Palliative Care Targets Quality of Life
Palliative care makes it possible to treat the symptoms of serious illness without giving up quality of life.
In October 2010, Amy Berman of Brooklyn, N.Y., was diagnosed with stage 4 terminal inflammatory breast cancer. It’s a rare form of the disease, often caught in advanced stages as there is no lump to signal a warning. The median survival time is less than two years, according to the American Cancer Society. A world-renowned specialist told Berman she needed aggressive chemotherapy, a mastectomy and radiation.
Berman sought a second opinion from an oncologist who worked as part of a team of doctors, nurses, social workers, chaplains and others trained in palliative care. She agreed that the cancer was terminal and asked Berman about her goals for treating and living with cancer. “I want to feel as well as possible for as long as possible,” she told him. At that, her team ditched the aggressive approach, instead prescribing a single nightly pill that works to depress the hormone that feeds the cancer and an occasional Tylenol and anti-constipation medicine. A year ago, she had a single dose of outpatient radiation when excruciating back pain flared. “It turned off the pain like a light switch,” says Berman, who was back at work the next day as senior program officer at The John A. Hartford Foundation.
Berman’s cancer continues to spread, but at a very slow rate. “I haven’t been hospitalized in the last five and a half years,” Berman says. “I do well, I feel fine, I do fun things, and I still work full-time.”
Fifteen years ago, palliative care—specialized medical care for people living with serious illness—was considered niche. Today it’s mainstream, with 72% of the nation’s large and medium-size hospitals offering palliative care. It focuses on providing relief from the symptomsand stress of a serious illness, with the goal being to improve quality of life for both the patient and his or her family. Care is provided by a team of specially trained providers and others who work together with a patient, her family and other doctors to achieve the patient’s desired goals.
“Palliative care is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment,” says Dr. Diane Meier, director of the Center to Advance Palliative Care and vicechair for public policy and a professor of geriatrics and palliative medicine at New York City’s Icahn School of Medicine. The care team focuses on improving patient health care quality by relieving physical and emotional suffering; strengthening patient-family-doctor communication and decision-making; and ensuring well-coordinated care across health care settings, with both curative care and palliative care providers.
One of the biggest myths about palliative care is that it is only for dying people. “That’s not true,” says Judith Skretny, director of palliative care for the National Hospice and Palliative Care Organization. Whereas hospice care is only prescribed for those who have been deemed by two physicians to have no more than six months to live, palliative care is available to those with chronic conditions—not necessarily terminal illnesses— from cancer to congestive heart failure.
Another myth, says Skretny, is the idea that “when you receive palliative care, you can’t receive curative care.” To qualify for Medicare or commercial insurance benefits, hospice care requires a decision to receive only palliative-focused hospice care. Standard, curative medical treatment must stop. But palliative care, says Meier, “is not either/or like hospice care; it’s both/and.”
“If you get palliative care, you live longer,” says Meier. Studies have shown the benefits for patients and families when palliative care is introduced as part of routine cancer care. These include reduced pain and symptoms, better family outcomes (survivors do better in bereavement and report less depression), reduced hospital costs and readmissions, and enhanced survival.
A palliative-care team works with a patient and family members to find out what’s most important. “People say different things,” says Meier. A patient may need help at home, for example, or transportation. A care plan is designed to support patient and family. That could mean setting up home-based care, arranging food delivery or providing respite care to a caregiver.
For Berman’s goal of feeling well for as long as possible, her care team arranged a less aggressive treatment regimen than many oncologists would prescribe and helped her complete advance medical directives. Her team is available to respond to any medical concerns, which have included severe flulike symptoms after a monthly infusion of medicine to keep her bones strong.
What You Need to Know
Because palliative care still is relatively new in our medical system, most doctors have not been trained in the approach. Although the majority of hospitals with 50-plus beds have palliative-care teams, the care may not extend after discharge. Medicare pays for inpatientpalliative services, but it is not a benefit in the same way hospice care is. Doctors and advance practice nurses can bill Medicare Part B for outpatient palliative care services, but others on the team cannot. That has limited its growth in the outpatient arena. But community-based palliative care is growing, thanks to the Affordable Care Act’s expansion of alternative provider payment models and bolstering Medicare Advantage health plans.
“Palliative care can be given to people anywhere,” says Skretny, including in nursing homes, at rehab facilities, at home and in community clinics. Patient advocates stress that patients and their families should ask their health care providers about palliative care.
Berman is glad she did. “I’m not at the end of my life,” says Berman, who is planning to vacation this summer in South Africa. She reckons she has saved as much as $1 million by using palliative care. Most of the savings go to her insurer—by eliminating hundreds of thousands of dollars for rounds of chemo and radiation treatments, surgery, rehab, and medications. But Berman appreciates her personal savings from reduced coinsurance, deductibles and other out-of-pocket costs. “I pay $5 a month for a pill I take each night,” she says. “Palliative care is the best friend of the seriously ill.”
For more information, visit the Center to Advance Palliative Care’s website, check out the National Hospice and Palliative Care Organization’s provider finder, or ask any hospice about nonhospice palliative care services.