Supportive Care for Patients with Interstitial Lung Disease
Bothersome cough that exhausts you during the day and keeps you up at night. Fatigue that makes it hard to accomplish daily life tasks or to socialize. Breathlessness that makes you feel anxious, worried, or even, at times, trapped.
For many people with ILD, the symptoms are difficult to bear. You are not alone in feeling this way. In addition, a lack of information about what is happening and what to expect just adds to the worry and exhaustion. Social isolation, depression, panic attacks, and anxiety are often the result for people living with ILD, and for their caregivers as well.1,2
With all of these challenges, good supportive care is essential. Supportive care can improve bothersome symptoms and improve daily quality of life. It can provide education, answers, and practical advice to patients and caregivers. It can help build up hope and provide social support. Good supportive care takes into account the whole person – mental, physical, emotional, social, and practical.
The good news is that supportive care is available to most people with ILD and their caregivers. It is called palliative care.
The name “palliative care” causes a lot of anxiety and confusion for many patients and caregivers. The name comes from the word “palliate”, which means “to cloak, cover, ease, or reduce the burden”. Palliative care is not the same as “end-of-life” care, is not the same as hospice care, and does not mean a patient is “about to die”. Palliative care does not mean that you must stop taking mediations or treatments that aim to prolong life or treat your disease. It does not mean the doctor has given up on you. In fact, many patients who receive good palliative care along with specific treatments for their disease end up living longer than those who receive specific treatments for their disease only.3
This article will describe how palliative care works and offer information about how palliative care can be helpful for patients, families, and caregivers at every stage of the ILD journey.
“We need to take the stigma away from the words ‘palliative care’ and disassociate it from hospice care. The reality is, at this point in time, there is no cure for IPF. The way I see it, patient care is best focused on the most and best support immediately after diagnosis, because the patient’s best time is directly in front of them.”
— Judy, living with idiopathic pulmonary fibrosis and receiving palliative care
What is palliative care?
Palliative care is supportive care with four goals:
- Help a person live as well as possible for as long as possible in a way that fits with that person’s values and goals.
- Prevent and reduce suffering (physical, emotional, and social).
- When the time eventually comes, help a person achieve the end-of-life experience that fits with the person’s values and priorities.
- Support and relieve the suffering of caregivers.
Palliative care can provide:
- Medications or non-medication options to relieve or reduce symptoms.
- Durable medical equipment to make activities of daily life easier.
- Physical, speech, or occupational therapy.
- Social/emotional support resources.
- Spiritual support resources.
The palliative care team supports caregivers as well as patients. Caregivers are included because they can become stressed and overwhelmed, putting them at increased risk for illness, depression, anxiety, and social isolation. A key part of palliative care is providing education and social/emotional support to caregivers.4
People with ILD can receive palliative care alongside disease-specific treatments like anti-fibrotic medications, oxygen supplementation, and pulmonary rehabilitation. You do not have to give up treating your disease to get good supportive care.Who provides palliative care?
Palliative care is usually delivered by a specialized team of professionals. The team may include:
- Nurses and nurse practitioners
- Physician assistants
- Registered dietitians
- Social workers
- Speech-language therapists
- Occupational therapists
- Physical therapists
- Massage therapists
Palliative care can be provided in hospitals and long-term care facilities, but most of the time, it is provided at home.
Is palliative care another name for hospice?
No. Palliative care is not the same as hospice care. Hospice is provided for a person with a terminal illness whose doctor believes he or she has 6 months or less to live if the illness runs its natural course. When entering hospice, patients confirm that they would like palliative care only, rather than also having direct treatments for ILD that might prolong life.
Hospice care is voluntary. If a person enters hospice care and then decides to return to direct treatment for ILD and leave hospice, that is always allowed.
What is the difference between home health care and home-based palliative care services?
Home health care means any health care delivered in your own home. Healthcare providers travel to the person’s home to help treat an illness, injury or chronic condition. Home health care can be used for a short time, such as recovery from a surgery, or a long time, such as with a person who has had a stroke.
The goal of home health care is to treat the underlying illness or injury. The team will work to help the patient get better, regain their independence, and become as self-sufficient as possible. Improving the quality of life for the patient and caregiver and providing social/emotional support may happen, but those are not the main goals of home health care.
For some insurance companies (including Medicare), home health care will only be covered if a person is homebound. Homebound means that a person needs the aid of supportive devices, or special transportation, or the assistance of another person in order to leave their place of residence OR have a condition such that leaving the home is medically contraindicated. In addition, the person must generally be unable to leave the home without “considerable and taxing effort”.5
Palliative care does not require a patient to be homebound.
What are the benefits of palliative care for people with ILD?
On average, people with ILD experience more difficulties because of their condition than people with lung cancer do.1People with ILD have a higher burden of symptoms, worse quality of life, more difficulty with day-to-day activities, and more social isolation than are reported by people with cancer. These difficulties also last longer.6
Living with ILD can be very challenging. Taking care of a loved one with ILD can be very challenging. The supportive (palliative) care team is there to help. Benefits include increased comfort, less anxiety and depression, less social isolation, increased understanding of the disease and how to cope, increased ability to do the things you enjoy doing, and better overall quality of life.7,8
When is the best time to start palliative care in the ILD journey?
Palliative care is always a good option to discuss. In an ideal world, it would begin as soon as the person is diagnosed. If that is not possible or desired, then it is useful to consider and discuss palliative care if hospitalizations increase, medications are no longer working well, or supplementary oxygen is prescribed.
Unfortunately, many doctors do not bring up this issue with patients because patients often misunderstand. They may believe palliative care and hospice are the same, and that their doctor is “giving up”. The doctor may avoid the topic because of worry about taking away hope or sending the wrong message about continuing your treatment to prolong life. But if you bring it up with your doctor, most doctors are happy to refer you to the palliative care team.
In a survey study of 69 healthcare professionals who treat patients with ILD, respondents were asked to explain at which point in the disease course they initiate palliative care for their patients. Around a third of respondents answered that palliative care was started at an early stage of the disease if desired by patients. Most reported that palliative care was initiated in more advanced stages of the disease. Unfortunately, 20% of respondents stated that palliative care was only initiated at the end of life.9 The message is: feel free to speak up with your doctor about this topic.
Does Medicare cover palliative care?
Yes, with some rules that are important to understand.
If you would like hospice care:
Medicare Part A (hospital insurance) will pay for palliative care only when it is part of hospice care in your home or residence (such as a nursing home). For this to happen, your doctor must certify that you are terminally ill with a life expectancy of 6 months or less. You must also sign a statement saying that you would like comfort care only, rather than treating your illness directly with life-prolonging treatments. The statement declares that you choose hospice care rather than other benefits covered by Medicare which may treat your terminal illness.
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.
You may have a copayment for prescription drugs or other medications when you are on hospice care. This copayment cannot be higher than $5.00 per prescription. You may also have to pay 5% of the cost for inpatient respite care. If you decide to take this option, it is important to ask your hospice provider for the details of your coverage.
You can change your mind about hospice care at any time.
If you would like palliative care, but you do not want hospice care:
Medicare Part B (medical insurance) will usually help cover the costs of palliative care, including medically necessary services and supplies, mental health care, and durable medical equipment. Many of these services and supplies will be covered along with coverage for treatments that directly address your disease with the intent to prolong your life. Aide and homemaker services and respite care will not usually be covered.
Medicare Part D (prescription drug insurance) will cover prescription drugs, including those a person needs when receiving palliative care. These may include medications for anxiety, pain relief, nausea, fatigue, or other symptoms. The copayment for these will be the standard rate for Medicare Part D.
If you have Medicare coverage through a Medicare Advantage plan, you will have at least the same benefits as original Medicare. Some Medicare Advantage plans include additional coverage. You will need to call your plan manager directly to ask what will be covered.
How can I find information about palliative 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 try palliative care alongside any of your direct treatments for ILD. 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.
Medicare.gov. Hospice Care.
National Institute of Nursing Research. Palliative Care: The Relief You Need When You Have a Serious Illness.
US National Library of Medicine Medline Plus. Palliative Care.
- Wysham NG, Cox CE, Wolf SP, Kamal AH. Symptom burden of chronic lung disease compared with lung cancer at time of referral for palliative care consultation. Ann Am Thorac Soc. 2015;12(9):1294-1301.
- Carvajalino S, Reigada C, Johnson MJ, Dzingina M, Bajwah S. Symptom prevalence of patients with fibrotic interstitial lung disease: a systematic literature review. BMC Pulm Med. 2018;18(1):78.
- Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med. 2014;2(12):979-987. doi:10.1016/S2213-2600(14)70226-7
- van Manen MJ, Kreuter M, van den Blink B, et al. What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany. ERJ Open Res. 2017;3(1):00065-2016.
- Medicare.gov. Home Health Services.