Study shows patients who start palliative care early live longer

Cancer strategy: Easing the burden

By Stephen Smith
Boston Globe Staff / August 19, 2010

By the time doctors diagnosed Jim Windhorst with lung cancer, the disease was already on the march, gnawing through vertebrae and ribs.

He got the standard treatments, chemotherapy and radiation, but was also offered something less conventional by a nurse-practitioner at Massachusetts General Hospital.

“She said, ‘Here’s a prescription for meditation,’ ’’ Windhorst recalled.

The nurse works in the hospital’s palliative care unit, where specialists endeavor to provide comfort and ease pain. Many patients — and even some doctors — believe their services are reserved for those near death.

Researchers from the Boston hospital are reporting today, however, that patients with advanced lung cancer who started palliative care soon after diagnosis not only suffered less, they lived almost three months longer than patients not provided these services. That longer survival came even though the palliative care patients were less inclined to opt for aggressive end-of-life care.

The survival benefit surprised and heartened authors of the study and doctors elsewhere, though they cautioned that the findings need to be replicated at other hospitals.

“I see the suffering day in and day out,’’ said Dr. Jennifer Temel, a lung cancer specialist at Mass. General and lead author of the study. “I never understood why we only asked palliative care clinicians to see patients toward the end of their life. It’s too late then.’’

The findings, guaranteed to reach a large audience through publication in The New England Journal of Medicine, have the potential to reshape cancer treatment and dispel myths about the best time to initiate palliative care, specialists said.

“If people can see I’m not walking in with a black coat and a scythe, that I’m really just there to explore how they are, then they will see we’re not a threat,’’ said Connie Dahlin, the nurse-practitioner who suggested meditation for Windhorst and who took part in the study.

“We’re not saying, ‘You’re going to die.’ We’re saying, ‘You have this serious diagnosis, and we’re going to be there with you the whole way.’ ’’

Palliative care specialists lament that their image as the medical world’s grim reaper deprives patients and their families of care and support that can ease the burden of serious illnesses that exact a steep physical, psychological, and social toll.

All too often, they said, patients and doctors outside their field equate palliative medicine with hospice care, even though hospice is the refuge for people who have stopped aggressive treatment and whose death is imminent.

Palliative care, in contrast, is available at any juncture during a life-threatening illness and, at its core, is designed to make living with a serious ailment more comfortable, incorporating everything from exercise to counseling to pain medication.

In the Mass. General study, 151 patients with lung cancer that had spread were randomly assigned to get either standard treatment plus palliative care or standard care alone.Continued...

The palliative care patients met with a specialist at least once a month. They discussed physical symptoms, and the consequences of having lung cancer for work, family, and spirituality. And they had one of the most freighted conversations of all: When the drugs stop working and the cancer is advancing, what should happen then?

“Patients will tell the palliative care doctors and nurses things they won’t tell their oncologists,’’ said Dr. Vicki Jackson, acting chief of palliative care at Mass. General.

“They can feel so connected with their oncologist that if they have a symptom, they will feel they’ve failed their oncologist,’’ she said.

The researchers discovered that patients in palliative care scored significantly higher on widely accepted measures of quality of life. These patients were also half as likely to report being depressed.

And while 54 percent of patients receiving only standard treatment sought aggressive end-of-life care — including chemotherapy when there was little hope it would prove beneficial — only 33 percent of the palliative care patients did, a finding that could have financial implications.

Strikingly, despite choosing fewer heroic measures in their waning days, the palliative care patients lived, on average, 11.6 months compared with the 8.9 month survival rate for the other patients.

Dr. Mark Kris, chief of thoracic oncology at Memorial Sloan-Kettering Cancer Center in New York, said the study suggests that palliative care, which is usually covered by insurers, may save money in the long run because patients appear less insistent about sometimes fruitless and expensive end-of-life measures.

“But it’s more about doing the right thing,’’ he said. “I’m just happy people lived better and lived longer. That’s why we get up in the morning.’’

Still, misperceptions remain widespread in medical suites. Dr. Andrew Putnam, a Washington palliative care specialist, recently got a call from a surgeon who had referred a patient in excruciating pain after radiation.

“He said, ‘The patient’s not near the end, so I feel that I’m sending him to you too early,’ ’’ said Putnam, of Georgetown University’s Lombardi Comprehensive Cancer Center. “I said, ‘No, this is exactly the person you should send.’ ’’

For Jim Windhorst, wrenching back pain and a cough in early 2009 heralded something he could scarcely imagine. High-tech snapshots showed three vertebrae and two ribs had eroded because of spreading cancer.

Within weeks, he underwent radiation and chemo. When he was approached about participating in the study, the father of three had never heard of palliative care.

“I’m not a touchy-feely type,’’ said Windhorst, a still-strapping 45-year-old with a full head of red hair and a beard flecked with gray. “I said: ‘I’m more interested in strategies. Help me develop strategies.’ ’’

So Dahlin, a founder of Mass. General’s palliative care service, encouraged him to seek physical therapy to boost his stamina and clear his lungs. She also endorsed acupuncture and classes that encourage serenity.

One of the hardest moments arrived earlier this year, when Dahlin helped Windhorst recognize that continuing to work in the financial services sector was further imperiling his health.

Often, Windhorst’s wife, Terry, accompanies him on his visits. They weigh the present — avoiding pneumonia and other complications — and the future, when Terry will be alone with the children.

“One of my buddies, an old Boston Irish guy, was just like: ‘Jimmy, you were dealt a bad hand. How you going to deal with it?’ ’’ Windhorst told Dahlin during a recent stop by her office.

“You’ve done pretty good,’’ Dahlin told him. “Make sure you keep those cards.’’