People with ILD often have strong preferences about their end-of-life care. Most people with chronic lung disease state that they would prefer to experience end of life at home. However, the reality in the United States today is that approximately half of people with chronic lung disease experience end of life at a hospital or nursing facility instead of at their home.1
Learning more about hospice, which is specialized end-of-life care, is one way that you can become empowered to make choices. Although this can be a difficult topic to think about and discuss, it is better to talk openly with your healthcare team and loved ones before the end-of-life process begins. Waiting too long to discuss your preferences and desires may make it very difficult or impossible to achieve the type of experience that you would choose.2
It is best to discuss end-of-life care while things are still stable. This ensures that the hospice care team will be there to help you achieve your wishes and preferences at end of life to the greatest extent possible. This article will answer common questions about hospice and can serve as a conversation starter with family, loved ones, and your healthcare team.
What is hospice care?
Hospice care is specialized healthcare provided to a person who is near the end of life. During hospice care, a team of healthcare professionals work with the person and their family with the goal of increasing comfort and quality of life. Hospice care can be provided for someone with a terminal illness when the doctor believes the person has 6 months or less to live, if the illness runs its natural course.
It is important to know that patients on hospice care must confirm in writing that they would like comfort care (also called palliative care) only. On hospice care, direct treatments for ILD that might prolong life, such as anti-fibrotic medication or pulmonary rehabilitation, are not covered by insurance any longer. However, if a person enters hospice care and then decides to return to direct treatment for ILD, leaving hospice care is always allowed.
Is hospice care voluntary?
Yes, hospice care is voluntary. No one can force you to accept hospice care. You can enter hospice care and then leave it again.
Who provides hospice care?
The hospice care team consists of the following members:
- Hospice physician
- Home health aides
- Social workers
- Clergy, if desired
- Counselors for person and family
- Trained volunteers who can offer support
- Speech, physical, and occupational therapists, if needed
- The person’s personal physician, if needed or desired.
What type of services are provided by hospice care?
- Visits to the patient’s residence by healthcare providers and other providers
- Medication for pain relief and symptom control (comfort)
- Durable medical equipment like wheelchairs or walkers
- Medical supplies like bandages and catheters
- Physical and occupational therapy
- Speech-language pathology services
- Dietary counseling
- Grief and loss counseling for the patient and their loved ones.
What types of services are not covered by hospice care?
- Treatment intended to cure a terminal illness or prolong life
- Treatment for conditions unrelated to comfort care for the terminal illness
- Prescription drugs to cure or directly treat a terminal illness or for anything unrelated to comfort care for that illness
- Room and board in a nursing home, memory care unit, assisted living facility, or other residential facility
- Ambulance transportation, emergency room care, or inpatient care, unless it is specifically arranged by the hospice team or is unrelated to the terminal illness (for example, treatment for a broken bone in the emergency room would be covered).
What are the different types of hospice care?
There are several different types of hospice care:
- Intermittent hospice care in the patient’s residence (home, skilled nursing facility, assisted living facility, memory care facility, etc.). Care in the residence will be provided periodically throughout the day or week, but will not be provided around the clock.
- Continuous hospice care in the patient’s residence (sometimes called crisis care). If a patient has a medical crisis or symptoms flare up in a way that requires intense care, hospice care may be provided round-the-clock for a certain period of time. This may involve a healthcare provider or nurse being in the patient’s residence most or all of the time.
- Inpatient hospice care. Inpatient care is necessary if a patient's symptoms can no longer be managed at home. The inpatient hospice care team will work to control severe pain and stabilize symptoms so that the patient can return to their residence, if possible. Inpatient hospice care may also be provided for short stays called respite care. Respite care stays provide a short, much-needed break for caregivers and family who are providing a great deal of care at home. They can rest for a short time, knowing their loved one is receiving round-the-clock, professional care.
Does Medicare pay for hospice care?
Medicare Part A will pay for hospice care.3 For this to happen, the doctor must certify that the patient is terminally ill with a life expectancy of 6 months or less. Patients must also sign a statement saying that they would like comfort care only, rather than treating the ILD directly with life-prolonging treatments. The statement declares that the person is choosing hospice care rather than other benefits covered by Medicare which may treat the ILD directly.
Once these conditions are met, Medicare will cover the following:
- All items and services needed for pain relief and symptom management
- Medical, nursing, and social services
- Drugs for pain management
- Durable medical equipment for pain relief and symptom management
- Aide and homemaker services
- Spiritual and grief counseling for you and your family
- Short-term inpatient care for pain and symptom management at an approved facility
- Short-term (5 days maximum) inpatient respite care at an approved facility to allow your caregiver to rest.
There may be a copayment for prescription drugs or other medications, but it cannot be more than $5.00 per prescription. The person on hospice is also responsible for paying 5% of the cost for inpatient respite care. It is important to ask your hospice provider for the details of your coverage if you decide to enter hospice care.
Remember, you can change your mind about hospice care at any time.
Does hospice care cause people to die more quickly than they would otherwise?
No. Large database studies comparing survival for people who choose hospice and those who do not have found that people who choose hospice, on average, live longer by up to four weeks.4
How can I find information about hospice care services in my area?
One of the best ways is to bring the topic up with your doctor, nurse, or social worker. Feel free to speak up about your wish to learn more about hospice care while you are stable and doing well. Your healthcare team may hesitate to bring it up, but will likely be happy to explore this option with you when you bring it up.
Other resources include:
- The Hospice and Palliative Care Federation of Massachusetts Palliative Care Directory.
- The Center to Advance Palliative Care Provider Directory.
- The National Hospice and Palliative Care Organization Care Provider Directory.
- The Hospice Foundation of America Hospice Directory.
- Cross SH, Ely EW, Kavalieratos D, Tulsky JA, Warraich HJ. Place of death for individuals with chronic lung disease: trends and associated factors from 2003 to 2017 in the United States. Chest. 2020;158(2):670-680.
- Koyauchi T, Suzuki Y, Sato K, et al. Quality of dying and death in patients with interstitial lung disease compared with lung cancer: an observational study. Thorax. 2021;76:248-255.
- Medicare.gov. Hospice Care.
- Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-246.