Susan Crail

Mark A Brown and Susan M Crail Perhaps the most difficult decision facing nephrologists today is that of 'selecting' which patients will benefit from dialysis in an overall person-centred sense, not just in terms of days survived or achievement of target haemoglobin, Phosphate, Kt/V or other outcomes. The overall aim is to help and direct patients and their families so as to encourage those who will benefit most from dialysis to have this while being honest and direct with those who are unlikely to benefit or even be harmed by dialysis. Consequently it is imperative that we have mechanisms in place that support those who do not receive dialysis in such a way that they have good symptom control and quality of life (QOL). A very important principle is that these planning discussions need to take place early in the course of a patient's management, probably when estimated Glomerular Filtration Rate (eGFR) reaches 25 mL/min. Nephrologists need to lead these discussions – these are very difficult discussions but it is imperative that as nephrologists we do not shy away from them as this is to the ultimate detriment of the patient and their family. In some centres it may be that nephrologists do not see the same patients regularly and the temptation here will be either to use dialysis as the default choice for all patients or else to leave these discussions to other medical or nursing staff. It is inappropriate for these discussions to be delegated to more junior medical staff but advanced trainees and Junior Medical Officers (JMOs) should be present as part of their training. Initial discussions are generally best if done with the nephrologist and his/her medical team, and then followed by more detailed discussions with nursing staff and allied health staff. Ideally a renal supportive care (RSC) programme team will help facilitate these ongoing discussions with a patient and their family when a conservative not-for-dialysis pathway is chosen and a pre-dialysis team will assist those for whom dialysis is considered the correct management pathway. Many nephrologists have already made it part of their usual practice to offer a 'non-dialysis' pathway to selected patients but many are also understandably troubled when making such decisions. This issue has become more prominent because of the increasing number of aged patients with comorbidities, frailty, or poor functional status who present with end stage kidney disease, for whom decisions need be made as to the appropriateness of dialysis. Autonomy Is the patient, having been properly informed of the pros and cons of dialysis, capable of making a decision whether or not to have dialysis? Non-maleficence We have an obligation to do no harm to our patients; suffering is harm and we need to judge carefully whether dialysis will increase suffering. Swidler5 states that 'although dialysis is life-sustaining therapy and extends life, it may also create, increase or prolong suffering while not restoring or maintaining well-being, function or cognition' … and 'to address suffering it must first be realised'. The burden of suffering may not be realized by a consultant who sees the patient infrequently but will be borne greatly by dialysis nurses and registrars. This is an often neglected ethical issue. Beneficence We are obliged to provide our patients with the greatest benefit; to this end we should do our utmost to select patients most likely to benefit from dialysis, not just in terms of prolongation of life but in maintenance of worthwhile QOL. Justice We are obliged to provide our patients equal opportunity and allocation of available resources; in general terms we are fortunate in Australia and New Zealand that this principle rarely comes into play when making decisions around dialysis. In summary, nephrologists' thinking about elderly patients with ESKD needs to shift from traditional markers of medical 'success' to focus on the patients' symptoms and function as much or more than survival. This will help make an appropriate decision about suitability for dialysis. We believe that in making the decision to embark upon or forgo dialysis, we should consider all the above principles and enhance ESKD patient & family education to ensure that the option of non-dialysis conservative RSC is at least an equal offer to dialysis. This is best done with a formal RSC programme in place in each unit. Importantly all elderly patients with ESKD who do not receive dialysis need to not feel abandoned and know that all ongoing ESKD treatment will continue with their nephrologist. Finally, we already have some guidelines that discuss when it is OK to forgo dialysis, including Caring for Australians with Renal Impairment (CARI) & Renal Physicians Association (RPA) USA guidelines, discussed in the section by Crail 'Management guidelines for patients choosing the RSC pathway: Information and web-based treatment protocols available to all'. Rosemary Masterson and Celine Foote The number of patients with end-stage kidney disease (ESKD) is growing, with the greatest increase over the last decade among those who are elderly, dependent and with multiple comorbidities.1, 2 As a consequence, the annual acceptance rate for renal replacement therapy (RRT) in Australia is rising with the highest prevalent dialysis groups being the 65–74 years age cohort (24%) and the over 75 years old age group (24%).3 It is also noteworthy, that in the past 5 years, the greatest percentage increase in acceptance onto dialysis has been in the over 75 years old age group.3 Although ANZDATA (Australian and New Zealand Dialysis and Transplant Registry) provides data on the stock and flow of elderly patients on RRT, there exists no registry data of the number of elderly patients reaching chronic kidney disease (CKD) stage V who choose not to dialyse. Results from the Patient INformation about Options for Treatment (PINOT) study showed that 14% of incident stage V CKD patients chose a non-dialysis pathway4 but this does not account for the undefined number of people who, in consultation with their physician and family choose not to dialyse and are never referred to nephrology services in the first instance. The Australian Institute of Health and Welfare (AIHW) study suggests that for every patient (usually elderly) who dies on RRT another dies without having the desire for or access to RRT.5 We have reached an important crossroad in the provision of dialysis services where technology has improved to such a degree that there exists few limitations in the ability to commence dialysis irrespective of age or comorbidities. However, in conjunction with this change in practice, there is increasing recognition among nephrologists and renal service providers that dialysing those with increasing dependence and multiple comorbidities may not improve survival and may adversely affect their quality of life. Few qualitative studies6, 7 have explored the factors that elderly ESKD patients consider when making treatment decisions but some of the factors identified to date include survival, quality of life and burden of treatment. An ANZDATA study,8 which included 1781 patients aged 75 years or older who started RRT between January 2002 and December 2005 and followed them until 31 December 2007, showed that 91% of patients had at least one, and almost half had three or more comorbidities. Two-thirds of patients had coronary disease, one-third had peripheral vascular disease and one quarter had cerebrovascular disease while 70% had some form of vascular disease. An appreciable number of elderly patients (46%) commenced dialysis without permanent access and approximately one-third commenced RRT less than 3 months after nephrologist review. Patients on non-dialysis pathways tend to be older,9, 10 with more functional impairment11and social isolation11 but these studies to date are not derived from an Australasian cohort. From ANZDATA and other international registry data, we have accurate information on the overall survival from the point of initiating dialysis within a given age group. It is clear that elderly patients on dialysis have a substantial decrease in actuarial survival compared with the age matched population.8 The survival of Australasian elderly dialysis patients was as detailed above and was markedly less than the actuarial survival of a similarly aged person not requiring dialysis12 as shown in Figure 1. Survival of patients aged ≥75 years initiating dialysis in Australasia between January 2002 and December 2005 (Kaplan–Meier curves) with 95% confidence intervals (CIs) compared with survival of 75- and 80-year-olds from the general Australian population.12 Inset: proportion alive at 1, 2, 3 and 4 years following commencement of dialysis compared with general population. These findings have been echoed in publications from other large international registry databases.1, 13 In a US Renal Data System (USRDS)-based study looking at outcomes of all nursing home residents in the USA following initiation of dialysis, the authors reported mortality rates of 24% in the first 3 months after dialysis initiation and 58% at 12 months.14 Survival on a non-dialysis pathway is more difficult to determine as there have been few studies, each containing small numbers of patients (Fig. 2). Some studies have reported outcomes on patients of all ages while others have focused on the elderly and the studies have used different points from which to measure survival, ranging from an epidermal growth factor receptor (eGFR) of 10 or 15 or a putative dialysis date. The reported survival varies between 6 and 23 months in studies with patients of all ages and 9 and 22 months in studies in the elderly. This lack of evidence and variation in mortality makes it difficult for nephrologists to draw conclusions regarding survival on a non-dialysis pathway. Another thing to consider is that the most of these studies were conducted on the UK where practice patterns and characteristics of patients may be different from Australasia. Reported median survival of patients on a non-dialysis pathway – number of patients (pts). * Studies included elderly patients only. Several studies have also identified comorbidity score8, 10 as a strong predictor of mortality. Few studies have examined factors associated with survival in patients treated on a non-dialysis pathway. One prospective observational study carried out by Wong et al. using the validated Stoke comorbidity score showed that comorbidity grading predicted survival in these patients, with percentage survival at 1 year ranging from 83% in those with a grade zero score to 56% in those with a grade 2 comorbidity score.17 These data suggest that those with a low comorbidity score may have a reasonable survival on a non-dialysis pathway. Although these studies provide us with some information on factors predicting survival in elderly patients with advanced CKD, there is a lack of prospective comparative studies looking to identify factors that might predict a survival benefit for dialysis versus non-dialysis care. There are however are a number of well-conducted observational studies that have attempted to overcome the bias of their retrospective nature, to compare the outcome of dialysis versus non-dialysis care in this elderly cohort. Results of comparative studies suggest that survival advantage on dialysis in the very elderly is lost when there is a high comorbidity score, particularly coronary disease, poor functional ability and high social dependence. The largest of these studies published by Chandna et al. from the UK, studied 844 patients over an 18-year period. They found that in patients over 75 years of age with high comorbidity, RRT was not associated with a significant increase in survival compared with those who were not dialysed.18 Similarly in another UK study, Murtagh et al. showed that although overall survival with dialysis was superior (84% vs. 68% 1-year survival), the survival benefit was lost in those with a high comorbidity score, with cardiovascular disease being the most predictive of poor outcome.10 By way of comparison, the ANZDATA statistics show that a high proportion of elderly patients on dialysis in Australia have several factors predictive of a poor outcome on dialysis.8 Few studies have examined outcomes other than survival in elderly patients with ESKD. Health-related quality of life in elderly dialysis patients appears to be decreased compared with elderly persons in the general population19 although may be better preserved than in a younger cohort of patients where the perceived reduction in health-related quality of life associated with dialysis is greater.20 Many factors will impact on a patient's quality of life and may influence their decision to dialyse or not. An important concept is that of hospital free survival. Dialysis in elderly patients is associated with increased hospitalization with rates of hospitalization in elderly RRT patients of 20–35 days per year9, 21 compared with 10–16 days per year9, 17 in those on non-dialysis pathways. One UK study published by Carson et al.9 concluded that elderly haemodialysis patients spent almost 50% of the time they survived in hospital or attending to dialysis compared with those on non-dialysis pathways who spent just 4.3% of their days. This crucial information is frequently not imparted to patients or considered by nephrologists when discussing the option of RRT. Evidence also exists that elderly dialysis patients have one of the highest prevalence rates for frailty of any single population and that initiation of dialysis may be associated with considerable functional decline. Jassal et al.22 showed that in those aged ≥80 who commenced dialysis (80% of whom were living independently at home), 30% had functional loss 6 months after dialysis initiation (required community/carer support or transfer to a nursing home). Another study by Kurella Tamura et al.14 showed that the majority of elderly nursing home residents have died (60%) or lost function (27%) 12 months after dialysis initiation. The elderly can have specific medical issues and needs that are best assessed by an Aged Care Physician. This is recommended particularly when assessment of cognitive function is a part of the considerations in determining whether dialysis is appropriate or not. Finally carers of elderly dialysis patients also have impaired quality of life with all components of The Short Form (36) Health Survey (SF36) affected and 32% of carers with signs of depression in one study.23 We have no information on the impact of carers of elderly patients on non-dialysis pathways and further studies are required. Jennifer Robins and Ivor Katz This guideline will review the current prediction models and survival/mortality scores available for decision-making in patients with advanced kidney disease who are being considered for a non-dialysis treatment pathway. Risk prediction is gaining increasing attention with emerging literature suggesting improved patient outcomes through individualized risk prediction.1 Predictive models help inform the nephrologist and the renal palliative care specialists in their discussions with patients and families about suitability or otherwise of dialysis. Clinical decision-making in the care of end-stage kidney disease (ESKD) patients on a non-dialysis treatment pathway is currently governed by several observational trials.2 Despite the paucity of evidence-based medicine in this field, it is becoming evident that the survival advantages associated with renal replacement therapy in these often elderly patients with multiple comorbidities and limited functional status may be negated by loss of quality of life,3, 4 further functional decline,5, 6 increased complications and hospitalizations. Here we review the pertinent predictive models and risk calculators for ESKD and highlight the advantages and disadvantages associated with each. It is important to recognize that there is currently no consensus for conducting or reporting the development and validation of multivariate prediction models. Prediction models for chronic kidney were often developed using inappropriate methods and were generally poorly reported.7 A 'c-statistic' is a measurement of how well the model predicts the event. A c-statistic of 0.5 = no better than chance; a c-statistic of 1.0 = perfect prediction and is acceptable if ≥0.7. Models considered to be well reported include the Journal of the American Medical Association (JAMA) Tangri et al. model.1 The patient population in which the score was developed should be taken into account. Decision-making for ESKD patients are currently being guided by existing mortality prediction models developed and validated in dialysis patients.5, 8, 9 When considering treatment choices it is important to consider the following facts. There are around 800 kidney transplant operations performed annually. As at 4 January 2012 there were 1135 people waiting for a kidney transplant in Australia, which represents approximately 11% of the people receiving dialysis. Seventy-three per cent of people on the waiting list are aged less than 60 years, and 79% are waiting for their first transplant. The average waiting time for a transplant is about 4 years, but waits of up to 7 years are not uncommon. On average one Australian dies each week while waiting for a transplant.10 There are also paradoxical factors impacting on the outcome of dialysis patients such as that of high body mass index being associated with improved survival.11 A similar reverse epidemiology of obesity has been described in geriatric populations.12 The 'reverse epidemiology' of obesity or dialysis-risk-paradoxes' need to be considered in the decision-making equation. Efforts to obtain a better understanding of the existence, aetiology and components of the reverse epidemiology and their role in maintenance dialysis patients remain of paramount importance for future study. Newly emerging predictors of mortality in the non-dialysis population include a high comorbidity score,4, 5, 13 functional impairment3 and acute kidney injury secondary to a sentinel event or events on a background of chronic kidney disease (CKD). A predictive model that comprehensively incorporates variables relevant to the prognostic outcome of the non-dialysis population has yet to be developed. The evaluation of the needs in the Australian population in context to these scores must also be considered in the decision-making process and remains and unanswered area requiring investigation. The majority of the models below were specifically designed for the dialysis pathway population. The JAMA Kidney Failure Risk Equation (KFRE) is a predictive model, which uses demographic information and routine laboratory markers of CKD to predict which patients with CKD stages 3 to 5 will progress to the need for dialysis.1 Risk is given as a 5-year percentage risk of progression to ESKD. The MCS5 was adapted from the original Charlson Comorbidity Index8 to identify the subpopulation of sicker dialysis patients with a 50% 1-year mortality rate. It is a simple scoring system that adds scores for comorbidities to scores for age (Tables 2, 3).9 The score for comorbidity is added to a score for age (one additional point for each decade beginning at 40 years).15 The Surprise Question: 'Would I be surprised if this patient died in the next year?' has been shown to assist clinicians in those patients for whom palliative care is In one study in dialysis patients, the of within 1 year were in the patient group than the patient et al.9 developed a simple prognostic model to assist in determining risk of in dialysis patients by routine variables – of and peripheral vascular disease – with the to the Surprise of selected variables from the and the Surprise had superior prognostic than either et developed and validated a simple score in elderly ESKD patients to determine their should they commence dialysis. age was not associated with early mortality. risk factors were identified and rates from in the risk group to in the median group to 70% in the highest group (Tables This score should be as a to facilitate with the patient and family as to These are on the consensus of the who performed literature to decisions to or dialysis from and patients with acute kidney injury CKD and The guidelines the predictive models with the of the Tangri et al. present we suggest using the following predictive models and risk calculators for Predictive and risk calculators can provide a prognostic and highlight the likely outcomes in this elderly population with multiple comorbidities and limited functional However, a predictive model that comprehensively incorporates variables relevant to the prognostic outcome of the non-dialysis population has yet to be developed. As we have made into the and of predictive It is important to also recognize the that currently with the development and use of risk prediction The quality of life of patients with end-stage kidney disease (ESKD) is to be than that of the general 2 Although dialysis aim to the life of the ESKD patient, survival is by age and the of dialysis in the and with more patients had access to dialysis. In the last decade there has been more of a focus on the burden of dialysis, and survival This to the use of and with kidney disease patients their disease to assist in informed decision-making regarding dialysis decisions and within the renal haemodialysis patients have reported than patients treated with other renal replacement therapy particularly 4 A number of factors have been identified to impact on and include to a 6 and renal is also described in the literature as a predictor of mortality and Despite this the assessment of is not part of routine dialysis practice in Australia or New and found significant between dialysis scores using Kt/V and variables using the Kidney et found no change in variables with but significant in variables with improved and health poor social support and factors and depression are all predictors of hospitalization and mortality in scores are reported as a better predictor of mortality and hospitalization than The of are to with increasing studies by et and et less loss of over time in the elderly patients compared with the younger patients may their life or health as their health is shown in studies to between dialysis The Options for Dialysis in the study that although haemodialysis patients elderly patients similar whether on haemodialysis or It should be in that of dialysis patients is reported to be similar to that of patients living with a Renal patients with a high symptom burden often have to evidence-based literature regarding on dialysis is important when patients with the information they need to make a decision regarding although a should not be used as a measure of whether should be onto dialysis. Dialysis should offer quality as well as of life for the patients, but for the elderly, this may not be the some elderly patients may quality over of is about by patients discussions as a measure of the burden RRT may have on their current 22 In the health the use of validated is to change in health status over time and identify to other factors such as disease or 23 to treatment is an important issue where lack of may impact the patient's decision on whether to commence treatment or not. Many Australian patients have to or consider out of their home or from family and in to to access treatment. This will have a impact on decision-making regarding whether to commence dialysis treatment or not for the patient, and their family and reported of are role general health role social function and These are by a of factors such as social symptoms and 25 it is important that patients their to bias and the in for people with or because of of validated the on It is important there is no of on the patients QOL. person has a and of to them not as by all patients and families to informed decisions regarding of life used within the kidney disease population include the Short Form Health Survey which variables in and with the and should be for with of where A renal specific the Kidney of which include the variables renal specific It is available in the and The has and is available through Health is the of the the in the A at the population the of has and over different and symptom to choose from including but specifically for chronic renal The is a using usual and each with of and a The is validated in Australia but including New with many The Health is another which is recommended by et al. for use where a is otherwise if a disease specific is they the or one of An Zealand be with a single such as the as a for dialysis and dialysis patients or the renal specific to improve patient care through management to improve factors such as and dialysis and provide support may impact on the patients QOL. The patient's on how dialysis will impact their perceived future is an important to be included in dialysis and depression is associated with increased and mortality. may be that for elderly patients on haemodialysis or dialysis is of dialysis patients is similar that to patients with a and is in renal patients with a high symptom The impact of lack of access to health care through lack of must be considered in a patient's dialysis decision-making as lack of can have a significant

BACKGROUND: Rates of End-Stage Kidney Disease among Aboriginal and Torres Strait Islander (Indigenous) Australians in remote areas are disproportionately high; however, haemodialysis is not currently offered in most remote areas. People must therefore leave their 'Country' (with its traditions and supports) and relocate to metropolitan or regional centres, disrupting their kinship and the cultural ties that are important for their wellbeing. The South Australian Mobile Dialysis Truck is a service which visits remote communities for one to two week periods; allowing patients to have dialysis on 'Country', reuniting them with their friends and family, and providing a chance to take part in cultural activities. The aims of the study were to qualitatively evaluate the South Australian Mobile Dialysis Truck program, its impact on the health and wellbeing of Indigenous dialysis patients, and the facilitators and barriers to using the service. METHODS: Face to face semi-structured interviews were conducted with 15 Indigenous dialysis patients and 10 nurses who had attended trips across nine dialysis units. Realist evaluation methodology and thematic analysis established patient and nursing experiences with the Mobile Dialysis Truck. RESULTS: The consequences of leaving Country included grief and loss. Barriers to trip attendance included lower trip frequencies, ineffective trip advertisement, lack of appropriate or unavailable accommodation for staff and patients and poor patient health. Benefits of the service included the ability to fulfil cultural commitments, minimisation of medical retrievals from patients missing dialysis to return to remote areas, improved trust and relationships between patients and staff, and improved patient quality of life. The bus also provided a valuable cultural learning opportunity for staff. Facilitators to successful trips included support staff, clinical back-up and a co-ordinator role. CONCLUSIONS: The Mobile Dialysis Truck was found to improve the social and emotional wellbeing of Indigenous patients who have had to relocate for dialysis, and build positive relationships and trust between metropolitan nurses and remote patients. The trust fostered improved engagement with associated health services. It also provided valuable cultural learning opportunities for nursing staff. This format of health service may improve cultural competencies with nursing staff who provide regular care for Indigenous patients.

BACKGROUND: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. METHODS: ) participated. Health-related quality of life (HRQoL) was assessed using Short-Form six dimensions (SF-6D, 0-1 scale) and care-related quality of life was assessed using the Carer Experience Scale (CES, 0-100 scale). Linear regression assessed associations between care-recipient treatment type, caregiver characteristics and the SF-6D utility index and CES scores. RESULTS: Of 63 caregivers, 49 (78%) were from Australia, 26 (41%) cared for an older person managed with dialysis, and 37 (59%) cared for an older person managed with comprehensive conservative care. Overall, 73% were females, and the median age of the entire cohort was 76 years [IQR 68-81]. When adjusted for caregiver sociodemographic characteristics, caregivers reported significantly worse carer experience (CES score 15.73, 95% CI 5.78 to 25.68) for those managing an older person on dialysis compared with conservative care. However, no significant difference observed for carer HRQoL (SF-6D utility index - 0.08, 95% CI - 0.18 to 0.01) for those managing an older person on dialysis compared with conservative care. CONCLUSIONS: Our data suggest informal caregivers of older people on dialysis have significantly worse care-related quality of life (and therefore greater need for support) than those managed with comprehensive conservative care. It is important to consider the impact on caregivers' quality of life when considering treatment choices for their care recipients.

BACKGROUND: Identification of people with deteriorating health is essential for quality patient-centred care and optimal management. The Supportive and Palliative Care Indicators Tool (SPICT) is a guide to identifying people with deteriorating health for care planning without incorporating a prognostic time frame. OBJECTIVES: To improve renal nursing staff confidence in identifying patients approaching end-of-life and advocate for appropriate multidisciplinary care planning. DESIGN: This pilot feasibility prospective cohort study conducted in the renal ward of a major metropolitan health service during 2019 included a preintervention/postintervention survey questionnaire. A programme of education was implemented training staff to recognise end-of-life and facilitate appropriate care planning. RESULTS: Several domains in the postintervention survey demonstrated a statistically significant improvement in renal nurses' perception of confidence in their ability to recognise end of life. Of the 210 patients admitted during the study period, 16% were recognised as SPICT positive triggering renal physicians to initiate discussions about end-of-life care planning with patients and their families and to document a plan. Six months poststudy, 72% of those patients recognised as SPICT positive had died with a documented plan of care in place. CONCLUSION: The use of SPICT for hospital admissions and the application of education in topics related to end-of-life care resulted in a significant improvement in nurses' confidence in recognising deteriorating and frail patients approaching their end of life. The use of this tool also increased the number of deteriorating patients approaching end of life with goals of care documented.