Patients' families are a key factor in end-of-life care at rural hospitals

Nurses who care for critically ill and dying patients in rural hospitals rate family behaviors and attitudes as key elements to providing end-of-life care, according to new research published in American Journal of Critical Care (AJCC).

A survey of nurses at critical access hospitals (CAHs) found that many respondents pointed to the same obstacles and similar helpful behaviors related to caring for dying patients as those previously identified by their counterparts in larger, more urban facilities, even though the lack of equipment and expertise may present them with different challenges.

"Caring for Rural Patients at End of Life: Perceptions of Critical Access Hospital Nurses" explores how nurses working in CAHs perceived the size of obstacles and helpful behaviors for providing end-of-life care.

More than 1,300 rural and hard-to-access hospitals in the United States are designated as CAHs. These hospitals are located at least 35 miles from another hospital and have 25 or fewer acute patient beds, a 24-hour emergency department and an average length of stay for acute care patients of less than 96 hours. With limited access to critical care specialists, services and equipment, these rural hospitals often transfer critically ill patients to larger facilities once their conditions have stabilized.

The researchers used a 79-item questionnaire that listed specific obstacles and helpful behaviors, included open-ended questions and collected demographic data.

Seven of the top 10 obstacles were related to issues with patients' families that make end-of-life care more difficult, with the top items being family members not understanding the real meaning of the term "lifesaving measures" and intrafamily disagreements about whether to stop or continue life support.

Families were also key elements of the most helpful items related to end-of-life care. Respondents gave high ratings to allowing family members adequate time to be alone with the patient after death, having family members accept that the patient is dying, providing a dignified bedside environment after death, as well as teaching families how to act around the dying patient.

Co-author Renea Beckstrand, Ph.D., RN, CCRN, CNE, is a professor at Brigham Young University College of Nursing, Provo, Utah. She has been studying nurses' perceptions of end-of-life care for more than 20 years, although this was the first survey to focus solely on the perceptions of CAH nurses.

"Every day, critical care nurses deal with issues related to death and dying. Providing quality care to a patient at the end of their life and supporting the family through this vulnerable time is fraught with obstacles, as well as behaviors nurses may consider supportive and helpful," she said. "Our findings suggest that end-of-life care has much in common regardless of rural or urban location."

Although the general lack of staff, specialty equipment and other resources were not identified as top obstacles, having nursing assistive personnel, such as certified nursing assistants, available to help care for dying patients received high marks as a helpful behavior.

After pilot testing and expert review, the researchers added several unique items to the questionnaire that were specific to CAHs, such as lack of hospital staffing, equipment or other resources, which the nurses ranked 15th of the 34 obstacles. Personally knowing the patient ranked 19th overall, and the unavailability of an ethics board ranked 22nd.

"The nurses in this study were likely accustomed to working without many of the resources typically found at urban hospitals and thus didn't perceive resource deficits as significant obstacles to the end-of-life care they provided," Beckstrand said.

The researchers began with a randomly selected sample of 500 of the 1,348 CAHs in the country and then narrowed it to those that provided critical care services, such as mechanical ventilation, central catheters and vasopressors. Research packets with questionnaires were mailed to the nursing directors at 46 hospitals that met the criteria and agreed to participate. The final analysis reviewed data from questionnaires from 188 nurses at 39 CAHs.