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"When my doctor told me my cancer couldn't be cured and I probably had 6 months at best, it was hard to believe I'd run out of options. But then I started hospice care, and it's helped me face my fears. And I'm making decisions about how I want to go out and what will happen afterwards. It's given me back at least a little feeling of control."—Avery, 81
"My hospice care nurses have encouraged me to try to make the most of every day. I say 'I love you' a lot more, and I try to be honest about my feelings, to myself and to others. I'm so grateful for my hospice team. They are a blessing."—Barbara, 68
Hospice care provides medical services, emotional support, and spiritual resources for people who are in the last stages of a serious illness, such as cancer or heart failure. Hospice care also helps family members manage the practical details and emotional challenges of caring for a dying loved one.
The goal is to keep you comfortable and improve your quality of life.
Hospice programs offer services in your own home or in a hospice center. Some hospices also offer services in nursing homes, long-term care facilities, or hospitals.
Some people think that starting hospice is a last resort, that it means they're giving up on life. Some think that hospice means a lower level of medical care. But hospice is simply a type of care that focuses on the quality of your life instead of on continuing with treatment to prolong your life.
During the often difficult last stages of a serious illness, many people feel that they have lost control over their lives and over what will happen to them.
Hospice care can show you your options. And knowing your options gives you back some control. It allows you to make decisions about things that are important to you.
Hospice services usually include:
Most of the time, hospice care is provided in your home. Family members or loved ones may look after you much of the time. The hospice team will work with them to give you the best care possible. Someone from your hospice team will likely visit you for an hour or so once a week or more.
In addition to a doctor and nurses, hospice teams usually include:
Some hospice teams also include:
Some people worry about losing touch with their regular, trusted doctor. But he or she can work with others on your team to stay involved in your care.
Usually, these two things must be true for you to be eligible for hospice care:
Some people live longer than expected. If you live longer than 6 months, you can continue with hospice care. If your illness gets better, you can stop getting hospice care. You may no longer qualify for it.
Hospice care is generally paid for by Medicare, Medicaid, and private insurance. Care may also be available to those unable to pay.
Frequently Asked Questions
Learning about hospice:
The last stages of a serious illness can be so hard. You may feel like you have lost control over your life and what will happen to you.
Hospice can help you get back some control by showing you what your options are and helping you make decisions about things that are important to you.
You may want to consider hospice care if:
Some people who might benefit from hospice care don't receive it. Many people, including some health professionals, simply don't know much about it. It can be hard for a doctor to talk to a patient about hospice, because it means talking about the end of life.
It can also be hard for you and your family to accept that the end of life is near. Some families choose to pursue aggressive medical care up to the end.
Eligibility for most hospice programs is usually based on two main requirements:
It can be hard for doctors to know how long a person will live. Some people live longer than expected. If you do live longer than 6 months, you can continue with hospice. If your illness gets better, you can stop receiving hospice care. You may no longer qualify for it.
Hospice care is generally paid for by Medicare, Medicaid, and private insurance. Care may also be available to those unable to pay.
Some people are living with a terminal illness that is not predictable. They may not necessarily die within 6 months. In fact, they may live for several years. But they may still be eligible for hospice care.
There are guidelines for terminal diseases that have an unpredictable course. People who have the following illnesses may have hospice care when their disease has reached an advanced stage:
Many people who are living with a disease that has an unpredictable but still terminal course may also want and be able to receive hospice care. In some of these cases, Medicare might not cover hospice care costs. Medicare covers the cost of hospice in the last 6 months of life.
If you feel that you need to ask questions and explore your options about end-of-life care, including hospice, don't wait for your doctor or loved ones to bring up the subject. Be open and direct with your loved ones and your health professionals.
Your doctor can go over hospice care and other options with you. He or she can explain the pros and cons of each of them, answer questions, and advise you. Then you can think about the kinds of treatments you would or would not want in different situations. This can help you get a clear idea of your wishes.
You can make many choices about your end-of-life care ahead of time. Making plans while you are still able may ease your mind and make your final days more peaceful.
Write down any questions you have about hospice care to discuss with your doctor during your next visit. Let your family and doctor know what you decide so they can help carry out your wishes.
One goal of hospice is to allow you to live out your life without further treatment for your illness, as naturally as possible. You'll get medical care to provide comfort rather than to prolong life.
For example, chemotherapy may no longer be used to cure your cancer, but it may be given to reduce pain.
People who want to live as long as possible by any medical means are not a good match for hospice care.
Another goal of hospice is to give you as much control and dignity as possible during the time you have left. For example, most people in hospice can choose to die at home, surrounded by loved ones, rather than in a hospital, hooked up to one or more machines.
It's important to understand that hospice doesn't include treatment to cure your illness. But your hospice team will prepare your caregivers to cope with almost anything that could happen at home.
And being in hospice care doesn't mean that you can't go to a hospital if you need to. When a hospice takes over your care, they will work with you to arrange for any medical care that you need. If something happens that causes a caregiver to call 911, you may be treated in a hospital and later return to hospice care.
When you decide to be cared for by a hospice program, it means that your treatment goals will shift from doing everything possible to cure your condition to giving you the best quality of life that is possible in the time you have left.
You don't need to be bedridden or in a hospital to benefit from hospice care. No matter what your physical condition, hospice services focus on keeping you as comfortable, functional, and alert as possible.
Your hospice team may include medical professionals, counselors, therapists, social workers, spiritual advisers, home health aides, and trained volunteers. Your team can:
Counseling and support services that hospice provides can help you to:
Hospice care also includes helping your family and friends through their grief after you die. Most programs continue to provide bereavement services for family and friends, such as support groups and counseling, for at least a year after a loved one's death.
If you decide that you want hospice care, you'll need to complete documents to determine your eligibility and insurance coverage and to outline your treatment preferences. These documents include:
Your doctor or a member of your health care team may refer you to a hospice program. If not, you may want to ask your doctor to do so.
Or you may choose a hospice program yourself. Start by calling some of the programs in your area. People and organizations that can help you find hospice programs include:
All hospice programs should provide written materials that describe their services, including who provides the services, who is eligible, costs and payment processes, and the program's insurance and liability information. Ask for this information, and read it carefully.
After you have begun the hospice program, you will want to get all billing arrangements in writing, including costs and payment arrangements. Be sure to keep a copy.
Be sure that your family knows:
It's also important to make sure that your family will get the support they need after you die. Choose one person to be responsible for notifying family and friends about support group meetings, bereavement counseling opportunities, and other services that the hospice program may provide.
|Aging With Dignity|
|P.O. Box 1661|
|Tallahassee, FL 32302-1661|
Aging With Dignity is a private, non-profit organization best known for its Five Wishes advance directive, which helps individuals and families better plan for and receive the kind of care they want during times of serious illness. Five Wishes is a document that helps you express how you want to be treated if you are seriously ill and not able to speak for yourself. All of a person's needs are addressed: medical, personal, emotional, and spiritual.
|American Hospice Foundation|
|2120 L Street, N.W.|
|Washington, DC 20037|
The American Hospice Foundation strives to improve access to quality hospice care through public education, professional training, and consumer advocacy. The organization supports programs that serve the needs of terminally ill and grieving individuals of all ages. It publicizes hospice concepts through training, education, and outreach, promoting services, and initiating research on consumer needs and preferences in end-of-life care.
The Web site offers information about death and dying and related grief and grieving processes. The "Grief Zone" has links to readings grouped into categories such as grief and kids, grief on the job, hospice information and support, and grief and faith.
|Phone:||1-800-658-8898 help line|
|Phone:||1-877-658-8896 multilingual line (toll-free)|
Caring Connections, a program of the U.S. National Hospice and Palliative Care Organization (NHPCO), seeks to improve care at the end of life. Caring Connections provides free resources, including educational brochures, advance directives and hospice information, and a toll-free help line for people looking for quality end-of-life information.
|Hospice Association of America|
|228 Seventh Street SE|
|Washington, DC 20003|
The Hospice Association of America (HAA) seeks to heighten the public visibility of hospice services. HHA offers a number of helpful, practical publications for people who are considering hospice, including consumer guides, fact sheets, historical perspectives, and other background information. The Web site offers information from the legislative, regulatory, research, legal, and public relations departments, including "Hospice Facts and Statistics."
|National Hospice and Palliative Care Organization|
|1700 Diagonal Road|
|Alexandria, VA 22314|
The U.S. National Hospice and Palliative Care Organization (NHPCO) offers information on local hospice and palliative care programs across America. NHPCO is committed to improving end-of-life care and expanding access to hospice care with the goal of improving quality of life for dying people and their loved ones.
Other Works Consulted
- Arnold R (2012). Care of dying patients and their families. In L Goldman, A Shafer, eds., Goldman’s Cecil Medicine, 24th ed., pp. 9–15. Philadelphia: Saunders.
- Byock I (1997). Dying Well. New York: Riverhead Books.
- 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.
- Emanuel EJ, et al. (2008). Palliative and end-of-life care. In AS Fauci et al., eds., Harrison's Principles of Internal Medicine, 17th ed., vol. 1, pp. 66–80. New York: McGraw-Hill.
- Rakel RE, Strauch EM (2011). Care of the dying patient. In RE Rakel, DP Rakel, eds., Textbook of Family Medicine, 8th ed., pp. 53–72. Philadelphia: Saunders.
- Zisook S, et al. (2009). Death, dying, and bereavement. In BJ Sadock et al., eds., Kaplan and Sadock’s Comprehensive Textbook of Psychiatry, 9th ed., vol. 2, pp. 2378–2407. Philadelphia: Lippincott Williams and Wilkins.
|Primary Medical Reviewer||E. Gregory Thompson, MD - Internal Medicine|
|Specialist Medical Reviewer||Kathleen Romito, MD - Family Medicine|
|Last Revised||August 14, 2012|
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