PhD student Jonathan Yoder
earned two national grants to support his dissertation research, a project focused on the needs and experiences of people living with advanced chronic kidney disease and those who care for them.
Yoder earned a grant from the American Association of Nurse Practitioners as well as an award from the Southern Nursing Research Society for the work, which will describe the special physical, emotional, social, and spiritual concerns of this group of patients and their loved ones while also exploring their perspectives regarding their understanding of and use of palliative care.
Both grants were for $5,000, for a total of $10,000 to fund Yoder's work.
Studies indicate that many renal patients find it difficult to balance their own wishes with those of their loved ones. Often, the discord is visible when the patient expresses a wish for a conservative approach—medication to manage their symptoms, perhaps, rather than continued dialysis or invasive surgery—while caregivers wish for the more aggressive approach that prolongs life, though perhaps not quality of life.
“Patients sometimes feel they’re not given much choice,” explains Yoder, who is a family nurse practitioner. And while they often lack plans for how they want their end of life to be, renal patients as a group are more likely to undergo high-intensity interventions immediately prior to their death. Under Metzger’s and Jones’ guidance, Yoder’s qualitative study will explore how palliative care, especially if introduced early on, might improve shared decision making among patients, caregivers, and providers.
In addition to advising by professor Randy Jones
, who's developed a decisionmaking tool for men with advanced prostate cancer
, Yoder is working with faculty member Maureen Metzger
, who herself is developing a communication method
for practitioners and, ultimately, a tool for end-of-life decisionmaking to support this vulnerable population. Compared to cancer patients, says Metzger, most patients with advanced kidney disease who are on dialysis report never having had these sorts of critical discussions with their caregivers, despite a growing emphasis on advance care planning in the field.
Yoder's work aims to provide critical understanding of the issues these patients and their loved ones face, and what strategies and tactics might be used to compassionately ensure they understand their full range of options related to symptom management, disease management choices, and other challenges or gaps in care they experience.
For her part, Metzger is currently conducting a trial at UVA involving 144 patients with end-stage kidney disease, and their caregivers, with co-investigator Emaad Abdel-Rahma, a UVA nephrologist, with funding from the National Institute of Nursing Research (other trials are taking place at Emory University and the University of North Carolina). The study’s focus doesn’t seek to buttress decision aids’ importance as much as it aims to model a way that clinicians might use them to inform care.