We understand the hardships that often come with advanced pulmonary fibrosis. Breathing problems, coughing fits and fatigue are a heavy burden—for patients and their caregivers.
Families often share their need for a measure of hope when dealing with this complex disease. Not hope for a cure, but hope for relief and the best quality of life possible.
Hospice care covers a broad range of services, typically with no out-of-pocket expenses. The hospice circle of care includes:
- Medications and therapies to reduce shortness of breath, coughing, pain and other symptoms
- 24/7 access to hospice nurses
- Home medical equipment and personal care supplies
- Strategies to reduce unwanted emergency care
- Spiritual care tailored to your traditions and needs
- Hospice aides for personal care and light homemaking
- Education and support for family members
- Managing anxiety
- Short-term respite care (relief) for family caregivers
- Care at home, in nursing facilities or wherever someone calls home
- Volunteers for running errands or short breaks for caregivers
Making end-of-life decisions are especially challenging with pulmonary fibrosis because it doesn’t follow a typical path. Families sometimes hope for one more rebound or an eleventh-hour lung transplant. Important end-of-life decisions can be pushed down the road too far where patients lose the ability to express their wishes.
The best hospice experience begins with early and honest conversations. Be bold, ask questions and share your goals and concerns with family members and your doctors.
“It’s important for us to understand our options,” said the daughter of recent patient. “No one knows what's going to happen or when. A little guidance can open the floodgates to conversations we're all having in our heads.”
Hospice eligibility requires a patient’s doctor and a hospice medical director to determine a life expectancy of six months or less, if the disease follows a normal course. Because PF rarely follows a normal course, doctors use their best clinical judgement to determine prognosis.
There is not a six-month cutoff for care, but a doctor must order the service every six months to determine if hospice is still appropriate. Patients or a proxy may decide to end hospice care at any time.
Hospice is a benefit you have earned
Hospice is covered by Medicare, Veterans benefits, Medicaid and some private insurance plans. These benefits give patients and families access to end-of-life care without an overwhelming financial burden.
Palliative care focuses on intensive relief from symptoms and stress of serious illness. It is an added layer of medical, emotional and spiritual support for patients and their families.
Palliative care is different from hospice care because it can begin at any time after diagnosis. It does not require a life expectancy of six months or less. Medicare and many private insurance plans typically cover the cost of palliative care consultations.
Advance care directives
Advance care directives are legal documents that describe the healthcare you would want to receive if you cannot not speak for yourself. A living will and a health care proxy form are the foundation of advance care planning and directives. Some states combine these into a single form. Learn more about advanced care planning.
Hospice is not just for the final days or hours of life. Patients with chronic conditions, such as pulmonary fibrosis, often gain the full benefits of care with an early referral. These early conversations reduce confusion and help patients and families receive the care they want.