Mona Bratter had trouble breathing after surgery in 2023 to treat her small-cell lung cancer (SCLC). But when her oncologist suggested palliative care to help manage her discomfort, she was hesitant.
“I thought it was something only used at the end of life,” says Bratter, who lives in Charlotte, North Carolina. “My doctor explained it’s a form of treatment to help me live better.”
Over the next couple of years, Bratter used her treatment center’s palliative care frequently. She explored acupuncture to help manage side effects from chemotherapy and radiation. She did physical therapy to help improve her lung health.
She met with a psychologist to discuss depression related to her diagnosis and tried healing touch to see if it’d relieve her anxiety. “I thought it seemed a little ‘woo hoo,’ but I did feel better after the session,” she says.
Today, Bratter is glad she used palliative care. “I recommend it 100%. I wouldn’t be at the place I am now physically and mentally without it,” she says.
What Is Palliative Care?
It’s a special type of care that you may use when you have serious, chronic illnesses such as SCLC. While it traditionally has focused on symptom management and emotional support, its scope has broadened to include other therapies (such as music therapy) to improve a patient’s quality of life.
“It’s an extra layer of care on top of the support you already get from your cancer treatment team,” explains David Hui, MD, a professor of palliative, rehabilitation, and integrative medicine (PRIM) at the University of Texas MD Anderson Cancer Center in Houston, Texas.
Anyone with cancer can benefit from palliative care. But it seems particularly helpful in SCLC. “The disease can be so aggressive and make people so sick,” says Michael Grant, MD, a national medical spokesperson for the American Lung Association and a lung cancer specialist at the Yale School of Medicine in New Haven, Connecticut.
Research suggests palliative care may help you live longer, too. One study of people with advanced lung cancer found that those who got palliative care within a month to a year after their diagnosis had higher survival rates than those who didn’t.
The goal of palliative care is to improve your quality of life. It’s done in addition to — not instead of — your regular SCLC treatment.
You can start palliative care as early as your diagnosis. “You can meet with a palliative care team right away to address symptoms from your SCLC, such as shortness of breath and a cough,” Grant says.
Who’s on your palliative care team?
Initially, your lung cancer doctor will refer you to a palliative care specialist. That’s a health care professional whose focus is on treating symptoms of a disease and side effects from treatment. But like your cancer treatment team, you’ll likely have a whole palliative care SCLC team, which may include:
- Palliative care doctor
- Palliative care nurse
- Mental health counselor
- Social worker
- Nutritionist
- Spiritual advisor, such as a chaplain
- Art or music therapist
- Pharmacist
- Physical and occupational therapists
- Dietitian
Palliative care vs. hospice
Palliative care is often confused with hospice, but the two are very different. Palliative care can begin at diagnosis and continue alongside your treatment journey. Hospice begins when curative treatment stops and your doctor thinks you have less than six months to live.
It’s a good idea to start palliative care as early as possible. “When SCLC patients start treatment, they are often at the peak of their symptoms,” Grant explains. “Then you throw in chemotherapy, and the combination of the two makes them very sick initially. Palliative care can really help to minimize those symptoms so that you can safely and comfortably continue treatment.”
Benefits of Palliative Care in Lung Cancer Treatment
Palliative care helps patients with SCLC, no matter the stage of disease, Grant says. Here are some key ways it helps you.
Helps manage your symptoms
Donna Colman, a SCLC survivor, felt severe bone pain during SCLC treatment. “Before I started palliative care, the pain was so excruciating [that] I had times I wished I was dead,” she says.
Her palliative care team worked with her to find a safe medication option. “I was initially reluctant to go on opioids, but they explained that I was on such a low dose, the chances I’d get addicted to them were low,” she remembers. “But I don’t think I would’ve agreed to take them if they hadn’t taken the time to explain that to me.”
Bratter’s palliative care specialist referred her to a respiratory therapist, who taught her breathing techniques to better manage shortness of breath. She also tried acupuncture, which was also offered at her palliative care center, to treat nausea related to chemotherapy. “I didn’t find it that helpful, but I’m glad I had the option to try it,” she says.
Boosts your quality of life
Cancer patients who do palliative care report a better quality of life than people who don’t. They have less pain and less anxiety and depression.
“Palliative care provides support so patients can not only stay on and tolerate treatment but also continue daily activities as much as possible,” explains Sherri Cervantez, MD, an oncologist and palliative care specialist in San Antonio, Texas.
Mental health support. Mental health professionals, including spiritual counselors, can help you process an SCLC diagnosis. This is important for your emotional and physical health. One study found that people with lung cancer who were depressed had higher levels of inflammation in their bodies that may worsen their cancer.
Bratter began receiving counseling at her palliative care center when she finished her lung cancer treatment. “That was when everything really hit me, and I went through a range of emotions,” she says. “I’d spent so much time at medical appointments and therapies, it was like I didn’t even know what to do. I needed to speak to someone to help bring me back into a good place.”
A therapist or social worker can also teach you mind-body techniques such as deep breathing or guided imagery, which can help with anxiety, depression, fatigue, sleep problems, and pain in those getting palliative care.
Music therapy. This can be an important way to manage your mood and some other cancer-related symptoms. A trained music therapist uses various types and aspects of music to help you feel better. You may create or play a piece of music together, or you may listen to the therapist or someone else perform. Research shows music therapy can reduce cancer-related pain, fatigue, and anxiety. It can also boost your emotional well-being, physical comfort, and quality of life.
Caregiver and family support. Palliative care helps your loved ones, too. “We view patients and their families as a whole unit that we care for together,” Cervantez says. “We spend time with caregivers to make sure they have enough support, both for the patient and for themselves, at home.”
Other therapies. Palliative care may also include art therapy, pet therapy, massage therapy, acupuncture, and yoga. But your insurance may not cover them.
Reduces your treatment complications
Research shows that people with advanced cancer, including lung cancer, who receive palliative care are less likely to end up in the hospital from complications. There may be a few reasons why.
“Patients who do palliative care are often physically stronger, eat a healthier diet, and have an overall better mood, which means they are more able to take on the stress of cancer treatment,” Hui says.
They may also feel more comfortable bringing up cancer-related symptoms to their palliative care provider, to get earlier treatment, Cervantez says.
“Sometimes, patients don’t feel comfortable letting their oncologist know that their breathing is getting worse, when in reality, it’s due to a very treatable reason, like excess fluid building up in their lungs,” she says. “If it’s brought up in palliative care and addressed, we can often prevent bigger, more serious complications further down the road.”
Another way palliative care may help is by coordinating your care. “We’re in close communication with your other doctors to make sure we’re all working together for you,” Cervantez says.
For Bratter, consulting with a palliative care nutritionist was one of the most valuable parts of palliative care. “I knew it was important that I eat a lot of fruits and vegetables, but I had no idea I needed to increase my protein to allow my body to heal,” she says. Bratter’s blood sugar levels rose during chemotherapy as a side effect. Her nutritionist worked with her to manage her diet so that she didn’t develop type 2 diabetes.
Helps you set care goals
Palliative care can help you make clear goals to address what’s most important to you and your family. It’ll help you explore questions such as:
- What’s the level of side effects you’re comfortable with? (You may be OK with aggressive treatment that has severe side effects, as long as it extends your life. Or your daily energy levels may be more of a priority.)
- Are there specific personal activities important to continue, such as playing with your grandchildren or going on an extended trip?
- Are there obstacles to your care that need addressing, such as financial concerns or travel constraints?
- Do you have specific life goals you want to make sure you achieve?
Palliative Care Stigma
Even though palliative care has many benefits, many lung cancer patients don’t use it. One reason is that they don’t know about it. Less than half of lung cancer patients say they’ve been offered or even given information about palliative care by their health care team. “Oncologists might not always think it’s necessary or not be aware of their patients’ supportive care needs,” Hui says.
But some people with SCLC don’t want palliative care. “They associate it with hospice care and think it means they’re giving up on treatment,” Hui says.
When Colman started palliative care for her SCLC, she was already familiar with it. She’d done it years earlier, when she was diagnosed with breast cancer.
“When I first heard about it from my oncologist, I refused to do it because I thought it was hospice and meant I would die,” she says. “My doctor took the time to explain it’s for cancer patients at any stage of treatment, and it’d help manage symptoms enough that I could return to work.”
She had such a positive experience that she requested it when she had symptoms from SCLC treatment. “I tell all patients newly diagnosed with SCLC to ask for palliative care right away,” she stresses. “Get that initial consult appointment. You might not think you need it now, but you may later.”
Many cancer centers use the term supportive care instead of palliative care to make the concept more accessible. “We’ve seen a significant increase in referrals from oncologists since we’ve changed our name from palliative care to supportive care,” Hui says.
“Doctors tell me they feel better when they refer a patient earlier because they know they’re getting good care to help them manage pain, nausea, and fatigue.”
What to Expect
Your oncologist can recommend and refer you to palliative care. If they don’t mention it, it’s OK to bring it up. “Some doctors aren’t aware their patient needs it,” Cervantez says.
You usually receive palliative care in a hospital or at a medical center. You can also search the Center to Advance Palliative Care’s Provider Directory here.
At your first visit, it’s helpful to bring:
- A list of your symptoms and what makes them better or worse
- A list of current medications, including any over-the-counter drugs and supplements
- Any questions you have
- A family member or friend for an extra set of eyes and ears
Your palliative care provider will spend some time asking about your pain levels and other symptoms. But they’ll also ask you about your goals. “We want to focus on what’s important to you as a patient so we can make sure we meet your needs,” Cervantez says.
After your visit, they may refer you to other specialists, such as a psychiatrist, an integrative medicine doctor, or a pain medicine doctor. You and your family will also meet with a palliative care social worker to talk about stress, financial concerns, and ways to make sure you have enough emotional support.
Palliative care is usually covered by health insurance, including Medicare and Medicaid. You may still have to pay a co-pay or deductible. It may not cover all aspects of palliative care. “I found that some services my palliative care team offered, like acupuncture and massage therapy, weren’t covered by insurance, so I had to pay out of pocket,” Bratter says.
Along with exploring palliative care, don’t hesitate to let your health care team know if you have any pain or difficult side effects during SCLC treatment. “Oftentimes, people sweep it under the rug and minimize how they feel,” Colman says.
“The stronger you are, both physically and mentally, the better off you’ll be to fight your cancer. You don’t have a lot of control over your SCLC prognosis. But palliative care is one way to help you feel better and ensure you have some say over your life.”
