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Many patients with chronic kidney disease (CKD) and end-stage renal disease have unmet palliative care (PC) needs. Physical and emotional symptoms are common. Some, like uremia and fluid overload, improve with dialysis, but the increasing age of patients initiating renal replacement therapy leaves many untreatable comorbidities like dementia and frailty to negatively impact quality of life. Written by nephrologists and PC clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease.

CONTEXT: A diagnosis of advanced chronic kidney disease (CKD), or end stage renal disease (ESRD) represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual's values and goals. OBJECTIVES: This special report describes application of participatory action research (PAR) methods to develop an outpatient integrated nephrology and palliative care program. METHODS: Stakeholder concerns were thematically analyzed to inform translation of a known successful model of outpatient kidney palliative care to a practice in a large, urban medical center in the United States. RESULTS: Stakeholder needs and challenges to meeting these needs were identified. We uncovered a shared understanding of the clinical need for palliative care services in nephrology practice, but apprehension towards practice change. Action steps to modify the base model were created in response to stakeholder feedback. CONCLUSIONS: The development of a model of care that provides a new approach to clinical practice requires attention to relevant stakeholder concerns. PAR is a useful methodological approach that engages stakeholders and builds partnerships. This creation of shared ownership can facilitate innovation and practice change. We synthesized stakeholder concerns to build a conceptual model for an integrated nephrology and palliative care clinical program.

Background: Despite having significant symptom burden and decreased quality of life, patients with advanced kidney disease have limited exposure to palliative care. This is partly explained by lack of research and evidence for the field. We report on challenges to conducting research in an outpatient kidney palliative care clinic (KPCC).
Method(s): Patients with ESRD or CKD stage IV/V and their caregivers were approached to participate in a interview study on their experience in a KPCC. Consent was obtained in person during clinic visits from Jan -June 2017.
Result(s): Thirty three patients were referred to KPCC, with a no show rate of 18%. Fifteen patients met inclusion criteria; ten patients and three caregivers were consented. Cognitive impairment or psychiatric diagnosis led to patient exclusion. Hospitalization, fatigue, or pain led to attrition after consent and the potential bias towards a healthier population being interviewed. Some patients were confused by palliative care or became emotionally distressed during the interview. Patients could stop interviews and supportive conversations took place, however, maintaining a focus on the research question rather than immediately addressing clinical needs was complex. Logistically the consent process was difficult given patients had to stay past their already 60 minute long appointment. Patient physical and cognitive vulnerability, the emotional nature of palliative care topics, and provider-researcher conflict were observed challenges.
Conclusion(s): We uncovered barriers to palliative care research that are unique to patients living with advanced kidney disease. Future kidney palliative care research will need to consider the patient's emotional and physical state as well as the providerresearcher challenge when crafting study design to encourage patient participation and ongoing study of this essential field

Dialysis initiation rates among older adults, aged 75 years or greater, are increasing at a faster rate than for younger age groups. Older adults with advanced CKD (eGFR < 30 ml/min/1.73 m2) typically lose renal function slowly, often suffer from significant comorbidity and thus may die from associated comorbidities before they require dialysis.A patient's pattern of renal function loss over time in relation to their underlying comorbidities can serve as a guide to the probability of a future dialysis requirement. Most who start dialysis, initiate treatment "early", at an estimated glomerulofiltration rate (eGFR) >10 ml/min/1.73 m2 and many initiate dialysis in hospital, often in association with an episode of acute renal failure. In the US older adults start dialysis at a mean e GFR of 12.6 ml/min/1.73 m2 and 20.6% die within six months of dialysis initiation. In both the acute in hospital and outpatient settings, many older adults appear to be initiating dialysis for non-specific, non-life threatening symptoms and clinical contexts. Observational data suggests that dialysis does not provide a survival benefit for older adults with poor mobility and high levels of comorbidity. To optimize the care of this population, early and repeat shared decision making conversations by health care providers, patients, and their families should consider the risks, burdens, and benefits of dialysis versus conservative management, as well as the patient specific symptoms and clinical situations that could justify dialysis initiation. The potential advantages and disadvantages of dialysis therapy should be considered in conjunction with each patient's unique goals and priorities.In conclusion, when considering the morbidity and quality of life impact associated with dialysis, many older adults may prefer to delay dialysis until there is a definitive indication or may opt for conservative management without dialysis. This approach can incorporate all CKD treatments other than dialysis, provide psychosocial and spiritual support and active symptom management and may also incorporate a palliative care approach with less medical monitoring of lab parameters and more focus on the use of drug therapies directed to relief of a patient's symptoms.

Maintenance dialysis patients experience a high burden of physical and emotional symptoms that directly affect their quality of life and health care utilization. In this review, we specifically highlight common troublesome symptoms affecting dialysis patients: insomnia, restless legs syndrome, and uremic pruritus. Epidemiology, pathophysiology, and evidence-based current treatment are reviewed with the goal of providing a guide for diagnosis and treatment. Finally, we identify multiple additional areas of further study needed to improve symptom management in dialysis patients.

Technologic advances, such as continuous RRT, provide lifesaving therapy for many patients. AKI in the critically ill patient, a fatal diagnosis in the past, is now often a survivable condition. Dialysis decision making for the critically ill patient with AKI is complex. What was once a question solely of survival now is nuanced by an individual's definition of quality of life, personal values, and short- and long-term prognoses. Clinical evaluation of AKI in the critically ill is multifaceted. Treatment decision making requires consideration of the natural evolution of the patient's AKI within the context of the global prognosis. Situations are often marked by prognostic uncertainty and clinical unknowns. In the face of these uncertainties, establishment of patient-directed therapies is imperative. A time-limited trial of continuous RRT in this setting is often appropriate but difficult to execute. Using patient preferences as a clinical guide, a proper time-limited trial requires assessment of prognosis, elicitation of patient values, strong communication skills, clear documentation, and often, appropriate integration of palliative care services. A well conducted time-limited trial can avoid interprofessional conflict and provide support for the patient, family, and staff.

Thoughtful decision-making in a patient with cancer and kidney disease requires a comprehensive discussion of prognosis and therapy options for both conditions framed by the individual's preferences and goals of care. An estimate of overall prognosis is generated that includes the patient's clinical presentation and parameters associated with adverse outcomes, such as age, performance status, frailty, malnutrition, and comorbidities. Empathic communication of this information using a shared decision-making approach can lead to an informed decision that respects patient autonomy and is consistent with the patient's "big-picture" goals and personal values.