NEW ORLEANS — Nurses are comfortable assessing and managing end-of-life pain despite a lack of knowledge about their hospitals' management guidelines for doing so, according to results from a new survey.

"We were surprised by the fact that nurses across the board were very comfortable managing pain, when 40% of the time, pain is not managed according to institutional guidelines," said study researcher Lynn Mackinson, RN, MS, from the Beth Israel Deaconess Medical Center in Boston.

"Our study showed that nurses are really unaware of guidelines. We had staff nurses who did not know guidelines existed," she told Medscape Medical News.

Approximately 20% of patient deaths occur during or shortly after admission to an intensive care unit, Mackinson reported here at the American Association of Critical-Care Nurses 2016 National Teaching Institute and Critical Care Exposition.

"We wanted to know if ICU nurses felt comfortable managing these patients' pain, and if they were following institutional guidelines in their work," she said.

Mackinson and her colleague, Sharon O'Donoghue, RN, MS, also from Beth Israel Deaconess, retrospectively reviewed the records of 48 patients in the intensive care unit who transitioned to comfort-focused end-of-life care. They evaluated practice patterns and adherence to guidelines, including the documentation of pain and the administration of pain medication.

They found that for 40% of the days when patients were experiencing terminal pain, the pain was not managed according to institutional guidelines and the documentation was insufficient.

 
We had staff nurses who did not know guidelines existed.
 

The researchers then conducted a multicenter survey of healthcare workers, developed in collaboration with members of an end-of-life multidisciplinary task force, to measure nurses' comfort in managing end-of-life pain at four academic medical centers in the United States.

They got 270 responses, and 24% of nurses reported caring for a patient at the end of life more than once per month. Those who had more experience rated their comfort in managing end-of-life pain slightly higher.

In three of the centers, those who reported receiving at least 4 hours of education on end-of-life care reported greater comfort managing pain. However, in the one center where respondents reported more education and a greater awareness of guidelines, knowledge did not correlate with comfort. In fact, those who were aware of the guidelines reported a median comfort level of 90 on a 100-point scale, and those who were not aware of the guidelines reported a comfort level of 87 (= .30).

The discrepancy between the confidence level nurses reported and the lack of adherence to guidelines leaves open the question of whether they're following best practices, said Mackinson. "That would be a good question for follow-up."

Nurses and doctors manage pain well in the hospital population, but symptoms and burdens in end-of-life care are different, O'Donoghue explained.

"The patient might want to be more awake and able to engage," she told Medscape Medical News. "So the nurse tries to manage the pain while keeping the patient awake, and doesn't want to give too much pain medication because it might hasten death," she said. "We want the time they have left to be good-quality time."

 
There are times when a patient is in distress and it's not managed well.
 

During their presentation, Mackinson and O'Donoghue pointed out that the Critical Care Pain Observation Tool is widely used to assess pain, but noted that "scales and tools are only as good as the clinician who uses them."

"There are times when a patient is in distress and it's not managed well," said Mackinson.

The pair suggested ways to improve the management of end-of-life pain, including increased education of standardized pain-assessment tools such as the Behavioral Pain Scale and the Critical Care Pain Observation Tool.

"We need to develop evidence-based institutional guidelines," Mackinson said. A good death in the intensive care unit means patient comfort, family support, clinician support, and a post-death debriefing.

"Debriefing would be nice; we don't do that at all," said Mykle Hadrava, RN, from St. Luke's in Duluth, Minnesota. "We place them in a body bag and bring them to the morgue and take the next admission."

Managing pain is harder for nurses with less experience, she told Medscape Medical News. "Sometimes there's no time to take a breath before moving on. There's a patient who is angry because they didn't get their coffee or water as quickly as they expected. You want to tell them, 'I was just helping someone die,' but instead you smile and go on."

 
We know that the way you die in the ICU is at the nurse's discretion.
 

"We know that the way you die in the ICU is at the nurse's discretion," said Anna Rathbun, RN, also from St. Luke's.

Pain management at the end of life varies from nurse to nurse, doctor to doctor, she explained. "There's a different appropriateness scale between physicians. Some say, 'let's do everything possible,' but the next doctor says, 'we've gone too far.' They all have their own beliefs," she said.

"Our policy is that nobody should die alone, and nobody should die in fear," Rathbun said.

At St. Luke's, the nurses always stay with dying patients and hold their hands. Then we have to put a smile on and not show other patients we are grieving, she explained.

"It makes us salty," Rathbun said. "It gets easier, but you're never immune."

Ms Mackinson, Ms O'Donoghue, Ms Hadrava, and Ms Rathbun have disclosed no relevant financial relationships.

American Association of Critical-Care Nurses (AACN) 2016 National Teaching Institute and Critical Care Exposition. Presented May 17, 2016.

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