Edmon de Haro/AARP
David Griffiths couldn’t breathe.
The 69-year-old cinematographer had been losing his voice for months. Then, one night last summer, he woke up gasping for breath.
“It was frightening,” says Griffiths. “I walked around all night because I was afraid to go back to sleep.” The next day at Mount Sinai Hospital in Manhattan, an ENT (ear, nose and throat doctor) probed Griffiths’ throat and discovered a huge white tumor wrapped around his larynx — crushing his windpipe, his esophagus and his vocal cords. Doctors rushed Griffiths into surgery to place a breathing tube in his throat and, over the next few days, inserted a feeding tube in his stomach and a port in his shoulder for delivering medication. Griffiths would need five kinds of chemotherapy, plus radiation, to shrink the tumor and kill the cancer. He’d spend the next six months traveling to and from the hospital several times a week for outpatient treatment and IV rehydration. He was unable to work, or even ride the subway, because he couldn’t risk catching an infection. The unrelenting pain in his neck made it nearly impossible to sleep.
But unlike most people who enter the hospital with a severe illness, Griffiths had a secret source of strength: the Mount Sinai palliative care team. Comprising a specially trained doctor, nurses and other practitioners, the team helped Griffiths deal with the pain, stress and logistics of his treatment. In addition to making sure he was on the right dosage of morphine, his palliative care team helped him get rides to and from the hospital, provided a nutritionist, helped coordinate his care with all of his other doctors and answered any questions he had in between visits. “They were fantastic,” Griffiths says. “They kept a close eye on me.”
Griffiths’ experience may sound exceptional, but it needn’t be. Palliative care specialists are available at most major hospitals, and they can ease your pain, reduce your stress and perhaps even improve your chance of survival. Their services are typically covered by private insurance, Medicare or Medicaid. So why haven’t you heard of them?
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Health care’s best-kept secret
Most people hear the words “palliative care” and think “hospice,” but they are different types of care. Hospice is reserved for when curative treatments have been exhausted and patients have less than six months to live. Palliative care, on the other hand, is a team-based medical specialty focused on providing relief from the symptoms and stress of a serious illness — care that you can get at any age and at any stage of your illness.
“Why should you have to be dying to have somebody focus on your quality of life?” asks Sean Morrison, M.D., director of the National Palliative Care Research Center. That’s a relatively new point of view in the American medical system and one of the biggest (and least talked about) changes in health care. Palliative care developed in the U.S. in the 1990s and only became a formal medical subspecialty in 2008. Today, three-quarters of U.S. hospitals with more than 50 beds have a palliative care program, according to the Center to Advance Palliative Care (CAPC). Ninety percent of hospitals with 300 beds or more offer it.
And these specialists can have an enormous impact on the quality of your life and your outcomes. When adult patients with blood cancers saw palliative care clinicians at least twice a week during bone marrow transplant procedures, they experienced better symptom control during and after their hospitalization, according to a 2016 study in the medical journal JAMA. A 2010 New England Journal of Medicine study showed that lung cancer patients receiving early palliative care had less depression and better quality of life — and lived nearly three months longer. In fact, the American Society of Clinical Oncology now recommends that all patients diagnosed with advanced cancer receive palliative care within two months of their diagnosis.
“People who get palliative care feel better; avoid preventable 911 calls, ER visits and hospitalizations; and stay independent and in better control at home,” says CAPC director Diane Meier, professor of geriatrics and palliative medicine at Mount Sinai. “They have someone who can help if a crisis arises in the middle of the night.”
Morrison says a palliative care provider acts like “a quarterback,” working closely with the other team members — which may include a nurse, a chaplain and a social worker—as well as the patient’s other doctors. Communication is critical because one of the major issues people living with serious illness face is the fragmentation of our health care system. “People don’t talk to each other — a particular specialist is only interested in his or her particular organ system,” Morrison says. “My role is to make communication easier by coordinating care.”
“Let your specialist focus on treating your disease, prolonging your life, ideally curing you,” says Meier. “Let your palliative care team focus on everything else.”
How to get the care you need
Approximately 6 million people in the United States have a need for palliative care, according to the CAPC. But most patients don’t know about their options.
“The grave majority who could benefit from care are not getting it,” says Meier. One reason is workforce shortages. “There just isn’t enough staff to address the widespread suffering of seriously ill people in hospitals,” she says, “not to mention the much larger numbers of similar people who are not hospitalized.”
Another major impediment is a pervasive misunderstanding among doctors of what palliative care is. “Physicians are a major barrier to access,” Meier says. “They often don’t refer, and when patients ask them about it, they say, ‘Oh, you don’t need that. You’re not dying.’ ”
If you feel that a palliative care specialist could help with managing your pain and stress, you’ll probably need to ask for it. Morrison recommends you start by saying, “I know I’m not dying, but I’d like the added layer of support that palliative care can provide. Can you refer me to a palliative care specialist?” If your doctor isn’t helpful, use the Find a Provider tool at getpalliativecare.org to search for a specialist in your area. You can look for care that is provided at a hospital, a nursing home or a doctor’s office, or even at home. You may need to be your own advocate and push to get the palliative care that you need or ask your health care proxy or another loved one to help you get it.
Four things to tell your doctor
- What “quality of life” means to you. For some, it may mean maximizing time with loved ones. Others may prioritize relief from pain and other symptoms. Or it may mean remaining independent and making your own decisions for care and where you want to be treated (home versus hospital).
- Your religious, cultural or personal beliefs. Share anything that might be important to consider in your care and treatment decisions.
- Which treatments you may or may not want. Remember, you have the right to refuse any treatment you don’t want.
- Whether you have a living will or health care proxy. Give your doctor a copy. (If you don’t have these yet, consider setting them up.)