Doctors say that when patients are seriously ill, the main obstacles to discussing what the goals of care should be are family disagreement and patient denial.
“It’s a difficult time,” said lead author Dr. John J. You of McMaster University in Hamilton, Ontario in a phone interview. “But that means we need to be there with extra support and profoundly good skills.”
In 2012 and 2013, You and his team surveyed more than 1,000 clinicians, including nurses, residents and staff physicians, at 13 university-based hospitals in Canada, asking them to rate the importance of 21 potential barriers to goals-of-care discussions with seriously ill hospitalized patients.
One such patient, for example, might be a housebound 70-year-old with severe lung disease who uses oxygen at home and has been hospitalized in worsening condition.
On average, clinicians said the most severe barriers to discussing the goals of care were family members’ difficulty accepting a loved one’s poor prognosis, difficulty understanding the limitations of life-sustaining therapies, and lack of agreement about goals of care, and the patient’s trouble understanding or accepting their prognosis.
Other obstacles, like physician lack of time, language barriers, lack of training and desire to avoid being sued, were rated as less important, according to results in JAMA Internal Medicine.
“Are we in the medical field pointing the finger at patients?” asked Dr. James N. Kirkpatrick of the University of Pennsylvania in Philadelphia, who wrote an editorial about the study.
“It’s difficult to say where exactly the fault lies,” Kirkpatrick told Reuters Health by phone.
“The problem is that we are very focused on the next intervention, or drug, or device,” he said. “We’ll make people live longer but we kind of don’t think beyond that,” though that is changing, he said.
There will have to be a broad range of solutions to make sure care goal discussions happen in the hospital, You said.
Conversations in the hospital, in the middle of a crisis, “can be a lot easier and more productive if there has been more advanced care planning upstream before patients land in the hospital, and if we normalize conversation about death and dying, which is inevitable,” he said.
Goals of care are different from an advanced directive, he noted.
“Oftentimes we view the advanced directive discussions in terms of a one shot deal, we don’t really look at it as a process,” he said. “Decision making is a process.”
All the clinicians rated physicians as the most acceptable professional group to take charge of communicating with patients about care plans. They also often felt it would be acceptable for others, like nurses and social workers, to initiate the discussions and be a decision coach.
“Physicians still need to have critical roles, but there are underused and under recognized skill sets in other positions,” like nurses, You said.
“As a physician we tend to see that it’s only our responsibility, which can be a heavy burden,” You said.