Some individuals with end-stage renal disease (ESRD) are willing to give up a few months of life rather than live with the logistical difficulties that can be associated with dialysis, according to a survey.
The survey findings, which were published online in the Canadian Medical Association Journal, showed that patients would be willing to forgo seven months of life expectancy in exchange for having fewer hospital visits for dialysis and forgo 15 months of life expectancy so they could travel more. It is the first study of its kind to examine the choices pre-dialysis patients make between dialysis and no dialysis.
“Our research has shown that patients are particularly interested in knowing their expected survival, the number of visits to a dialysis facility that they would have to make, the resultant restrictions on their ability to travel for work or vacation, and the time of day dialysis can be performed,” noted lead investigator Rachael Morton, PhD, of the Sydney School of Public Health at the University of Sydney in Australia. “In addition, patients have the right to know that a pathway of care is available should they choose not to initiate dialysis.”
The survey was completed by 105 subjects, all of whom had stage 3-5 chronic kidney disease. Their average age was 63 years, 56% were men, and 44% had private health insurance.
The study is what is known as a discrete choice experiment in which participants are asked to choose between several hypothetical scenarios. The participants were presented with 12 choice sets (scenarios) involving trade-offs between life expectancy, number of visits to hospital per week for dialysis, travel restrictions, number of hours on treatment and whether subsidized transportation was available for hospital visits. The alternative to dialysis was presented as supportive non-dialysis medical management.
The patients chose dialysis as their preferred option 90% of the time. Six patients chose conservative care with every scenario. Some of the reasons the patients gave, when filling in the optional comments section at the end of the survey, were—in this case, from a 67-year-old man—“I think dialysis would be very restrictive to my quality of life. I am very active in my community and also love to travel and head bush whenever I like. At the moment I have a very unrestrictive lifestyle and want to keep it that way.”
As the investigators expected, higher average estimated life expectancy was associated with an 84% greater likelihood that the patients would choose dialysis. Subjects were nearly nine times as likely to opt for dialysis if it was available during the day or evening, versus only during the day or overnight and 55% more likely if subsidized transportation was available.
The researchers also used the survey responses to calculate the trade-offs between life expectancy and other characteristics. They found patients were willing to forgo seven months of life expectancy in exchange for reducing the number of hospital visits for dialysis from four to three. They were willing to forgo 15 months of life expectancy to decrease their travel restrictions by one level, for example, from “very restricted” to “somewhat restricted.”
The investigators concluded that dialysis should not be the presumed treatment for all patients approaching ESRD.
“We acknowledge that instigating such conversations [about non-dialysis options] with patients and their families may be difficult. However, further support is available for nephrologists through the ‘shared decision making’ clinical practice guideline (2010) issued by the Renal Physicians Association,” said Dr. Morton, referring to the Rockville, Md.-based organization.