Kidney failure patients' advance directives are often inadequate

In a recent study, nearly half of kidney failure patients receiving dialysis had advance directives outlining their preferences related to end-of-life care, but only a very small minority of these directives addressed the management of dialysis. The findings, which appear in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN), indicate that the simple presence or absence of an advance directive is not adequate for fully addressing important aspects of dialysis patients' end-of-life care.

Considerable research has documented the benefits of advance care planning, a series of conversations between patients, loved ones, and health care providers defining a patient's values, goals, and preferences on which to base future medical decisions, including end-of-life care. Advance care planning includes advance directives, legal documents such as a living will designed to record such wishes.

Most studies on advance care planning have been based on surveys. In this latest study, Molly Feely, MD (Mayo Clinic) and her colleagues looked at the actual advance directives of patients receiving dialysis. The researchers retrospectively reviewed the medical records of all patients receiving maintenance, in-center hemodialysis at the Mayo Clinic between January 1, 2007, and January 1, 2012. They also assessed demographic data on these 808 patients, as well as the prevalence and content of advance directives.

"What we found was sobering," said Dr. Feely. Among the 808 patients, 49% had advance directives, of which only 10.6% mentioned dialysis and only 3% specifically addressed dialysis management at the end of life. Notably, for patients receiving dialysis who had advance directives, more of the advance directives addressed cardiopulmonary resuscitation (44.2%), mechanical ventilation (37.1%), artificial nutrition and hydration (34.3%), and pain management (43.4%) than dialysis (10.6%).

"Unfortunately, our study revealed that the advance directives of our dialysis patients failed to address how our patients wanted to manage their dialysis at the end of life, an issue of critical importance to this population," said Dr. Feely. "Future research needs to be much more sophisticated in how we measure the success of advance care planning and advance directive execution such that we assure that we are actually improving patient outcomes."

In an accompanying editorial, Sara Combs, MD, MS (University of Colorado) noted that the United States has the financial resources to be able to provide dialysis to virtually all citizens who need it, regardless of their individual financial situation. "The ability to provide this life-sustaining treatment comes with great responsibility. These responsibilities include the need to inform patients whether dialysis is likely to benefit them or help them meet their goals and to explain that not pursuing dialysis at all or stopping dialysis are viable choices that are available and will be supported," she wrote.