QOL and frailty scores into a clinical approach to the contemporary supportive care of patients with advanced CKD. This approach involves (1) defining our understanding of kidney supportive care, patient-centered dialysis, and palliative dialysis; (2) understanding and recognizing common symptoms associated with advanced CKD; (3) discussing the concepts of physical function, frailty, and QOL and their role in CKD; and (4) identifying the structural and process barriers that may arise when patient-centered dialysis is being introduced into clinical practice.

Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease.

OBJECTIVES: Palliative care is greatly underutilised for patients dying from advanced chronic kidney disease (CKD). This study explored CKD patients' knowledge of, and attitudes to, palliative and hospice care. DESIGN AND INTERVENTION: This was a cross-sectional interview-based survey of stage 5 CKD patients. SETTING: Both dialysis patients and those managed without dialysis were assessed in a university-based renal programme in Alberta, Canada. OUTCOME MEASURES: The primary outcome was validated patient knowledge of, and attitudes, towards palliative and hospice care. Secondary analyses of associations between knowledge and potential explanatory variables such as patient demographics, living circumstances, self-assigned ethnicity, socioeconomic position and sources of knowledge were explored. RESULTS: Only 22.2% and 17.9% of 436 patients surveyed possessed a correct understanding of palliative and hospice care, respectively, and perceptions were mostly negative. Sources of knowledge of these services rarely involved healthcare professionals (3.1%-7.7%). Multivariable analysis identified that white participants were more than 12 times more likely to have accurate knowledge than non-Caucasian patients, not accounted for by socioeconomic position. Accurate knowledge was also more likely among patients who had personal experience with palliative care, or obtained their knowledge firsthand from family and friends. After palliative and hospice care were described, the vast majority of patients felt these services were valuable and should be offered to patients with advanced CKD (87.8% and 89.7%, respectively). CONCLUSIONS: Based on study findings, CKD patient and family education about the benefits of palliative and hospice services is likely important in optimal use of these services.

Palliative and end-of-life care issues in chronic kidney disease.

PURPOSE OF REVIEW: Patients with progressive chronic kidney disease (CKD) have high morbidity, mortality, and symptom burden. Cardiovascular disease (CVD) and congestive heart failure (CHF) often contribute to these burdens and should be considered when providing recommendations for care. This review aims to summarize recent literature relevant to the provision of palliative and end-of-life care for patients with progressive CKD and specifically highlights issues relevant to those with CVD and CHF. RECENT FINDINGS: Dialysis may not benefit older, frail patients with progressive CKD, especially those with other comorbidities. Patients managed conservatively (i.e., without dialysis) may live as long as patients who elect to start dialysis, with better preservation of function and quality of life and with fewer acute care admissions. Decisions regarding dialysis initiation should be made on an individual basis, keeping in mind each patient's goals, comorbidities, and underlying functional status. Conservative management of progressive kidney disease is frequently not offered but is likely to benefit many older, frail patients with comorbidities such as CHF and CVD. SUMMARY: A palliative approach to the care of many patients with progressive CKD is essential to ensuring they receive appropriate quality care.

Palliative care in patients with advanced chronic kidney disease.

The past five decades have shown a tremendous growth, world wide, in the number of patients with advanced chronic kidney disease (CKD). Patients with advanced CKD today are notably older, have significant comorbidity, substantial symptom burden and, ultimately, have high mortality. Subsequently, there is an increased global awareness of the need to integrate palliative care into routine kidney care to enhance the quality of life and death for patients with advanced CKD. This article outlines a conceptual framework for kidney palliative care for patients with advanced CKD and discusses issues such as symptom burden, illness trajectories, advance care planning, and complex decision-making, including decisions around the appropriate initiation, withholding and withdrawal of dialysis, and the potential palliative care roles and responsibilities for nursing staff within kidney care programs.

The ethics of end-of-life care for patients with ESRD.

Patients with ESRD have extensive and unique palliative care needs, often for years before death. The vast majority of patients, however, dies in acute care facilities without accessing palliative care services. High mortality rates along with a substantial burden of physical, psychosocial, and spiritual symptoms and an increasing prevalence of decisions to withhold and stop dialysis all highlight the importance of integrating palliative care into the comprehensive management of ESRD patients. The focus of renal care would then extend to controlling symptoms, communicating prognosis, establishing goals of care, and determining end-of-life care preferences. Regretfully, training in palliative care for nephrology trainees is inadequate. This article will provide a conceptual framework for renal palliative care and describe opportunities for enhancing palliative care for ESRD patients, including improved chronic pain management and advance care planning and a new model for delivering high-quality palliative care that includes appropriate consultation with specialist palliative care.

When enough is enough: the nephrologist's responsibility in ordering dialysis treatments.

For more than 20 years, nephrologists have been reporting that they are increasingly being expected to dialyze patients whom they believe may receive little benefit from dialysis therapy. During this time, there has been substantial research about the outcomes of patients of differing ages and comorbid conditions requiring dialysis and the development of clinical practice guidelines for dialysis decision making based on research evidence, ethics, and the law. The importance of palliative medicine to the care of the patient throughout the continuum of kidney disease also has been recognized, and its application has been described. This article summarizes these advances and provides an approach for decision making and treatment for patients who are not likely to benefit from dialysis therapy.

Integrating palliative care for patients with advanced chronic kidney disease: recent advances, remaining challenges.

Patients with ESRD have extensive and unique end-of-life care considerations and needs. Despite substantial advancements in renal palliative care over the past decade, much research is still required. Identifying CKD patients whose illness trajectory has shifted and would likely benefit from a palliative approach to care should be a priority of all nephrology programs. Further research on symptom management, the effectiveness of ACP, the life expectancy of conservatively managed and incident dialysis patients, anticipated changes in functional status and HRQL with the initiation of dialysis (especially among the frail elderly), and the best way to deliver renal palliative care is required to maximize the integration and effectiveness of renal palliative care services.

End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.

BACKGROUND AND OBJECTIVES: Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008. RESULTS: Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months. CONCLUSIONS: Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.

Withholding and withdrawal from dialysis: what we know about how our patients die.

Withholding and withdrawal of dialysis has been a reality since dialysis was invented. Only in the past 20 years has it been formally studied, and we still have a great deal to learn. The nephrology community has slowly come to accept that, for some of our patients, not having dialysis is a better option than continuing or initiating therapy. The principles of palliative care throughout the disease trajectory and hospice care at end of life are germane to this population due to its high symptom burden and mortality rate. We review what is currently known concerning patients who choose to withhold or withdraw from dialysis, and the current barriers (and solutions) to providing them with optimal palliative care.