The National Institute of Nursing Research provides high-quality, evidence-based palliative care information to support individuals, families, clinicians, and communities who are managing the symptoms of serious illnesses.
Palliative (pal-lee-uh-tiv) care is treatment of the discomfort, symptoms, and stress of serious illness. You receive palliative care at the same time that you’re receiving treatments for your illness.
Palliative care provides relief from symptoms including pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep, and many other symptoms. It can also help you deal with the side effects of the medical treatments you’re receiving. Perhaps most important, palliative care can help improve your quality of life and provide help to your family as well.
Palliative care can provide you with:
- Expert treatment of pain and other symptoms so you can get the best relief possible.
- Open discussion about treatment choices, including treatment for your disease and management of your symptoms.
- Coordination of your care with all of your health care providers.
- Emotional support for you and your family.
Many adults and children living with serious illnesses such as cancer, heart disease, lung disease, kidney failure, multiple sclerosis, AIDS, and cystic fibrosis, among others, experience physical symptoms and emotional distress related to their diseases. Sometimes these symptoms are due to the medical treatments they are receiving.
You may want to consider palliative care if you or your loved one:
- Suffers from pain or other symptoms due to ANY serious illness.
- Has physical or emotional pain that is NOT under control.
- Needs help understanding their illness and discussing treatment.
For more information about palliative care for children, visit NINR’s Palliative Care: Conversations Matter® webpage.
Palliative care is available to you at any time during your illness. You can receive palliative care at the same time you receive other treatments for your illness. Its availability does not depend upon whether your condition can be cured. The goal is to make you as comfortable as possible and improve your quality of life.
You don’t have to be in hospice or at the end of life to receive palliative care. Palliative care is part of the hospice care approach. Hospice focuses on a person’s final months of life. To qualify for some hospice programs, patients must no longer be receiving treatments to cure their illness.
Palliative care can help manage the advanced symptoms of a serious illness and support families. Palliative care provides assistance with advance care planning, goal-concordant care, and provides emotional, social and spiritual support to patients and families.
It’s never too early to start palliative care. Palliative care can occur at the same time as all other treatments for your illness and does not depend upon the course of your disease.
There is no reason to wait. Palliative care teams understand that pain and other symptoms affect your quality of life and can leave you lacking the energy or motivation to pursue the things you enjoy. They also know that the stress of what you’re going through can have a big impact on your family. And they can assist you and your loved ones as you cope with the experience of living with a serious illness.
Together with your primary health care provider, your palliative care team provides pain and symptom control with every part of your treatment. Team members spend as much time as it takes with you and your family to help you fully understand your condition, care options, and other needs. They also help you make smooth transitions between all the settings where you may receive care (the hospital, nursing facilities, or home care).
Palliative care helps you set goals for the future that lead to a meaningful, enjoyable life while you get treatment for your illness.
This results in well-planned, complete treatment for all of your symptoms throughout your illness—treatment that takes care of you in your present condition and anticipates your future needs.
Every palliative care team is different. Your palliative care team may include:
- social workers
- religious or spiritual advisors
- counselors and others
You do NOT give up your own health care provider to get palliative care. The palliative care team and your health care provider work together.
Most clinicians appreciate the extra time and information the palliative care team provides to their patients. You may have to ask your health care provider for a referral to get palliative care services. Tell your health care provider you are thinking about palliative care and ask how to access palliative care in your area.
Researchers have studied the positive effects palliative care has on patients and their families. Recent studies show that patients who receive palliative care report improvement in:
- Pain, nausea, and shortness of breath.
- Communication with their health care providers and family members.
- Emotional support.
Other studies also show that starting palliative care early in the course of an illness:
- Ensures that care is more in line with patients’ wishes.
- Decreases stress and increases confidence in making decisions surrounding a loved one’s care.
- Meets the emotional and spiritual needs of patients and their families.
- If you have an illness causing you pain that is not relieved by medication such as acetaminophen or ibuprofen, the palliative care team may recommend trying stronger medicines. Palliative care teams may also assist in managing your pain through supportive, nonpharmacologic methods such as music or art therapy.
- As always, if you have concerns about taking medications, talk to your palliative care team. They can tell you about how various medications work, what their side effects are, and how to get the most effective pain relief
Palliative care can be provided in the hospital, at outpatient clinics, or at home. The process begins when your health care provider refers you to the palliative care team or when you ask your health care provider for a referral.
If you think you need palliative care, ask for it now. Tell your health care provider that you’d like to add palliative care to your treatment and ask to meet with the palliative care team or ask for a referral for palliative care.
Most insurance plans cover at least some palliative care services, just as they would other medical services. Medicare and Medicaid also typically cover palliative care. If you have concerns about the cost of palliative care, a social worker, care manager, or financial advisor at your hospital or clinic can help you.
If you want to find palliative care in your area, go to www.getpalliativecare.org to search by state and city.
NINR developed this campaign to increase the use of palliative care for children and teens living with serious illnesses. Find resources for families and health care providers.