Goals of Care: Taking Control in the Face of Pulmonary Fibrosis

Living with Pulmonary Fibrosis: Why Goals of Care Matter

A diagnosis of pulmonary fibrosis brings a flood of questions and emotions. Whether you’re newly diagnosed or have been living with PF for some time, you know this condition can be unpredictable. That’s why it’s so important to talk openly about your goals of care – a process that puts you at the center of medical decision-making.

What Are “Goals of Care”?

Goals of care are conversations that help align your treatment and support with what matters most to you. These discussions are not about “giving up.” They’re about:

• Understanding your illness
• Exploring your treatment options
• Clarifying your values
• Planning for both hope and uncertainty

When your care team knows your priorities, they can help you live as well and fully as possible—whether that means pursuing aggressive treatments, focusing on comfort, or something in between.

When Should You Talk About Goals of Care?

The answer is simple: the sooner, the better.

You don’t need to wait until you’re in the hospital or facing a health crisis. In fact, these conversations are often easier and more meaningful when you’re relatively stable. They should also be revisited as your health or perspective changes.

Some moments when it might be especially helpful to talk about goals of care:

• After a new diagnosis or change in disease progression
• When starting or stopping oxygen therapy
• If you’re considering a lung transplant
• Following a hospitalization or flare-up
• When you just want to make sure your voice is heard

What Might These Conversations Include?

• Your understanding of PF and what you expect moving forward
• Your personal values—what makes life meaningful for you?
• Preferences for treatment—are you open to mechanical ventilation? Are there treatments you want to avoid?
• Where you want to receive care—at home, in a hospital, with hospice, etc.
• Your support system—who should speak for you if you can’t speak for yourself?

Bringing in the Right People

Goals of care discussions work best when they include:

• You (the most important person in the room)
• Your family or loved ones
• Your pulmonary team (pulmonologist, respiratory therapist, etc.)
• A palliative care specialist, if available (they focus on quality of life and symptom management, not just end-of-life care)

A Word About Palliative Care

Palliative care is often misunderstood. It’s not the same as hospice, and it doesn’t mean you’re “at the end.” It’s about supporting you at any stage of serious illness—managing breathlessness, anxiety, fatigue, and helping with decision-making.

If you haven’t connected with a palliative care team yet, ask your doctor if it’s an option. Many people with PF say it changed their experience for the better.

You Deserve to Be Heard

Living with pulmonary fibrosis is hard enough. Don’t let uncertainty steal your peace of mind. Goals of care conversations can provide clarity, comfort, and confidence—for you and for those who care about you.

Start small. Talk with someone you trust. Bring it up at your next appointment. You don’t have to figure everything out today, but every step you take puts more control back in your hands.

You are not alone. And your voice matters.

Have you had a goals of care conversation? Share your experience in our next support group meetup, or ask questions any time in our online community forum here—your story may help someone else find their voice.