Cancer clinicians and a chaplain at the Johns Hopkins Kimmel Cancer Center have developed a new tool to help doctors, nurses and other health care providers talk to dying patients and families who are, literally, praying for a miracle.
The AMEN (Affirm, Meet, Educate, No matter what) protocol, a script that can be used by medical staff, offers a way to negotiate these challenging conversations to affirm or acknowledge a patient's hope, share the patient's wish with others, continue to educate the patient and family about medical issues, and assure them that their health care team will remain with them throughout the duration of their care, "no matter what."
"The AMEN tool allows the provider to join the patient or family member as a fellow human being with hopes and aspirations, and fosters a sense of trust and commitment to care," said Rhonda S. Cooper, M. Div., B.C.C., the Cancer Center's chaplain.
In lectures at Johns Hopkins, she says, the tool has been presented to clinical staff as a way "to respect our patients' beliefs and values as we care for them to the best of our ability." Cooper and her colleagues described the conversational protocol online in the May 6 issue of the Journal of Oncology Practice.
According to Cooper, patients and their families often turn to the idea of a miracle during a serious illness or trauma. In a study cited by the researchers and conducted by the University of Connecticut and Georgetown University, 57 percent of adults randomly surveyed said they believed that "God's intervention could save a family member" even when physicians said that any further treatments would be futile.
Doctors and nurses may feel uncomfortable discussing miracles as a religious event, or feel that they do not have the training or time to talk about miracles, Cooper says, but adds it is important not to dismiss the idea when patients or family bring it up.
"If the provider makes a comment that sounds dismissive of God or the person's faith or beliefs, that definitely will affect the trust relationship," she says. "The goal of the conversation between provider and the patient or family is to stay connected, not debate the possibility of miracles happening or not happening."
The AMEN tool, which specifically consists of a recommended script for talking with patients, can help medical experts see the hope for a miracle as an opportunity to join the patient or family in their end-of-life conversation, Cooper says. The goal is to maintain trust and foster open and honest communication as the care plan is being discussed. The tool can remind providers to "ask, rather than assume, what patients in treatment are hoping for," said Anna Ferguson, RN, a collaborator on the protocol.
The "no matter what" aspect can be especially important for patients transitioning from aggressive to palliative care, Cooper noted. "We all believe that 'non-abandonment' or accompanying the patient or family 'every step of the way' regardless of treatment outcome is what we can assure everyone who steps through our doors."
"We do not expect providers to become theologians or 'miracle experts,'" she stressed, "but instead to maintain the connection and respond to the patient's invitation to journey with them through their experience."
The work also included Kimmel Center researchers Joann N. Bodurtha, M.D., M.P.H., and Thomas J. Smith, M.D., F.A.C.P., F.A.S.C.O., F.A.A.H.P.M.