Palliative care expected to become more common
NEW YORK — Last year, when an oncologist advised that Betty Chin might benefit from palliative care, her son Kevin balked.
Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buy her more time.
Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.
Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Kevin Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.
“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”
In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.
They have become converts. “It was quite a relief,” Kevin Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”
Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home-care schedules and insurance. Kevin Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with ques- tions at any hour.
Challenges remain — Betty Chin still isn’t eating much — but her son now wishes the family agreed to palliative care earlier.
Perhaps it’s not surprising that many f amilies know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.
But most ailing patients aren’t in hospitals and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.
Meier expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.
Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.
Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.
It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.
Those who received early palliative care were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.
Other studies found similar benefits. Compared with control groups, palliative-care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.
And they do better if they seek palliative care early. A University of California, San Francisco, study found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.