What is hospice care?
Hospice care provides medical services, emotional support, and spiritual resources for people who are in the last stages of a terminal 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.
Why would I choose hospice care?
The primary goal of hospice care is to keep you comfortable while you are dying. This philosophy is a shift from usual medical treatments in which health professionals strive to cure your disease and/or keep you alive at all costs. Hospice services are not intended to speed up or prolong the dying process, but focus instead on relieving pain and other symptoms. Hospice caregivers are concerned with enhancing the quality of remaining life by keeping you as alert and comfortable as possible in a familiar environment with family and friends.
Hospice programs offer services either in your own home or in a hospice center. Some hospices also offer services in nursing homes or hospitals. In-home hospice care generally supplements care given by family members or home health care services. Although hospice help is available 24 hours a day and 7 days a week, full-time 24-hour hospice care is generally only available in a hospice facility.
What kind of services are provided?
Hospice services generally include:
- Basic medical care with a focus on pain and symptom control.
- Medical supplies and equipment as needed.
- Counseling and social support to help you and your family with psychological, emotional, and spiritual issues.
- Guidance with the difficult, but normal, issues of life completion and closure.
- A break (respite care) for caregivers, family, and others who regularly care for you.
- Volunteer support such as meal preparation or errand running.
Who is involved with providing hospice services?
A team of health professionals will be involved in your care. This team generally includes your doctor and nurses, social workers, spiritual advisers, nursing assistants, and trained volunteers. Other health professionals, such as pharmacists, respiratory therapists, physical therapists, and occupational therapists, may be included as well. The team will adjust the care plan as your situation and needs change.
Am I eligible for hospice services?
Eligibility for most hospice programs is based on two criteria:
- Your condition is not considered curable (terminal illness).
- Your doctor has indicated that your life expectancy is estimated to be 6 months or less if your illness runs its normal course. Usually a form must be signed by your primary doctor as well as by the medical director or physician member of a hospice team.
Hospice care programs do not discriminate. Care is provided regardless of age, sex, religion, diagnosis or type of health problem, ethnic or cultural background, or sexual orientation.
Payment for hospice services is covered through Medicare and most Medicaid programs. Many, but not all, private insurance programs also offer a hospice benefit. For this reason, it is important to research whether your health insurance coverage offers hospice benefits and determine exactly which services are included. Many hospice programs will research your medical coverage for you.
Receiving Hospice Care
A hospice program is a comprehensive program with services for people who are seriously ill and not expected to recover from their illness or condition. When you decide to be cared for by a hospice program, you acknowledge that your treatment goals will shift from doing everything possible to prolong your life to helping make the rest of your life as comfortable and meaningful as possible.
You do not need to be bedridden or in a hospital to be eligible for or benefit from hospice care. No matter what your physical condition, hospice services focus on keeping you as comfortable, functional, and alert as possible. If needed, these services may include help with bathing, dressing, and eating as well as administering medication and treatment for all symptoms, including pain and anxiety.
The hospice team, which consists of medical professionals, counselors, therapists, social workers, pastors, home health aides, and trained volunteers, is available to address your ongoing concerns and needs. Your team can:
- Assist with advance directive forms. This may include documenting your preferences regarding life support and cardiopulmonary resuscitation (CPR).
- Answer questions about palliative treatments, which are designed to relieve pain and other symptoms.
- Help you determine what is important in terms of putting your legal and financial affairs in order.
- Help you and your family communicate and deal with unresolved issues.
Counseling and support services that a hospice program provides can help you:
- Resolve differences with family and friends or say important things that may otherwise go unsaid.
- Complete relationships.
- Review your life.
- Explore spiritual issues.
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.
Considering Hospice Care
You may want to consider hospice care if:
- You have a disease or illness that is no longer responding to treatment.
- Treatment that tries to cure the disease or prolong your life has become more of a burden than a benefit to you.
- You would like to spend your remaining life as comfortably as possible in a setting that you choose, such as your own home.
- You want family and friends to participate in your care.
- You want your loved one who has a terminal illness to die comfortably at home.
Some people who might benefit from hospice care do not receive it for a variety of reasons. Many people, including some health professionals, simply don’t know much about hospice care. It can be difficult for a doctor to acknowledge that a person is approaching the final stages of an illness and to introduce the concept of hospice services. It can also be difficult for you and your family to accept that the end of life is approaching; some individuals and families choose to pursue aggressive medical care up to the end, regardless of the toxicities or costs.
The Medicare Hospice Benefit legislation, passed in 1982, pioneered the model for hospice programs in the United States. Eligibility for most hospice programs, as established by Medicare, is based on two criteria:
- Your condition is not considered curable.
- Your doctor has indicated that your life expectancy is estimated to be 6 months or less if your illness runs its normal course. A form must usually be signed by your primary doctor as well as by the medical director or physician member of a hospice team.
Many people who are living with a chronic disease that has an unpredictable but ultimately terminal course may also want and be able to receive hospice care. In some of these cases, however, Medicare might not cover hospice care costs. People who have AIDS, amyotrophic lateral sclerosis (ALS), emphysema, heart failure, kidney (renal) disease, or Alzheimer's disease -- as well as cancer -- are all eligible for hospice care when their disease has reached an advanced, terminal stage.
People of any age, including children, may receive hospice services. In some areas, there are special hospice programs for children who have cancer or other terminal diseases and for people who have AIDS.
Hospice care programs do not discriminate. Care is provided regardless of age, sex, religion, diagnosis or type of health problem, ethnic or cultural background, or sexual orientation.
People who are facing death often must deal with a variety of complex challenges as well. Treating physical symptoms alone does not necessarily or adequately address or relieve the emotional suffering or family upheaval that can occur. A recent study asked people what aspects of their end-of-life care they considered most important. Overall, the important factors included:
- Pain and symptom control and assurance that future pain and symptoms would be managed.
- Clear and participatory decision-making.
- Preparation for death, with full knowledge of the changes that would occur.
- A sense of completion, which includes spiritual peace, life review, resolving conflicts, spending time with family and friends, and saying goodbye.
- Contributing to the well-being of others.
- Affirmation of the individual as a unique and whole person.
Hospice care helps you address these challenges and approach death with comfort and dignity.
Arranging for Hospice Care
Once you have decided to pursuehospice care you will need to:
- Complete documents to determine your eligibility and insurance coverage and to outline your treatment preferences. These documents include:
- Health care agent or medical power of attorney. For more information, see Choosing a Health Care Agent.
- Living will. For more information, see Writing an Advance Directive.
- Insurance forms. Hospice services are covered by Medicare, by Medicaid in most states, and by many private insurance plans. If you plan to receive Medicare hospice benefits, you and your doctor will need to complete forms. Check with your employer or your health insurance plan for information about what services your plan covers. Many hospices will also help people who cannot pay by applying for money from other sources.
- Legal documents related to finances, property, and other matters.
- Decide what kinds of hospice services you want.
- Each hospice program has its own guidelines and admission rules, such as whether the program will provide artificial (tube or IV) nutrition and fluids. Ask about the guidelines for the programs in your area and how flexible they may be (for example, if they don’t provide a particular service, will they work with another provider who does?). You need to be as clear as possible about your choices and preferences before entering a hospice program. Make a list of what is important to you in a hospice program. Make a list of what is important to you in a hospice program.
- All hospice programs should provide written materials that describe their services, their eligibility guidelines, costs and payment processes, service providers, and the program's insurance and liability information. Ask for this information and read it carefully.
- Identify hospice programs in your area. People and organizations that can help you find hospice programs in your area include:
- Your doctor or hospital
- The medical social worker at your hospital or nursing home
- Your state or local agency on aging
- State health department
- Your insurance provider
- The phone book (look in the yellow pages under “home care” or “hospice”)
- Your state hospice organization
- National organizations such as the National Association for Home Care, the National Hospice and Palliative Care Organization, and the Hospice Association of America. For contact information, see the Other Places to Get Help section of this topic.
- Choose a hospice program. Start by calling some of the programs in your area. Choose the program that best fits your needs by asking questions based on the list you made of what’s important to you.
Once you have enrolled in a hospice program, you will want to:
- Get all billing arrangements, including costs and payment arrangements, in writing, and keep a copy.
- Be sure that your family knows what services you are to receive from the program and what the schedule of those services will be.
- Be sure that everyone in your family knows the names and phone numbers of important contact people at the hospice. Post this information near your telephone.
- Ensure that your family will get the support they need during the time of your hospice care, and also after your death. Choose specific people who will be responsible for notifying family and friends about support group meetings, bereavement counseling opportunities, and other services that the hospice program may provide after a loved one dies.
Where to Go From Here
Write down any questions you have about hospice care to discuss with your doctor during your next visit. If you would like more information on hospice programs, including referrals to programs in your area, see the Other Places to Get Help section of this topic.
Other Places to Get Help
Organizations
American Hospice Foundation
2120 L Street, NW
Suite 200
Washington, DC 20037
Phone: (202) 223-0204
Fax: (202) 223-0208
E-mail: ahf@americanhospice.org
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 website offers information about death and dying and related grief and grieving processes. The “GriefZone” has separate links to categories of readings on grief and kids, grief on the job, hospice information and support, and grief and faith.
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244-1850
Phone: (877) 267-2323 [toll-free], (410) 786-3000
TDD: (410) 786-0727
This federal agency provides guides and other information on hospice care provisions under Medicare and Medicaid.
Hospice Association of America
228 Seventh Street, S.E.
Washington, DC 20003
Phone: (202) 546-4759
Fax: (202) 547-9559
The Hospice Association of America (HAA) seeks to heighten the public visibility of hospice services. HAHA 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 website offers information from the legislative, regulatory, research, legal, and public relations departments, including “Hospice Facts and Statistics.”
National Association for Home Care and Hospice
228 Seventh Street, S.E.
Washington, DC 20003
Phone: (202) 547-7424
Fax: (202) 547-3540
The National Association for Home Care (NAHC) is committed to representing the interests of the home care and hospice community. The National Association for Home Care has a home care and hospice agency locator available on their website or by phone.
National Hospice and Palliative Care Organization
1700 Diagonal Road
Suite 625
Alexandria, VA 22314
Phone: (800) 658-8898, (703) 837-1500
Fax: (703) 837-1233
The 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.
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