If You Need: Hospice Services

The physical and emotional problems you may experience with advanced cancer are best handled by skilled physicians, nurses, social workers, and other health care team members. The health care team will work with you and your family.

Hospice care is a service offered to very ill patients and their loved ones when there is no hope of the cancer being cured. The patient at this stage is expected to live months instead of years. The health care team and the person with cancer and his or her family will shift their focus to comfort and control of symptoms.

People often think that patients with advanced cancer must be in the hospital to be comfortable. The hospice movement has changed this. People are being cared for in their homes even with advanced cancer.

Most hospice programs require one person to be the "primary caregiver." This means that one or more family members must be available to provide care. Family members can be taught to do things like:

Give medicine
Give care with catheters
Prepare and apply dressings

While this might seem scary at first, the hospice nurse will work with family members until they are confident doing these things. The hospice nurse will visit your home often to be sure you are comfortable. The nurse will also talk to your physician about any problem that may arise. Caring for someone with advanced cancer can be difficult, which is why the hospice staff works with the entire family.

Sometimes your family cannot talk easily with each other because of fears about the future. If young children are involved, they may become confused. The children may feel angry or resent the ways that the parent's illness has interrupted their lives.

Older couples have problems too. The spouse of the person with cancer may have health problems that are being ignored. The hospice nurse or social worker can address these problems so families can keep giving care and support for their loved one.

How Physical Care And Emotional Support Services Can Help

Provide ways to manage pain so that the patient is able to be free from pain
Provide help and instruction in treating and avoiding skin problems caused by being confined to bed
Give advice about diet and nutrition in order to maintain strength. Provide medicine for control of problems like nausea.
Provide help with bladder and bowel problems that can result from:
* Side effects of medicine
* The disease itself
* Problems with diet and nutrition
* Not being physically active
Provide emotional support and practical advice for family members
Provide grief and mourning counseling

How Do You Find These Services?

Talk to your doctor, nurse, or social worker to see if hospice care is right for you. If you are still being treated to cure your disease, you do not need hospice care. However, people in hospice programs may receive radiation or chemotherapy to control symptoms.

Your doctor may not be aware of a local hospice program.

Information about hospice programs is available from:

Your local American Cancer Society Unit
National Hospice Organization at 1-703-243-5900 (There may be a long distance charge for this call.)
Your local Visiting Nurses Association

Hospice services are available from certain:

Hospitals (Many hospital hospice programs accept only their own patients.)
Home health care services (Visiting Nurses Associations or private agencies)
Nursing homes
Local hospice programs
Hospice hospitals or hospice care centers

Occasionally, a program will state that it gives hospice care when it really does not. In order to provide good hospice care, a program must include:

Medical care to manage symptoms
Availability of help on a 24-hour basis
A team of trained hospice workers who will come to your home
Grief counseling and volunteer assistance services

Ask if the hospice program:

Is approved by the Joint Commission On Accreditation Of Health Care Organizations
OR
Is a Medicare "certified" hospice

Helpful Hints

Hospice care is not for everyone. For instance, some cancers are too difficult to manage at home and the patient needs hospital or nursing home care. Some families are too upset to care for a person at home or cannot provide this kind of care.

Sometimes people want to keep trying for a cure even when their disease is in an advanced stage. If that is the wish of the patient and the family, it should be respected.

Some families resent what may seem to be interference into their lives by a hospice team. This feeling often goes away as people get to know each other. You are the best judge of what is right for you or your family. If you are not sure what would be helpful, talk it over with someone on your health care team.

Hospice care does not mean you are giving up on life. It does mean that you want to be as pain free and comfortable as possible. It means you want to enjoy life, as best you can, despite your advanced illness.

When people live with an illness for a long time, they are often tired. The simplest problems may become too much to handle. A hospice program can offer relief to families facing a serious illness.

Uncontrolled pain is unnecessary. Pain management program or hospice program will teach you and your family about the proper amount of medication that will give you relief without danger or harm. If you need more information about pain, call your local American Cancer Society and ask for the booklet "Questions and Answers About Pain Control."

If your physician is not able to control you pain, ask to be referred to a pain control specialist or pain clinic. To ask about physicians who have advanced training in the area of pain control, call the Cancer Information Service at 1-800-4-CANCER.

This Fact Sheet is adapted from the book, Helping People Cope: A Guide for Families Facing Cancer, written by Joan F. Hermann, ACSW, Sandra L. Wojtkowiak, RN, MSN, Peter S. Houts, Ph.D., and S. Benham Kahn, MD, and supported by the Pennsylvania Cancer Control Program of the Pennsylvania Department of Health; 1990 Revised Edition.

c 1993, American Cancer Society Inc.

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