First-of-its kind study investigates effects of palliative care for medical decision-makers, caregivers

Shannon Carson, MD, professor of medicine and division chief of Pulmonary Diseases and Critical Care Medicine at the UNC School of Medicine, along with co-principal investigator Judith Nelson, MD, JD, at Memorial Sloan Kettering Cancer Center, and Christopher Cox, MD, of Duke University, led a four-year, first-of-its kind clinical study on the effects of palliative care for medical decision-makers.

The results, published July 5 in the Journal of the American Medical Association (JAMA), show that intensive care units in New York and North Carolina hospitals, where the study was conducted, provided communication and family support that was at least as sufficient as specialized interventions (palliative care) for families of chronically ill patients in the ICU. The researchers focused on investigating the psychological distress of caregivers and decision-makers for patients with a chronic critical illness, which is defined as dependence on a respirator for more than one week.

"We have long known that patients experiencing chronic critical illness have a very difficult time because of complications from their illness, long dependence on life support, and long hospitalizations," Carson said.

All of those things also make it difficult and stressful for family members, caretakers, and decision-makers - who are often the same people.

"It's very disruptive to their lives and their work, and - to complicate things even more - we rely on them to assist with a large amount of decision-making. It's very stressful for family members," Carson said. "As ICU physicians, we sometimes worry that we don't provide or aren't able to provide the support and information that families need to help with this decision-making in the most effective ways."

In trying to determine what could be done to keep families better informed and possibly lessen the associated stress and ease anxiety, Carson considered whether offering support from palliative care specialists would be beneficial. Participants in the randomized study were 365 family decision-makers for 250 ICU patients with chronic critical illness.

"We hoped that having families meet with palliative care physicians - at least a couple times -would help families cope better down the line," Carson said. "And so we randomized family members to either meet with palliative care physicians and nurses during the course of their family member's illness, or they received the usual care; all the information they received was from the ICU clinicians - physicians and nurses.

"What we found is that there was no benefit to having these additional meetings with palliative care clinicians. We found that the support and communication provided by the critical care team was quite good. We concluded that while it was an interesting and hopefully useful idea, for now it seems that the support provided by the regular ICU doctors is at least as sufficient as additional support provided by palliative care," Carson said.

In addition, no difference was found in the number of days a patient was in the hospital or the time the patient spent on a respirator or on other therapeutic interventions.

"As an intensivist, I find that to be a positive finding," he said. "We're doing at least as well as the gold standard in this setting. It provides reassurance. Even though we can always do better in communication, we're at least doing as well as anyone can. We will still need to consult palliative care for difficult situations, but routine consultation for all chronically critically ill patients will not be necessary."