End-of-life care is maturing as a field, according the director of the National Institute of Nursing Research, Patricia Grady, RN, PhD, FAAN. And it is an area where nurses can make major contributions "because it is very much about symptom management and that is what nurses do so well," she said in a recent interview with Nurse.com.

NINR hosted a summit in August on end-of-life and palliative care, which drew nearly 1,000 registrants. Grady said that conference reflected hopeful signs that the field is expanding its science.

Among other things, it showed more people are involved in this area and more young people are choosing it as a specialty, she said. That's critical, since at the last National Institutes of Health summit on the topic eight years ago, participants stressed the need to train more professionals, she added.

With the population aging and baby boomers moving into the older stages of life, issues including "the choices one makes, the types of communication that goes on, the types of care that a person wants," are extremely important and will become increasingly so, Grady said.

At the same time, we are seeing a population that is much more engaged in self management in illness and in working with others in the healthcare system to do that, she added.

Beyond that, she said, "With healthcare reform, there is a lot of emphasis on giving the best care: the idea that if you give the best care, the most appropriate care, that it is also more cost effective," she said.

Within end-of-life care and palliative care, patients and families often worry about money being spent on procedures they do not want, she said.

NINR has taken the lead on end-of-life-care issues with the NIH since 1997, around the time the Institute of Medicine reported there was widespread dissatisfaction among healthcare professionals and families on the issue. "There was very little we knew about taking the very best care of patients at that stage of life," Grady said. The IOM report said, "In reality, both society and individuals often fall short of what is reasonably-if not simply-achievable," in humane care of the dying. (The report can be found at http://www.nap.edu/catalog.php?record_id=5801.)

In the intervening years, NINR has sponsored research to look at improving communication among healthcare professionals, family members and patients. A study published in the New England Journal of Medicine in 2007 found conferences with patients' families that adhered to specific guidelines and that allowed the family to talk more reduced stress and anxiety. (The study can be found at http://www.nih.gov/news/pr/feb2007/ninr-01.htm.)

There can be disagreements among patients, families and healthcare professionals about issues such as pain medication, but research indicates that good communication strategies significantly decrease emotional issues around those conflicts, Grady said. Research has shown that what happens during the end-of-life period has future implications for the family members and how they overcome the stress of losing a loved one, she said.

When the tested communication strategies are carried out, she said, "We see less evidence of what is essentially post traumatic stress disorder in family members up to even three, six months after the death of a loved one."

NINR also funded research on Oregon Health & Science University's "Physician's Orders for Life Sustaining Treatment," a form that goes beyond advanced directives and allows patients to specifically describe what care they do or do not want.

A 2010 study in the Journal of the American Geriatrics Society found that patients who used the tool were less likely to receive unwanted treatments than those who used traditional advanced directives, Grady said. (The study can be found at http://www.nih.gov/news/health/jul2010/ninr-08.htm.)

Another area of research is cultural and ethnic preferences. For example, in cases of restrictive diets, "If you in your culture tend to like certain types of food, then those kinds of preferences should be honored in making prescriptive advice," Grady said. "With a little bit of forewarning, it would be just as easy to provide a special diet in an ethnic, cultural menu."

Although there's growing interest in end-of-life care, it's hard to know what is happening out in the real world, Grady said. A follow-up IOM report or wholesale evaluation of the healthcare system would be required, she said. "But we do know that hospitals across the country are increasingly supporting the use of advanced directives. And we also know that probably close to 40% of the states across the country are now using the POLST information tool for patient preferences about life-sustaining treatment," Grady said.

For some nurses, working with end-of-life scenarios can be a difficult experience, Grady said. But there are undergraduate and continuing education courses available. Reading about the subject and talking to experienced nurses can help inexperienced nurses become more comfortable with the concepts and be in a position to be more effective, she added.

She also refered nurses to the NINR website, where there are videocasts of the recent summit and other information:

http://www.ninr.nih.gov/ResearchAndFunding/Spotlight+on+End-of-Life+Research.htm