Barbara Blake's family knew her battle with ovarian cancer would be long and difficult. What they didn't know was that help was available for them.
From spiritual support from a chaplain to practical medical support with a team of specialists, the Blake family has a palliative care team with them every step of the way.
"I don't think I had ever heard of the term," said Lowell Blake, Barbara's husband. "But they have been wonderful. That's the truth."
"There is someone you can call when you have questions or need reassurance," said Kim Hannan, Blake's daughter. "You go out of here (the hospital) with a plan."
Few people have heard of palliative care including medical professionals, said Dr. Todd Coté, who leads the team. About 80 percent of patients and a similar number of doctors are unfamiliar with the concept, he said.
Palliative care uses the hospice model to support patients, providing a team that includes a doctor, nurse, social worker, chaplain and nurse practitioner. But unlike hospice, which cares for people as their lives are ending, palliative care is designed to help people cope with progressive, life-threatening illnesses.
"The first thing people have to hear is that this is not hospice care," said Coté.
Palliative care in Lexington is offered through a group that is an offshoot of Hospice of the Bluegrass but is an independent non-profit.
Unlike hospice, palliative care is available to people who still are seeking treatment for their diseases. People with illnesses such as cancer, heart failure, complications from diabetes or neurological problems are served by the program, Coté said, adding the focus is on maintaining the best possible quality of life.
Patients usually are referred by a doctor or social worker. The services are covered through insurance, but the program also depends on donations and grants to pay for those without coverage, Coté said.
Pain management is a key part of what the team does, but it also helps families cope with their new reality — a loved one is sick and might not get better. The first visit with the family is often the most difficult, Coté said. It's hard to discuss a serious illness and hard to know what to do next. And often family members might not agree what path treatment should take. They also might need help to plan such things as advanced directives, which outline the types of care the patient will receive as the disease progresses.
"Accepting the fact that a disease is not going to get better can be difficult for families to take," he said.
At Central Baptist Hospital, the team meets in a small room daily to discuss patients' progress and needs. The needs might be a change in medication or someone to talk to about their fears.
"The message is, 'I am here if you need me,'" said chaplain Lori Casey.
At Central Baptist, where the Blake family was getting care, a team visits a patient in a hospital room but also will help after the patient is dismissed from the hospital. The team also visits patients at University of Kentucky Chandler and St. Joseph hospitals and long-term care facilities.
The Palliative Care Center of the Bluegrass, a free-standing clinic, recently moved into new office space at 2407 Members Way in Lexington. The clinic is rare in the United States, Coté said, but patients may receive medical help there and avoid hospital visits.
"We want to make sure that the care they get in the hospital continues when they get home so symptoms can be controlled when possible," he said. "The team can be an advocate to help the family make the best decisions for care."
For example the team might help arrange for a patient with end-stage kidney disease to get in-home dialysis — something many families don't even know is available.
The palliative movement, Coté said, "is part of a changing culture of how people look at disease."
Kay Ross, Central Baptist's vice president for oncology and clinical services, agreed. Although the hospital has been supportive of palliative care for years, it is still a new concept to many families. But, she said, the expertise in managing symptoms and relieving pain that the palliative care team brings has shown consistent and impressive results.
Supporting and promoting palliative care is "one of the most important things" the hospital has done in recent years, she said, adding, "It's really focused on relieving suffering."
Traditional medical views enforce the idea "that a disease is to be conquered at all cost, but often the cost is quality of life," Coté said.
That quality of life meant the Blake family could have Barbara home for Christmas.