Patients Turn to Palliative Care for Relief from Serious Illness

Patients Turn to Palliative Care for Relief from Serious Illness

Help With Big Decisions; Manage Pain and Treatment Side Effects

By Laura Landro in the Wall Street Journal

Patients with serious illnesses need medical treatments to survive. But they are increasingly taking advantage of the specialty known as palliative care, which offers day-to-day relief from symptoms as well as stress and lifestyle management.

Though often regarded as only for older patients with terminal illness before they enter hospice programs at the end of life, palliative care is increasingly being offered to patients of any age with a range of chronic illnesses such as cancer, multiple sclerosis and Parkinson’s. It may be provided at the same time as curative medical regimens to help patients tolerate side effects of disease and treatment, and carry on with everyday life.

“Most people who need palliative care are in fact not dying, but have one or more chronic diseases which they may live with for many years,” says Diane E. Meier, director of the nonprofit Center to Advance Palliative Care and a professor at the Icahn School of Medicine at Mount Sinai in New York. For a 24-year-old with acute leukemia, there is a 70% chance of survival, Dr. Meier says, “but the treatment is physically devastating, and that suffering is remediable with palliative care.”

The number of palliative-care programs has more than tripled over the past decade. Now, two-thirds of hospitals with 50 beds or more and 80% of those with 250 beds or more have programs, according to Dr. Meier’s center, which helps consumers locate programs. Many hospitals are creating outpatient clinics to help patients with preventable crises, such as severe shortness of breath, remain at home and avoid trips to the ER and hospitalizations. Studies show not only can palliative care improve quality of life but also it can actually extend life for some patients.

Presbyterian Healthcare Services in Albuquerque, N.M., which includes eight hospitals, a health plan, and a physician group, launched palliative-care outpatient clinics in 2012 and now offers them at five primary-care offices and two oncology offices. “We have cancer patients who are not certain this will be the end of their life, and may be stable, so we walk the walk with them for a long time” says Dr. Nancy Guinn, medical director of Presbyterian Healthcare at Home.

In addition to pain management and emotional support, palliative care teams offer help navigating the medical system, making decisions about care and understanding what to expect from ailments as they progress. The programs use a number of screening tools to determine what type of care, such as spiritual counseling, might help.

Dr. Beth Popp, who leads the palliative-care program at Maimonides Medical Center in Brooklyn, N.Y., says it is growing rapidly to meet demand, in part due to greater awareness among referring physicians and patients. It currently has three palliative-medicine physicians and is looking for a fourth, plus three nurse practitioners and a social worker. The team collaborates with other specialists and treats both in- and outpatients.

Amy Berman, senior program officer at the John A. Hartford Foundation, which focuses on health needs of older adults, entered the Maimonides program in 2010, after she was diagnosed at age 51 with advanced inflammatory breast cancer that had spread to her spine.

While there is no cure for her condition, Ms. Berman says palliative care has helped with pain and symptom management, making it possible for her to feel well enough to travel to Jordan and China since her diagnosis and vacation in Germany this month. Her oncologist handles routine pain management, but a palliative-care doctor evaluated extreme pain in her back from the spread of the cancer and temporarily provided intensive medication and a remedy for constipation the medication caused. To get the pain firmly under control, a radiation oncologist administered a cutting-edge technique of single-dose radiation therapy to the site.

“Palliative care has allowed me to be able to function, work, feel good and enjoy my life while I take treatment to try and hold back the cancer,” Ms. Berman says. The care gives “a good sense of where I am and where the disease is heading.”

More hospitals are adding palliative care clinics, reducing emergency room visits and hospitalizations. WSJ’s Laura Landro and Dr. Diane Meier discuss with Tanya Rivero. Photo: Getty

Valerie Wallace, 42, was diagnosed in November 2013 with advanced colorectal cancer that had spread to her liver. After surgery on her colon and chemotherapy at the University of Alabama Birmingham, doctors feared she was too weak to undergo a follow-up liver surgery. With a husband and three teenage children, she says, “I am too young and I have too much going on in my life and I’m not at a point where I’m going to give up.”

The palliative-care team at the hospital helped her manage pain with medication, and deal with other symptoms and complications. She hadn’t been eating well or exercising after her first surgery and an unrelated injury to her leg. She also received counseling on nutrition and exercise to help her regain strength, including sessions with a physical therapist to build muscle to get her in shape for another arduous procedure.

As a result, last summer she was able to have the liver surgery, followed by additional chemotherapy. She is scheduled for an MRI in January to see where things stand, and remains optimistic. “Palliative care got me through to the point where we could get back on track with my original treatment plan,” Ms. Wallace says.

Studies show palliative care leads to increased patient and provider satisfaction, equal or better symptom control, less anxiety and depression, less caregiver distress, and cost savings compared with standard care, according to a review published earlier this year in the Annual Review of Public Health 2014.

Thomas J. Smith, an oncologist who co-authored the review and is director of palliative medicine at Johns Hopkins Medicine in Baltimore, says programs can shift the burden from cancer specialists who don’t have time or skills to help patients beyond treating their disease. Palliative care helps increase patient satisfaction scores, which can boost payments to hospitals from Medicare, he adds, and can cut down on readmissions after discharge, for which hospitals can incur penalties.

In a pilot program for its palliative-care clinics in 2012, Presbyterian Healthcare in Albuquerque compared costs incurred by patients in the six months before the first visit to the six months after, finding that hospitalization costs dropped by 19%, use of outpatient hospital services such as CT scans and MRIs and labs went down by 44% and emergency room costs decreased by 79%.

Kate Johnson, the program’s social worker, says the team often helps family caregivers “so they are better able to deal with the reality of the situation.” Last summer, she helped Steve Ridlon, who says he hadn’t really heard of palliative care before, manage issues faced by his husband, Casey Scott, who had a progressive lung disease.

In addition to helping with physical therapy, home-nursing service and portable oxygen use, Ms. Johnson helped Mr. Ridlon understand how Mr. Scott’s disease reduced oxygen to his brain, affecting his ability to reason and follow his regimen.

Mr. Scott ultimately made the shift to hospice care and died in November. But for more than three months before that, says Mr. Ridlon, the palliative-care program “provided a great deal of help to me when the responsibility I had was overwhelming.”