Online Books > Helping People Cope: A Guide For Families Facing Cancer

Physical Comfort And Emotional Support

The physical and emotional problems you may experience with advanced cancer are best handled by skilled doctors, nurses, social workers, and other health-care team members working together with you and your family. People often think that someone with advanced cancer must be hospitalized to be comfortable. Fortunately, the hospice movement has resulted in more and more people being cared for in their homes. Most hospice programs require that a person have a "primary caregiver," which means that one or more family members are available to provide care. Family members can be taught to do things like give medication, provide catheter care, or prepare and apply dressings. While this may seem frightening at first, the hospice nurse will work with family members until they are comfortable doing these things. The hospice nurse will visit your home frequently to be sure that you are comfortable and will communicate with your doctor about any problems that may develop. Caring for someone with advanced cancer can be difficult, which is why the hospice staff works with the entire family.

Sometimes people and their families cannot talk easily with one another because of their fears about the future. If young children are involved, they may be confused or resentful because the parent's illness has interrupted their lives. With elderly couples, the spouse of the person with cancer may have health problems that are being neglected. The hospice nurse or social worker will address these problems so that families can continue providing care and support for their loved one.

1. Provide pain management so that the patient is able to live pain-free.

2. Provide help in how to treat and avoid skin problems caused by being confined to bed.

3. Give advice about diet so that strength is maintained. If nausea is present, medications are given to control that.

4. Provide help with bowel and bladder problems that can result from side effects of medications, the illness itself, problems with nutrition, or inactivity.

5. Provide emotional support and practical advice for family members.

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

2. If your doctor is not aware of a hospice program in your community, call the Hospice Information and Referral Service for Pennsylvania, 1-800-658-8898. Also ask your local Visiting Nurses Association if it provides hospice care, or ask your local American Cancer Society for help in finding hospice care.

3. Hospice services are available from hospitals (usually they only accept their own patients into their hospice program), home-health agencies (Visiting Nurses Associations or private agencies), some nursing homes, community-based programs, or, in rare cases, a special institution that admits patients.

4. Occasionally a program will state that it delivers hospice care when it really does not. Minimal requirements for quality hospice programs are: (1) medical direction for symptom management; (2) 24-hour availability; (3) a team of professionals who will come to your home; (4) bereavement and volunteer services. A general guideline: Ask if the program is accredited by the Joint Commission on Accreditation of Health Care Organizations (JCAHO) or if it is a Medicare-certified hospice.

• Hospice care is not for everyone. For example, some cancers are medically difficult to manage at home and require 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 person's and the family's wish, it should be respected. Some families resent what may appear to be an intrusion into their lives by a hospice team. This feeling usually changes as people get to know one another. 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 comfortable as possible and enjoy the best quality of life despite your advanced illness.

• When people live with an illness for a long time, they often are tired and the simplest problems may appear to be overwhelming. A hospice program can offer important relief to families facing a serious illness.

• Uncontrolled pain is unnecessary. See PAIN CONTROL for more information.

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