When Nancy Stordahl’s mother was hospitalized in 2008 for her rapidly progressing metastatic breast cancer, a palliative care team stopped by the room one day to talk about her mother’s needs. But Stordahl wasn’t interested in what they had to say. In fact, they were the last people she wanted to see.
“My mind immediately jumped to hospice care — this must be the end,” the writer and breast cancer survivor from Menomonie, Wisconsin, wrote in a 2014 blog post. “My next leap was, ‘Get out!’ What I actually did say to them I have no idea. But I do remember sitting there stewing.”
It’s a common misconception, according to experts at Fred Hutchinson Cancer Research Center. Palliative care may even be the most misunderstood phrase in cancer care. Half of patients don’t know what it is; the other half think it means they’re dying and anyone who mentions it has given up on them.
Sometimes referred to as comfort or supportive care, palliative care can definitely ease suffering in late-stage cancer patients entering hospice or approaching end of life. But it’s also a powerful tool for patients dealing with pain or treatment side effects anywhere along the cancer continuum, from early stagers grappling with chemo-induced nausea to metastatic patients learning to live with headaches, neuropathy and constant bone pain from their ongoing therapy.
And research shows palliative care can do much more: it can cut back on emergency room visits; curb anxiety and depression; improve the ability to cope with disease for both patients and caregivers, and even help those who are in treatment to live longer.
Unfortunately, the word "palliative" has a stigma, said Dr. Cara McDermott, an affiliate researcher with the Hutchinson Institute for Cancer Outcomes Research, or HICOR, and a senior fellow at the University of Washington School of Medicine’s Cambia Palliative Care Center of Excellence.
“People think it means ‘I’m dying, my trajectory is not good,’ but that’s not the case,” she said. “Palliative care is really about symptom management and improving quality of life. It’s to palliate symptoms, to palliate suffering, whether that suffering is physical, emotional, spiritual or financial. It’s about focusing on you and your family and the best way for you to navigate your illness.”
Much like a concierge, a palliative care specialist is a connector. They talk with patients, assess their needs, then connect them with experts who can help manage all manner of symptoms, quality-of-life issues and more. Head and neck cancer patients who’ve undergone surgery and radiation can connect with providers who specialize in speech and swallowing therapy; breast cancer patients can tap experts in lymphedema management.
Physical therapists, occupational therapists, massage therapists, nutritionists, nurses, pain specialists, psychologists, social workers and even chaplains can fall within the palliative care domain.
It's always been about giving patients “an additional layer of support,” said Dr. Elizabeth Loggers, a Hutch clinical researcher and medical director for Supportive and Palliative Care Services at the Hutch’s clinical care partner, Seattle Cancer Care Alliance.
“If you’re having symptoms, if you have questions or doubts about your treatment plan, if you want assistance with coping, with improving your quality of life, palliative care is designed for that,” Loggers said. “The service focuses on symptom management — from the cancer and from the treatment. If you think of the definition that way, it makes sense that it should have always been applied throughout the cancer continuum without focusing just on end-of-life care.”
But misunderstandings still abound.
A study Loggers and Fred Hutch clinical researcher Dr. Stephanie Lee conducted in 2015 on the benefits of palliative care for hematopoietic transplant patients failed to recruit a single participant until they swapped out the phrase “palliative care” for the less contentious “supportive care.”
And it’s not just patients who are confused.
A 2013 New England Journal of Medicine article by a handful of palliative care experts said the phrase had a huge “identity problem.”
According to their research, 70 percent of Americans don’t know what it is and most health care professionals believe it to be “synonymous with end-of-life care.”
Instead, they argue, palliative care is appropriate “at any age and at any stage in a serious illness.” It’s also a good way to break down the siloes that can exist in a patient’s medical care.
“Palliative care is a great way to improve care coordination and care delivery so everybody is on the same page,” said UW’s McDermott. “So we all know that these are the patient’s goals of their care — these are the symptoms they are experiencing, these might be some of the barriers they’re facing in terms of having that care plan, that goal, lived out."
McDermott calls it a more “holistic way of looking at care,” since it addresses physical symptoms and side effects like nausea, neuropathy and fatigue as well as spiritual and emotional issues like fear, anxiety, depression and loss of faith. Palliative care also covers social support, asking key questions about patients’ goals of care, their caregivers and their home environment.
“It’s not enough to send somebody home after chemo,” McDermott said. “They may need a caregiver to help them take their medications so they don’t develop chemo-induced nausea and vomiting. This isn’t just about end of life. It’s really about improving quality of life during your diagnosis, during treatment and during the continuation of your illness, whether that is in death or continuing on into survivorship.”
The National Cancer Institute offers an excellent fact sheet on the subject and the American Society of Clinical Oncology has published several posts about the increasing evidence for offering palliative care to the newly diagnosed. Federal legislation is also in the works via the Palliative Care and Hospice Education and Training Act (PCHETA), a bill designed to increase patient and provider education and awareness as well as improve access and training. This type of outreach does work, research shows. A recent study by the American Psychological Association found that educating patients about palliative care helped dispel some of the “fear and misconceptions” that have traditionally kept patients from signing up for the service.
Loggers said people may be slowly starting to understand that palliative care is for all patients, not just those who are dying.
“More and more, we’re receiving patients in the early process of their cancer,” she said. “They’re self-referring to our program saying, ‘I know you exist. I know you’re beneficial. I want your involvement in my care right now.’ They want to be more proactive, even before they have problems. That’s a wonderful change.”
Kathi Kolb, 63, is breast cancer survivor who lives in southern Rhode Island; she’s also been a physical therapist for 23 years and works regularly with palliative care teams to help patients with cancer and other serious health issues.
“The first mistake everyone makes is thinking that palliative care is the same as hospice care,” she said. “It is not. Both palliative care and hospice care have a PR problem or a semantics problem.”
In a nutshell, Kolb said, palliative care is given to help people “get over the hump” when dealing with a serious disease like cancer. It can be short- or long-term, she said, and it can stop and start again, depending on what’s needed.
Palliative home care, she said, is particularly helpful, whether for early- or late-stage patients. Nurses can monitor patients’ medications, pain levels and vital signs; physical therapists can help with pain control as well as mobility, balance and overall functioning; and occupational therapists can help patients take care of their personal needs as well as chores like cooking, dressing and cleaning up.
If ordered by a doctor, she said, these types of palliative care services are usually covered by insurance. (Medicare also now reimburses for palliative consults and advanced care planning.)
But doctors don’t always think to prescribe this type of care. As both a patient and a health care professional, Kolb believes there’s much room for improvement.
“I don’t think any of my doctors ever asked me about who was looking after me or helping me at home or even if I needed help at home,” she said. “There is a lot of education that needs to happen, with doctors and with patients.”
Stordahl, who originally resisted a palliative team’s visit to her mother, now wishes it would have been offered sooner.
“Palliative care is definitely something my mother should have received months before it was brought up as an option,” she said. “In hindsight, I regret we didn’t seek this out as she suffered with intense nausea, pain and other issues. At the time, I didn’t know about it or wrongly assumed it was synonymous with hospice care. It’s hard to ask for something when you don’t know it exists or are unsure of what it is.”
Had she known about it, Stordahl said she also might have used it during her own treatment.
“Every cancer patient should be made aware that palliative care is an option should the need arise,” she said. “I’m not sure if I would have specifically asked for it, but it sure would have been nice to know this kind of support was available to help manage unpleasant symptoms of cancer treatment.”
Loggers and McDermott both acknowledge the need for more randomized clinical trials showing the benefit of palliative care in early-stage patients. But even with “limited” evidence, they believe it’s clear all cancer patients can benefit.
“Right now, ASCO recommends that it’s offered to all advanced cancer patients,” McDermott said. “But we’re finding there’s still great benefit to palliative care being offered to people diagnosed with early-stage cancer and people undergoing curative treatment. It’s still in the nascent stages, but eventually it would be great to see palliative care integrated into the mainstream of cancer care, whether you’re diagnosed with stage 1A or stage 4.”
Until then, the two researchers will continue to conduct studies and raise awareness about the many benefits of this service, a good thing for both patients and practitioners.
“We want to make sure patients are aware of us and know they can self-refer at any time,” said Loggers. “There really isn’t a bad time to get palliative care. It’s never too early and it’s never too late.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.