Dr. Amos Bailey knows something about death. As an oncologist, he began referring patients to home hospice shortly after it became widely available in the
late 1980s. The experience changed his outlook on care for the dying.
"I was struck that I could have two patients with the same illness, one in the hospital and another at home," says Bailey, who today is director of the
Safe Harbor Palliative Care Program at the Birmingham VA Medical Center and professor of gerontology, geriatrics, and palliative care at the University of
Alabama at Birmingham School of Medicine. "When I visited the ones at home, they were so much more at peace than what I was seeing in the hospital. They
had their medication at their bedside. Their families were there. There weren't unnecessary dietary restrictions. Even something as simple as sitting in a
recliner can make a difference. There were environmental things that made being at home much more comfortable than in the hospital."
The experience eventually led Bailey to initiate a study called Best Practices for End-of-Life Care for our Nation's Veterans, or BEACON, which took place
at six VA medical centers from 2005 to 2011. The study, which included more than 6,000 patients, was published online Jan. 22 in the
Journal of General Internal Medicine.
Dying at home—preferred, but less likely
Polls consistently show that most Americans would prefer to die at home. Unfortunately, according to Bailey, that isn't likely. "More than half of
Americans die in an institution, either a hospital or a nursing home and it appears that those numbers are rising. We need to realize people are going to
die in hospitals and we need to make it a better experience."
Bailey is quick to point out that this isn't necessarily a knock on hospital care. Hospitals, he says, are required to follow certain guidelines. "You
can't just leave medication out by the bedside in the hospital, and they have to worry about you falling out of that recliner," he says. "There have to be
controls, but there can be a balance between home care and what's feasible in the hospital. We only die once and there is only one opportunity to provide
excellent care to a patient in the last days of life."
When he came to the Birmingham VA, Dr. Bailey began to implement a comfort care order set for dying Veterans who were not able to be discharged to home or
community hospice programs. This involved first identifying Veterans who were likely to die in the hospital, and then communicating with patients and
families, and developing plans patterned on the best practices of home hospice care.
"It wasn't a perfect match," says Bailey. "It couldn't be. But we were able to make some significant changes. For example, we changed to sublingual
medicines that dissolved under the tongue." Bailey also simplified the process for providing pain medication to dying patients, decreasing the time it took
to provide relief to Veterans in pain.
He then teamed up with VA researcher Dr. Kathryn Burgio, a behavioral psychologist and also a professor at UAB. Together they studied the effects of
Bailey's comfort care project. By 2003 they were able to demonstrate what Bailey describes as "remarkable" changes in the process of care. Having
established the program at Birmingham, they then set out to test the effectiveness at other VA medical centers.
Changing hospital culture
The new sites—in Florida, Georgia, Mississippi, and South Carolina—were selected as much for their proximity to Birmingham as anything else. Bailey and his
team underwent routine site visits, spending several weeks at a time conducting educational visits with VA staff and then observing the results.
"The keys to excellent end-of-life care are recognizing the imminently dying patient, communicating the prognosis, identifying goals of care, and
anticipating and palliating symptoms," says Burgio. To do this across multiple sites, the team developed training and education materials and leveraged the
efforts of local champions to encourage culture change. The goal of the research, according to Burgio, was not just to change the practice and behavior of
individual providers, but also to change the culture of the hospital.
"It's difficult to do and sometimes even harder to accept, but when a medical provider is in lifesaver mode, they're not going to be focusing on the
symptoms." says Burgio. "The sooner you realize a patient is dying, the sooner you can focus on their comfort. That can mean medications for pain,
delirium, or other issues." It can also mean less use of intrusive techniques like nasogastric tubes or IV lines.
"We talked about things that weren't necessarily helpful, like feeding tubes and IVs," says Bailey. "We showed them that they didn't have to stop treatment
in order to model their care on what hospice does at home."
The researchers looked at 16 care variables, from the use of medication for pain or confusion to pastoral visits. They encouraged providers to allow
patients access to favorite food and drinks, tried to minimize invasive procedures, and allowed families to spend more time with loved ones.
Focus on family
Part of the focus is on the family members, says Burgio. "We want the bereaved family members to feel like everything they want has been done and that
their loved one had a comfortable death. The traumatic death of a family member can affect people for the rest of their lives and make it harder for them
to deal with their grief."
From improving access to pain medications to just letting patients sit up in a chair, BEACON led to improved rates for all 16 variables. "Every one of the
outcomes we measured improved after implementation of BEACON," says Burgio. Orders for pain medication went up 11 percent, while the use of feeding tubes
and IVs went down. Prescriptions for death rattle went up nearly 19 percent.
The researchers hope to expand their training program and eventually disseminate the best practices they have developed not only throughout VA, but
nationwide. "Only about 15 percent of Veterans who die each year do so at a VA facility," says Bailey. "We need to be able to improve end-of-life care not
just at VA facilities, but nationwide, and not just for Veterans, but for everyone."