INTRODUCTION — There are increasing numbers of patients with advanced chronic kidney disease (CKD) who are older, frail, have multi-morbidity, and poor functional status. Furthermore, patients with advanced CKD, with or without dialysis, have high symptom burden and poor quality of life [1-3]. Since nearly 20 percent of dialysis patients withdraw from dialysis prior to death and, increasingly, older, frail patients with end-stage kidney disease (ESKD) are choosing not to start dialysis when it is recognized that dialysis may be of little or no benefit and potentially harmful, it is likely that all nephrologists will be involved in end-of-life care of patients with advanced CKD. Patients with advanced CKD require active and holistic management of their evolving care needs and may benefit from palliative care throughout their illness trajectory [3-5].
This topic will review the principles and delivery of kidney palliative care for patients with advanced CKD, with particular attention to the care of patients who withdraw from dialysis or choose conservative kidney management (ie, not to initiate dialysis) in the last weeks of life. Principles of palliative care will be addressed, as well as guidelines for the use of analgesia in these patients. Indications for and the clinical approach to conservative kidney management and withdrawing dialysis are discussed elsewhere. (See "Kidney palliative care: Conservative kidney management" and "Kidney palliative care: Withdrawal of dialysis".)
DEFINITION AND PRINCIPLES OF KIDNEY PALLIATIVE CARE — Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients and families in the setting of serious illness [6,7]. The goal of palliative care is to achieve the best possible quality of life by relieving suffering, controlling symptoms, and restoring functional capacity, while maintaining sensitivity to personal, cultural, and spiritual beliefs and practices [6]. The limiting belief that palliative care and terminal care are synonymous, such that only patients at the end of life are appropriate for palliative care, remains prevalent among patients, families, and health care providers [8,9]. The international kidney community is increasingly using the synonymous term "kidney supportive care" rather than "kidney palliative care" to help reinforce the appropriateness of this kind of care throughout the symptomatic illness trajectory and to distinguish it from end-of-life care [10-12].
Kidney palliative care can be provided together with therapies intended to prolong life, such as dialysis. Integral to the precepts of palliative care is an interdisciplinary approach focusing upon physical comfort (managing pain and other symptoms) and psychological, spiritual, and social support for the patient and their family and community. The goal is to provide a support system to help patients live as actively as possible until death. Kidney palliative care, therefore, is not restricted to withdrawal of dialysis or conservative kidney management. Patients with advanced chronic kidney disease (CKD) frequently have palliative care needs for years before death due to high symptom burden, functional decline, and poor quality of life. Ideally, palliative care should be started early so that issues of suffering are addressed as they arise. (See "Kidney palliative care: Conservative kidney management", section on 'Components of CKM'.)
As CKD advances, patients' goals of care often shift to focus more on quality of life rather than survival, with a strong emphasis on emotional, social, and family/caregiver support. For patients with CKD, part of the social support comes from the dialysis and transplant community. Dialysis unit staff should be involved in such care and also must recognize their responsibilities in the core components of palliative care, such as advance care planning, pain and symptom screening and management, and bereavement support [10,13-16]. Thus, among patients with advanced CKD, kidney palliative care assumes an increasing priority over disease-directed care and eventually, during the dying process, will focus exclusively on terminal, end-of-life care.
KIDNEY PALLIATIVE CARE BENEFITS AND BARRIERS — In patients with advanced chronic kidney disease (CKD), need-based palliative care services can be used throughout their illness trajectory; however, hospice care is typically limited to the management of patients who are believed to be within six months of death and who are willing to relinquish curative treatments. (See "Hospice: Philosophy of care and appropriate utilization in the United States".)
Benefits — Patients who undergo palliative care consultations are more likely to experience lower symptom burden at the end of life, to receive care consistent with their preferences, and to use hospice services [17-20]. In addition, they are less likely to die in acute care settings or intensive care units with aggressive and invasive interventions.
In addition to improved quality of life, palliative and hospice care in patients with ESKD can result in reduced health care costs [19,21,22]. As an example, in a study of 6333 hospitalized patients with ESKD, provision of inpatient palliative care was associated with a 21 percent shorter length of stay and 14 percent lower hospital costs among those who ultimately died, and a 20 percent lower rate of rehospitalization among those who survived [19].
Barriers — Despite these potential benefits, palliative and hospice care are underutilized in patients with advanced CKD. In the United States, for example, dialysis patients account for only 3 percent of those admitted to hospice with a noncancer diagnosis [23], and only a small minority of dialysis patients who die receive hospice or palliative care services [21]. Black American and Hispanic American patients are substantially less likely to be offered such services as compared with White American patients [24]. In addition, patients are typically referred to hospice late, after all other treatment options have been exhausted, and when patients' care needs are complex. This complicates the transition to hospice, makes it difficult to provide adequate home hospice services, and promotes continued reliance on the acute care system [25].
Patients with ESKD who do receive palliative or hospice care services are typically those who opt to withdraw from dialysis [21,24]. Even in this subset who withdraw from dialysis, palliative care consultative services are infrequently used (approximately one-third in a single United States center) [22].
Substantial barriers to palliative care delivery exist in the United States and elsewhere, including uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives [26]. In addition, nephrologists tend to be poorly trained in palliative care and often feel uncomfortable with the care of dying patients [27,28]. In one survey of American and Canadian clinicians, only approximately 40 percent of 360 nephrologists stated that they were very well prepared to make end-of-life decisions [28]. Despite the identification of the importance of palliative care in CKD management, nephrology fellows remain uncomfortable and inadequately trained in these aspects of clinical care [29,30]. (See "Kidney palliative care: Withdrawal of dialysis".)
In addition, patients lack understanding of the potential benefits of palliative and hospice care. As an example, in a study of dialysis patients in the United States for whom dialysis was discontinued, 24 percent refused a hospice referral, suggesting that they did not understand the purpose and benefits of hospice [31]. In a Canadian study of 436 patients with ESKD (receiving either dialysis or conservative kidney management), only 22 and 18 percent possessed a correct understanding of palliative and hospice care, respectively [9]. Most patients had a poor understanding of the types of services palliative and hospice care provided and their perceptions were often negative. However, these same patients had positive attitudes towards these same services once they were provided with a description.
We agree with efforts by Kidney Disease: Improving Global Outcomes (KDIGO), the Renal Physicians Association (RPA), and the United Kingdom National Health Service to identify the key issues related to palliative care in patients with advanced CKD, and to develop globally applicable guidelines [10,13,15,32]. To aid in this effort and address education deficits, multimodal curricula that address essential concepts related to conservative kidney management have been developed [33,34].
CORE COMPONENTS OF KIDNEY SUPPORTIVE CARE
Shared decision making — Shared decision-making is the foundation of kidney supportive care and must be incorporated into all components from assessment and management of suffering, sharing prognosis, and advanced care planning (ACP), through CKD delivery of end-of-life care and bereavement support. Care teams must understand and incorporate the patient's needs and perspective and adapt the care plan to facilitate integration of the patient's lifestyle, including their family, social community, and cultural beliefs, to relieve suffering. This means allowing the patient to prioritize the components of medical care deemed most important to them [3,13,35]. As an example, this may require greater emphasis being placed on managing bothersome symptoms rather than maximizing long-term health outcomes such as survival.
Quality-of-life assessment — Quality-of-life assessment should begin with the diagnosis of CKD and continue until death. We assess patient-reported symptom and quality of life outcomes at every routine patient visit (typically every two months in patients receiving dialysis and every three months in patients with advanced CKD who are not receiving dialysis). Multidimensional patient-reported quality of life varies over time, regardless of overall disease trajectories [36], emphasizing the need for serial assessments. Symptom assessment is integral to quality-of-life assessment, as is assessing the impact of disease on functional status.
Various tools have been used by nephrologists and dialysis programs to assess the quality of life of CKD patients, although the most appropriate tool and how it can best be integrated into clinical practice remain unclear. A common approach is to administer both a generic and disease-specific patient-reported outcome measure, especially when monitoring health and how it changes over time [37].
We use the EQ-5D-5L as a generic preference-based measure of quality of life. This has been promoted as the instrument of choice in many clinical areas and settings, including in CKD [38]. The EQ-5D-5L includes a health status classification system with five dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression), each with five levels of problems (1 = none, 2 = mild, 3 = moderate, 4 = severe, 5 = extreme) [39,40].
We also use the validated Edmonton Symptom Assessment System-Revised: Renal (ESAS-r:Renal) [41,42] to assess the prevalence and severity of 13 symptoms commonly experienced in CKD. This assessment uses a visual analog scale (VAS) with a superimposed 0 to 10 numerical rating scale. Issues assessed include pain, activity level, nausea, depression, anxiety, drowsiness, appetite, wellbeing, shortness of breath, pruritus, sleep, and restless legs. A caregiver can complete several items on the questionnaire if the patient is too ill to participate in the evaluation. It has been translated into several languages.
In addition to assessing quality of life, we also assess frailty as needed (based upon the clinician's observations, concerning reports from the patient or family members, or objective measures such as weight loss). Frailty, a clinical construct initially described in the geriatric population, is recognized as a predictor of mortality, quality of life, and functional status in patients with advanced CKD [43]. Frailty may be defined either by performance on tests of physical function (eg, get up and go test) or by self-reported function. With either definition, mortality is higher among hemodialysis patients [44]. We use the Clinical Frailty Scale (CFS) [45,46] and the Edmonton Frail Scale (EFS) [47,48]. Both scales can be used for case finding of frailty and to estimate frailty severity. (See "Frailty".)
All individuals with CKD who have mild to moderate frailty will benefit from general measures such as optimizing physical activity and nutrition, or ensuring that appropriate ACP discussions have occurred. The EFS is particularly useful as it brings further attention to the aspects of frailty that make an individual vulnerable, such as problems in cognition, medication use, continence, balance, and social support, all of which are common challenges for patients with advanced CKD.
Advance care planning — ACP is the process undertaken by individuals to understand and share their personal values, life goals, and preferences regarding future medical care and prepare them for periods of incapacity [49,50]. Done well, facilitated ACP with dialysis patients has been shown to positively enhance patients' sense of hope [51]. Through the provision of timely, appropriate information, CKD patients' fears about the future can be addressed. ACP epitomizes patient-centered care by helping to ensure that medical care received is consistent with an individual's values, goals, and preferences [49,52,53]. ACP can also improve an individual's capacity for "in-the-moment" decision-making and communication, and their quality-of-life and end-of-life care. Patients who have engaged in ACP are less likely to undergo intensive care at the end of life. Similarly, ACP assists family members and surrogates with decision-making, and lessens their anxiety, distress, and bereavement [53-56]. (See "Advance care planning and advance directives".)
Ideally, ACP should be integrated into routine kidney care for all patients with advanced CKD and readdressed throughout the patient's illness. This helps to normalize the process and affords patients the time to think, reflect, and make well-informed choices for future care. It also helps ensure that care plans remain aligned with their preferences and prognosis as their health state declines.
However, at a minimum, ACP is needed most in the following high-risk patients:
●Patients who answer "No" to the following "surprise question": "Would you be surprised if the patient died in the next 12 months?" [57].
●Patients with general indicators of decline, including those with functional or cognitive decline, repeated unplanned admissions, and those who are frail.
●Patients with specific clinical indicators, including those with poor tolerance of dialysis with a change in modality, those who choose or are considering conservative kidney management, those who chose or are considering withdrawal from dialysis, those with poor or declining quality of life, and those with high physical or psychosocial symptom burden.
●Patients with decision-making difficulty regarding goals of care.
An approach to ACP was developed based on the perspectives of patients with advanced CKD [58,59]. It is not necessary that all elements of ACP be addressed in a single conversation, but rather over time both the patient and clinician gain a full understanding of the patient's beliefs, values, and overall goals for care. More than one conversation is necessary to define and modify a given treatment plan and also address discrepancies in understanding and expectations. We suggest letting the patient's experience guide the timing of future follow-up conversations. This can involve periodic check-in conversations using open-ended questions such as "What thoughts do you have about your kidney management?" This question allows the patient to express potential concerns, satisfaction, or questions about the current treatment plan. Patients may initiate follow-up conversations as well. These conversations are particularly helpful in the clinical setting suggested below.
However, ACP is not well integrated into CKD care [60]. Fewer than 10 percent of patients report discussing end-of-life issues with their nephrologist [15]. In addition, less than approximately one-third of dialysis patients have advance directives and these tend to outline limited treatment options [61]. Despite an extremely poor chance of survival following cardiopulmonary resuscitation (CPR), relatively few dialysis patients choose a no-CPR order [62]. The few patients who do have an advance directive do not usually address withdrawal of dialysis [61]. End-of-life issues are, therefore, commonly avoided until late in the illness when suffering is common and patients may no longer be competent to make their own decisions.
Increased uptake may occur if ACP is centered within the patient-family relationship, rather than solely within the patient-clinician relationship, and if dialysis unit staff become more comfortable discussing these issues [58,63]. Ideally, these conversations should result in the completion of an advance directive or equivalent legal document.
Advance care planning, including do not resuscitate (DNR) orders and physician orders for life-sustaining treatment (POLST) are discussed in detail separately. (See "Advance care planning and advance directives".)
Prognosis — It is necessary for the nephrologist to be able to provide guidance regarding prognosis to allow patient-centered decision making to occur. Tools are available to guide the nephrologist in assessing prognosis, including the Charlson comorbidity score [64], the patient's functional status, and the surprise question ("Would I be surprised if this patient died within the next year?") [65-67]. Although, for individual patients, available prognostic tools are not sensitive or specific enough to tell a patient how long they will live, they are helpful for identifying high-risk populations that can subsequently be targeted for specific supportive care interventions.
Prognosis should be discussed explicitly with patients who are deciding between conservative kidney management and dialysis and with patients who are contemplating withdrawal of dialysis. (See "Kidney palliative care: Conservative kidney management" and "Kidney palliative care: Withdrawal of dialysis".)
Mean survival from the last dialysis treatment to death in a patient who stops dialysis is 7 to 10 days, with a range of 2 to 100 days. Longer survival should be expected in patients with significant residual kidney function.
Clinicians need to be able to identify patients for whom dialysis offers neither a survival nor a quality-of-life advantage. These tend to be older patients with multi-morbidity and/or significant pre-existing functional or cognitive impairment. Such patients should be offered conservative kidney management as an alternative to dialysis. (See "Kidney palliative care: Conservative kidney management", section on 'Ideal candidates for CKM'.)
Palliative and hospice care consultation — Dialysis patients report relying on dialysis unit staff to address their palliative needs (eg, ACP, pain and symptom management, psychological and spiritual support) [15]. However, in situations where suffering cannot be adequately addressed by the kidney care team, palliative care consultation should be sought. Specialist palliative care services may also be required to address special considerations at the end of life, involving both symptom management and location of death. Palliative care consultation, and where available, referral to hospice, is particularly relevant for patients who have withdrawn from dialysis or who have chosen conservative kidney management and are nearing the end of life (eGFR is typically ≤5 mL/min/1.73 m2).
There is no uniform policy about continuing dialysis for hospice patients. The specific hospice program's policy about continuing dialysis while a patient is receiving hospice care will need to be addressed on an individual basis. Similarly, Medicare reimbursement for hospice and dialysis requires clarification on a case-by-case basis for patients on dialysis who are referred for hospice care. Patients who withdraw from dialysis should be eligible for hospice in nearly all cases (table 1). If the patient's terminal condition is not related to ESKD, the patient may be eligible to receive hospice services both under the ESKD benefit and the hospice benefit.
Providers should work with their local hospice agencies and palliative care services to educate patients and families, nephrologists, and clinic and dialysis personnel on the benefits of hospice for the advanced CKD population.
Terminal symptom management
Overview — Uremic deaths have historically been described as painless and characterized by increasing somnolence. However, patients with advanced CKD have a high symptom burden. These symptoms require careful attention throughout the patient's illness trajectory with additional considerations at the end of life.
In one study of 472 patients, each of whom was expected to die from advanced CKD, pain was the most prevalent symptom (69 percent), followed by respiratory secretions (46 percent), anxiety (41 percent), confusion (30 percent), shortness of breath (22 percent), and nausea (17 percent) [68]. Similarly, in other studies, pain was the most common symptom towards the end of life (in 42 to >90 percent of patients) [69,70]. Other less commonly reported symptoms were weakness, agitation, depression, myoclonus or muscle twitching, dyspnea, fever, diarrhea, dysphagia, and nausea.
For patients being cared for conservatively (without dialysis), symptom burden appears to be relatively stable until the last two months before death [71]. In a prospective cohort study of conservatively managed patients, the last two months of life were characterized by an increase in fatigue, pruritus, drowsiness, dyspnea, agitation, and pain [72]. Additionally, patients and caregivers experienced high levels of psychological concerns, including personal and family anxiety, depressed mood, increased information needs, and practical concerns.
As the patient's condition deteriorates during the terminal phase, certain nonpharmacologic interventions become less realistic (eg, exercise). Symptoms should be anticipated, with arrangement of appropriate prescriptions in place to address symptoms as they occur. Some patients may develop difficulty swallowing and will require an alternate route to oral administration. Terminal symptom guidelines are available and may need modest adjustment for CKD dosing [73]. (See "Palliative care: The last hours and days of life" and "Overview of managing common non-pain symptoms in palliative care".)
In addition to specific symptom management, general supportive care should be emphasized for the dying patient, with interventions to ensure patient comfort such as lip balm, mouth swabs, positioning, back rubs, fans, and the elimination of blood draws and dietary restrictions.
Pain — Pain remains undertreated in many dialysis patients [74,75]. Pain is also frequently reported by dying patients with advanced CKD [10,69,70].
Careful selection of analgesics is essential, as many analgesics and/or their breakdown products accumulate in patients with advanced CKD, resulting in significant adverse effects [76]. Opioids that are generally considered safer in CKD and ESKD include fentanyl, buprenorphine, methadone, and hydromorphone. Low doses should be used initially and titrated slowly while monitoring for adequate analgesia and adverse effects. (See "Management of chronic pain in advanced chronic kidney disease".).
Our approach to pain management for patients with advanced CKD in the last weeks or days of life includes escalating (if needed) treatment with fentanyl and hydromorphone (algorithm 1) [73,77,78].
Constipation — Constipation almost invariably occurs with the use of opioids. Stool softeners, dietary measures, and laxatives should be used when needed. When opioids are prescribed, senna should be started and the dose increased sequentially as needed. For constipation, lactulose (10 g/15 mL syrup) 15 to 30 mL orally once or twice daily or bisacodyl 30 mg orally or 10 mg rectal suppository once daily are usually effective. Saline enemas or glycerine rectal suppositories may also be used. (See "Cancer pain management with opioids: Optimizing analgesia", section on 'Rectal'.)
Shortness of breath — In the last days of life, patients naturally eat and drink less. However, symptoms of volume overload may be present [69]. Continuing to use dialysis for ultrafiltration alone in patients who have chosen to withdraw from dialysis is not appropriate. Nonpharmacologic interventions that may be used include positioning the patient in an upright position, having a fan blow air gently across the patient's face, supplemental oxygen, reassurance, and discontinuing intravenous fluids. Opioids are effective in treating terminal breathlessness; we use a similar pharmacologic approach as outlined for pain (algorithm 1) [73,77,78].
Anxiety, agitation, and delirium — Potential causes of agitation or delirium, in addition to the metabolic abnormalities of ESKD, include medication toxicities. In the case of opioid neurotoxicity, it may be appropriate to consider opioid rotation or dose reduction [73,77,78]. Many other medications may also require dose reduction in patients with advanced CKD. (See "Cancer pain management with opioids: Optimizing analgesia" and "Palliative care: The last hours and days of life", section on 'Delirium' and "Palliative care: The last hours and days of life", section on 'Anxiety and agitation'.)
Benzodiazepines and haloperidol are useful in treating anxiety. In patients with advanced CKD who are medicated with haloperidol, it is important to reduce the initial dose by 50 percent and to monitor for extra-pyramidal symptoms.
Trazodone and benzodiazepines may also be beneficial for agitation; these drugs generally do not require dose adjustment in CKD.
Myoclonus, muscle twitching, and seizures — Myoclonus and muscle twitching may occur with the use of opioids. Drug-induced or uremic-associated muscle twitching or myoclonus may be treated with benzodiazepines, such as clonazepam (eg, 0.5 mg daily and adjusted as needed).
Fewer than 10 percent of patients who withdraw from dialysis develop seizures [14]. Thus, prophylactic use of anticonvulsants is not recommended.
Nausea and vomiting — For patients who would benefit from a pro-kinetic agent (eg, those with delayed gastric emptying), we use metoclopramide 2.5 mg every four hours as needed to a maximum dose of 30 mg per 24 hours [73,77,78]. Otherwise, we use haloperidol at a 50 percent dose reduction. Both of these agents are dopamine antagonists, so patients must be monitored for extra-pyramidal symptoms [77].
If symptoms of nausea persist, the metoclopramide (or haloperidol) is discontinued and methotrimeprazine is initiated (at 6.25 mg subcutaneously, or 5 mg orally, every eight hours, with doubling of the dose as needed).
Ondansetron is an alternative choice. A small, double-blind, crossover study of 10 uremic patients reported that ondansetron was more effective than metoclopramide for managing nausea [79]. (See "Assessment and management of nausea and vomiting in palliative care".)
Respiratory tract secretions — Secretions can accumulate as the patient becomes too weak to cough up or clear their throat. This can produce a noise often termed the "death rattle." If the patient is unresponsive, he or she is unaware of the rattling. However, the noise can be upsetting to loved ones. Reassurance that the patient is not suffering may be all that is required. However, if treatment is desired, glycopyrrolate may be given [73]. (See "Palliative care: The last hours and days of life".)
In patients with residual kidney function, furosemide may also be considered. (See "Causes and treatment of refractory edema in adults", section on 'Management of refractory edema'.)
Pruritus — The first-line treatment for uremic pruritus is emollients and other topical analgesics [80-82].
For patients on dialysis, the dialysis regimen should be optimized. If pruritus continues, low-dose oral gabapentin (eg, 100 mg after each hemodialysis session, maximum dose 300 mg daily) represents a reasonable choice of therapy [83-86]. For patients not on dialysis, gabapentin is also reasonable, with appropriate dosing (100 to 300 mg daily for G5 CKD, and up to 600 mg daily for G4 CKD).
Antihistamines are not indicated, as uremic pruritus is transmitted by a non-histaminergic itch pathway [80].
Palliative dialysis — Palliative dialysis is an approach to dialysis that prioritizes quality of life over survival and requires full integration of kidney supportive care [3]. Specifically, palliative dialysis uses a patient-specific dialysis prescription focused upon relieving symptoms that may be treated with dialysis (eg, dyspnea) rather than the attainment of biochemical parameters that traditionally represent "adequate dialysis." The decision to provide palliative dialysis will require planning and discussion among the patient, family, and dialysis providers.
Palliative dialysis is often, incorrectly, perceived as being equivalent to less dialysis or a precursor to withdrawal of dialysis. While adaptation of dialysis timings or eventual withdrawal from dialysis may be a component, this alone will rarely ameliorate symptoms or suffering for patients. Dialysis patients may transition to a palliative approach to their dialysis care near the end of their life as their goals of care shift to focus almost exclusively on quality of life rather than survival. At this time care, should emphasize symptom control, ACP, and emotional, social, and family support. Patients also may start dialysis with this palliative approach to their care. Dialysis guidelines and standards of care around managing metabolic complications and issues such as blood pressure control will need to permit flexibility so that care can be tailored appropriately for each patient and will look more like the guidelines established for conservative kidney management [78]. (See "Kidney palliative care: Conservative kidney management".)
Post-death assessment and bereavement care — Some nephrology programs assess the quality of a patient's death as part of routine quality assurance activities [69]. This promotes the examination of the character and/or quality of a patient's death and focuses the staff's attention on efforts to ensure establishment of ACP, symptom control, and effective communication among interdisciplinary teams, patients, and families.
Bereavement support to families and involved caregivers (eg, dialysis unit staff, transporters, etc) may be addressed by dialysis unit-sponsored memorial services, follow-up calls, and cards of condolence.
SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care" and "Society guideline links: Chronic kidney disease in adults".)
SUMMARY AND RECOMMENDATIONS
●Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients and families in the setting of serious illness. The goal of palliative care is to achieve the best possible quality of life by relieving suffering, controlling symptoms, and restoring functional capacity, while maintaining sensitivity to personal, cultural, and spiritual beliefs and practices. Kidney palliative care, therefore, is not restricted to withdrawal of dialysis or conservative kidney management. Patients with advanced chronic kidney disease (CKD) frequently have palliative care needs for years before death due to high symptom burden, functional decline, and poor quality of life. (See 'Definition and principles of kidney palliative care' above.)
●Patients who undergo palliative care consultations and hospice care are more likely to experience lower symptom burden at the end of life and to receive care consistent with their preferences and are less likely to die in acute care settings or intensive care units with aggressive and invasive interventions. Despite these potential benefits, palliative and hospice care are underutilized in patients with advanced CKD. Substantial barriers to palliative care include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, misaligned policy incentives, and deficient training of clinicians in palliative care.
●Core components of kidney palliative care include:
•Shared decision making – Care teams must understand and incorporate the patient's needs and perspective and adapt the care plan to facilitate integration of the patient's lifestyle, including their family, social community, and cultural beliefs, to relieve suffering. (See 'Shared decision making' above.)
•Quality-of-life assessment – We assess patient-reported symptom and quality-of-life outcomes at every routine patient visit (typically every two months in patients receiving dialysis and every three months in patients with advanced CKD who are not receiving dialysis). We use the EQ-5D-5L as a generic preference-based measure of quality of life and the Edmonton Symptom Assessment System-Revised: Renal (ESAS-r:Renal) to assess the prevalence and severity of 13 symptoms commonly experienced in CKD. If needed, we also assess frailty using the Clinical Frailty Scale (CFS) and the Edmonton Frail Scale (EFS). (See 'Quality-of-life assessment' above.)
•Advance care planning – Advance care planning should be integrated into routine kidney care for all patients with advanced CKD and readdressed throughout the patient's illness. (See 'Advance care planning' above.)
•Palliative and hospice care consultation – In situations where suffering cannot be adequately addressed by the kidney care team, palliative care consultation should be sought. Palliative care consultation, and where available, referral to hospice, is particularly relevant for patients who have withdrawn from dialysis or who have chosen conservative kidney management and are nearing the end of life. (See 'Palliative and hospice care consultation' above.)
●Patients with advanced CKD have a high symptom burden. These symptoms require careful attention throughout the patient's illness trajectory with additional considerations at the end of life (see 'Terminal symptom management' above):
•Pain is also frequently reported by dying patients with advanced CKD. Opioids that are generally considered safer in CKD and end-stage kidney disease (ESKD) include fentanyl, buprenorphine, methadone, and hydromorphone. Low doses should be used initially and titrated slowly while monitoring for adequate analgesia and adverse effects (algorithm 1). (See 'Pain' above.)
•Other common symptoms that require treatment include constipation, dyspnea, anxiety, agitation, delirium, myoclonus, seizures, nausea and vomiting, accumulation of respiratory tract secretions, and pruritus. (See 'Constipation' above and 'Shortness of breath' above and 'Anxiety, agitation, and delirium' above and 'Nausea and vomiting' above and 'Pruritus' above.)
ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Jean L Holley, MD, FACP, who contributed to an earlier version of this topic review.
