Dialysis Regret Common Among Patients With Kidney Disease

Pam Harrison

June 10, 2020

A significant proportion of patients with kidney disease on maintenance dialysis in the United States regret their decision to initiate such treatment, survey results indicate.

Of 395 surveyed patients receiving hemodialysis or peritoneal dialysis at seven centers in Cleveland, 21% indicated they had some regret, say Fahad Saeed, MD, University of Rochester Medical Center, New York, and colleagues in the Clinical Journal of the American Society of Nephrology.

After adjusting for a variety of confounders, those who chose dialysis over conservative management just to please their physician or family members were over twofold more likely to regret starting dialysis (odds ratio [OR], 2.34) compared to patients who did not choose dialysis to please others (P < .01).

In contrast, patients who had talked to their physician about how long they would likely live, or who had completed a living will, were more than half as likely not to regret their decision to start dialysis compared with those who had done neither, at ORs of 0.42 and 0.48, respectively (P = .03 for both endpoints).

"It's human nature — if you are forewarned about something, if you are provided with all the information, you need to make a decision and then you make it, that is one thing," Saeed told Medscape Medical News.

"But if you start treatment that has a major impact on your life and then you find out, 'this is not what I was told,' then people develop feelings of resentment and regret," he added.

"So the presence or absence of regret could be a measure of the quality of the dialysis decision-making process, and it's the nephrologist's job to help patients and families make a decision that they can live comfortably with," Saeed emphasized.

"Nephrologists need to give patients and family members detailed information about life expectancy and quality of life with and without dialysis, and patients should talk with their doctor about their life expectancy and complete a living will."

Many Not Being Given Choice of Conservative Management

The researchers collected information from patients receiving maintenance dialysis in the form of a 41-item questionnaire examining demographics, attitudes, and beliefs about dialysis decision-making and end-of-life care, among other issues. 

Decisional regret was assessed using the single question: "Do you regret your decision to start dialysis?"

Only two respondents indicated that they "weren't sure" or "didn't know," and these two were included among patients who indicated that they did regret their decision.

Interestingly, age, gender, type of dialysis received, and length of time the patient had been on dialysis were not significantly associated with regret, the authors point out.

"We know from the literature that when the process of informed decision-making is followed and patients are presented with all the options and they are given an opportunity to deliberate on that decision, they are more likely to choose conservative treatment options," Saeed explained.

"But currently, in clinical practice, many patients are not being given the choice of active medical management without dialysis," he observed.

If patients who need renal replacement therapy are given any choice at all, this is often simply the type of dialysis they would prefer, or the arterial access they might favor, the researchers note.

Nephrologists Need to Know Patients, Help Make Decision if Needed

Saeed acknowledged that not all patients want to be autonomous.

At times, some "patients want family to make the decision for them, and there are patients who want the nephrologist to make it for them as well," Saeed observed.

However, nephrologists still owe it to patients to explore why, in certain instances, patients do not want to make a decision for themselves. Are they concerned about offending a family member, for example?

And even if the nephrologist determines that the patient really does want to leave the decision to the physician, "the nephrologist still has to take time to get to know the patient and to know their goals," he suggested.

Then it is appropriate for nephrologists to make a recommendation "because in a strange way, they are still sharing the decision with the patient because they know what the patient wishes," he explained.

Part of the solution to encouraging patient autonomy is to offer more targeted training to nephrology fellows, and even nephrologists themselves, to help better negotiate what can be difficult prognostic, end-of-life discussions.

"These are well-intentioned physicians who don't want to disappoint their patients and they are also worried that they might be wrong because no one has a crystal ball when it comes to prognostication," Saeed said.

"So the uncertainty, the fear, and the lack of training all preclude physicians from having these discussions," he said.

Saeed has reported no relevant financial relationships.

CJASN. Published online June 4, 2020. Abstract

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