Comprehensive Insights into Palliative Nephrology: A Chapter in Contemporary Renal Medicine

2.1 Trajectory of CKD

Kidney disease progression occurs asymptomatically, only evident by eGFR decline. The eGFR is an important prognostic marker of risk of developing end stage kidney disease (ESKD), as well as risk of death and morbidity [10], however it loses some of its predictive ability in older patients¹¹, who are at most risk of increased frailty, multi-morbidity, and being exposed to aggressive therapies with limited benefit. Sicker patients may experience more rapid deterioration of GFR, with more frequent hospitalizations [11]. Each acute event experienced increases the risk of functional decline, and may eventually lead to transformation into frailty trajectory with need for institutionalization, and a switch towards palliative care philosophy [12]. The risk of developing ESKD may be highest around this transition, and may require important and difficult conversations with patients and their families about the benefits and risks of renal replacement therapies. The converse is also true; transitioning to ESKD can cause marked frailty. Tamura et al demonstrated a sharp decline in functional independence in elderly patients starting dialysis [13]. Only 13% of the sampled cohort maintained their functional status after 1 year. Similarly Jassal et al demonstrated marked loss of independence in patients starting dialysis after the age of 80 [14]. Acute illness events can serve as triggers for ACP conversations: a patient’s evolving experience of illness may be leveraged to align their expressed goals of care to the realities of their CKD. Without such experiences, patients and families are left in an unenviable situation of having to choose from abstract therapies with limited context. Regardless of whether patients choose to pursue renal replacement therapy, or a conservative (non dialytic) kidney management (CKM), there is usually an inflection point towards the end of their life at which point patients will experience an inexorable worsening of health unmitigated by disease specific therapies [15].

2.2 Conservative care pathways for CKD

Conservative Kidney Management (CKM) is a treatment approach for stage 5 CKD (estimated glomerular filtration rate (eGFR) below 15 mL/min/1.73 m²), aimed at delivering kidney supportive care to manage renal disease symptoms and complications without pursuing dialysis or transplantation. While CKD is associated with tremendous mortality risk, treatment with renal replacement therapy (e.g. dialysis) can be of limited benefit, especially in older patients with multiple co-morbidities and high baseline frailty [16]. Such patients may have median survival of no greater than 2–3 years after initiation of dialysis, and much of that may be spent hospitalized. Patients may experience increased functional dependence, institutionalization, and cognitive decline and a decrease in quality of life after reaching ESKD [13]. In older patients with multiple co-morbid conditions, there is little if any survival advantage to choosing a dialytic pathway [13, 17].

Conservative non-dialytic kidney management is, thus, a viable option for certain patients whose goals of care do not align with aggressive life sustaining measures such as dialysis. It is important that health care providers in nephrology participate discuss goals of care with patients, and educate patients about the risks and benefits of the different options available to patients upon reaching ESKD, including renal replacement therapy (RRT) and CKM [18]. Patients should have a complete understanding of what life on dialysis entails, in terms of not only survival, but also its effect on their quality of life. On the other hand, patients, for whom CKM is recommended, should know that their overall survival may be impacted by foregoing dialysis, and what end of life care entails.

Patients that are well educated about end stage kidney disease and are invited to share in the decision making with their families and the nephrology team are more less likely to have decisional regret and have a stronger relationship with the medical team [19].

Patients who choose CKM do not always end up foregoing dialysis; reasons for decisional switch include family influences, worsening symptoms including fluid overload that are refractory to medical management, or decisional regret. For some patients it may be a consequence of poor communication about CKM early on in the education process [20]. It is also possible that some may not be able to foresee the implications of their decision and may conflate CKM with the expression of their desire to avoid dialysis. In other cases, deferring the decision of choosing a RRT modality may be a maladaptive coping mechanism to deal with their progressive chronic kidney disease diagnosis. There is a paucity of literature to help understand the reasons for changing decisions, but there may be an increased rate of acute hospital-based dialysis starts in this population, which the literature has shown leads to poorer outcomes [21]. CKM patients tend to spend less time in the hospital compared to those on dialysis [22, 23]. CKM offers opportunities for more effective symptom management, palliative care, and hospice services.

2.3 Shared decision making and advanced care planning (ACP)

Shared decision-making is the cornerstone of kidney supportive care; it involves information giving, discussing prognosis, and advanced care planning (ACP). The care plan must be attuned to the patient’s needs and perspective, accommodating their lifestyle, family, community, and cultural beliefs. This involves allowing patients to prioritize medical care components most important to them, balancing symptom management and quality of life with long-term survival [24, 25]. ACP involves understanding and sharing personal values, life goals, and medical care preferences It is imperative that these discussions happen in a sensitive manner; for patients, the idea of losing their kidney function is naturally distressing [26]. Using a framework for communication that helps to prepare patients for receiving bad news can be helpful, and it is important to ensure that the patient is well supported [27]. There is ample evidence that patients wish to be well informed about the trajectory and prognosis of their condition [28]; nephrologists will need to be prepared to be able to accurately prognosticate, and incorporate objective and subjective measures of the individual in front of them to provide an estimation of the survival and HRQoL impacts. ACP should be integrated into routine kidney care, and ideally readdressed as the illness progresses, normalizing the process.

One particular tool may be the use of the best-case/ worst-case scenario framework, which is increasing being used in the surgical and palliative fields [29]. Patients are provided with the best-case scenario, the worst-case scenario and the most likely scenarios of starting dialysis or not; this helps provide a spectrum of possible outcomes, giving the patients a deeper understanding of what life with or without dialysis entails instead of an abstract picture.

Unfortunately, many dialysis providers do not feel comfortable addressing end of life issues [30]. This is counter to the evidence that dialysis patients have clear preferences about end of life care [31]. Similarly, many nephrologists do not feel comfortable discussing conservative models of kidney care where dialysis may be deferred in those with limited life expectancy, poor functional status (frail, institutionalized), or those whose preferred goals of care do not include renal replacement therapy [32].

2.4 Prognostication

Prognostication is a key element in the shared decision-making process and advanced care planning. Having knowledge of the trajectory of disease in CKD and the factors that predict poor outcomes in CKD or ESKD allow nephrologists to identify those individuals who may benefit from a palliative approach to CKD. With the help of prognostic tools, the nephrologist can provide realistic expectations to the patients allowing them and their families to make a more informed decision about their plans. Patients with a likelihood of limited survival would also benefit from a more timely referral to palliative care services. Prognostication tools can be useful in identifying those who would not necessarily benefit from dialysis. Studies have shown that patients over 75 with eGFR <15 ml/min/1.73m² and with multiple comorbidities who have chosen to dialysis if they reach ESKD do not fare much better than those who opt for a conservative care pathway [17, 33].

Certain risk factors such as age, serum albumin, functional status, and co-morbidities predict poor outcomes on dialysis [34]. The Charlson comorbidity index (CCI) has also been shown to have some predictive ability, with a score of ≥8 signifying an approximately 50% one year mortality rate [35, 36].

One relatively simple yet effective tool that is used extensively by palliative specialists is the “surprise question (SQ)”: “Would you be surprised if this patient were to die in the next 12 months?” It has been validated and prevents overestimation of survival prognosis [37]. The SQ has been shown to identify dialysis patients with lower functional status scores, higher co-morbidity scores and who are 3.5x more likely to die in the next year [37]. Cohen et al combined more traditional risk factors with the surprise question to create an integrated prognostic tool, this includes age, serum albumin, PVD, dementia and the surprise question to predict one year mortality in maintenance hemodialysis patients [38]. More investigations are required to determine its predictive accuracy, and its performance in peritoneal dialysis patients is uncertain [38].

Using the French Renal Epidemiology and Information Network (REIN) database, Couchoud et al developed a model for incident dialysis patients [39]. It integrated measures of function (dependence for transfers), nutritional metrics (BMI) and comorbidities to predict 6-month mortality rates. There are similar tools developed for patients with CKD IV and V that estimate 6 month and 12-month mortality. One such calculator was developed by Schmidt et al (2019) that uses a modified Karnofsky scale as a measure of functionality, as well as the SQ and age [40]. The authors found that subjective measures were more discriminating than objective values like albumin, although bias from potential variability in how providers assessed patients could not be excluded. The data set for developing the model was also limited; important variables such as albuminuria could not be captured [40].

2.5 Role of palliative care in nephrology

Palliative care addresses physical, psychological, social, spiritual, and existential needs of serious illness patients, aiming to enhance quality of life by alleviating suffering and managing symptoms [41]. A palliative philosophy of kidney care places equal emphasis on both symptom management and life extension, and it can be instrumental in providing holistic patient centered care. In order to provide such care optimally, this philosophy needs to be integrated within the overall structure of nephrology practice. The key components of kidney palliative care include Advanced care planning, pain and symptoms management, end of life care and bereavement support [42]. A palliative philosophy is not exclusive to CKM patients, but also relevant in patients whose goals of care include dialysis.

Partnerships with palliative care services help bridge the transition to end of life care without acute crises. Early or timely referral to palliative care may be the best way to facilitate a smooth transition from CKD stage V to ESKD without inflicting emotional or physical suffering on the patient (usually via unnecessary hospitalizations, and aggressive medical interventions such as surgical procedures in acute settings) [43]. This is associated with higher patient satisfaction, and improved control of symptoms with overall more goal concordant care [43]. It may also provide support to the patients with respect to existential dread and grief as they approach end of life.

Including palliative care experts in goals of care conversations can be very important, and helpful in exploring advanced care planning and end of life transitions. Creating a plan and aligning patients’ expectations with illness progression can ensure seamless transitions, avoiding unnecessary hospitalizations and other end of life crises [44].

3.1 The burden of symptoms in CKD

Patients with advanced CKD approaching ESKD bear a substantial symptom burden. This necessitates continuous attention throughout their illness journey, with particular focus as they approach the end of life. In a study involving 472 patients with advanced CKD, where imminent death was anticipated, pain emerged as the most prevalent symptom (69%), followed by respiratory secretions (46%), anxiety (41%), confusion (30%), dyspnea (22 percent), and nausea (17%) [45].

CKD patients have a multitude of pain syndromes including arthritis, neuropathic pain from diabetes or inflammatory diseases [46, 47]. Among patients with ESKD, a notable 63.1% reported musculoskeletal-related pain as the predominant issue, while 13.6% experienced pain linked to the dialysis procedure [47].

Uremic neuropathy was common in the past; this was due to thiamine deficiency from the B1 vitamin being easily dialyzable but now patients are supplemented with renal vitamins. Dialysis related amyloidosis related to B2 microglobulin can cause various musculoskeletal ailments, including carpal tunnel syndrome and osteoarthropathies. Renal osteodystrophy related to dysregulation of the calcium – phosphate axis can also lead to severe bone disease including pathologic fractures, osteolytic lesions, brown tumors (osteitis fibrosa cystica), Calcific uremic arteriolopathy (calciphylaxis), muscle weakness and pain. Ischemia to the gut during dialysis in vasculopathic patients may lead to severe abdominal pain, GI bleeding, and nausea/ vomiting. Peritoneal dialysis patients may experience GI discomfort from the presence of peritoneal fluid, pain from drainage, increased pill burden from reduced efficiency, and in rare cases encapsulating peritoneal sclerosis leading to bowel adhesions, and obstruction. Access related complications are a concern in both modalities of dialysis. Gout can also be quite debilitating in the CKD population.

Unfortunately, the ability of dialysis to treat uremia related symptoms may also be limited and may be outweighed by unintended adverse effects of dialysis precipitating symptoms that worsen quality of life and cause a significant burden of suffering. Patients on dialysis may experience symptoms related either to undertreated uremia, intradialytic symptoms, or due to other co-morbid conditions exacerbated by ESKD. 40% of hemodialysis sessions are associated with symptomatic hypotension, nausea, cramping and/ or vomiting [48]. Dialysis patients often experience pruritus, either due to poor clearance of their toxins, or as a reaction to dialyzers or other products used during the treatment (e.g. chlorhexidine). Patients may also have chest pain, difficulty with cognition during the treatment, and difficulty sleeping after. Many patients complain of a “washed out” feeling after dialysis that may not improve until close to their next session.

3.2 Symptom assessment

A study comparing symptoms and quality of life in patients with cancer and those with end-stage renal disease found that advanced CKD patients experience a symptom burden and quality of life impairment akin to terminal malignancy patients [49]. CKM patients also experience a similar number and severity of symptoms as those on dialysis. Understanding the physical and emotional symptom burdens in all chronic kidney disease patients, whether on dialysis or receiving conservative management, is pivotal for enhancing their health-related quality of life.

Clinicians may find it useful to employ established assessment tools such as The Edmonton Symptom Assessment System modified for nephrology care– developed in Canada (ESAS-r:Renal) [50], the Integrated Palliative Care Outcome Scale (IPOS-renal) or the Kidney Disease Quality of Life (KDQOL-36) [51]. These tools can help identify patients with large burden of uremia, and monitor the effectiveness of treatment. The Brief Pain Inventory can be used to evaluate pain management [52].

3.3 Managing symptoms

The goal of symptom management is to alleviate symptoms without causing drug toxicity. Administering medications in advanced CKD is complex due to its impact on renal excreted drug pharmacokinetics. For those undergoing dialysis, the influence of dialysis on the drug must also be considered.

3.4 Pain

Addressing pain requires a careful evaluation of the source, and nature of the pain and a nuanced multimodal approach. Integral to chronic pain management are non-pharmacologic therapies, which can serve as standalone treatments or complement pharmacologic approaches. These can include physiotherapy, massage, chiropractic adjustments, ice/heat applications and meditation.

Pharmacologic treatments work best when targeted to the causal factors, and the pathologic mechanisms (e.g. nociceptive vs. neuropathic pain). The classic approach to pain control is that of a stepwise careful escalation of analgesia, aligning with the World Health Organization’s (WHO) guidelines [53]. The WHO ladder approach advocates starting with non-opioids with or without adjuvants, and then adding opioids of increasing potencies as needed. Although this strategy is often successful, there are some important departures, the most notable of which is the contraindication of NSAID use in CKD. Occasionally, short-course NSAIDs might be prescribed, assuming a calculated risk, particularly in patients without residual renal function or nearing the end of life. Topical NSAIDs have fewer adverse effects, although there may be some increased systemic absorption in patients with lower muscle mass [54].

Neuropathic pain is common in CKD and ESKD. In cases of conservative kidney management, the frontline approach to neuropathic pain involves calcium channel-α 2δ-ligands like gabapentinoids [55]. These do accumulate in CKD, and can cause drowsiness and increased risk of falls [55]. They should be started at low doses, and slowly titrated up. Atypical antidepressants such as duloxetine, and anti-epileptics may also treat neuropathic pain.

If pain is not well controlled, opioid use may be necessary. The initiation of opioids should involve low doses, careful adverse effects monitoring, and gradual titration. Most opioids undergo liver metabolism into either active or inactive metabolites, with the kidneys being the typical excretion route for these compounds, including some unchanged opioids [56]. If a substantial portion of unchanged opioid is excreted via the kidneys and the metabolites remain active, the opioid is likely to induce toxicity when eGFR drops below 30 ml/min/m² [56]. Opting for short-acting preparations over longer-acting ones is strongly recommended, especially if patient is opioid naïve [46]. Hydromorphone may be preferred over morphine, whose metabolites are more likely to accumulate in kidney disease causing risk of over-narcotization [46].

Constipation is a common side effect of opioid use. Medications like sennosides, stool softeners (bisacodyl), lactulose or polyethylene glycol (PEG) can be safe and effective laxatives. However, laxatives containing magnesium, citrate, or phosphate should be avoided in ESKD [57].

3.5 Pruritus

The etiology of uremic pruritus remains intricate and not fully understood. Factors like uremic neuropathy, chronic systemic inflammation triggering skin or nerve inflammation [58], and heightened μ-opioid receptor activity are all implicated contributors. Due to the complexity of pruritus in CKD, managing this symptom can be challenging, with various treatments proposed, each offering only modest effectiveness.

Initiating management begins with optimizing renal care. Addressing elevated phosphate levels and hyperparathyroidism, which could contribute to pruritus, is important, involving dietary adjustments and the use of phosphate binders. Preventive measures like nail care and maintaining a cool environment through lightweight clothing and tepid baths are also beneficial. Emollients and other topical analgesics (e.g. camphor and/ or menthol) constitute the primary treatment for uremic pruritus, especially for dry skin.

Navigating pharmacological interventions can be challenging due to a lack of clear evidence favoring one approach over another. While some evidence supports use of UVB light therapy, its accessibility may be limited⁷⁷. A recent systematic review highlighted the effectiveness of low-dose gabapentin or pregabalin for uremic pruritus, although evidence for other interventions remains limited [59]. Antihistamines are not recommended as first line, given that uremic pruritus operates through a non-histaminergic itch pathway Mirtazapine, with adjusted dosing for renal impairment, also demonstrates some efficacy [60].

3.6 Nausea and vomiting

Nausea and vomiting often have multifactorial origins. Uremia may cause unremitting nausea, and sensitive gag reflex. In CKM patients, treatments include dietary changes such as decreased protein intake, and smaller meals may help. Other factors such as gastroparesis, and medication side effects should be excluded or treated. Symptoms like bloating, epigastric fullness, flatulence, hiccups, or heartburn may accompany this condition. Gastritis-related nausea often coincides with heartburn, dyspepsia, or epigastric pain. Constipation can exacerbate nausea and vomiting.

Antipsychotics such as olanzapine in low doses are effective in treating uremic nausea. Haloperidol can also be effective, but can cause extrapyramidal symptoms, and are often reserved for nausea in end-of-life patients. 5HT3 antagonists such as ondansetron may be effective as well. Prolonged QTc may limit usage of all these compounds [61].

3.7 Restless legs syndrome (RLS)

Restless legs syndrome (RLS) manifests as an urge to move the legs accompanied by discomfort, exacerbated during rest, particularly at night. RLS’s precise cause remains uncertain, with factors like dopaminergic system dysfunction, and iron deficiency, and uremia. Effective management involves addressing these factors and minimizing exacerbating agents like caffeine, alcohol, nicotine, and certain drugs. Gabapentin or pregabalin, often effective for dialysis patients, are often first line options [62]. Dopamine agonists like pramipexole are also effective, but can cause side effects like nausea, dreams, and nightmares.

3.8 Palliative dialysis

Renal replacement therapies include intermittent hemodialysis, peritoneal dialysis and kidney transplantation, as well as CKM. Hemodialysis can be offered both at home as a self-administered therapy or in monitored facilities (hospitals or clinics) by nurses or technicians, while peritoneal dialysis is exclusively a home-based therapy, with or without the help of a trained nurse. Dialysis is purported to have two major benefits – prolongation of life in the context of ESKD, and to treat uremic symptoms (dyspnea, peripheral edema, nausea, anorexia, dysgeusia, pruritus, cramping, etc.). Dialysis does have a role in palliating symptoms of uremia, although this benefit is not always realized in all patients. Dialysis can be quite effective in controlling volume overload in patients, and may treat severe nausea, and vomiting, however other symptoms mentioned above are inconsistently treated. Many patients on dialysis continue to complain of pruritus, fatigue, insomnia and cramping, especially older, frail patients with comorbid illnesses [63]. Paradoxically, dialysis therapy can precipitate the very same symptoms that it is supposed to treat and may cause or exacerbate other symptoms such as pain, weakness and worsened cognition [64]. The latter is often due to dialysis related hypotension, or due to its effects on cardiac function and cerebral perfusion [65]. Symptom burden accounts for 29% of the impairment in physical HRQoL, and 39% of the impairment in mental HRQoL in ESKD [50].

Despite the poor performance of extracorporeal renal replacement therapy in quality of life and survival metrics, especially in older patients, many patients approaching ESKD will not eschew the therapy, often due to existential angst or having goals they wish to achieve before death [66].

For patients who desire to continue dialysis despite poor survival prognosis, an attempt should be made to tailor their treatments to optimizing symptom control, while minimizing the associated adverse effects. This concept is known as palliative or “comfort” dialysis. Rather than a “one- size- fits- all” style of dialysis, focused on conventional disease-oriented treatment, the approach of palliative dialysis is that it should align with the specific needs, values and goals of the patient, thus fitting with the principles of palliative care; it should provide relief from pain and other symptoms, regardless of life expectancy and prognosis, prioritizing comfort [66, 67].

Palliative dialysis may entail a de-emphasizing of clearance adequacy targets; rather than tailoring frequency and length of dialysis to achieve lowered urea levels, symptom control is the end goal. Older patients may require less dialysis time if they have lower metabolic needs, and thus lower uremic toxin production. Lower blood flow rates and dialysis flow rates may theoretically allow better tolerance of dialysis with increased fluid removal. Patients with residual urine output may not require as much ultrafiltration permitting them to dialyse less frequently. Reduction of dialysis may help reduce the burden of travel to and waiting at the dialysis unit, which can be substantial. Sitting in uncomfortable postures for 4 hours maximum may be a source of pain and suffering for patients.

On the other hand, palliative dialysis does not automatically equate to less dialysis. Some ESKD patients may benefit from increased length or frequency of dialysis to control uremic symptoms or improve their bone mineral metabolism parameters. Nocturnal (in-center or home) hemodialysis may help achieve those results. Patients that find it difficult to sit for the requisite 4 hours, but still benefit from additional clearance, may prefer shorter but more frequent sessions, if they do not find the travel to a dialysis center cumbersome. Some patients who suffer from isolation may enjoy the socialization that a communal dialysis unit offers.

Home dialysis with assisted PD or assisted home hemodialysis may be ways to get adequate clearances with less discomfort [68]. More clearance may also allow patients to liberalize their diet, and optimize nutrition, leading to less weakness, fatigue, overall better health and HRQoL. Access issues are also a major consideration in palliative dialysis approaches. Older patients with poor vasculature and limited life expectancy may not necessarily require a permanent AV access; instead, a CVC may be reasonable, with less concern of pain and bruising related to needling of a fistula or graft [67]. In frail patients, graft and fistulas may not be as successful with respect to creation and may have higher rates of steal syndromes leading to pain and weakness in the involved arm and hand [69].

Medications such as anti-hypertensives, phosphate binders may not need to be aggressively prescribed, and management of traditional CKD and ESKD parameters should be balanced with potential negative impacts on their quality of life. Using erythropoietin-stimulating agents to target higher hemoglobin levels in patients with severe fatigue may outweigh the potential risks of hypertension and thrombosis that have been seen with hemoglobin levels over 115 g/L. While studies did not show a significant HRQoL benefit of targeting higher hemoglobin levels, there were few older individuals in such studies [67], and the results may not be applicable to patients with limited life expectancy undergoing palliative dialysis. There may be a potential trade-off between survival and comfort with any of these strategies; nephrologists should discuss these issues with their patients to ensure that all parties have a good understanding of the risks and benefits of palliative dialysis in order to make an informed choice that reduces regret. Involving palliative care physicians to help with identifying areas of suffering in ESKD patients may help formulate palliative strategies.

There are certain barriers to providing palliative dialysis – Physicians face pressures to achieve certain adequacy and quality targets that are based on metrics like clearance; these can be tied to remuneration policies [66]. Dialysis staff and facility schedules are predicated on patients having a fixed schedule with limited changes on a day to day or week to week basis [66].

5.1 Barriers to effective palliation and end of life care

Patients with ESKD are less likely to receive hospice care than patients with other types of terminal illness [5]. Only 20% of patients with ESKD in the US utilize hospice compared with 55% of patients with cancer, and 39% with congestive heart failure [4]. The main barriers to appropriate end of life care in CKD patients include access, as well as patient and practitioner attitudinal factors [67]. Knowledge gaps and competing priorities are other challenges¹¹¹.

The current model of renal care in most centers is poorly equipped to help patients and their families address the emotional and existential challenges of navigating their advanced CKD and the complex treatment decisions required, such as whether to start dialysis, or stopping dialysis when it becomes burdensome. Access to specialized palliative care for patients with ESKD on maintenance dialysis is limited, despite dialysis providers identifying it as the second highest priority to improve palliative care for their patients [82]. Palliative care services can be limited geographically and available only in tertiary care centers [83]. Patients that are ill but not hospitalized or imminently dying may be precluded from such care. Workforce shortages are also a major barrier; the specialty of palliative care has certainly grown rapidly; however, the existing demand still outpaces the available number of trained palliative care physicians. The burden thus falls on the primary nephrologist; however, there is limited training in palliative care in nephrology curricula. Trainees graduating fellowship programs have identified palliative care in nephrology as a major unmet learning need [84].

The hospice model is insufficient to meet the needs of seriously ill patients with CKD and ESKD. In the US Medicare beneficiaries are only eligible for hospice care if they agree to forgo or withdraw from dialysis therapy unless they have another terminal illness unrelated to their renal disease [83]. Outpatient palliative care programs suffer from lack of parity in reimbursement; there may be an incentive to initiate dialysis therapy than to manage conservatively in an interdisciplinary palliative care program.

Patient attitudes towards palliative and end of life care can create a barrier in itself. Many patients on dialysis express a desire for life prolongation even at the cost of increased suffering. This is borne out in so far that nearly half of dialysed patients die in hospital compared with 35% of all Medicare beneficiaries with other severe illnesses [85]. However, a Canadian study did show that patients were willing to forgo 7 months of life expectancy to reduce the number of visits to hospital, and up to 15 months to increase their ability to travel [86].

5.2 Ethical and legal issues

There are many ethical issues around the care of dialysis patients. One question that many nephrologists grapple with is that of the appropriateness of withholding or withdrawing dialysis. This dilemma presents itself particularly when goals and expectations are not congruent between the provider, the patient, and their families. Certainly, patients have the autonomy to refuse, or stop dialysis; they have an ethical and legal right of self-determination. Physicians also can determine if dialysis will not offer a reasonable expectation of medical benefit on the basis principle of beneficence and non-maleficence. However, it is difficult to determine that risk benefit trade-off in ESKD where trajectory of disease progression can be unpredictable as can be a patient’s response to, and tolerance of dialysis [87]. Many Nephrologists would elect to provide dialysis at the behest of the legal agent, against their reservations. In one study, 17% of nephrologists surveyed reported they would start dialysis at the family’s request for a permanently unconscious patient despite being deeply conflicted [88]. The reasons for doing so include fear of litigation, uncertainty of the law, and their own unqualified valuation for the preservation of life [88].

To guide renal physicians through these complex issues, the Renal Physician’s Association and American society of nephrology developed a clinical practice guideline about the appropriate initiation and withdrawal from dialysis [87]. The key emphasis was on the importance of communication, education and shared decision making [88]. The guidelines recommended that it was reasonable not to initiate dialysis in patients with terminal illnesses or medical conditions that would preclude the technical process of dialysis, or in those with profound neurological impairment. A systematic approach to conflict resolution was recommended in all cases of disagreement. Conflicts often rise due to miscommunication or misunderstanding about the nature of disease progression and the prognosis, or due to a misalignment of values. There was a provision that a time limited trial be considered in those patients with uncertain prognosis, or where there was no consensus about the utility of dialysis.