Hospice Care

Topic Overview

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 might you choose hospice care?

The goal of hospice treatment is to keep you comfortable and improve your quality of life while you are dying. This philosophy is a shift from usual medical treatments, in which health professionals strive to cure your disease. 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 24 hours a day, 7 days a week, in your own home or in a hospice center. Some hospices also offer services in nursing homes, long-term care facilities, or hospitals.

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.
• Counseling and support for your loved ones after you die.

Who is involved with providing hospice services?

Most of the time, hospice care is provided in your home. A family member or loved one will generally look after you much of the time. And someone from your hospice team will usually visit you for an hour or so one or more times a week. Your loved ones will work with the hospice team to give you the best care possible.

Hospice teams usually include a doctor and nurses, social workers, spiritual advisors, nursing assistants, and trained volunteers. It may also include pharmacists, respiratory therapists, psychologists, psychiatrists, music therapists, physical therapists, and occupational therapists. If you have an emergency or get scared, you can call the 24-hour hospice number for advice. When necessary, a nurse can usually come to your home at any time of the day or night.

Some people worry about losing touch with their regular, trusted doctor. But being on hospice does not mean that you won't see your regular doctor. He or she can work with others on your team to stay involved in your care.

Are you eligible for hospice services?

Eligibility for most hospice programs is based on two criteria:

• Your condition is considered incurable. This is called a terminal illness.
• Your doctor has indicated that your life expectancy is 6 months or less if your illness runs its normal course. Usually a form must be signed by your primary doctor as well as the medical director or physician member of a hospice team.¹

It can be hard for doctors to know how long a person will live. Some people live longer than expected. If you live longer than 6 months, you can continue on hospice. If your illness gets better, you can stop receiving hospice care.

Hospice care programs do not discriminate. Care is provided regardless of age, sex, religion, diagnosis or type of health problem, ethnic or cultural background, sexual orientation, or ability to pay.

Payment for hospice services is covered through Medicare and most Medicaid programs. Most, but not all, private insurance programs offer a hospice benefit. 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.

Frequently Asked Questions

Considering Hospice Care

You may want to consider hospice care if:

• You have a disease or illness that is expected to shorten your life.
• 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 families choose to pursue aggressive medical care up to the end.

By choosing hospice, you decide to stop trying to cure your illness and to focus instead on comfort and quality of life. If you are at home, your hospice team will prepare your caregivers to cope with almost anything that could happen at home. But this does not mean that you cannot go to a hospital. 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.

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 Medicaid, is based on two main criteria:

• Your condition is considered incurable. This is called a terminal illness.
• Your doctor has indicated that your life expectancy is 6 months or less if your illness runs its normal course. A form must usually be signed by your primary doctor as well as the medical director or physician member of a hospice team.¹

It can be hard for doctors to know how long a person will live. Some people live longer than expected. If you live longer than 6 months, you can continue on hospice. If your illness gets better, you can stop receiving hospice care.

Hospices usually take patients who are declining in their health and daily functioning. This means that the patient may need help with activities of daily living and isn't eating or moving around very well. The goal is to live out a natural life without artificial medical assistance. Medical care is provided to give 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.

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. There are guidelines for terminal diseases that have an unpredictable course. People who have AIDS, amyotrophic lateral sclerosis (ALS), emphysema, heart failure, kidney (renal) disease, or Alzheimer's disease 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, sexual orientation, or ability to pay.

Many complex challenges face a dying person. Treating physical symptoms alone does not take care of emotional suffering or family upheaval. A recent study asked people what aspects of their end-of-life care they considered most important. Overall, the important factors included:²

• 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 could occur.
• Completion, including spiritual peace, life review, resolving conflicts, spending time with family and friends, and saying good-bye.
• 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 as comfortably and with as much dignity as possible.

Receiving Hospice Care

Hospice is a comprehensive program with services for people who are seriously ill and not expected to recover. When you decide to be cared for by a hospice program, you acknowledge that your treatment goals will shift from doing everything possible to cure your condition to helping make the rest of your life as comfortable and high-quality as possible.

You do not 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. If needed, these services may include help with bathing, dressing, and eating as well as medicine and treatment for all symptoms, including pain and anxiety.

Hospice teams, which consist of medical professionals, counselors, therapists, social workers, spiritual advisors, home health aides, and trained volunteers, are 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.
• Give your caregivers a break (respite care). Trained volunteers may be available to relieve your loved ones for a few hours a week. If your caregivers need a longer break or must be away to attend a special event, some hospices provide respite care for several days.

Counseling and support services that hospice 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.

Arranging for Hospice Care

When you have decided to pursue hospice care, you will need to:

1. 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 the topic Choosing a Health Care Agent.
   • Living will. For more information, see the topic 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.
2. 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 clear about what you want before entering a hospice program. Use a checklist (What is a PDF document?) to record what is important to you in a hospice program.
   • 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.
3. 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.
4. 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 your checklist (What is a PDF document?) .

After you have begun the hospice program, you will want to:

• Get all billing arrangements in writing, including costs and payment arrangements, and keep a copy.
• Be sure that your family knows what services you are to receive from the program and the schedule.
• 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 after you die. Choose one person 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

Related Information

• Care at the End of Life
• Choosing a Health Care Agent
• Grief and Grieving
• Palliative Care
• Writing an Advance Directive

References

Citations

1. Kinzbrunner BM (2002). How to help patients access end-of-life care. In BM Kinzbrunner et al., eds., 20 Common Problems in End-of-Life Care, pp. 29–45. New York: McGraw-Hill.

2. Steinhauser KE, et al. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10): 825–831.

Other Works Consulted

• 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.

• McCarthy EP, et al. (2003). Hospice use among Medicare managed care and fee-for-service patients dying with cancer. JAMA, 289(17): 2238–2245.

• Rakel RE, Storey P (2002). Care of the dying patient. In RE Rakel, ed., Textbook of Family Practice, 6th ed., pp. 131–147. Philadelphia: W.B. Saunders.

• Sadock BJ, et al. ( 2007). Death, dying, and bereavement. In Kaplan and Sadock's Synopsis of Psychiatry, Behavioral Sciences/Clinical Psychiatry, 10th ed., pp. 61–69. Philadelphia: Lippincott Williams and Wilkins.

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