Caring for a patient at home can increase the physical and emotional burdens on the patient's caregivers.

The stress and responsibility of in-home care can be hard on family relationships and should be carefully considered. Day-to-day routines may change for everyone. Many families have trouble getting used to the role changes that result. Patients and families may be referred to counseling to help them with these issues.

Pain control is a key factor in successful home care. Pain medications are given to help patients feel better and are often a part of cancer care. Controlling the patient's symptoms, especially pain, can make things easier on both the patient and the caregivers. It is important that the family and caregivers understand the use of pain control medications and other treatments that keep the patient comfortable.

See the following PDQ summaries for more information:

• Cardiopulmonary Syndromes ¹
• Fatigue ²
• Fever, Sweats, and Hot Flashes ³
• Gastrointestinal Complications ⁴
• Nausea and Vomiting ⁵
• Pain ⁶

If home care is to be considered, the following factors and others will be assessed:

• The kind of care to be given.
• The decision-making skills required by the patient and caregiver.
• Whether equipment needed will fit in the home.
• The family's ability and desire to provide the care, alone or with the aid of home care workers.

This assessment will help determine if care at home is a workable option for the patient.

Transitional care planning will help the patient explore ways to pay for services and care needed.

Medical insurance, Medicare, veteran's benefits, and/or Medicaid may pay some of a patient's medical expenses. These have limits to their coverage, however, and patients may need to find other ways to pay for costs not covered. The costs of home care, for example, are usually covered only under certain conditions and for a limited time.

Transitional care planning will include referrals to community resources that can help the patient plan for treatment costs not met by insurance. Social service agencies may be available to help with certain care needs. Some organizations lend medical equipment (such as wheelchairs and hospital beds), provide short-term assistance with a nursing aid or housekeeper, or provide transportation to and from the doctor’s office or clinic.

For more information about financial resources, contact the National Cancer Information Service (CIS) at 1-800-4-CANCER. The CIS offices have information about cancer-related services and resources that are available in different parts of the country.

Transitional care may include employment counseling for the patient.

People with cancer often want to get back to work. Their jobs give them not only an income but also a sense of routine. Some people feel well enough to work while they are having treatment. Others need to wait until their treatments are over. Patients who have disabilities or other special needs after treatment may not be able to return to their old jobs at all.

Referrals can be made to services that help the patient with job-related issues. These services may include employment counseling, education and skills training, and help in obtaining and using assistive technology and tools.

If a patient does return to work, coworkers may not know what to say or may not know if the patient wants to talk about the cancer. Education of the patient's coworkers about the cancer can help ease this transition.

Advance directives need to move with the patient.

During transitions in care, the patient's advance directives, health care proxy form, and durable power of attorney document need to be given to the appropriate caregivers. This step will ensure that the patient's wishes are known through all disease stages and places of care. (See the Legal Assessment ⁷ section for information about these forms.)

Glossary Terms

A legal document that states the treatment or care a person wishes to receive or not receive if he or she becomes unable to make medical decisions (for example, due to being unconscious or in a coma). Some types of advance directives are living wills and do-not-resuscitate (DNR) orders.

In healthcare, a process used to learn about a patient’s condition. This may include a complete medical history, medical tests, a physical exam, a test of learning skills, tests to find out if the patient is able to carry out the tasks of daily living, a mental health evaluation, and a review of social support and community resources available to the patient.

Any device or technology that helps a disabled person. Examples are special grips for holding utensils, computer screen monitors to help a person with low vision read more easily, computers controlled by talking, telephones that make the sound louder, and lifters to help a person rise out of a chair.

A term for diseases in which abnormal cells divide without control. Cancer cells can invade nearby tissues and can spread to other parts of the body through the blood and lymph systems. There are several main types of cancer. Carcinoma is cancer that begins in the skin or in tissues that line or cover internal organs. Sarcoma is cancer that begins in bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue. Leukemia is cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of abnormal blood cells to be produced and enter the blood. Lymphoma and multiple myeloma are cancers that begin in the cells of the immune system. Central nervous system cancers are cancers that begin in the tissues of the brain and spinal cord.

CIS. The Cancer Information Service is the National Cancer Institute's link to the public, interpreting and explaining research findings in a clear and understandable manner, and providing personalized responses to specific questions about cancer. Access the CIS by calling 1-800-4-CANCER (1-800-422-6237), or by using the LiveHelp instant-messaging service at https://cissecure.nci.nih.gov/livehelp/welcome.asp. Also called CIS.

The CIS is the National Cancer Institute's link to the public, interpreting and explaining research findings in a clear and understandable manner, and providing personalized responses to specific questions about cancer. Access the CIS by calling 1-800-4-CANCER (1-800-422-6237), or by using the LiveHelp instant-messaging service at https://cissecure.nci.nih.gov/livehelp/welcome.asp. Also called Cancer Information Service.

The process by which a professional counselor helps a person cope with mental or emotional distress, and understand and solve personal problems.

DPA. A type of power of attorney. A power of attorney is a legal document that gives one person (such as a relative, lawyer, or friend) the authority to make legal, medical, or financial decisions for another person. It may go into effect right away, or when that person is no longer able to make decisions for himself or herself. A durable power of attorney remains in effect until the person who grants it dies or cancels it. It does not need to be renewed over time. Also called DPA.

HCP. A type of advance directive that gives a person (such as a relative, lawyer, or friend) the authority to make healthcare decisions for another person. It becomes active when that person loses the ability to make decisions for himself or herself. Also called HCP.

PDQ is an online database developed and maintained by the National Cancer Institute. Designed to make the most current, credible, and accurate cancer information available to health professionals and the public, PDQ contains peer-reviewed summaries on cancer treatment, screening, prevention, genetics, complementary and alternative medicine, and supportive care; a registry of cancer clinical trials from around the world; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care. Most of this information, and more specific information about PDQ, can be found on the NCI's Web site at http://www.cancer.gov/cancertopics/pdq. Also called Physician Data Query.

A community resource that helps people in need. Services may include help getting to and from medical appointments, home delivery of medication and meals, in-home nursing care, help paying medical costs not covered by insurance, loaning medical equipment, and housekeeping help.

An indication that a person has a condition or disease. Some examples of symptoms are headache, fever, fatigue, nausea, vomiting, and pain.