Palliative Care Explained

EVERY DAY and often twice a day starting in August 2013, Alice Lawrence turned on a CD player in her New York City apartment and heard a soothing voice that led her in mindfulness meditation. Her goal in listening was to sweep away negative thoughts cluttering her mind ever since she learned she had locally advanced throat cancer in November 2012.

“There is nothing to do now but this,” the voice intoned. “Thinking only about relaxation, right now. If other thoughts arise, simply notice them and then begin thinking about relaxing your body and your mind.”

Lawrence received the meditation disc from a palliative care physician at Mount Sinai Hospital in New York City. A second CD from the same doctor taught Lawrence breathing exercises to control anxiety when radiation treatments made it hard to swallow while eating. Lawrence’s oropharyngeal cancer is currently in remission, and at age 73, the grandmother of six is a true believer in palliative care, despite never having heard the term until she was diagnosed with cancer.

“I didn’t know that you could get this kind of care,” says Lawrence, who also received palliative aid for vomiting and shortness of breath from chemotherapy. “They took care of me so that I didn’t have to fight both the cancer and my own self.”

Lawrence wasn’t alone in not knowing about palliative care. Seventy percent of Americans are unfamiliar with the concept, according to a 2011 survey from the Center to Advance Palliative Care at the Icahn School of Medicine at Mount Sinai. Many patients who think they understand palliative care wrongly equate it to end-of-life hospice care, a misconception also held by some doctors. But there is no mistaking palliative care’s growing appeal: Nearly 1,700 U.S. hospitals, roughly two-thirds of hospitals with 50 or more beds, offered palliative care as of 2011, up from about 650 hospitals in 2000.

Originating from the Latin word pallium, meaning “a cloak,” palliative care offers relief from the symptoms and stresses of cancer. It’s not a replacement for therapies like chemotherapy, radiation or surgery that treat the illness. Instead, it’s a companion therapy.

For someone with a serious condition that affects quality of life, “if you want the best care possible and you’re getting cancer care without palliative care, then you’re not getting the best care,” says Diane Meier, a geriatrician and palliative care specialist who directs the Center to Advance Palliative Care.

A Wide Range of Services

Palliative care covers a lot of ground. For cancer patients, it’s most widely used for management of pain, nausea and other cancer-related symptoms and treatment side effects. But palliative care services also can help with decision making for complex medical problems and offer support for the emotional, social and spiritual distress felt by patients and their families. Hospice care also provides these services, but the key difference is that hospice usually begins once life-extending efforts end. Palliative care isn’t about creating the best quality of life for what little time is left. It’s about getting patients through treatment so they can get on with life.

Palliative care ideally starts at diagnosis or in the early stages of treatment, depending on the needs of the patient and family. As recently as 15 years ago, it was rare to find specialists who focused on a patient’s physical and emotional suffering throughout the cancer experience, regardless of the prognosis. Now, palliative care is so widespread and valued that services are increasingly offered in settings outside the hospital, including outpatient clinics, doctors’ offices, nursing homes and even in patients’ living rooms.

But despite palliative care programs becoming so prevalent, many patients who need this help still aren’t getting it, according to a 2013 cancer report from the Institute of Medicine, a part of the National Academy of Sciences. The report found that many oncologists either don’t consider palliative care an important part of cancer care or don’t know how to make a referral to a palliative care specialist. Others might lack the skills to manage the vast and often complex problems cancer patients face.

Thomas Smith helped write the Institute of Medicine report. Smith is a medical oncologist trained in palliative medicine and he directs the palliative care program at Johns Hopkins Medicine and at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore. But Smith is hardly critical of the kinds of doctors highlighted in the report—he confesses to occasionally relying on more skilled palliative care colleagues to get his patients’ complicated symptoms under control.

“Most of us oncologists didn’t sign up to be pain doctors—we signed up to treat a disease and to make it go away if we could,” Smith says. Oncologists do the best they can to relieve symptoms, but Smith says it takes a different set of skills to diagnose and treat agonizing problems like depression, chronic fatigue, nerve damage or pain. “A good palliative care person is a doctor’s and a patient’s best friend.”

Oncologists still remain the primary doctors for cancer patients receiving palliative care. But the second layer of support that such care provides can sometimes feel like a third, fourth and fifth layer. Many programs are extensive, employing a team of doctors, nurses, social workers, massage therapists, pharmacists and others to help cancer patients both inside and outside the hospital.

A Seat at the Table

The palliative care boom is nothing short of impressive for what is a relatively young medical discipline. It wasn’t until 2006 that the American Board of Medical Specialties made hospice and palliative medicine its own branch of medicine, just like hematology or nephrology. Today, most insurance plans cover some or all palliative care as they would more traditional medical services.

In a survey of U.S. cancer centers reported in the March 17, 2010, Journal of the American Medical Association, nearly every NCI-designated cancer center participating in the survey had a palliative care program, along with close to 80 percent of other U.S. cancer centers surveyed. The tally is likely to be even higher today. Provision of palliative care services, either on-site or by referral, became mandatory in 2012 at the more than 1,500 hospitals, cancer centers and cancer programs accredited by the American College of Surgeons Commission on Cancer, a consortium of professional organizations that sets standards for quality cancer care. Also in 2012, the American Society of Clinical Oncology (ASCO), a prominent professional association, recommended that palliative care be considered early in treatment simultaneously with life-extending care for anyone diagnosed with metastatic cancer or experiencing many cancer symptoms and treatment side effects.

Hollye Jacobs didn’t want to wait for side effects to pile up when, at age 39, she was diagnosed with stage IIB breast cancer in 2010. That’s because, as a palliative care nurse, Jacobs knew she would need the same care she gave patients to deal with the physical and emotional effects of her own course of treatment—a double mastectomy, chemotherapy and radiation.

Some oncologists who met with Jacobs disagreed with her—three of them, in fact. All three told Jacobs she didn’t need palliative care, which both surprised and frustrated the Santa Barbara, Calif., resident. “When I interviewed the fourth oncologist, before I could even bring it up, he told me he refers all his new patients for a palliative care consultation” at the time of diagnosis, says Jacobs, now 43 and the author of a new breast cancer book, The Silver Lining. “I hired him on the spot.”

Jacobs says she mapped out a wellness program with her palliative care team before treatment so she would be prepared when side effects inevitably developed. Excruciating pain after surgery surfaced first. That was followed by constipation, nausea, fatigue and loss of appetite. Medication helped alleviate some side effects, and a dietitian offered eating help. Jacobs also embraced acupuncture, meditation and yoga.

“I was so comforted to know that when I had pain and other side effects, I could call palliative care and I was going to be taken care of,” Jacobs says.

Adding Life to Days

Meier, of the Center to Advance Palliative Care, says patients and caregivers intuitively understand that people with cancer do better when they feel better. Doctors, meanwhile, have found support in the data that document palliative care’s long list of benefits: relief from symptoms, better quality of life, brighter moods, greater satisfaction with care, fewer emergency room visits, and reduced burden on caregivers.

“If that was a pill, I’d be rich,” Meier says of palliative care. “But it’s not a pill. It’s a team that is much harder to market than something that can be bottled.”

Palliative care gained momentum after a study that looked at its benefits in 151 lung cancer patients appeared in the Aug. 19, 2010, issue of the New England Journal of Medicine. Among the findings were that when palliative care was integrated early into standard cancer therapy for people diagnosed with metastatic lung cancer, patients not only had better quality of life and lower rates of depression, but they also lived nearly three months longer than patients receiving standard cancer therapy alone.

“It sounds funny now, but people were worried patients receiving palliative care would have a survival detriment, that maybe they would be less likely to receive high-quality cancer treatment,” says medical oncologist Jennifer Temel, lead author of the study and clinical director of thoracic oncology at Massachusetts General Hospital in Boston, which offers palliative care both in the hospital and through an outpatient clinic.

Temel is conducting a larger follow-up study to further investigate palliative care’s impact on patients diagnosed with advanced lung and other cancers. Caregivers also are included in the phase III study, which compares standard cancer treatment offering palliative care upon request by the patient or the patient’s oncologist with standard cancer care offering regularly scheduled palliative care sessions starting soon after diagnosis.

Should palliative care end up showing a significant survival benefit, it will simply be a bonus, says Jamie Von Roenn, a medical oncologist and palliative care physician who pioneered efforts to integrate palliative care into routine oncology care. “If it adds days to life, that’s great. But it for sure adds life to days,” says Von Roenn, who is ASCO’s senior director of education, science and professional development.

Von Roenn is developing a new online curriculum to train ASCO’s oncology fellows in palliative care, and ASCO recently announced it will co-host the first Palliative Care in Oncology Symposium in October. “Palliative care can’t always come from specialists because we’ll never have enough palliative care physicians to do that,” she says. Currently, there are only about 4,400 hospice and palliative care physicians in the U.S. to serve the millions of Americans with cancer, heart disease, Alzheimer’s and other serious illnesses. Rather, Von Roenn says, every oncologist should have the skills to manage many of the challenges patients and families face.

Patients should ask for a referral for palliative care if symptoms and side effects are not well-controlled, or if they’re not getting honest and open information about their prognosis and what to expect from treatment, Von Roenn says. At Mount Sinai, where Lawrence was treated, patients with late stage disease or uncontrolled symptoms and side effects are now automatically seen by the palliative care team.

As for Lawrence, she still pulls out the CDs for meditation and breathing exercises and presses the play button every now and then. “I don’t listen to them every day anymore because I’m better at this,” she says. “I’m not an ace at it, but I’m learning.”

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