Life with lung disease can be an unpredictable journey. By adding palliative care, patients gain not just extra help with symptoms, but an extra sense of control.
That’s usually how palliative care expert Greg Rachu, MD, starts the conversation. Many of his patients at Rhode Island Hospital, a HopeHealth partner organization, have chronic obstructive pulmonary disease (COPD). Others have interstitial lung disease or cystic fibrosis, or are dealing with the aftermath of lung cancer.
“You’re my boss,” he’ll say by way of introduction. “I can explain what this all means medically. But my job is to make sure you stay in the driver’s seat, as much as you want to, for all your care decisions.”
If you or a loved one is living with a chronic progressive lung disease, here’s how palliative care can help.
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Special care for lung disease symptoms
Chronic lung diseases like COPD can flare up easily, bringing on breathlessness and anxiety along with other symptoms, from pain to nausea. At advanced stages, these symptoms can be debilitating, and they’re complicated to treat. Often, the medications used to treat them carry their own side effects.
Palliative care experts have special training in all the above. They can often recommend and prescribe medications, equipment and alternative therapies that add to the care that a pulmonologist or primary care provider is already providing.
“If a patient is really struggling with symptoms, palliative care can offer guidance,” says Dr. Rachu.
Help with other care and overall quality of life
Palliative care experts always act as part of your larger team, reinforcing the care you receive from your lung doctor and other specialists. In fact, they tend to play an important role in making sure all your providers are on the same page.
That can help with slowing the progression of your disease, as well as supporting your day-to-day quality of life.
For example, for COPD and other lung diseases, a palliative care expert can make sure you understand how certain treatments will affect your ability to do certain activities. They focus on expert communication to ensure you understand options like different types of oxygen, rehabilitative options and ventilation support. They may offer additional resources like community services and support groups.
> Related: 7 common myths about palliative care
Defining what matters most to you
For chronic lung disease, as with many serious illnesses, treatment decisions often come down to quality of life. A palliative care team can help you define what that means to you.
That’s because, in addition to physical health, palliative care also focuses on your emotional, social and spiritual well-being.
“We talk about hopes and wishes, God and religion, wanting to spend more time with family,” says Dr. Rachu. He’ll ask his patients about the activities they miss most, and just as importantly, the things that still bring them joy. He helps them consider what matters most to them, and how to honor that within the realities of their diagnosis.
> Related: What palliative care means for people living with heart failure
An advocate for the care you do and don’t want
One of the most powerful benefits of palliative care is having someone to help you think ahead. That can mean deciding what care you do and don’t want in the future, so important decisions don’t fall to other family members in a moment of crisis. It often includes planning for end-of-life care.
These conversations can be difficult, but they’re crucial. Dr. Rachu helps patient understand the most likely treatment options for their particular situation, like medication or ventilator support or, in some cases, surgery. He helps them sort out what those options look like in the future — for example, whether they would be able to return home or would have to remain in a hospital.
With this information, patients can define for themselves what would be acceptable or unacceptable.
“My job is to advocate for whatever a patient wants,” says Dr. Rachu, “and make sure there’s good communication with family members and the rest of the patient’s team so everyone is aware of those decisions.”
Support for caregivers and loved ones
Unlike most health specialties, palliative care doesn’t just focus on the person with the diagnosis. It also focuses on the well-being of their loved ones. Palliative care teams often include social workers and chaplains, who offer emotional and spiritual support for both patients and families.
And overall, palliative care is driven by a compassionate, family-centered philosophy.
“I call family members and loved ones my ‘bedside patients,’” says Dr. Rachu. “If a patient’s son or daughter is sitting by the bedside and seeing that we respect their dad, he wasn’t suffering, he was listened to and able to live as much of his life as he could on his own terms — that’s part of taking care of that family member too.”
> Related: “I feel the same way”: The power of caregiver support groups
What is the role of palliative care in a lung disease like COPD?
If you or a loved one is living with a chronic lung disease, you may be able to add palliative care on top of your other care. It’s an extra layer of support — both for your quality of life today, and for the road ahead.
“I talk with patients about fixing what we can fix, but also taking a couple big steps back to talk about the bridges we’re going to have to cross with this diagnosis,” says Dr. Rachu. “They guide me on what’s most important to them. Then it’s my job to see if we can’t get that done.”