For physicians who went into medicine to save lives and heal people, one of the greatest frustrations they face is when they run out of options for a patient's cure. When everything that can be done has been done with medical and surgical interventions, it's difficult to see your patients still suffering and their families struggling to cope.
Fortunately, palliative care offers another pathway to help patients deal with life-threatening and life-altering conditions.
"It's about helping patients live a better quality of life when they are facing a serious illness," Rodney Tucker, MD, director of UAB's Center for Palliative and Supportive Care, said. "For 20 years our center has been building and refining a palliative care model that can help ease suffering and reduce the stress for both patients and the people who love them."
Public perception sometimes confuses palliative care with hospice, but its purpose is helping patients live better while undergoing treatment for serious illnesses like cancer and heart disease, or dealing with painful chronic neuromuscular illnesses, HIV and other long term conditions that may go on for years.
"Together, we work as a care team to aggressively manage distressing symptoms. That includes pain, anxiety, depression, as well as the stresses that can burden caregivers," Tucker said. "Doctors, nurses, counselors, social workers, physical and occupational therapists, and pastoral care providers come together to address the specific needs of each patient and the type of support that would be helpful to families. Caregivers also need care. Their role can be exhausting and can create both emotional and financial stress."
In a palliative care situation, the first step in helping is to understand the patient's goals for care and to make sure the family has been heard. It's a time when important decisions are made, and the patient may need information and the perspective of experience to make the best decision for her circumstance.
"Does the patient want to continue living in his home, and would house calls, a visiting nurse and other services like transportation and meal delivery be necessary to make that possible? Would moving to a retirement community or assisted living facility better fit the patient's needs and how will they get their home ready for sale and manage the financial arrangements to make the transition? When is a nursing home necessary, and how do you know when it's time to consider hospice care? Simply understanding the different levels of care can be difficult. It helps to have someone with experience who you can call on for answers," Tucker said.
Since its inception, the UAB Palliative and Supportive Care center has achieved remarkable results in improving and expanding its care model to help with issues ranging from helping patients with transportation to their appointments to using the arts to improve their quality of life.
However, access to palliative care for Alabama as a whole is an issue that has been in the news. The state recently scored a D on an access report.
"Part of this was the math and how the scoring was calculated," Tucker said. "Alabama has quite a few small hospitals, under 50 beds, that aren't large enough to offer a palliative care program. But it is true that there is a real problem in access to palliative care, especially in rural counties. In light of this, we're working with county nurses in health departments using telemedicine to bring palliative care to patients."
Tucker and the center also advocate for legislation to expand education, training and research to make palliative care more widely available.
"A bill for creating centers of excellence for training and research in palliative care has passed the House of Representatives and is now in a Senate committee with bipartisan support," Tucker said. "We hope to see passage of that bill soon."
The center is also gearing up to begin a new training program for physicians to assist them in communicating with patients who are experiencing serious health challenges.
"In these conversations, there are three essential questions doctors need to ask," Tucker said. "What matters most, what gives you strength, and who speaks for you?"
