Long-term care nurses often 'scramble' to get family members' blessing for palliative care, research shows

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Nursing home residents might not transition to full palliative care until they are very near death, at which point nurses and family members act in a state of crisis, suggests recently published research out of Canada.

Investigators with Trent University and the University of Alberta interviewed staff members, resident family members and residents at three long-term care facilities in Ontario. Timing on moving from life-prolonging interventions to palliative care is a thorny issue, the researchers found.

Even with advance directives in place, family members often want more robust interventions as a resident approaches death, many of the staff members noted. They proposed various possible explanations, such as that the magnitude of the decision makes it especially hard.

“Like wow, that's a big one to say, guess what, it's no more antibiotics for you,” said one long-term care professional, describing one particularly tough decision facing family members.

However, nurses also described some resistance on their own part to moving to palliative care. For instance, one registered nurse said it could be seen as “giving up on” a resident.

As a result of these factors, the decision to transition to palliative care might be put off until imminent death is certain. This could be a matter of hours, one nurse said. At this point, caregivers might have to swiftly engage family members about the decision to administer only palliative care, which can be a “problem,” as one administrator said: “The staff is just going around doing their jobs and then it's like — oh whoa — and then it's a scramble … to get the family on board.”

Education and communication initiatives could promote more peaceful and purposeful end-of-life care, the study authors concluded. For example, the meaning of palliative care should be clarified, so that both family members and caregivers see it as a type of care rather than as “ceasing to care” or a sign of “imminent death.” Simulation activities could help long-term care workers better communicate with resident families regarding end-of-life issues, and facility policies around advance planning should address the issue of how to care for a resident with an uncertain prognosis.

While their research might not apply to facilities outside Ontario, their “qualitative findings offer insights that contribute to an understanding of the complex and situated phenomenon of advance care planning,” the authors noted. Their findings appear in the Open Journal of Nursing. 

Other recent studies have come to similar conclusions about how difficult it can be for family members to make decisions about what level of care is appropriate, even if an advance directive is in place.

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