Palliative Care Explained
Palliative care can be offered to cancer patients at any point in their illness, beginning with the initial diagnosis. New research points to its effectiveness.
By Melissa Weber
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.