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PORTLAND, Ore. - A survey of hospice programs in Oregon found that only 31 percent had policies for initiating the use of antibiotics, and only 17 percent a policy for when to discontinue them - pointing to a continued uncertainty about the use of such medications in this select group of terminal patients.

The findings, published in the American Journal of Hospice and Palliative Medicine, are among the first to quantify policies for antibiotic use in hospice, where the primary goal is to promote patient comfort and quality of remaining life, but not to prolong it.

A concern highlighted in the research is that antibiotics may have unwanted side effects that can decrease a patient's comfort, such as nausea, vomiting, diarrhea or yeast infection. It found that such symptoms were observed "sometimes or often" by about half or more of responding hospice programs.

Respondents to the survey did say that they rarely or never use antibiotics to prolong patient's lives - but 14 percent of programs also reported that this sometimes occurs.

"The lack of specific policies and guidelines about antibiotic use in hospice care reflects the difficulty and uncertainty that still exists in how to manage end-of-life care, even among this group of people who have chosen not to prolong their life," said Jon Furuno, an associate professor in the Oregon State University/Oregon Health & Science University College of Pharmacy, and lead author on the study.

"There may be situations where antibiotic use does improve symptoms and patient comfort," Furuno said. "On the other hand, antibiotic use is not always benign. They can have adverse events associated with their use, such as gastrointestinal problems. These are difficult decisions in a situation where we're trying to reduce the number of medications taken at the end of life."

The development of policies is also complicated by medical uncertainty over exactly how a patient may respond to antibiotic use, Furuno said, and by a paucity of scientific evidence over how well they may work to reduce symptoms in patients who are already terminally ill and often have compromised immune systems.

"The goals of hospice, in general, are fairly well understood by the parties involved, but the application in the field is much more variable," Furuno said. "There will always be, and should be, flexibility in decisions that vary from patient to patient, and even if we did develop policies they could not be too rigid. But it would help if we could develop some better guidelines to help inform these decisions."

According to Barbara Hansen, CEO of the Oregon Hospice Association, this study is an important first step toward quantifying the issues related to antibiotic use in hospice patients, and understanding current practices.

"This issue is challenging and problematic, but we all face it, and this research has now laid the groundwork to know what is happening in the field," Hansen said. "We do need to be more systematic in our approaches, and give hospice practitioners more support in how to talk with patients and their families about antibiotic use."

A step toward policies, Hansen said, might be guidance about determining whether an infection is actually causing a patient significant discomfort - if not, some may be better left untreated, rather than risk the additional complications that could ensue from treatment. And there may be communication that could be developed earlier to help family members understand the wishes of the patient being care for, she said.

Complicating the problem, the researchers said, is that antibiotic use is so ingrained in contemporary medicine. Previous studies at OSU have shown that 27 percent of hospice patients are still taking antibiotics in the final week of their life. This is a special concern for people who have specifically chosen an end-of-life approach that is focused on protecting the remaining quality of life without aggressively continuing medical treatment.

Hospice is covered by Medicare for people with a life expectancy of less than six months. It often allows people to die in their own homes, helps to reduce medical costs and hospital stays, and its services are now used by more than one third of dying Americans.

Collaborators on this study were from the OSU/OHSU College of Pharmacy and the Oregon Health & Science University. It was supported by the National Institutes of Health.