Palliative Care

Topic Overview

What is palliative care?

It is hard to live with an illness that cannot be cured. 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 illnesses that do not go away and often get worse over time. 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 make sure your doctors, nurses, and loved ones understand your goals and are "on the same page."

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.

How is palliative care different from hospice care?

In the past, palliative care was mostly used to treat people on hospice care. Hospice is a type of palliative care for people who are in their final weeks or months of life.

Palliative care is no longer just for people who are near death. Today, palliative care can help anyone who has an illness that may get worse over time. For example, you may want palliative care while you are getting treatment for heart failure. Palliative care could help you manage symptoms or side effects of treatment so that you will feel better.

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:

• Treatment.
• 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.

Frequently Asked Questions

The Growth of Palliative Care

Palliative care is not a new concept. Hospices have been using palliative care for many years. 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 an illness that gets worse over time.

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. While all types of treatment have pros and cons, 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 feel more at peace. Palliative care team members may talk to you about your feelings about living with a long-term (chronic) illness. They may help your family get along better or share feelings more openly. They might even be able to help you find resources for money problems. It depends on what you need.

Spiritual concerns. It can be scary to think about living the rest of your life with a chronic illness. You may be struggling with questions such as "Did I do something to deserve this illness?" "Has my life been meaningful?" or "What is going to happen to me when I die?" Your palliative care team can help you talk through these kinds of questions.

Goals and dreams. Maybe you have always wanted to go to Hawaii or write your life story, but traveling or writing is difficult because of your illness. A palliative care team may be able to help 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. Hospice is palliative care that you can receive in your home. For many people, being at home is more comfortable than being in a hospital. Being at home allows them to be with loved ones and to focus on what matters most. For more information, see the topic Hospice Care.

Advance directives. A palliative care doctor can help you fill out important legal papers called an advance directive. These papers tell your doctors how to care for you 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 how long you would be willing to live on these machines. You decide whether you would want doctors to try to bring you back to life using CPR once your heart stops. You also decide who you want to make decisions for you if you cannot speak for yourself. For more information, see the topic Writing an Advance Directive.

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 an illness that gets worse over time 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. Hospice is palliative 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 Places To Get Help

Organizations

Related Information

• Care at the End of Life
• Grief and Grieving
• Hospice Care
• Writing an Advance Directive

References

Other Works Consulted

• Carney MT, et al. (2006). Symptom management in palliative medicine. In DC Dale, DD Federman, eds., ACP Medicine, Clinical Essentials, chap. 10. New York: WebMD.

• Cordts GA, et al. (2007). Care at the end of life. In LR Barker et al., eds., Principles of Ambulatory Medicine, 7th ed., pp. 192-207. Philadelphia: Lippincott Williams and Wilkins.

• Gomez D (2002). Advance directives and CPR. In BM Kinzbrunner et al., eds., 20 Common Problems in End-of-Life Care, chap. 15, pp. 297-311. New York: McGraw-Hill.

• Lederberg MS, Joshi N (2005). End-of-life and palliative care. In BJ Sadock, VA Sadock, eds., Kaplan and Sadock's Comprehensive Textbook of Psychiatry, 8th ed., vol. 2, pp. 2336-2366. Philadelphia: Lippincott Williams and Wilkins.

• Pan CX (2003). Palliative medicine. In DC Dale, DD Federman, eds., Scientific American Medicine, Clinical Essentials, chap. 9. New York: WebMD.

• Sadock BJ, et al. (2007). End of life care and palliative medicine. In Kaplan and Sadock's Synopsis of Psychiatry, Behavioral Sciences/Clinical Psychiatry, 10th ed., pp. 1359-1370. Philadelphia: Lippincott Williams and Wilkins.

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