What is palliative care?
It is hard to live with a serious illness. You may feel lonely, angry, scared, or sad. You may feel that your treatment is doing more harm than good. You may have pain or other disturbing symptoms. Palliative care can help you and your loved ones cope with all of these things.
Palliative care is a kind of care for people who have serious illnesses. It is different from care to cure your illness, called curative treatment. Palliative care focuses on improving your quality of life—not just in your body, but also in your mind and spirit. Sometimes palliative care is combined with curative treatment.
The kind of care you get depends on what you need. Your goals guide your care. Palliative care can help reduce pain or treatment side effects. Palliative care may help you and your loved ones better understand your illness, talk more openly about your feelings, or decide what treatment you want or do not want. It can also help with communication among your doctors, nurses, and loved ones.
Why would I want palliative care?
Palliative care providers are interested in what is bothering you and what is important to you. They want to know how you and your loved ones are doing day-to-day. They understand that your illness affects not just you, but also those you love.
Your palliative care providers will ask questions about how your illness affects your emotions and spirit. Then they will try to make sure that your medical care meets your goals for your body, mind, and spirit. They will also help you make future plans around your health and medical care.
You might see a palliative care provider just once or maybe more often. He or she will work with your other doctors to give you the best care possible.
Who is involved in palliative care?
Palliative care actively involves you and your loved ones. Together you will work with health care providers in your doctor’s office or your home, or in a hospital, nursing home, or hospice. If you are interested in palliative care, talk with your doctor. He or she may be able to manage your palliative care needs or may refer you to someone who is trained in palliative care.
Many hospitals now have palliative care teams. These teams often include palliative care doctors, nurses, and social workers. The teams may also include spiritual advisors, dietitians, occupational therapists, pharmacists, physical therapists, respiratory therapists, and volunteers.
How can I work with a palliative care team?
Good communication is a large part of palliative care. Your palliative care providers will encourage you to listen to your feelings and to talk about what is most important to you. They will also try to explain things to you and your loved ones in ways you can understand. Then they will work with your primary care doctor to make sure that your care is meeting your goals, such as managing disturbing symptoms or making future plans.
You may talk about anything and everything during a palliative care visit, including:
- Pain and medicine side effects.
- Emotional and social challenges, such as helping your family get along better.
- Spiritual concerns.
- Goals and dreams.
- Hospice care.
- Advance directives. Advance directives are instructions to your doctor and loved ones about what kind of care you want if you become unable to speak for yourself.
The Growth of Palliative Care
Palliative care is not a new concept. Some doctors, nurses, and other health care workers have been giving this type of care for a long time.
The number of palliative care providers around the country is increasing. So is the number of programs to train health professionals in palliative care. More and more health professionals are realizing that palliative care is “good medicine.” They think that palliative care can help anyone who has a serious illness.
How Palliative Care Can Help You
Palliative care can help you feel better as a whole person—in your body, mind, and spirit. It helps you focus on “the big picture” of your life. Palliative care includes your family and loved ones.
Sometimes talking with someone who is not a friend or family member can help you see more clearly. This person could be a palliative care provider.
It is important to talk about your goals and wishes sooner rather than later. That way, you, your loved ones, and your doctors know what you want. If you choose, you can be a part of every decision about your care.
Palliative care works best with open communication. Try to focus on what you can do to improve communication with your palliative care provider. If you do not understand what is being said, ask questions until you do. You may want to write down your questions before your appointment or to bring a loved one to your appointment. Important questions to ask include:
- What is my diagnosis?
- What are my treatment options?
- What are the side effects of these treatments?
- What do you think will happen if I choose not to treat my illness?
- How long do you think I have to live?
- How soon do I need to make a decision about which treatment to use (or to not use)?
- How will my illness and care affect my loved ones?
You might talk about many things during a palliative care visit, including:
Treatment. You get to decide how well your treatment is working and if you want to continue it. Maybe you really want to see your grandson graduate, so you decide to continue treatment even though it makes you feel sick. Or maybe you prefer to stop or limit treatment because you would rather focus on the quality of your life rather than the length of your life.
Pain and treatment side effects. You may think you have to live with side effects or pain. But a palliative care doctor can often prescribe medicines to help with these. All types of treatment have pros and cons, but you can work with your doctor to find the right mix of medicines for you.
Emotional and social challenges. A palliative care team can help you and your loved ones talk about feelings and solve problems. Palliative care team members may talk to you about your feelings about living with a serious illness. They may help you work through stressful family situations. They might even be able to help you arrange transportation or find resources to help pay for medicines.
Spiritual concerns. It can be scary to think about living the rest of your life with a serious illness. You may be struggling with questions such as “Did I do something to deserve this illness?” or “Has my life been meaningful?” or “What is going to happen to me when I die?” Your palliative care team may include a chaplain or spiritual adviser who can help you talk through these kinds of questions.
Goals and dreams. Maybe you have always wanted to go to the Grand Canyon or be reunited with a long-lost sister. A palliative care team may be able to help you feel well enough to make these goals and dreams come true.
Hospice care. When you, your loved ones, or your doctors feel that you may have less than 6 to 12 months to live, you may want to think about hospice. This kind of care is given wherever you are, whether that is a nursing home, hospital, or your own home.
Advance directives. You can fill out legal papers called advanced directives. These important papers tell your doctor about the kind of care you want at the end of your life. For example, you decide if you want doctors to use machines to keep your body alive when it can no longer do so by itself, and you can say how long you would be willing to live on these machines.
You may find it helpful to read personal stories about how palliative care has helped others.
Is Palliative Care for Me?
Health professionals and hospitals are using palliative care more and more. They find that patients and families like this kind of care.
Anyone who has a serious illness can benefit from palliative care. You can get care to treat your illness and palliative care at the same time. You do not have to choose one or the other.
Some treatments can be curative or palliative. For example, radiation is often a curative treatment for cancer. But it can also be used to help control cancer pain. When it is used to control pain and not to get rid of cancer, it is called palliative radiation.
If curative treatment is no longer working, a palliative care provider can help you decide if you want to continue that treatment. When the time is right, your palliative care provider may talk to you about hospice care. This is care for people who are in their final weeks or months of life. For more information, see the topic Hospice Care.
Where to Go From Here
Write down any questions you have about palliative care. Talk about your questions with your doctor during your next visit. If you would like more information on palliative care, see the Other Places to Get Help section of this topic.
Other Works Consulted
- American Health Lawyers Association (2005). A Guide to Legal Issues in Life-Limiting Conditions. Available online: http://www.healthlawyers.org.
- Lampert R, et al. (2010). HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm, 7(7): 1008–1026. Available online: http://www.hrsonline.org/Policy/ClinicalGuidelines/upload/ceids_mgmt_eol.pdf.
- Lederberg MS (2009). End-of-life and palliative care. In BJ Sadock et al., eds., Kaplan and Sadock’s Comprehensive Textbook of Psychiatry, 9th ed., vol. 2, pp. 2353–2378. Philadelphia: Lippincott Williams and Wilkins.