Palliative Care Myths That Patients and Caregivers Need to Know
For one thing, it doesn’t mean a patient is at the end of their life.
If you or a loved one has been diagnosed with a serious illness, you know that coping with the condition and life changes is difficult enough. When you add on trying to understand the diagnosis and treatment options—and filtering the advice and noise from friends, family, or the internet—it can put you in information overload.
Getting accurate information is important; it’s the starting point to getting the right treatment and care for you or your loved one.
When it comes to palliative care, people may have preconceived notions about what it *actually* is, which may deter them from utilizing it. Palliative care can help a patient get better treatment for their condition, as well as improve their overall quality of life.
Here, Nathan E. Goldstein, MD, a palliative care specialist at Mount Sinai in New York City, clears the air about common palliative care myths, so you can feel confident in the information you’re getting about your care.
MYTH: Hospice and palliative care are the same.
There’s a common misconception that patients who receive palliative care are at the end of their lives. “That’s absolutely not true,” says Dr. Goldstein.
Palliative care is a group of specialized medical services that help patients with serious, yet curable or treatable, conditions (such as heart failure, cancer, or Parkinson’s disease) get relief from their symptoms. Palliative care can help patients improve their quality of life and enhance the effectiveness of their treatment. Learn more about palliative care here.
“Palliative care is for any age at any stage—and people who get palliative care will live years and years, and many people who get palliative care will actually be cured,” says Dr. Goldstein.
Hospice is also a specialized type of medical care, but unlike palliative care, it’s offered to an individual who is in the late stages of a terminal illness. Hospice often begins when treatments are felt to be no longer helpful, and the patient and care team decide to focus on quality of life.
Learn more about the difference between palliative care and hospice here.
MYTH: Palliative care is not a necessary part of treatment.
Palliative care is a very important part of treatment. It can help the patient feel better physically, but also relieve many of the stresses illnesses can bring up.
If a patient feels better physically and emotionally, it may help them have a better treatment outcome. “There are many studies coming out now that show that palliative care actually improves outcomes for patients with serious illness, including some that show that palliative care makes people live longer, as compared to those patients with the same illness who don’t get palliative care,” says Dr. Goldstein.
MYTH: Palliative care is only for those with debilitating symptoms.
Palliative care often starts when a patient is diagnosed—sometimes when they have no symptoms at all. Because of this, patients may not feel that they need it.
“When patients say, ‘I’m too well for palliative care,’ what we say is the goal of palliative care is to keep you as well as you are, and to make sure you’re continuing to do as well as you are,” says Dr. Goldstein.
MYTH: Palliative care is only for pain management.
While treating physical side effects, such as pain, trouble sleeping, shortness of breath, loss of appetite, or feeling sick to the stomach, are a large part of palliative care—it’s only a piece of the puzzle. “We do a lot more in palliative care than just treat symptoms,” says Dr. Goldstein.
Palliative care can help with the emotional, social, practical, and spiritual issues that illnesses can bring up as well. This includes the stresses that can lead to fear, anxiety, hopelessness, or depression; practical issues like financial problems and transportation; and spiritual guidance.
MYTH: Only people with cancer should have palliative care.
“Palliative care is for patients with any illness, at any stage in their illness,” says Dr. Goldstein. Palliative care may not be appropriate, however, for patients with chronic conditions that aren’t serious, says Dr. Goldstein. “For example, patients with chronic back pain, while they’re certainly suffering with pain, may not be appropriate for palliative care.”
MYTH: Palliative care only benefits patients.
“Palliative care is just as important for the caregiver of the patient as it is for the patient,” says Dr. Goldstein. “The caregiver is a key element of the team caring for the patient.”
Learn more about how to get palliative care for you and your loved one.
Nathan E. Goldstein, MD, is a professor of geriatrics and palliative medicine at the Mount Sinai Hospital in New York City.
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I think patients often have
concerns about palliative care.
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The first one is they think it means that
they are at the end of their lives, and
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that is absolutely not true.
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Palliative care is care for
people with serious illness,
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the goal which is to improve the quality
of life for patients and their families.
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Palliative care is delivered by a team
of professionals, including a doctor,
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a nurse, and a social worker, who work
with the patient's other clinicians
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to help create a treatment plan that will
improve symptoms and quality of life.
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One myth is that palliative care and
hospice are the same thing,
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and they're very different.
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Palliative care is for patients who
are undergoing curative treatment or
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treatments aimed at prolonging life.
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Hospice is for patients who are at the
very end of life, with a short period of
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time to live, and whose goal is to only
focus on comfort and control of symptoms.
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It's a myth that palliative care
isn't an important part of treatment.
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In fact, there are many studies coming
out now that show that palliative care
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actually improves outcomes for
patients with serious illness.
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Including some that even
show that palliative care
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makes people live longer as compared
to those patients with the same illness
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who don't get palliative care.
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So when patients say to me,
I'm too well for palliative care.
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What we say is, actually the goal of
palliative care is to keep you as well as
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you are and to make sure you're
continuing to do as well as you are.
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Sometimes patients come to me with
the myth that palliative care
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is only to treat pain.
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And what I explain to them is that we do
a lot more in palliative care than just
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treat symptoms.
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For example,
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we help patients understand what's
going on with their medical illness.
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That is, we translate doctor
lingo back into English.
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And then we also work to help patients
make the best medical decisions.
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We also treat a wide range
of psychological symptoms.
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We work a lot with patients who
have anxiety, or depression, or
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just general problems coping with their
serious illness, which is pretty normal.
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It's a myth that palliative care is
only for people who have cancer.
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Palliative care is for patients with any
illness, at any stage in their illness.
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However, there are a few kinds of
patients that may not be appropriate for
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palliative care.
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For example,
patients with chronic back pain.
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While they're certainly suffering,
are probably not appropriate for
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palliative care if they don't have
a chronic or serious illness.
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Palliative care is just as important for
the caregiver of the patient as it is for
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the patient.
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While we do obviously work
on a patient's symptoms and
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the other things bothering the patient,
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the caregiver is a key element of
the team caring for the patient.
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Palliative care is available at almost
all medical centers now, in the hospital,
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in the outpatient, or in your doctor's
office, and sometimes even in the home.
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The main doctor who's treating your
primary illness, so for example,
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your heart doctor if you have
advanced heart disease, or
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your cancer doctor if you have cancer, is
the one who refers you to palliative care.
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What’s New In Palliative Care? UptoDate. (Accessed on November 29, 2018 at https://www.uptodate.com/contents/whats-new-in-palliative-care)
What Are Palliative Care and Hospice Care? National Institute on Aging. (Accessed on November 29, 2018 at 2018 at https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care)
Primary palliative care. UpToDate. (Accessed on November 29, 2018 at https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care)
Pain and Palliative Care. Clinical Center: America’s Research Hospital. (Accessed on November 29, 2018 at https://clinicalcenter.nih.gov/palliativecare/truths_myths.html)