Modern medicine has expanded well beyond the management of acute illness. As a consequence of the years of research and medical progress, the physician’s role is largely to manage the health of patients with multiple chronic diseases that progress over time. Almost invariably, patients with chronic diseases have also acquired responsibility. They are expected to modify their lifestyle and, for patients receiving dialysis, to commit to a therapy that is highly invasive and often associated with physical, psychosocial, and spiritual symptoms (1). In some cases, current kidney care is inconsistent with patients’ preferences and values (2). Consequently, dialysis is often associated with poor outcomes including low quality of life (QOL). To improve patient-reported outcomes, incorporation of the patient’s needs and perspective into the medical care that is provided is essential (3). In essence, this shift is a re-emergence of the need to practice both the art and the science of medicine.
The purpose of this article is to provide a framework that may help clinicians integrate symptom assessment and other measures such as QOL and frailty scores into a clinical approach to contemporary kidney care. This will involve (1) defining our understanding of kidney supportive care, patient-centered dialysis, and palliative dialysis; (2) understanding and recognizing common symptoms associated with advanced CKD; (3) discussing the concepts of physical function, frailty, and QOL, and their roles in CKD; and (4) identifying the process barriers that may arise when patient-centered dialysis care is being introduced into clinical practice.
Defining Our Understanding of Kidney Supportive Care, Patient-Centered Dialysis, and Palliative Dialysis
The role of palliative care has expanded such that it is no longer limited to terminal care focused primarily on those dying with cancer. Palliative care now extends to services aimed at improving the QOL of all patients with life-limiting illnesses, throughout their illness, through the prevention and relief of suffering. It can be provided together with therapies intended to prolong life, such as dialysis. However, it is still a commonly held view by both health care providers and patients that palliative care and terminal care are synonymous (4–6). In keeping with recent Kidney Disease Improving Global Outcomes recommendations to address this misunderstanding, the term “kidney supportive care” is replacing the term “kidney palliative care” (7). The concepts, however, remain consistent with the World Health Organization definition of palliative care (8).
Kidney supportive care, therefore, involves services aimed at improving the QOL for patients with CKD. This includes aligning treatment with a patient’s goals through culturally sensitive shared decision-making and advance care planning (discussed further in this Moving Points feature) (9) and basic symptom management. Other core elements of kidney supportive care include prognostication (10); psychologic, spiritual, social, and family support (7); and conservative (nondialysis) kidney management (11). Recent patient engagement has highlighted kidney supportive care as a top priority for those with CKD (12).
Patient-centered care can be defined as care that is adapted to facilitate integration of the patient’s lifestyle and community into the treatment plan. To be able to integrate both the patient’s and the clinician’s perspective, a model of culturally sensitive shared decision-making is encouraged (9,13). This model is based on conversations between a patient (including their family and social community) and their clinician, that allow the prioritization of those components of medical care important to the patient over others deemed less important (14–16). For many patients receiving dialysis, this requires the integration of quality kidney supportive care to manage symptoms and optimize QOL. The need for kidney supportive care and shared decision-making is increasingly being recognized and much work is being done to help integrate both patient and clinical priorities into the field of kidney medicine (7,12,17).
In practice, patient-centered care requires thoughtful, tailored kidney care that will often require balancing issues of survival and long-term health outcomes with maximizing QOL, symptom control, and physical function (Figure 1). This can become impractical if clinicians are constrained by treatment targets or a need to adhere to current disease-orientated guidelines. In contrast to traditional care, physicians practicing patient-centered care may need to balance the management of symptoms (e.g., dizziness and fatigue) with optimal control of BP, anemia, and phosphate levels, with less emphasis being placed on maximizing long-term health outcomes, such as survival. As disease progresses, patients’ goals of care tend to shift to focus almost exclusively on QOL rather than survival, with a strong emphasis on emotional, social, and family support (2). As the patient and family accept death as a natural consequence, the focus becomes more consistent with palliative dialysis where symptom control and advance care planning become of paramount importance, trumping issues related to disease-orientated clinical performance measures and longer-term health outcomes and survival.
Palliative dialysis is an approach to dialysis that prioritizes QOL over survival and current quality assurance targets through the prevention and relief of symptoms and suffering (Figure 1). Palliative dialysis is a form of patient-centered dialysis in that it continues to align care with patient preferences. Interventions are largely to control immediate symptoms and distress, while still, where possible, promoting wellbeing and social functioning. Particular attention is paid to providing emotional and family support and to helping patients and their families come to terms with the progressive nature of their disease. Palliative dialysis is often, incorrectly, perceived as being equivalent to less dialysis or a precursor to withdrawal of dialysis. Although adaptation of dialysis timings or eventual withdrawal from dialysis may be a component, this alone will rarely ameliorate symptoms or suffering for patients.
A number of interventions can improve the patient’s perception of wellbeing near the end of life. These have been previously outlined and may include a reduction in pill burden, or relaxation of dietary restrictions (18). Less dialysis rarely provides benefits, and may result in increased symptoms and postdialysis fatigue, especially if greater ultrafiltration is required to manage troublesome shortness of breath. Dosing and timing of dialysis are variables that affect the patient with physical or social limitations. Examples include being located in an isolated or particularly noisy section of the dialysis unit; the stress associated with rushing to get ready for an early morning dialysis session; or the change in routine associated with eating their midday meal earlier and their evening meal later when attending afternoon dialysis. Engaging patients and families in discussions often leads to identification of the issues and symptoms that lead to a request to reduce dialysis. Although often perceived by staff as minor issues, even small changes to the dialysis schedule, timing, or location may be helpful and improve wellbeing and dialysis tolerance. A number of symptoms including sleep disorders, respiratory distress, and postdialysis fatigue may be mitigated by more frequent, but shorter, dialysis sessions and this option may be more acceptable to some patients. In the three real-life scenarios described in Table 1, in-depth discussions with and psychosocial assessments of the patients helped determine the nature of their discomfort, the aim of treatment, how treatment benefits were to be measured, and conversely, what constituted undue burden and suffering. In each case, conventional clinical standards of care and dialysis regimens had to be changed to allow prioritization of the patient’s needs.
Table 1. -
Three cases of supportive care interventions improving patient reported outcomes
||Interventions and Outcomes
Case 1: Failure to thrive on dialysis
| Medical assessment: patient in nursing care unit; chronically volume overloaded, hypotensive, with respiratory crackles. Marked hyperphosphatemia. Persistent intradialytic weight gains of >7% body wt. Active truncal and extremity calciphylaxis wounds and severe pain. Survival estimate of 4–6 mo.
||Shared decision-making: education and review of dialysis options including the option for dialysis withdrawal.
|Patient opted for increased frequency of dialysis sessions (×5/wk) and relaxation of dietary restrictions.
| Patient goals of care and psychosocial assessment: Pain adequately controlled on opioids. Frustration and poor wellbeing due to not being able to eat freely at social events like book club.
||Traveled ×5/wk by private ambulance for dialysis sessions for 19 wk duration. Markedly improved QOL during this time. Attended book club. Took on leadership role in social club.
|Repeated discussions and shared decision making on a frequent basis. At wk 20 the patient determined QOL was now deteriorating due to high frequency of transfers. Reduced dialysis back to ×3/wk. Resumed fluid restrictions. Remained stable for 5 wk then opted to discontinue dialysis. Died within 5 d.
Case 2: Patient request to withdraw from dialysis
| Medical assessment: stable dialysis, target laboratory tests met. Dialysis via fistula with good flow rates. Optimally managed on cardioprotective medications.Patient goals of care and psychosocial assessment: requested planned dialysis withdrawal.
||Patient expressed desire to withdraw from dialysis. He reported his QOL was dependent on which nurses needled his fistula, with the majority being poor or unpleasant experiences. On the basis of this he had reflected and opted to withdraw from therapy.
|Shared decision making led to the suggestion he have a tunneled line insertion and dialyze via a catheter.
|Repeated discussion: greatly improved QOL. Patient continues on dialysis.
Case 3: Dementia and frailty
| Medical assessment: 86-yr-old lady with dementia requiring full personal care. Unable to ambulate or transfer, awake, speech unclear, not orientated in time, place, or person. Initiated onto home peritoneal dialysis several years previously. Now with Pseudomonas exit site infection. Not distressed, abdomen soft. Deemed high risk for catheter removal and reinsertion. Prognosis guarded.Patient goals of care and psychosocial assessment: legal substitute decision-making lay with the eldest of three sisters, however all sisters were actively involved in providing day-to-day care. The patient was always the “head” of the family and highly respected. In earlier discussions the patient had previously expressed wishes to continue dialysis as long as she appeared able to enjoy family events. She eats well, laughs constantly (often inappropriately), and there is no overt distress.
||Shared decision-making: family apprised of poor prognosis, and increased risks with exit site infection. Family decided patient would continue with dialysis at present with no peritoneal dialysis catheter removal despite infection risk, but would treat with intraperitoneal antibiotics if needed. Advance care plan to limit transfer to hospital for care for intravenous therapies, but not to include other intensive or invasive procedures if patient deteriorates. Peritoneal dialysis adapted to prioritize fluid balance over other parameters.
|Ongoing, shared decision-making.
|Patient increasingly bedbound. Continues to eat well, and laugh as before. Exit site stable. Community nursing and social work services and telehealth introduced to support family with care, further decision-making, and preparation for death.
Understanding and Recognizing Common Symptoms Associated with Advanced CKD
A diverse number of individual symptoms can be associated with CKD. Many occur in complex clusters with an exponentially negative effect on overall QOL (19,20). Others present collectively in the form of syndromal patterns such as depression, frailty, and/or functional decline and falls (described in the next section). Moreover, several of these symptom clusters can be difficult to treat in isolation, and treatment planning requires careful and often repeated evaluation for optimal success.
Nephrology care teams under-recognize the prevalence, severity, and negative effects of symptoms in their patients (21). Patients under-report symptoms, partly because their symptoms are often from comorbid conditions and not the kidney disease itself, and partly because health care professionals tend to focus on biochemic markers and kidney management. Without routine symptom screening, this situation is unlikely to change. However, screening will not improve patient outcomes unless care providers respond appropriately to these assessments.
The aim of treatment is to ameliorate symptoms, as it is not always necessary or possible to completely resolve them. It is important to acknowledge this and negotiate with the patient an acceptable level of symptom control. This is well accepted in chronic pain management and is equally relevant to other symptoms (22). A clinically meaningful improvement for both pain and physical function has been defined as a 30% improvement in scores (22). Given the synergistic and interrelated nature of symptoms experienced in advanced CKD, an approach to care that addresses overall symptom burden is likely to improve QOL even if each individual symptom has not completely resolved. For example, a moderate reduction in pain may be sufficient to improve sleep, improve mood, and increase the ability to cope with health challenges, resulting in a substantial improvement in function and QOL. Consideration should also be given to nonpharmacologic and pharmacologic management strategies that are potentially effective for managing multiple symptoms concurrently. For example, exercise (23), cognitive behavioral therapy (CBT) (24,25), and more frequent dialysis (26,27) have been shown to be beneficial for sleep disorders, restless legs syndrome (RLS) (28,29), and depression (23) (Table 2). CBT and exercise may also help treat chronic pain and fatigue. Low dose gabapentin may provide relief from neuropathic pain, RLS, uremic pruritus, and sleep disturbances, whereas antidepressants may improve sleep, appetite, fatigue, and pain.
Table 2. -
Considerations for symptom management in patients with advanced CKD
||Initial Considerations for Management
||Assess for modifiable contributing factors: vitamin D deficiency, metabolic acidosis, tertiary hyperparathyroidism, hypothyroid, anemia, mood disorders (depression, anxiety), sleep disorder, malnutrition, polypharmacy.
|Postdialysis fatigue: consider modifications to the dialysis prescription such as increased frequency.
|Consider low-intensity resistance and aerobic exercise where appropriate.
|Ensure the appropriate supports are in place to assist with activities of daily living and that nursing care is available where appropriate.
||Assess for modifiable contributing factors and symptoms such as RLS, pruritus, pain, dyspnea, mood disorders (depression and anxiety), obstructive sleep apnea, medications.
|Consider nonpharmacologic management first: exercise if appropriate; cognitive and psychologic approaches (e.g., relaxation therapy, CBT); promote good sleep hygiene (avoid napping during the day, avoid stimulants such as caffeine, alcohol and nicotine in the evening).
|Consider pharmacologic therapy if nonpharmacologic interventions are unsuccessful and poor sleep is adversely affecting QOL: e.g., low dose gabapentin starting at 50–100 mg postdialysis (potentially also beneficial for RLS, neuropathic pain, and pruritus); melatonin; zaleplon 5–10 mg nightly; or doxepin 10 mg nightly.
||Assess for modifiable contributing factors such as anemia and iron deficiency; medications such as dopamine antagonists, antidepressants (SSRIs, SNRIs, TCAs); calcium channel blockers, opioids.
|Consider nonpharmacologic management first: e.g., intradialytic aerobic exercise.
|Consider pharmacologic therapy if nonpharmacologic interventions are unsuccessful and RLS is adversely affecting QOL: e.g., low dose gabapentin starting at 50–100 mg postdialysis (potentially also beneficial for sleep, neuropathic pain, and pruritus); second-line options include nonergot derived dopamine agonists such as ropinirole at a starting dose of 0.25 mg/d and a maximum recommended dose of 3 mg/d.
||Assess for modifiable contributing factors: anemia, iron deficiency, hypercalcemia, hyperphosphatemia, xerosis, allergies, drug sensitivities, contact dermatitis.
|Promote good skin care: avoid soap, but if used, use gentle soap; keep skin cool by wearing light and cool clothing; avoid excessive bathing or bathing in hot water and use emulsifying lotions in the bath; avoid scratching – keep fingernails short and encourage massage rather than scratching, wear gloves at night; maintain a humid home environment, especially in the winter.
|Topical emollients (moisturizers) are first-line treatment. They should have high water content and be free from fragrance and additives.
|Agents that help cool skin such as a fan, especially at night, or the use of topical camphor/menthol in the moisturizing base.
|Consider other topical therapies: gamma-linolenic acid 2.2% cream applied twice daily; capsaicin 0.025% or 0.03% ointment applied 2–4 times daily (may cause initial burning).
|Consider pharmacologic therapy if the above is unsuccessful and pruritus is adversely affecting QOL: e.g., low dose gabapentin starting at 50–100 mg postdialysis (potentially also beneficial for sleep, RLS, and neuropathic pain); second-line treatment – consider the TCA doxepin 10 mg nightly.
|Other therapies to consider with less evidence include UVB phototherapy ×3/wk and acupuncture.
|Nausea and vomiting
||Manage associated reversible symptoms such as constipation.
|Consider nonpharmacologic management: good oral hygiene; smaller, more frequent meals; minimize aromas; avoid foods that are greasy, spicy, or excessively sweet; relax in an upright position after eating to facilitate digestion; apply a cool, damp cloth to forehead or nape of neck; loose fitting clothing; complementary therapies such as relaxation, imagery, acupressure, or acupuncture.
|Consider pharmacologic therapy if the above is unsuccessful and nausea and vomiting are adversely affecting QOL: metoclopramide 2.5 mg PO/SC q4h PRN; ondansetron 4 mg PO ×3/d; haloperidol 0.5 mg PO/SC q4h PRN; olanzapine 2.5 mg PO q4h PRN.
||Manage associated reversible symptoms such as pain, poor sleep, pruritus.
|Assess and optimize social supports.
|Consider nonpharmacologic treatments: more frequent dialysis; CBT; exercise programs.
|Consider pharmacologic therapy with antidepressants if the above is unsuccessful and depressive symptoms are adversely affecting QOL.
||Assess for modifiable contributing symptoms such as sleep and mood disorders (depression and anxiety).
|Consider nonpharmacologic management: exercise if appropriate; cognitive and psychologic approaches (e.g., relaxation therapy, CBT).
|If considering analgesics, establish whether pain is neuropathic or nociceptive in nature to direct analgesic approach.
|Adopt a step-wise approach to analgesics such as that outlined in the World Health Organization Analgesic Ladder.
|Analgesic selection, initial dosing, and titration must be individualized according to the patient’s health, previous exposure to analgesics, attainment of therapeutic goals, and predicted harms.
|Consider a trial of chronic opioid therapy if pain is moderate to severe, is having an adverse effect on function or QOL, and therapeutic benefits are likely to outweigh potential harm.
|Before initiating chronic opioid therapy, assess risks of substance abuse, misuse, or addiction.
RLS, restless legs syndrome; CBT, cognitive behavioral therapy; QOL, quality of life; SSRI, selective serotonin reuptake inhibitor; SNRI, serotonin and norepinephrine reuptake inhibitor; TCA, tricyclic antidepressant; UVB = ultraviolet B; PO = by mouth; SC = subcutaneous; q4h = every 4 hours; PRN = when necessary.
Fatigue is one of the most widely reported and distressing symptoms for patients receiving dialysis. Its prevalence ranges from 45% to 97% in patients receiving hemodialysis (HD), and from 30% to 70% in patients receiving peritoneal dialysis (30). Although fatigue is challenging to manage, the massive effect it has on patients’ lives warrants clinicians to identify and attempt to manage the symptom (31). Fatigue can be described as a complex of physical sleepiness, lack of energy, and weakness. It involves psychologic, cognitive, and emotional domains and is closely correlated with depressive symptoms (30). Medical issues associated with CKD that may contribute to fatigue include anemia, inadequate dialysis, postdialysis fatigue, and the increased effort associated with making frequent trips to the dialysis unit for treatment. Other symptoms such as poor sleep and anorexia may also contribute and, in our experience, treatment is most likely to succeed if both medical and allied health interventions are used together. Involvement of an occupational therapist for education around energy conservation strategies is advisable. A few assessment tools specific to fatigue may be helpful in distinguishing physical fatigue from that associated with depressive symptoms (30,31), and can help direct the clinician as to whether psychotherapy and/or medication may be appropriate (32,33). Recent evidence from the cancer literature suggests that in specific cases methylphenidate may help reduce fatigue (34). There is, to date, no evidence whether the benefit extends to those maintained on dialysis, and there is particular concern that it may worsen the overall wellbeing as methylphenidate may adversely reduce appetite, increase malnutrition, and lead to further frailty. A recent Cochrane review evaluated the palliative management of fatigue, although most interventions have yet to be researched in patients with kidney failure (35). Although in-depth management strategies are beyond the scope of this article, initial considerations for patients with CKD are outlined in Table 2.
Sleep Disorders and RLS
Sleep disorders are extremely common in patients receiving dialysis, with a mean prevalence of 60.1% in 41 studies that evaluated 7391 patients (7). Studies consistently report that sleep disorders are associated with fatigue, depression, and poor QOL. RLS can contribute to poor sleep and impaired QOL and affects up to 25% of patients receiving dialysis when the international RLS diagnostic criteria are applied (36). Some considerations and management strategies are outlined in Table 2.
One of the most bothersome symptoms for patients receiving dialysis is pruritus. In a study of 19,226 patients receiving dialysis across 11 countries, the mean prevalence of pruritus was 40.6% (7). The nature and characteristics of pruritus vary widely, as do the causes and treatment strategies (Table 2), and the reader is referred to recent reviews on the topic for more detail (37). Dialysis associated pruritus has been repeatedly associated with decreased QOL and other symptoms such as poor sleep and depression (38).
Gastrointestinal symptoms such as anorexia, nausea, vomiting, constipation, and diarrhea are also very common in patients receiving dialysis although less is known about these symptoms. Uremia is a powerful trigger of the chemoreceptor zone causing nausea but also has an adverse effect on gastrointestinal motility (39). Comorbidities such as diabetes mellitus exacerbate these symptoms. In addition, many of the drugs commonly used to treat patients with CKD such as phosphate binders, vitamin D analogues, erythropoietin-stimulating agents, and supplemental iron, have prominent gastrointestinal side effects. Similarly, so do agents used to treat other symptoms such as opioids and selective serotonin reuptake inhibitor antidepressants. Anorexia in particular has been associated with malnutrition, poor QOL, depression, greater hospitalization rates, and an increase in mortality (40–42). The associated weight loss may contribute to fatigue and loss of muscle strength and initiate a cycle resulting in frailty. Although the negative effects of most gastrointestinal symptoms in CKD have not been assessed systematically, there is increasing recognition of their detrimental effects on QOL. Dietary assessments and interventions are essential, targeted at promoting appetite and energy and maintaining body weight rather than dietary restrictions.
Depressive symptoms (as assessed by interviews or questionnaires) and clinical depression (as assessed by standard psychiatric criteria) are common in patients receiving dialysis. A recent systematic review of observational studies assessed the worldwide prevalence of depression in patients receiving dialysis. On the basis of interview assessment, the prevalence of depression was 22.8% (95% confidence interval, 18.8 to 27.6) (43). On the basis of self or clinician rating scales, the prevalence of depressive symptoms was 39.3% (95% confidence interval, 36.8 to 42.0). This is compared with the lifetime risk of depression in the general population of approximately 7% (44). The presence of depressive symptoms affects QOL, hospitalization, and mortality rates, and has been associated with dialysis withdrawal (45–49). Depressive symptoms are also associated with many of the other symptoms experienced by patients with CKD, such as pain, poor sleep, pruritus, nausea, and vomiting. Nonpharmacologic treatments such as more frequent HD (26,27), CBT (24,25), and exercise (23) have been successful in treating depressive symptoms in patients on HD (Table 2). Although data remain limited and inconclusive, some patients receiving dialysis may benefit from antidepressants (50). A practical approach to the treatment of depression in patients with CKD has recently been outlined (51). Ongoing studies such as the A Trial of Sertraline vs. Cognitive Behavioral Therapy for End Stage Renal Disease Patients with Depression (ASCEND) trial, a randomized, controlled trial of sertraline versus CBT for prevalent HD patients with depression, will likely help guide our clinical approach to these complex patients (52). In the United States, the assessment and follow-up of depression has become a reporting measure mandated by the Centers for Medicare & Medicaid Services in the ESRD Quality Incentive Program (QIP) (53).
It is well documented that over 58% of patients with CKD experience pain (19). Chronic pain is associated strongly with lower QOL, psychosocial distress, sleep disorders, and depression. Despite the high prevalence, pain remains poorly treated. Large international observational studies have shown that analgesic use is low in these patients. Basic principles of chronic pain management in CKD are outlined in Table 2 and the reader is referred to a recent review on the topic for further details and therapeutic approaches (19). As with depression, the assessment and follow-up of pain has become a reporting measure mandated by the ESRD QIP (53).
Recognizing and Advocating for Patient-Centered Care in Those Presenting with Geriatric Syndromes
Geriatric syndromes is the term used to describe a group of common health conditions in older people that do not fit into discrete disease categories. This includes changes in cognitive function, falls, incontinence, and frailty. Almost invariably, the presence of one or more geriatric syndromes will negatively affect the patient’s life as well as that of their family and social circle. Recognition of these syndromes should trigger frequent discussions around goals of care and advance care planning.
In the clinical realm, frailty is a complex syndrome associated with increased vulnerability resulting from a combination of problems in different domains of daily functioning, including physical, sensory, psychologic, and social domains. It has multiple causes and contributors, and is characterized by diminished strength and endurance, and reduced physiologic function that increases an individual’s vulnerability for developing increased dependency and/or death (54,55). Operational definitions for determining frailty vary and a multitude of validated measurement scales have been used (56). This contributes to much of the variability in estimated prevalence. The sole use of the physical domain as a surrogate measure for the global assessment of frailty, such as the Fried et al. classification based on five physical components – unintentional weight loss, decreased strength, decreased exercise tolerance, reduced gait speed, and fatigue (57) – may be an inadequate metric for frailty in CKD. Social determinants of frailty, such as those associated with environmental and mental wellbeing, are also of importance and may be recognized through more holistic assessments. The Clinical Frailty Scale is an example of a simple and clinically useful validated tool for assessing global frailty status. It is estimated that around 40% of individuals on dialysis have frailty characteristics (58). Although more prevalent in older populations (<20% of those aged ≥65 years remain independent in all activities of daily living), there is an unexpectedly high burden in younger individuals on dialysis (59).
Frailty in patients with CKD is an elevated state of risk compared with other people of the same chronologic age. It identifies those at risk for increased morbidity such as falls, hospitalization, dependence, or need for long-term care, and increased mortality. Patients with CKD with frailty phenotypes have an estimated 2.6-fold higher risk of mortality and 1.4-fold higher number of hospitalizations, independent of age, comorbidity, and disability (60). Frailty is often associated with a decline in physical function, including physical activity, exercise capacity, social participation, and self-care abilities. The decline often occurs soon after starting dialysis and is most prominent in older individuals (61,62). Patients with early changes in functional independence may present initially with reduced participation in personal activities such as hobbies, but as time progresses these changes affect household activities such as grocery shopping, laundry, and meal preparation, and/or personal care activities such as dressing and toileting. The overlap with frailty and functional decline extends to accidental falls. Falls are almost twofold more common in the dialysis population, both in those maintained on HD and those on peritoneal dialysis (63,64).
Frailty is a dynamic process, but transition to a worse state is more common than to a better state, with limited evidence of effectiveness of interventions such as exercise. In the dialysis population, modifications of the dialysis treatments may be beneficial. The requirement to sit for 4 hours can be almost intolerable for some patients and may contribute to functional loss. Shorter, more frequent sessions may be more tolerable. Gentle intradialytic exercise, with or without the use of analgesics, can help manage symptoms such as restless legs and a sore back from inactivity, while helping to preserve function and improve mood. Frailty is often associated with social isolation, depression, and cognitive impairment, and is an easily determined clinical marker of those at high risk of poor outcomes. In the dialysis population, the presence of frailty should trigger open discussions reviewing the current goals of care, prognosis, and more frequent evaluation of symptoms. In addition, patients should be empowered to discuss if they wish to transition to palliative dialysis or withdraw from dialysis. The communication skills needed to negotiate these challenging conversations can be learned (65) and new tools and online resources such as Vital Talk (66) can help care providers facilitate discussions.
Identifying Process Barriers That May Arise When Patient-Centered Dialysis Care Is Introduced into Clinical Practice
Current models of care place much emphasis on survival, hospitalization, and the ability of hospitals and physicians to meet certain standards. For the dialysis patient this is often in the form of laboratory targets and attainment of clinical parameters that are associated with prolonged lifespan, such as predialysis care and fistula or graft creation and use. Although well meaning, this approach overlooks the patient experience of and preferences for care.
The provision of patient-centered care will require full integration of kidney supportive care, including the regular assessment of symptoms, QOL, and geriatric syndromes such as frailty, into contemporary dialysis care. These assessments will guide health care providers as summarized in Table 3. Many of the valid screening and assessment tools are simple and can be incorporated into busy clinical practices. However, responding appropriately to assessments will require models of care that encourage enhanced communication and multidisciplinary assessments. Dialysis guidelines and standards of care must start addressing directly these outcomes and using these patient-centered assessments to both guide and evaluate the quality of care (67).
Table 3. -
Keys roles for symptom, QOL, and geriatric syndrome assessments
|Early identification of patients with increased physical, psychologic, and social care needs
||Screening in isolation is inadequate – appropriate action must be taken.
|Screening tools must be simple enough to integrate into busy clinical practices but complex enough to provide clinical/treatment direction.
|Without assessments, family members and health care professionals are unable to predict accurately patients’ symptom burden, QOL, or treatment preferences.
||The goal is to enhance support, address concerns, promote QOL, and help preserve physical function.
||Symptom burden, QOL, cognitive and functional impairments, frailty, and other geriatric syndromes are likely more reliable predictors of outcome.
|Assessment of comorbidities.
|Regular assessments will improve our understanding of illness trajectories and enhance our ability to prognosticate the outcomes most relevant for patients, such as the effect of treatments on QOL, symptoms, and physical function (10).
|Shared decision-making and advance care planning
||These assessments provide an entry point for difficult discussions about prognosis and goals of care where patients (1) identify themselves as needing enhanced support through high symptom scores or poor QOL or physical function scores, and (2) communicate treatment goals (9).
|The aim is the prevention of unnecessary suffering through the use of treatments that have become excessively burdensome or not consistent with patients’ wishes.
|Facilitation of multidisciplinary assessments
||The treatment of many symptoms, especially pain and depression, as well as the reversal of functional decline and frailty, typically requires multidisciplinary, multipronged interventions to be effective. This may involve nephrologists, geriatricians, palliative care specialists, nurses, social workers, physiotherapists, or physical rehabilitation specialists, spiritual counsellors, and dieticians to name some.
|Metrics for quality patient-centered care
||These patient-centered outcomes and assessments serve as determinants of treatment outcome, both treatment benefit and what constitutes undue burden and suffering (74).
Aligning policies and payments will be essential. For example, more flexible dialysis shifts will facilitate the tailoring of dialysis runs to the specific needs of individual patients. Increased technical and caregiver support are needed to help overcome barriers, such as caregiver burden, and facilitate greater uptake of newer home dialysis regimens, such as short daily HD and nocturnal HD, which have resulted in improvements in sleep, depressive symptoms, cognitive function, recovery time postdialysis, patient satisfaction, and overall QOL (68–73). Home dialysis modalities not only permit the dose of dialysis to be tailored more suitably to the specific needs of the patient, but prevent potentially lengthy transportation to and from dialysis units, allowing patients more time at home with loved ones.
The metrics by which we assess the integration of kidney supportive care and the quality of patient-centered care will be challenging and have been discussed elsewhere (53,67,74,75). However, these metrics will almost certainly involve regular assessment and follow-up of symptoms, geriatric syndromes, and effect of care on QOL. This will require the implementation of clinical policy that encourages ongoing dialogue between the patient and the care team to ensure that treatments remain aligned with what matters most to individual patients and that health care providers understand what constitutes undue burden and suffering (76). These metrics will need to permit flexibility in clinical standards of care and dialysis regimens so they can be tailored appropriately for each patient. The validation of assessment tools and metrics for patients with advanced CKD and those on dialysis will be an important area of research.
Delivery of patient-centered dialysis will require a shift in resources. Rigorous and comprehensive prospective economic evaluations of kidney supportive care services are needed to (1) identify high resource use patterns, (2) facilitate resource planning, and (3) aid our understanding of factors associated with significant health care and patient/caregiver borne costs, and (4) are anticipated to show cost savings while improving patient outcomes. This is discussed in greater detail within this Moving Points feature (77).
Supportive care is central to the provision of patient-centered care for patients with chronic diseases. Therefore, many countries are placing increased emphasis on the provision of supportive and end-of-life care by “generalist” and community providers as a component of usual care (78). Kidney supportive care, therefore, must become a core clinical competency of CKD management. This will require medical schools, nursing schools, and nephrology fellowship programs to integrate discussions around goals of care and the management of symptoms and geriatric syndromes into curricula. Professional societies will need to support continuing development for all health care providers. Improved partnerships with specialist supportive (palliative) care colleagues will be required for more complex patients, particularly as they transition to end-of-life care.
S.N.D. has research funded by the Canadian Institutes of Health Research (funding reference nos. 89801, 126151, and 126193), and Alberta Innovates Health Solutions (funding reference no. 201400400).
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