Palliative care addresses the challenges of advanced kidney disease through provision of expert symptom control, assistance with complex medical decision-making, and facilitation of advance care planning. Internationally, ambulatory kidney palliative care clinics report positive outcomes—yet this approach is rare in the U.S., and little data exists on its effectiveness.
“Our program is one of the few of its kind in this country,” says Jennifer S. Scherer, MD, director of the Kidney CARES (Comprehensive Advanced Renal Disease and End Stage Renal Disease Support) Program, an ambulatory palliative care clinic embedded in NYU Langone Health’s Nephrology Faculty Group Practice.
“We believe this model can benefit many patients,” adds Dr. Scherer, who is double boarded in nephrology and palliative care, “but it’s essential to develop a set of best practices to guide practitioners in a wide range of settings.”
Capturing the Value of Ambulatory Services
In October 2021, a team led by Dr. Scherer published the first U.S. study of patient and caregiver experiences receiving ambulatory palliative care specific to kidney disease. The study, published in the American Journal of Hospice and Palliative Medicine, included semi-structured interviews with eight patients and three caregivers addressing two themes: 1) communication about the emotional and physical aspects of disease, and 2) filling gaps in care.
Under the first theme, participants reported that empathic communication from clinic providers was effective in leading to a better understanding of the life changes associated with advanced kidney disease. Such communication also strengthened patients’ ability to cope with their illness, fostering optimism and a proactive approach to their own care.
Under the second theme, participants identified gaps in their care that were addressed at the clinic—particularly, symptom management and engagement in advance care planning.
The search for symptom relief was a primary factor influencing participants’ decision to attend the clinic. Improvements in pain management were noted by most patients; one reported that this change had “turned my life around.” Many participants engaged in advance care planning during clinic visits, often for the first time.
The majority of patient respondents were age 65 or older, representative of the general clinic population. “End-stage renal disease is far more often a disease of aging,” says Joshua Chodosh, MD, director of the Division of Geriatrics and Palliative Care. “This research exemplifies the value of our integrated focus on improving symptom management and goals of care across geriatrics and palliative care patient populations—and identifying what may be unique needs of older patients.”
The Road Ahead
Dr. Scherer says that further research is needed to determine the optimal model of care for kidney palliative care in the U.S.—as well as how to dispel widespread misperceptions that palliative care pertains only to end-of-life care. In a future study, she and colleagues plan to focus on providing rigorous evidence for integration of palliative care through randomized controlled trials testing the effectiveness of this approach to care.
“Our study participants described a clinical experience of ambulatory kidney palliative care that is relatively unknown in the U.S.”
Jennifer S. Scherer, MD
“Our study participants described a clinical experience of ambulatory kidney palliative care that is relatively unknown in the U.S.,” Dr. Scherer observes. “I hope these data can be of value to other [health systems] seeking to develop more patient-centered models of care for those living with kidney disease.”
