Marlin Shaw turned gingerly on her side to lessen the pain in her lower spine that even morphine couldn’t relieve. While the 43-year-old Fort Lauderdale mother of three waited in her hospital room to be wheeled to radiology, she worried about her daughters who haven’t accepted the end-stage cancer she was diagnosed with last year.
“They haven’t voiced it, but I know they’re scared,” said Shaw, a Medicaid patient at Broward Health who has braved aggressive therapies to buy more time with them. What keeps her going, she says, are the doctors, registered nurses and social workers of the hospital’s free palliative care program.
Unlike hospice, which cares for people in the last six months of life but often requires them to give up curative treatment for Medicare or Medicaid coverage, palliative care begins at the first diagnosis of a potentially life-threatening illness, helping people manage pain and symptoms so they can live normal lives outside hospitals, sometimes for years.
Programs like Broward’s aim to keep patients pain- and symptom-free as they go through chemotherapy and other demanding regimens. Broward Health, one of the nation’s largest public hospital systems, offers palliative services to all its patients, including those with low incomes like Shaw.
“We call it ‘walking alongside the patient,’ ” said Dr. Pamela Sutton, who launched the program in 1994. It was South Florida’s first.
Sutton, 65, started palliative care at Broward after working for the World Health Organization in countries where medications were lacking. “If you could get some morphine, it was actually possible to have a life,” she said.
Walking alongside Shaw, initially meant helping her transfer from a hospital that lacked palliative care.
For much of the past year, Sutton and Dr. Ravi Samlal, Broward Health’s eighth palliative care doctor in training, managed Shaw’s symptoms with opioid and non-opioid analgesics — painkillers — allowing her to remain at home.
When her cancer made the pain in her upper spine unbearable, the team asked Shaw’s oncologist about using radiation to shrink it. It worked: the pain lessened. With a walker and wheelchair to get around, she returned to her family.
Patients like Shaw, who are seriously ill, account for only 10 percent of the population but more than 50 percent of healthcare costs, according to the U.S. Dept. of Health and Human Services. Palliative care is less expensive than keeping them in hospitals. Since Sutton launched the practice at Broward Health, about half of all U.S. hospitals have added similar services.
University of Miami Hospital is one that recently started its own palliative care program. Dr. Tariq Mahmood, an assistant clinical professor at University of Miami Miller School of Medicine working with late-stage cancer patients, teaches his students not to be afraid of handling pain medications.
“I do not see a single patient who wants more opioids for the fun of it,” Mahmood said. “Unfortunately, traditional medical teaching is based on fear rather than what the patients need.”
The medical world’s worries about prescribing and dispensing opiates grew in 2011 as a state law put narcotics dispensers under scrutiny, requiring they register with the Florida Department of Health.
Although the law made an exception for hospices and their palliative care facilities, medications for legitimate pain sufferers are now harder to get.
Doctors like Sutton and Mahmood spend large chunks of phone time explaining why some patients need eight tablets instead of six.
“The hard thing for the DEA and Medicaid to understand is that some people require larger doses for the drugs to be effective. They think in numbers rather than milligrams,” Sutton said.
Medicaid and private insurance companies further limit opioid medications by covering less of their cost or excluding them, requiring the palliative care team to find substitutes.
When Shaw’s cancer recently advanced to the nerves in her lower spine, she needed more pain tablets than Medicaid allowed on an out-patient basis. Sutton had no choice but to admit her to the hospital.
“It costs our system way more to have her here than to allow her more tablets at home, but it was the only way she could get the medication she needs,” the doctor said.
Sutton, who called untreated cancer pain “a global scandal,” traveled in December to Pakistan, where cancer ward patients undergo treatments without access to morphine. She trained close to 100 doctors and nurses whose goal is to build Pakistan’s first palliative care hospital for end-stage cancer patients.
The Affordable Care Act, which is changing the healthcare landscape, has been mostly silent on palliative care coverge for patients, although it offers bonuses to hospitals to develop the programs.
Medicare only recognizes and compensates for palliative services if they’re delivered through a hospice program, which means the patient has to give up seeking a cure.
“Our end-of-life palliative care net isn’t big enough. How will government rethink and repackage it? We don’t know how yet,” Sutton said.
Shaw could have elected to end her chemo and radiation treatments and go into hospice for six months, but chose palliative care to have more time at home with her children.
“One year later, I’m here because of them,” she said.
This story was produced in partnership with Kaiser Health News, an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.