In the Journals

More patient-centered options needed for individuals with chronic kidney disease

Susan Wong
Susan P. Y. Wong

Clinicians tend not to offer dialysis alternatives to patients with chronic kidney disease when they do not perceive the patients to be appropriate candidates or when patients choose not to initiate treatment, according to a study published in JAMA Internal Medicine.

“While maintenance dialysis is a remarkable therapy that has extended the lives of many patients, it is also a very demanding form of therapy that comes with its own burdens and complications,” Susan P. Y. Wong, MD, MS, assistant professor in the division of nephrology at the University of Washington, told Healio Internal Medicine. “Given the substantial trade-offs and implications that can occur with decisions about dialysis, we wanted to understand how decisions to forgo initiation of maintenance dialysis unfold.”

Researchers conducted a qualitative analysis of the medical record notes of 851 adults (842 men; mean age, 75 years; 66.6% white) who received care from the U.S. Veterans Health Administration and who had chosen not to start dialysis between Jan. 1, 2000 and Oct. 1, 2011. Median follow-up was 0.5 years.

From the notes, researchers identified three primary interrelated dynamics or themes that ultimately resulted in the decision not to initiate dialysis.

The first, labeled “dialysis as the norm,” involved the patients’ reluctance to start dialysis and the response of clinicians. According to the researchers, many of the patients indicated they would rather “die” than undergo dialysis, yet clinicians repeatedly questioned their decisions and competency, continued to encourage dialysis and prepared for patients to change their minds.

A second dynamic was observed in situations where clinicians did not consider patients to be appropriate candidates for dialysis. In these situations, clinicians seemed to pay little consideration to patient values and goals, focusing instead on certain patient characteristics or a perceived poor prognosis, according to the researchers.

Doctor with patient 
Clinicians tend not to offer dialysis alternatives to patients with chronic kidney disease when they do not perceive the patients to be appropriate candidates or when patients choose not to initiate treatment.
Source: Adobe Stock

Finally, once it was determined that a patient would not be starting dialysis, a third dynamic was revealed. This occurred when clinicians did not know what else to offer the patient besides dialysis. In some cases, clinicians ended their care of the patient or recommended hospice care.

“Our findings highlight how initiation of maintenance dialysis is a powerful default, difficult for patients with advanced kidney disease to resist, and that decisions to forgo dialysis are often less than patient-centered,” Wong said. “More work is needed to determine how we can better support patients who do not wish to undergo maintenance dialysis.”

In a related editorial, Keren Ladin, PhD, of Tufts University, and Alexander K. Smith, MD, MPH, MS, of the University of California, wrote: “Although nephrologists might worry that patients may not try dialysis if they know about an alternative treatment, withholding information is harmful. Many patients regret starting dialysis. Other studies have found that patients want balanced information about treatment options, including conservative management, even when options seem bleak. By understanding patients’ values and drawing on experience, clinicians can help patients explore options, consider potential harms and benefits, and offer a treatment recommendation tailored to patients’ unique preferences. Drawing on their expertise, physicians should help patients ‘try on’ the decision by thinking about how treatment may affect the things that matter most to them.” – by Melissa J. Webb

For more information:

Susan P. Y. Wong, MD, MS, can be reached at spywong@uw.edu.

Disclosures: Wong reports receiving teaching honoraria from VitalTalk. Please see the study for all other authors’ relevant financial disclosures.

 

Susan Wong
Susan P. Y. Wong

Clinicians tend not to offer dialysis alternatives to patients with chronic kidney disease when they do not perceive the patients to be appropriate candidates or when patients choose not to initiate treatment, according to a study published in JAMA Internal Medicine.

“While maintenance dialysis is a remarkable therapy that has extended the lives of many patients, it is also a very demanding form of therapy that comes with its own burdens and complications,” Susan P. Y. Wong, MD, MS, assistant professor in the division of nephrology at the University of Washington, told Healio Internal Medicine. “Given the substantial trade-offs and implications that can occur with decisions about dialysis, we wanted to understand how decisions to forgo initiation of maintenance dialysis unfold.”

Researchers conducted a qualitative analysis of the medical record notes of 851 adults (842 men; mean age, 75 years; 66.6% white) who received care from the U.S. Veterans Health Administration and who had chosen not to start dialysis between Jan. 1, 2000 and Oct. 1, 2011. Median follow-up was 0.5 years.

From the notes, researchers identified three primary interrelated dynamics or themes that ultimately resulted in the decision not to initiate dialysis.

The first, labeled “dialysis as the norm,” involved the patients’ reluctance to start dialysis and the response of clinicians. According to the researchers, many of the patients indicated they would rather “die” than undergo dialysis, yet clinicians repeatedly questioned their decisions and competency, continued to encourage dialysis and prepared for patients to change their minds.

A second dynamic was observed in situations where clinicians did not consider patients to be appropriate candidates for dialysis. In these situations, clinicians seemed to pay little consideration to patient values and goals, focusing instead on certain patient characteristics or a perceived poor prognosis, according to the researchers.

Doctor with patient 
Clinicians tend not to offer dialysis alternatives to patients with chronic kidney disease when they do not perceive the patients to be appropriate candidates or when patients choose not to initiate treatment.
Source: Adobe Stock

Finally, once it was determined that a patient would not be starting dialysis, a third dynamic was revealed. This occurred when clinicians did not know what else to offer the patient besides dialysis. In some cases, clinicians ended their care of the patient or recommended hospice care.

“Our findings highlight how initiation of maintenance dialysis is a powerful default, difficult for patients with advanced kidney disease to resist, and that decisions to forgo dialysis are often less than patient-centered,” Wong said. “More work is needed to determine how we can better support patients who do not wish to undergo maintenance dialysis.”

In a related editorial, Keren Ladin, PhD, of Tufts University, and Alexander K. Smith, MD, MPH, MS, of the University of California, wrote: “Although nephrologists might worry that patients may not try dialysis if they know about an alternative treatment, withholding information is harmful. Many patients regret starting dialysis. Other studies have found that patients want balanced information about treatment options, including conservative management, even when options seem bleak. By understanding patients’ values and drawing on experience, clinicians can help patients explore options, consider potential harms and benefits, and offer a treatment recommendation tailored to patients’ unique preferences. Drawing on their expertise, physicians should help patients ‘try on’ the decision by thinking about how treatment may affect the things that matter most to them.” – by Melissa J. Webb

For more information:

Susan P. Y. Wong, MD, MS, can be reached at spywong@uw.edu.

Disclosures: Wong reports receiving teaching honoraria from VitalTalk. Please see the study for all other authors’ relevant financial disclosures.