Hospice Care

Topic Overview

What is hospice care?

Hospice is for people who are near the end of their life. It provides treatment to relieve symptoms. The goal is to keep you comfortable, not to try to cure your disease. Hospice care does not speed up or lengthen dying. It focuses on easing pain and other symptoms.

Hospice care also offers emotional help and spiritual support when you are dying. And it helps caregivers manage the practical details and emotional challenges of caring for someone who is dying.

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.

Why choose hospice care?

There are many reasons why you might choose hospice care. You might choose it if treatment for your disease has become more of a burden than a benefit. Or you might choose hospice if you want to focus on comfort rather than medical treatments.

What kind of services are provided?

Hospice care generally includes:

• Basic medical care with a focus on pain and symptom control.
• Access to a member of your hospice team 24 hours a day, 7 days a week.
• 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 take care of you.
• Volunteer support. Volunteers may do things such as prepare meals or run errands.
• Counseling and support for your family and friends to help them grieve.

Who is involved with hospice?

A team will manage your care. This team includes a doctor, nurses, a social worker, and trained volunteers. A family member or loved one may look after you much of the time. Other professionals may help, such as a dietitian, a counselor, a physical therapist, or a spiritual adviser.

Are you eligible for hospice services?

Usually, two things must be true for you to be eligible for hospice care:

• Your illness can't be cured. This is called a terminal illness.
• Your doctor expects that you'll live 6 months or less if your illness runs its normal course. You'll likely need a form signed by your primary doctor and the medical director or physician member of a hospice team.

You don't need to be confined to a bed or in a hospital to benefit from hospice.

It can be hard for doctors to know how long someone will live. Some people live longer than expected. If you do live longer than 6 months, you can keep having 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 who can't pay.

Considering Hospice Care

The last stages of a serious illness can be hard. You may feel like you have lost control over your life and what will happen to you.

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.

You may want to choose hospice care if:

• You have a disease or illness that is expected to shorten your life.
• Treatment for your disease has become more of a burden than a benefit.
• You want to spend the time you have left in a setting of your choice, such as your own home.
• You want to focus on comfort rather than medical treatments.
• You want family and friends to take part in your care.
• You want your loved one who has a serious illness to die comfortably at home.

Who is eligible

Usually, two things must be true for you to be eligible for hospice care:

• Your illness can't be cured. This is called a terminal illness.
• Your doctor expects that you'll live 6 months or less if your illness runs its normal course. You will likely need a form signed by your primary doctor as well as the medical director or physician member of a hospice team.

You don't need to be confined to a bed or in a hospital to benefit from hospice care.

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 keep having 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 who can't pay.

Hospice care for special situations

Some people are living with a terminal illness that isn't 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 may have hospice care when their disease has reached an advanced stage if they have:

• Cancer.
• AIDS.
• ALS.
• Emphysema.
• Heart failure.
• Kidney disease.
• Alzheimer's disease.

Many people who are living with a disease that has an unpredictable but still terminal course may also want and be able to get 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.

The goals of hospice

The goal of hospice is to keep you as comfortable as possible during the time you have left. You will get medical care to provide comfort rather than to prolong life. Hospice workers will keep you as alert and pain-free as they can.

For example, chemotherapy may no longer be used to cure your cancer. But you might get it 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 family and friends, rather than in a hospital, hooked up to one or more machines.

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Receiving Hospice Care

Hospice care often includes:

• Basic medical care with a focus on pain and symptom control.
• Access to a member of your hospice team 24 hours a day, 7 days a week.
• Medical supplies and equipment as needed.
• Counseling, social, and grief support for you and your family.
• Guidance with the difficult, but normal, issues of end-of-life and closure.
• A break (respite care) for caregivers, family, and others who take care of you.
• Volunteer support.

Your hospice team can:

• Help with advance directive forms and making sure that your wishes about life support and CPR (cardiopulmonary resuscitation) are carried out.
• Answer questions about palliative treatments, which relieve pain and other symptoms.
• Help you with things like daily activities, bathing, eating, and moving around.
• Help you figure out what is important in terms of putting your legal and financial affairs in order.
• Help you and your family talk to each other and deal with difficult emotions.
• Give your caregivers a break (respite care). Trained volunteers may be able to relieve your caregivers 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.

Hospice also provides counseling and support services. They can help you to:

• Resolve differences with family and friends. Or they can help you to say important things that may otherwise go unsaid.
• Review your life and set goals for the time you have left.
• Explore spiritual issues.

Hospice care also includes helping your family members grieve after you die. Most programs will provide bereavement services for those close to you for at least a year after your death. Services include things like support groups and counseling,

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Arranging for Hospice Care

You will need to fill out some forms for hospice care. These include:

• An advance directive. This usually includes:
  • A medical power of attorney.
  • A living will.
  These forms may be called something else in your state.
• Insurance forms. Hospice services are covered by Medicare and by Medicaid in most states. They are also covered by many private insurance plans. Check with your employer or your health insurance plan about the services your plan covers. Many hospices will also help people who can't pay.
• Other legal documents related to finances, property, and other matters.

After you start the hospice program, you will want to get all billing arrangements in writing. This includes costs and payment arrangements. Be sure to keep a copy.

Be sure that your family knows:

• What services you are to receive from the program.
• What the schedule is.
• The names and phone numbers of important contact people at the hospice.

Choosing a hospice program

Your doctor or a member of your care team may refer you to a hospice program. If not, you can ask your doctor.

Or you may choose a hospice program yourself. To start, call some of the programs in your area. People and organizations that can help you find hospice programs include:

• Your doctor or hospital.
• The medical social worker at your hospital or nursing home.
• Your state or local agency on aging.
• Your state health department.
• Your insurance provider.
• Your state hospice organization.
• The National Hospice and Palliative Care Organization.

All hospice programs should provide materials that describe their services. This includes who provides the services, who is eligible, how much it costs, and how to pay. And they should describe the program's insurance and liability information. Ask for this information. Read it carefully.

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