Clearing Up Misconceptions About Palliative Care

Categories: Care, Community Engagement, and Featured.

Whether you’re just beginning your cancer journey or have been living with cancer for years, it’s important to get the facts straight about a frequently misunderstood aspect of your treatment: palliative care.

Often, when patients hear the term palliative care, a sense of panic sets in. They assume the worst: that their cancer is no longer treatable, and that their oncologists have decided to transition away from aggressively treating the cancer to providing peace and comfort during the final days. This couldn’t be further from the truth. In fact, you can (and should) absolutely receive palliative care at the same time as robust cancer-directed treatment. It’s really important to recognize that palliative care can be introduced really at any time of anyone’s cancer diagnosis, says Dr. Elizabeth Comen, a medical advisor to SurvivorNet.

What Is Palliative Care?

The National Cancer Institute (NCI) defines palliative care as “an approach to care that addresses the person as a whole, not just their disease.” It’s a type of care that’s meant to address the symptoms and side effects that your cancer or its treatment may cause, ranging from psychological experiences like stress and fear to physical experiences like pain and discomfort.

Palliative Care Is Not the Same As End-of-Life Care

Palliative care is not the same as end-of-life care. “It’s not the same thing as hospice. It’s really important to recognize that palliative care, whether provided by your oncologist or by a specialty palliative care team, is an important adjunct to your oncologic care,” says Dr. Lisa Diver, gynecologic oncologist at Stanford University. “It doesn’t mean that your doctor is going to stop treatment or even wants to talk about that, but simply that he or she thinks it’s important to support all aspects of your health. That could be pain control, [relief for] nausea or constipation, mental health care. All of these other symptoms that commonly arise and are intertwined inextricably with your cancer care.”

A Knowledge Gap

In recent years, a rich body of research has been published showing the benefits of beginning palliative care early on in the course of treatment—sometimes as soon as the initial diagnosis. In 2016, based on results from a total of nine randomized clinical trials, one quasi-experimental trial, and five secondary analyses, the American Society of Clinical Oncology (ASCO) issued a set of guidelines stating that “inpatients and outpatients with advanced cancer should receive dedicated palliative care services early in the disease course, concurrent with active treatment.”

Yet despite the well-documented benefits of early palliative care, results from a recent national survey published in the Journal of Pain and Symptom Management found that 70 percent of American adults have no knowledge of palliative care. Forty percent of those who have some knowledge say they automatically think of death when they hear the term.

What’s In a Name?

This widespread misconception is especially problematic considering that the purpose of palliative care is to improve your quality of life during treatment. Few would argue that associating it with death and giving up makes that goal tough to accomplish.

Dr. Ishwaria Subbiah, a medical oncologist and palliative care physician at the MD Anderson Cancer Center, shared a fascinating experiment from 2009 (published in 2011): rather than trying to eliminate the deeply ingrained end-of-life connotations of the term “palliative care,” Dr. Subbiah’s colleagues at MD Anderson decided to change the name altogether, rebranding their palliative care center as the “Supportive Care Clinic.”

“We found out that the name was a big barrier to referrals,” Dr. Subbiah said. “The name itself was a barrier to accessing our services.”

Within a year of changing the name, MD Anderson’s Supportive Care Clinic saw their referrals (that is, patients coming from their medical oncologists and tumor-directed cancer treatment to access their symptom management services) rise 41 percent. “And it has been consistently increasing in the double digits ever since,” Dr. Subbiah said.

Apart from the new name, though, and ramped-up outreach efforts to educate patients about what they offer, Dr. Subbiah said the Supportive Care Clinic is no different than it was when it carried the name Palliative Care. “It’s the same services by the same group of people with the same level of training and compassion,” she said.

As a cancer patient, “it’s important to fully understand and appreciate that palliative care can actually help you live better, and in some cases, live longer, when it’s involved earlier in your cancer-care course,” Dr. Diver says. “So, don’t be afraid when your doctor suggests it. Be open to talking about why palliative care is being suggested, and how it could help you.”

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