In a cohort of 851 U.S. veterans with advanced CKD who opted against having dialysis, most healthcare providers responded to this desire with resistance and did not “readily accept or fulfill patients’ preferences” to forgo dialysis, Susan P. Y. Wong, MD, MS, of the Veterans Affairs Puget Sound Health Care System in Seattle, and colleagues reported in JAMA Internal Medicine.
Wong’s group explained that most clinicians viewed dialysis as the “norm” for treating advanced CKD, and a patient’s desire not to start dialysis was typically met with repeated questioning on behalf of the clinician along with encouragement of dialysis.
In a look at the patients’ medical records, the researchers also found some clinicians writing about their frustrations with these experiences when met with resistance about starting dialysis treatment:
- “Repeatedly every time asked, says he will never agree to dialysis, and will die first. He gets angry, belligerent when asked this question, and says it is his right to refuse any care he chooses.”
- “He refuses to go onto dialysis and was told that the consequences of not going could be death. He says that he will die then.”
- “I called [patient’s] son to again address code status and dialysis status. …He reiterated that per his father’s wishes and the family’s wishes, they did not want anything done. They did not want to start dialysis.”
Most clinicians, however, also reported that they were mentally preparing for these patients to eventually change their minds regarding dialysis treatment.
However, when clinicians realized that the patients were not going to change their minds about starting maintenance dialysis, the clinicians said they often felt they had “little to offer” in terms of alternate treatment options for these patients.
Additionally, among patients whose clinicians had determined that they were unfit candidates for dialysis, the researchers found that patients tended to have very little say in this decision.
“Contemporary clinical practice guidelines favor moving away from a one-size-fits-all approach and toward a more patient-centered approach to care for patients with advanced CKD in which all clinical decisions are responsive to and uphold what matters most to individual patients,” Wong and co-authors advised.
“Our results indicate that among this subgroup of patients with advanced CKD who did not initiate dialysis, the goals, values, and preferences of individual patients did not weigh heavily in clinicians’ approaches to decision-making regarding dialysis,” the team added.
Among this cohort, who were followed for over 10 years, over half received palliative care consultations and over a third were enrolled in hospice. Nearly all patients died during the course of follow-up.
In an accompanying invited commentary, Keren Ladin, PhD, of Tufts University in Boston, and Alexander Smith, MD, of the University of California San Francisco, praised Wong and co-authors for their call for a more patient-centered approach to managing advanced CKD, highlighting the need for greater shared decision-making when choosing whether or not to pursue dialysis.
“[Clinicians] perceive conservative management as a failure, and prefer dialysis even when it results in medicalization of patient goals and activities during the last stage of life,” Ladin and Smith explained. They noted that although nephrologists are trying to steer their patients down the best path, the repeated questioning of patients seen in this study sometimes “crosses the line to browbeating, which undermines patient autonomy.”
Ultimately, they suggested, patients need better alternatives to dialysis, and stated that redefining the meaning of “conservative management” of advanced CKD and “active medical management” could be a beneficial first step in the right direction.
Wong reported receiving teaching honoraria from VitalTalk in the past 3 years; other study authors also reported disclosures.
Commentary author Ladin reported support from the Greenwall Foundation through their Faculty Scholars Program.