Through a partnership with the Pathways Project, in collaboration with the Coalition for Supportive Care of Kidney Patients, a Dallas-based nephrology practice has identified ways to tailor advance care planning to the individual patient. The methods, which assessed using “small tests of change,” were presented at the virtual National Kidney Foundation Spring Clinical Meetings.
“Current goals of care conversations are infrequent, late and limited,” Mary Beth Callahan, APHSW-C, ACSW/LCSW, supportive care team program manager at Dallas Nephrology Associates, told Healio Nephrology. “Often, goals of care conversations have not been discussed and a person (a patient or our loved one) becomes too ill to think through their desires and loses the capacity to relate this important information to the people who need to know — those who will speak on their behalf. Because of this, people spend many of their last days in hospitals and ICU.”
After completing a fellowship in end of life care from New York University in 2018, Callahan developed what she called an “infectious motivation” to review and improve on the ways her practice provided goals of care conversations to patients.
According to Callahan, in the past 2 decades, there has been an increasing focus on improving quality of life by understanding patients’ wishes through such conversations. Seeking to identify methods to improve advance care planning (and incorporate these conversations earlier in the trajectory of care), social workers and nephrologists worked together to identify patients with chronic kidney disease stages 4 to 5 who were older than age 65 years. First conducting a needs assessment of nephrologists, a physician trainer then provided serious illness conversations and care project (SICP) training to providers. After implementing serious illness conversations, a process of small tests was designed to review the SICP monthly and to ensure patients in need of such conversations were identified earlier and that care mirrored their preferences (documenting advance care planning preferences clearly in the medical record).
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These small tests of change demonstrated the conversations increased awareness of patients’ wishes, aligned care with patients’ goals and decreased moral distress for patients, families and providers.
The conversations also facilitated better communication, giving patients the opportunity to consider medical management without dialysis.
“Change takes time,” she said. “Our focus in nephrology practices across the country is about keeping people alive and providing person-centered care to help patients appreciate a ‘new normal’ as their quality of life ebbs and flows with dialysis and transplant.”
Callahan acknowledged it is often difficult to obtain hospital data for patients who have chosen home-based palliative care, hospice care and/or medical management without dialysis. She suggested that research focused on patient-perceived quality of life (as well as perceptions of family members) during the decision-making process can help inform models of care, adding that “in a time of value-based care,” CMS may support demonstration projects that allow patients to have a trial of palliative dialysis.
As she explained further: “If a patient or loved one is uncertain about foregoing dialysis to receive medical management without dialysis, dialysis facilities could allow this without penalty under metrics or payment.”
This would provide the patient and family with the opportunity to explore whether dialysis is the appropriate option for end-of-life care, she said.
“With continued research, we can focus on improving patient-level care by aligning with what matters most to patients.” – by Melissa J. Webb
Source: Healio
