A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program

Abstract

Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty. Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice. Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction. Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD] = 16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range = 0-60; SD = 9.1), with a mean of 7.5 (SD = 3.7) individual physical symptoms (range = 0-15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decisionmaking conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively. Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.

An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care

“…Interviewed patients were seen in the clinic a range of 1 to 4 or more visits prior to their interview. The sample population was representative of the general clinic population 19 as most were of advanced age (median age: 67; range: 46-97) and male gender, with approximately 90% having CKD stage V. All individuals on renal replacement therapy (n ¼ 5) were receiving hemodialysis (HD). All the patients interviewed (n ¼ 8) were male, while the all caregivers interviewed were female (n ¼ 3, 2 daughters and 1 spouse).…”

“…We previously described patient demographics and clinical activities of an integrated ambulatory nephrology and palliative care clinical program at our institution called The Kidney CARES (Comprehensive Advanced Renal disease and ESRD Support) Program. 19 We now present findings from an exploratory qualitative study of patient and caregiver perceptions of the clinic. The objectives of this work are to identify the perceived value and impact of the clinic, the palliative care needs of a patient population that would attend the clinic and facilitators or barriers to care delivery.…”

Cardiopulmonary Resuscitation Preferences of People Receiving Dialysis

“…Prior studies conducted in patients with kidney disease and in other populations support the feasibility and effectiveness of engaging patients and families in advance care planning. 42 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 That a substantial proportion of participants herein who did not want to be resuscitated had documented neither a surrogate decision maker nor treatment preferences illuminates an important gap in care. A default approach to resuscitation in many health care systems makes these patients especially vulnerable to receiving care that is incongruent with their preferences.…”

“…Palliative care consultation has been associated with improvement in symptom burden in other populations 36 , 65 but is underused for patients receiving maintenance dialysis. 15 , 66 Although little is known about the feasibility, acceptability, and effectiveness of enhancing palliative care support for patients receiving maintenance dialysis, 52 , 55 , 67 the very high prevalence of palliative care needs and symptom burden among these individuals highlights the potential value of efforts to improve their access to palliative care. 58 , 66 , 68 , 69 , 70 , 71 , 72 , 73 , 74 …”

Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study

“…Emerging models of care demonstrate that integration of palliative care within nephrology practices can help promote conservative kidney management and advance care planning and also improve patient satisfaction among older patients; however, implementation has proved to be challenging [8,9]. Previous research has demonstrated numerous clinician barriers to providing conservative kidney management and facilitating advance care planning including prognostic uncertainty, inconsistent collaboration between nephrologists and primary care physicians (PCP), and limited knowledge of ESRD treatment options [10][11][12].…”