Planning for Life with Pulmonary Fibrosis

It can be difficult to know what life will be like after a pulmonary fibrosis (PF) diagnosis. Each person's experience is different. No one can predict your experience, but here are some things you might expect after a PF diagnosis:

• It is likely you will need oxygen therapy at some point. For example, you may start out needing oxygen only during exercise and then needing oxygen more often as the disease progresses. Supplemental oxygen can help you stay active and maintain a good quality of life.
• You will need to stay as active as possible. Many patients benefit from pulmonary rehabilitation. Ask your doctor for a referral to pulmonary rehab and about what kind of exercise you should be doing on your own.
• It may be recommended that you get on a lung transplant list. A lung transplant is not right for every PF patient but can be a life-changing experience for many. Ask your doctor if you should be added to a transplant list.
• No one can cope with a serious illness alone. You can expect to feel a variety of emotions and need support from family and friends. You should also consider talking to a mental health professional who can help you work through your emotions.
• You will need to plan for the future. A PF diagnosis can make patients and their caregivers think about difficult topics they may not have explored before. It is inevitable to think about death and what will happen in the future. No one can know exactly what will happen, but it is helpful to make plans for whenever that day comes.

Planning for the Future

Knowing how long someone will live with PF is difficult to determine. The doctor may be able to provide you with an estimate, based on data, but keep in mind that it is an educated guess. Every person is different and no one can be certain of what your individual experience will be.

Though it is not an easy topic to discuss, planning for end of life is essential for everyone. It is important to make your wishes known so you get the care you want when you need it. It will also relieve a burden from your loved ones knowing that your end-of-life planning is taken care of. When end-of-life decisions are made ahead of time, it is less stressful for everyone involved.

Where Do I Start?

• Use this life planning worksheet to organize your thoughts and guide your conversations early on in your journey. Don’t wait for the doctor to bring it up. It is a difficult topic for even doctors to discuss. The doctor does not want to offend you or make you feel hopeless. Bringing this up might be scary at first, but it helps to open the lines of communication early and throughout your treatment and care journey.
• Get your financial records in order and store them all in one secure place (include account numbers, investments, credit cards, loans, deeds and more).
• Write a will.
• Create an advance directive (also called a living will). An advance directive outlines your end-of-life medical care choices. See a sample advance directive form or download a state-specific form.
• Select a power of attorney. A power of attorney designates someone you know and trust to make healthcare and financial decisions for you if you are unable to do so yourself. They can be two different people or the same person.

A social worker or someone on your palliative care team can help you work through the paperwork and navigate end-of-life decision making. 

Learn more about palliative care by reading our Each Breath Blog and download the palliative care worksheet.

How Do I Know When It Is Time for Hospice?

Hospice care provides medical care, emotional support and spiritual resources for patients who are in the end stages of their illness and also offers support and resources for families or caregivers. Most hospice care is given at home, but it also can be given in the hospital or a hospice care facility. Hospice care is recommended when life expectancy is six months or less. To learn more about hospice care, talk with your doctor, call the National Hospice and Palliative Care Organization at 1-800-658-8898 or visit nhpco.org to find a hospice program in your community.

Palliative care is always part of hospice but palliative care can be given on its own, and not only at the end of life. It can help you cope with side effects and maintain a good quality of life, all throughout your illness.