If you have pulmonary fibrosis, you might have heard the term palliative care. But you may not be sure exactly what it involves. Some people confuse palliative care with hospice or assume it is only for people who are at the end of their life. Understanding what palliative means and how it can play a role in treating pulmonary fibrosis can help you to do everything possible to take control of your health.
Understanding Palliative Care
Palliative care involves specialized treatment focused on improving comfort and quality of life. It is for people with various types of serious diseases including pulmonary fibrosis. Care is provided by an interdisciplinary team including doctors, nurses and social workers who have training in palliative care. Palliative care is often offered for inpatients, and in-home palliative care services are also available in some areas.
If you receive palliative care, you don’t stop getting care from your pulmonologist or primary care physician. Your palliative care team are additional healthcare providers who work in partnership with your current doctors providing an extra layer of support.
Typically, your doctor focuses on treating your PF and improving your overall health. Symptom management is also often part of your treatment plan. Palliative care concentrates on preventing suffering, helping you cope with the stress of pulmonary fibrosis and improving your quality of life.
Your palliative care specialists often take a holistic approach to treating someone, which means your team considers your emotional well-being along with your physical comfort. Watch a video about the importance of emotional well-being here.
It’s important to understand that palliative care is not the same thing as hospice. Hospice care is intended for people who are terminally ill. Improving quality of life and keeping patients comfortable are also the goals of hospice.
Hospice care is always palliative care. But palliative care is an option at any point, not just at the end of life. Palliative care can start at any time, even when a person is newly diagnosed. You can also have palliative care at the same time you are receiving other medical care focused on prolonging life.
How Would Palliative Care Help with Pulmonary Fibrosis?
Even if you have a doctor you trust, palliative care may still be helpful. Having a chronic illness, such as pulmonary fibrosis, can take its toll both emotionally and physically on you and your family. Your palliative care team may offer treatments, tips and support that ease suffering and improve how well you function daily. For example, a palliative care specialist may prescribe medication to decrease anxiety or offer techniques to relax and cope with stress more efficiently.
In some cases, palliative care specialists may help you understand complex medical information and help you match treatment choices to your personal goals. Keep in mind: every patient is different. Palliative care specialists offer customized treatment to meet the needs of each patient so that they can live their lives to the fullest.
You may feel you don’t need palliative care specialists right now. Maybe all your medical needs are being met with your current team of doctors. Remember, palliative care specialists can be added at any point in your illness. If something changes, you can have a palliative care consult in the future.
Content written by Dr. Jeremy Feldman, an expert in Idiopathic Pulmonary Fibrosis, with contributions by MaryAnn DePietro, B.S. CRT, a licensed respiratory therapist.