Illuminating the Decision-Making Process among Patients with Advanced CKD Opting to Forgo Dialysis

For patients with advanced chronic kidney disease (CKD), maintenance dialysis offers life-saving benefits that can include restoration of health and improved quality of life. However, the potential benefits of dialysis in extending life and managing the signs and symptoms of uremia are outweighed by the harms that may be associated with maintenance dialysis for some patients, including substantial treatment burden and the risk of progressive loss of physical, social, and cognitive function.

Current data on decision making regarding dialysis in the United States are largely limited to patients who are receiving maintenance therapy; results of studies reveal that dialysis is often presented to patients as a necessity rather than a treatment choice. Data from the US Veterans Affairs (VA) healthcare system suggest that only 14.5% of patients with advanced CKD (or those making decisions on their behalf) opt not to pursue dialysis. Other data indicate that the proportion of patients forgoing dialysis may be even less common in other US healthcare settings.

Susan P. Y. Wong, MD, MS, and colleagues recently conducted an in-depth qualitative analysis to gain a deeper understanding of how decisions not to pursue dialysis occur in the clinical setting. The researchers analyzed medical records of members of a cohort of VA patients with advanced CKD who opted not to initiate dialysis. Results of the analysis were reported online in JAMA Internal Medicine[doi:10.1001/jamainternmed.2018.6197].

The study included electronic medical records of 851 adults receiving care from the US Veterans Health Administration between January 1, 2000, and October 1, 2011. All of the 851 patients had chosen not to start dialysis. The analysis was performed between March 1, 2017, and April 1, 2018.

Of the 851 patients, 842 were men and nine were women, mean age was 75.0 years, and 66.6% (n=567) were white. Median follow-up was 0.5 years; during follow-up 95.4% (n=812) of the cohort died and 38.0% (n=323) enrolled in hospice. Three dominant and interrelated themes relevant to understanding the decision-making process in opting to forgo dialysis emerged after qualitative analysis: (1) dialysis as the norm; (2) patient not a candidate for dialysis; and (3) having nothing to offer beyond dialysis.

Dialysis as the Norm

Many of the patients in the cohort had expressed a strong desire not to start dialysis. In those cases, patient preference was not readily accepted or fulfilled by clinicians; the clinicians repeatedly questioned the patients’ decision, raised concerns about the patients’ competency to make dialysis decisions, encouraged patients to initiate dialysis, and prepared for the patients to change their minds and begin dialysis.

The repeated questioning was often prompted by transitions of care and might have come from the same or different clinicians. In some cases the repeated questioning served to clarify patients’ preferences and confirm competency over time; in other cases the questioning became a source of frustration and even hostility for some patients. The considerations of patients’ competency led clinicians to have concerns about patients’ tendency to be suicidal or depressed or to lack sufficient insight or information to make informed decisions about undergoing dialysis.

Clinicians used a range of strategies to encourage dialysis initiation, including framing the decision to forgo dialysis in negative terms or presenting dialysis as a short-term or interim treatment. When patients expressed a desire not to initiate dialysis before the need arose, clinicians tended to view these decisions as still up for discussion.

Patient Not a Candidate for Dialysis

There was a difference observed in the dynamic at play in situations where clinicians did not consider patients to be candidates for dialysis. Notes in the medical records routinely included language regarding whether patients were candidates or appropriate for dialysis. Such questions arose when there was a concern that dialysis might not lengthen life, particularly in the context of specific patient characteristics such as advanced age and disability.

Having Little to Offer Beyond Dialysis

Once clinicians recognized that patients would not be initiating dialysis, documentation in the medical records suggests that the clinicians felt they had few options to offer the patient. A few nephrology clinicians offered to continue actively monitoring patient care or to make themselves available on an as-needed basis. The more common notation indicated that the nephrology team had nothing more to offer the patient and signed off on care.

The decision not to start dialysis also tended to shut down other treatment options or interventions that might accelerate the loss of remaining kidney function, such as surgery and cardiac catherization. Patients in the population opting not to initiate dialysis were often described as eligible or candidates for hospice care; enrollment in hospice was encouraged. Some patients (or their families) readily agreed to enter hospice care; however, many were resistant to entering hospice care and were not ready to do so until their condition deteriorated substantially.

The researchers cited some limitations to the study, including the findings not being generalizable to populations not well represented in the VA, such as women; limitations of what can be learned from medical records; complexity of the identified themes; and follow-up ending in 2011, creating the possibility that results do not represent contemporary practices.

In conclusion, the researchers said, “This study of a national cohort of patients with advanced CKD not treated with dialysis provides an important window on decision making regarding dialysis in a large US health system. Our findings describe an all-or-nothing approach to care for patients with advanced CKD in which dialysis serves as a powerful default with few perceived alternatives. Regardless of whether patients had to resist clinicians’ recommendations to undergo dialysis or were not considered candidates for dialysis, their goals and values did not seem to figure prominently in the decision-making process. Collectively, these findings call for stronger efforts to develop more patient-centered models of care for patients with advanced CKD with the capacity to proactively support those who do not wish to pursue dialysis.”

Takeaway Points

1. Some patients with advanced chronic kidney disease (CKD) opt not to initiate dialysis. Researchers conducted a qualitative study to describe how those decisions are reached in the clinical setting.
2. Electronic medical records of 851 adults with advanced CKD who opted not to pursue dialysis were examined; the patients were receiving care in the US Veterans Health Administration system.
3. Three major themes emerged: (1) dialysis as the norm; (2) patient not a candidate for dialysis; and (3) having little to offer beyond dialysis.