The hospital
health team you didn’t know you had
by Lisa Haney, AARP
Bulletin, September 2018
En español | 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?
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.)
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