Faculty Bibliography

Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.

Background: Patients with advanced kidney disease have an elevated symptom burden, increased mortality, and poor quality of life. While palliative care can address these issues, nephrology patients infrequently receive such care. To address this, we implemented an ambulatory kidney palliative care program. We describe our initial outcomes.
Method(s): Utilizing chart abstractions, we characterized the clinic population and symptom burden for patients seen from May 6, 2016-July 6, 2018.
Result(s): Ninety-four patients were referred; 74 (78.7%) patients seen. Forty (54.1%) had follow-up appointments (range 2-13). Mean patient age was 72.7 +/-16 years with 32 (43.2%) on dialysis. The mean symptom burden (n=65) was 12 (+/- 4.9) symptoms (out of 17) with mean severity of 2 (range 0-4), representing moderate severity. The most common physical symptoms were nausea (78%), dyspnea (72%), pain (68%) and itch (66%). Eighty-seven percent reported anxiety and 73% reported depression. There was no difference in symptom burden between patients on dialysis and those on conservative management (n=22). Patients on conservative management were significantly older and had more comorbidities. By visit two, there was a significant reduction in global symptom score (21.9 vs 19.0, p=0.01) in addition to a reduction in anxiety (2.1 vs 1.7, p=0.03), vomiting (0.8 vs 0.2, p=0.04), and restless legs syndrome (1.3 vs 0.8, p = 0.02).
Conclusion(s): Patients with serious kidney disease treated in a kidney palliative care clinic have a high symptom burden regardless of treatment choice. The decision to pursue conservative management is more prevalent in older patients with more comorbidities. Follow up visits to the clinic demonstrated a decrease in symptom burden, suggesting that a dedicated kidney-palliative care clinic may be successful in managing symptoms and addressing unmet need

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.