Heather Boykin, DNP, a nurse practitioner on the inpatient palliative care consult team with years of experience in dialysis, and Emily Chang, MD, assistant professor in the division of nephrology and hypertension, have partnered to form the Kidney Palliative Care Clinic (KPCC), a unique collaboration and the first of its kind at UNC. Patients with progressive chronic kidney disease (CKD) have high morbidity, mortality, and symptom burden. Palliative care is a specialty that helps provide relief from the symptoms and stress of serious illness with the goal of enhancing quality of life for both the patient and their family.
As Chang and Boykin began planning the clinic, the target population was patients with late-stage chronic kidney disease, at risk for progression to end-stage kidney disease and dialysis within the next two years. Chang happened to have a patient she had been following for many years who was struggling with exactly the same issues they hoped to address.
“She was a 78-year-old woman with a history of kidney disease for more than 10 years, and she had slowly gotten worse in recent years,” said Chang. “But while she was continuing to live independently with support from her daughter, both she and her daughter recognized that her mental status had slowly been declining, a change not entirely due to her kidney disease, but could also be related to evolving dementia.”
Chang and the patient discussed the possibility of dialysis many times, but the patient was hesitant to pursue it. Chang realized this was an ideal situation where Boykin’s expertise in palliative care would be helpful. The patient was dealing with a life-limiting illness. She needed to manage the pain and symptoms, and be able to make informed decisions about the next steps. Chang told her patient about the new KPCC clinic and explained what the bridge program could offer. She knew it would also help to have advance directives and a plan for end-of-life care.
When Boykin saw the patient at the ACC Kidney Clinic, she followed up on the specific topics Chang had introduced. The patient and her daughter had had time to think through the discussion about goals of care and were ready to address it further.
“They were very receptive to our conversation, and they really appreciated the time we spent discussing patient/family preferences, their values and goals of care that would best align treatment and preserve quality of life,” Boykin said. “Dr. Chang had primed the topic well already, and thoughtfully woven it into care discussions.”
Today, the patient remains off of dialysis but will be followed regularly by both Chang and Boykin, with alternating visits, to continue ongoing discussions since much of their work requires establishing a foundation of respect and understanding in order to make the hard decisions.
The KPCC is also becoming a significant link in the bridge building, especially as it relates to outpatient care. Boykin is working to strengthen the bridge between palliative care and nephrology, and plans to leads education initiatives including a palliative care/nephrology journal club discussion and collaborative education opportunities during nephrology grand rounds. She also contributes education to dialysis organizations, focusing on the basics of palliative care and intersections with nephrology.
Referrals to the KPCC can come from any UNC nephrologist who would like to have a patient screened for an appointment.