Palliative care — specialized help for someone living with a serious health condition — is often confused with hospice care (end-of-life care). However, people with lung cancer at any stage may seek palliative care to help ease their symptoms, deal with treatment side effects, and provide emotional support. In some studies, palliative care has been shown to extend the life span of those living with a serious illness. Whether you’ve just been diagnosed with lung cancer or have had it for a while, ask your provider for a referral to palliative care to improve your health and well-being.
One member of MyLungCancerTeam said, “Palliative care helped with my pain. And it helped when I needed to talk through the meds that were not working.” Another shared how their palliative care included pain relief. “I’m feeling great because I got two steroid shots in my back,” they wrote. “Now I can walk without pain.”
As you can see, receiving palliative care doesn’t mean you’ve run out of treatment options or that you’re incapable of managing your lung cancer yourself. It’s simply a potential management tool — and one you can use before starting lung cancer treatments, while undergoing them, or afterward.
In the early stages of lung cancer, palliative care can help you come to terms with your diagnosis and prevent complication risk factors, like weight loss. In late-stage lung cancer, palliative care services can help you stay at home (rather than at some sort of care facility). These services also can help you transition to hospice, if that’s needed.
Here are some details you should know about the different types of palliative care services available throughout your lung cancer journey.
Palliative care is custom assistance for people living with serious health conditions. Palliative care aims to improve the effectiveness of your treatments and to help you feel your best. In contrast, hospice care begins when a person stops their curative treatment and prepares for the end of their life.
Some palliative care costs are covered by health insurance, while others are not. Services may be provided in several settings — your home, an outpatient facility, an inpatient hospital, a long-term care facility, or your cancer center. If you’re a U.S. veteran, you may have access to low-cost (or even free) palliative care through the U.S. Department of Veterans Affairs. Talk to your oncologist and health insurance carrier to learn more about your options for palliative care.
Palliative care teams are teams of specialists who work together to address your concerns and help you understand your lung cancer treatment options. Your team can include specialists such as social workers, nurses, registered dietitians, physical therapists, and mental health providers.
Examples of the types of palliative care that may be helpful for people with lung cancer include:
One member of MyLungCancerTeam shared how meeting with a nutritionist helped them after chemo. “I had a great dietitian at my oncologist’s office,” the member wrote. “They helped me with high-calorie shakes and a list of spices to flavor food. I had no weight loss.”
It’s not uncommon for lung cancer treatments to make swallowing difficult. One member of MyLungCancerTeam described the support they received to address that problem. “I have swallowing issues,” they wrote. “I had to learn to tilt my head forward, especially with liquids, to prevent aspirating them. If you tilt your head forward when you swallow, it helps. I’ve also had Botox shots, which took away the problem. I first got them to help my voice. The fringe benefit of the shots was they cured the swallowing issue.”
Palliative care specialists can also advocate for you if you run into roadblocks with your pain management. “My oncologist is so focused on cancer, he leaves all other medical decisions up to me,” one member commented. “I have to contact specialists in other fields for pain, anxiety, and other issues.”
Another wrote, “From my experience, you have to be proactive. Learn as much as you can and expect your oncologist to be responsive to your needs, whether it is pain, anxiety, or depression. If your oncologist won’t treat you holistically, then ask them to make appointments for you with the appropriate physician. Mine does, and yours should. If you try to make appointments with other doctors yourself, it takes forever to get in.”
For some people, having a health condition like lung cancer sparks the desire to explore spirituality or religion as a source of support. Or perhaps their interest stems from wanting a deeper understanding of life. Depending on your personal needs and beliefs, chaplains and other religious leaders can be included on your palliative care team.
A lung cancer diagnosis doesn’t just affect the person with the condition. Often, your loved ones and caregivers need supportive care and resources as well. In addition to providing them with emotional support, palliative care can also help your family members with practical advice, like managing day-to-day responsibilities. Filling out complicated medical forms, dealing with insurance companies, and finding housing and transportation are all potential topics families can talk over with a palliative care team.
By involving a palliative care team early on, you’ll give yourself and your loved ones valuable support and easy access to assistance for making decisions if unexpected or sudden changes occur.
As part of palliative care, a social worker can help you manage various aspects of living with lung cancer. Those things might include help with:
On MyLungCancerTeam, the social network for people with lung cancer and their loved ones, more than 5,700 members come together to ask questions, give advice, and share their experiences with others who understand life with the condition.
Have you ever considered palliative care? What types of services are you interested in? If you already engage in palliative care, how has it benefited you? Share your story in the comments below, or start a conversation by posting on the Activities Page.