Roddy Tempest’s world changed dramatically after he was diagnosed with an aggressive form of cancer in fall 2010.
A lifestyle that once focused on running a successful small business in Chapel Hill and helping his wife raise their two young children became a day-to-day race between medical offices and procedures designed to treat his rare type of prostate cancer, which quickly spread into his liver. The treatments to prolong his life also brought a cascade of side effects, including nausea, hair loss and pain, and major disruptions in work and family routines.
“It seems barbaric at times,” said Tempest, 62, describing the chemotherapy “cocktails” that leave him weak and nauseated. “It’s brutal emotionally, and physically dehumanizing.”
Such collateral damage often goes along with cancer and other disease treatments, yet even seasoned physicians can be at a loss for how to help ease patients’ suffering. That’s why many hospitals are adding specialists in palliative care, whose primary focus is relieving the pain, stress and side effects of serious illnesses.
Palliative care was recently designated a speciality by the American Board of Medical Specialties. Studies show it increases patient satisfaction and trims medical costs, said Amy Abernathy, assistant professor of medicine at Duke University.
While considered an outgrowth of the field of hospice, palliative care is not limited to patients who are dying. It can be introduced soon after diagnoses, allowing decisions about medical care and quality of life to go hand in hand, Abernathy said.
“One of the really important characteristics of palliative care is that you don’t have to reject curative care,” Abernathy said. “It just puts a special focus on your health care to help fortify quality of life.”
Duke University Medical Center has offered palliative services to hospital patients for several years, and last August opened a separate center for patients being treated on an out-patient basis.
James A. Tulsky, chief of Duke’s palliative care program, said the services are more “high touch” than high tech, yet have been shown to help keep people out of the hospital and give them more time at home with their families.
Tempest, an out-patient at Duke, said palliative care specialist Arif Kamal has helped him control his day-to-day levels of pain, establish a more predictable treatment regimen, and address issues of chronic fatigue. The palliative care team also has counselors available to assist his wife, Connie, and their two young children.
“Anytime I want, I can email any of them and talk with them,” Connie Tempest said of the palliative care team at Duke. “It’s reassuring to know that.”
Kamal said palliative caregivers tailor their services to each patient’s needs.
“If someone has inadequately controlled symptoms, such as pain, fatigue, lack of appetite, that’s a good place to start,” Kamal said. “But we also go into advanced-care planning, power of attorney and other issues that might arise if the patients gets sick enough to be in the ICU.”
Helping patients set realistic goals for their lives as they navigate through a serious illness can be another important part of the program, along with addressing the patient’s emotional and spiritual needs.
“We might ask this: When you think about the future, what worries you? What do you hope for the most?” Kamal said. “Those questions often are the start of a productive conversation.”
One patient may hope to see his son graduate from high school, while another may want to get her pain under control well enough to take a long-desired vacation.
Along with adding palliative specialists to treatment teams, many medical schools now have programs to help all doctors and nurses learn more about palliative care techniques, Abernathy said.
“What we are really asking is how we make sure to align a person’s care with what they really want,” Abernathy said. “This requires a conversation and, for many doctors, learning how to have these conversations.”
A longer life
Tempest emphasized that signing up for palliative care does not mean his cancer fight is over – far from it.
“I intend to defeat this cancer, get it into remission,” he said.
But he’s also realistic about end-of-life decisions. When the time comes, his family is sure to have a clear understanding of his desires and intentions.
“There are things you need to talk about and discuss,” Tempest said. “Are your personal affairs in order? Have you been to visit a funeral home?”
Kamal said studies are beginning to show that adding palliative care services may actually extend the lives of most patients, at least by a few months.
“We’re still trying to figure out why that is, but I’d say if patients feel supported in taking steps to improve their quality of life and to prevent complications like falls and uncontrolled pain, they will stay stronger longer,” he said.
“It gives them peace of mind to know someone is keeping an eye on quality-of-life issues.”