ORLANDO, Fla. – Most patients with end-stage renal disease will start on some form of dialysis. But another option—making the decision to choose conservative care and forgo dialysis—doesn’t mean “doing nothing,” noted LaVonne Burrows, APRN, BC, CNN, during a presentation at the National Kidney Foundation’s Spring Clinical Meetings held here this week.
Of the patients who die on dialysis each year, an estimated 20%–25% do so by forgoing dialysis or withdrawing from the therapy, according to data from the U.S. Renal Data System. Both options should be presented to patients as part of advance care planning, said Burrows, who is from Branson (Mo.) Nephrology and Dialysis.
Many professionals and patients confuse terms such as palliative care and hospice, both which can be a part of conservative care. Palliative comes from the word palliat, which means “cloak” in Latin. Palliative care “cloaks or masks a person’s pain,” said Burrows. Hospice comes from the Latin word “hospis” where means hospitality. Thus, you may be providing hospitable care for patients as they come closer to death.
Living with the conservative approach
The average life expectancy for patients who withdraw from dialysis is about seven days, said Burrows, but it can vary considerably. People may decide to forgo dialysis for a number of reasons.
- It involves an invasive procedure, such as creating the access. That has its own complications, including steel syndrome and the risk of decreased kidney function.
- There are also many burdens of dialysis, such as limitations to travel. Research has shown that patients would be willing to forgo 15 months of life expectancy to include an ability to travel, said Burrows.
She reviewed a number of studies about patients who chose conservative care—all from countries outside the U.S. She speculated that universal health care systems, common in most foreign countries, may look more carefully at how they use their resources.
“There is no database similar to the U.S. Renal Data System that tracks patients who choose conservative care,” said Burrows. “There are some concerns that a randomized controlled clinical trial may not be ethical,” i.e., forcing patients into a clinical environment where they may die, she said.
The results of the international studies showed that more patients need to be presented with the option of conservative care. Greater use of advanced care planning would help give more patients control. Likewise, “It is important to have significant people in their lives aware of their wishes,” said Burrows, and, at the same time, patients should not be given unrealistic expectations of treatment benefits.
“Shared decision making is critical,” said Burrows. “If we talk to patients ahead of time and tell them what to expect, we can help them chose the option that is best for them.”