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.
At its most basic definition, 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.READ MORE
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,” Dr. Elizabeth Comen, a medical advisor to SurvivorNet and breast cancer oncologist at Memorial Sloan Kettering Cancer Center previously told us. “Palliative care teams can be introduced whether or not [a patient] has a curable disease.”
The Case for Early Palliative Care
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 early as the initial diagnosis.
A 2010 study published in the New England Journal of Medicine, for example, found that, in a clinical trial of patients with metastatic non-small cell lung cancer, the group who received palliative care soon after their diagnoses—integrated into their standard cancer treatment—ended up having a longer median survival time than those who only had standard cancer treatment.
Then 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.”
And beyond survival and quality-of-life improvements, data presented during this year’s ASCO Annual Meeting showed that early palliative care integration could actually save patients a significant financial cost, too.
Yet despite the well-documented benefits of early palliative care, results from a national survey published in the Journal of Pain and Symptom Management last year found that 70 percent of American adults have no knowledge of palliative care, and 40 percent of those who do have a knowledge of palliative care say they automatically think of death when they think of palliative care.
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 is going to make that goal tough to accomplish.
What’s in a Name?
We talk about the importance of word choices a lot here at SurvivorNet. And when it comes to palliative care, it turns out that word choice has a tangible impact on receiving beneficial symptom management.
We spoke with Dr. Ishwaria Subbiah, a medical oncologist and palliative care physician at the MD Anderson Cancer Center, and she shared a fascinating experiment from 2009 (published in 2011) that she’s still seeing the effects of today: 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.
Who Administers Palliative Care?
Because palliative care encompasses so many different types of treatment, both emotional and physical, it’s usually administered by a team of experts, not just one. Dr. Subbiah explained that the teams at MD Anderson’s Supportive Care Clinic include palliative care physicians, palliative care nurses, pharmacists, nurse practitioners, dieticians, physical therapists, occupational therapists, counselors, and psychologists, to name a few.
“Having these members of the team is essential to delivering whole-person care,” she said. “That’s fundamentally what supportive or palliative care is.”
But How Do These Specialists Know What I’m Experiencing and What I Need?
Unlike the tumor-directed aspect of your cancer treatment, where an oncologist can run tests and scans and biopsies on your cancer to determine what type of treatment to administer next, there’s no imaging test or biopsy that can measure stress and pain and emotion. That’s why communication is a fundamental part of palliative care.
In many ways, it’s up to you to be your own advocate in your palliative care. At your initial meeting with a specialist, you should be clear about what your goals are in your treatment, and really consider your personal values, as these can and will ultimately play into your treatment—both the cancer-directed kind and the palliative kind.
Dr. Amanika Kumar spoke with us about palliative care and ovarian cancer.
“If we don’t talk about palliative care upfront, then when we really need to talk about goals of care, we’ve missed this long opportunity to get to know our patients,” Dr. Amanika Kumar, a gynecologic oncologist at the Mayo Clinic, previously told SuvrivorNet, adding that oncologists need to encourage patients and their families to consider questions like, ‘What are the things I’m willing to undergo to treat this cancer?’ ‘What are the things I’m not willing to undergo?’ and ‘How do I use my values to guide the decisions about my treatment for my cancer?’
Patients Can Teach Their Doctors a Thing or Two
Although she’s seen other institutions taking a similar path to MD Anderson’s in terms of actively trying to shift the culture around palliative care and educate people about its benefits, Dr. Subbiah did tell us that there may be medical oncologists out there that still harbor the “end-of-life” misconceptions.
“A patient may find themselves feeling palliative care is appropriate,” she said, “But then they might hear their doctor say ‘Oh you don’t need palliative care—you’re not there yet,’ or something to that effect. And so the patient can advocate for themselves and say, ‘No. I’m not asking for end-of-life care, but I want my symptoms better managed by a dedicated team.’”
In that scenario—whether you’re early on in your cancer journey, further into treatment, or even entering survivorship—you may ultimately find that it’s up to you to educate your provider about what palliative care truly is: not end-of-life care, but rather whole-person, quality-of-life care.