FCRP Policy Statement

One of the major changes families are experiencing due to the transformation of the health care system is getting directly involved in ongoing and supportive care. Whereas in the past, cancer patients often remained hospitalized for longer lengths of time, today patients are discharged while they are still recovering from surgery and experiencing debilitating symptoms and side effects from the cancer and its treatment. Lengthened survival of people with cancer and changes that interfere with the patient's daily self-care and role performance also impact the family.

In the first few weeks after hospital discharge, patients often experience severe symptoms and the family caregiver often suffers a great deal of burden and distress due to the patient's symptom experience. In this study, patients are all over the age of 65. A large percentage of the primary family caregivers of these patients are spouses who are often elderly or infirm themselves. A patient who requires multiple bathroom trips during the night may require physical help in getting out of bed and moving about the household. Likewise, a patient's fatigue or pain might demand readjustment of family roles and redistribution of household tasks.

Table: Most Common Cancer-Related Symptoms as Reported by 465 Study Participants.

The value of patient and family involvement is greater in cancer care than in any other chronic disease. Family caregivers are now providing the majority of continuing and supportive care and taking primary responsibility for the management of patient's symptom experience, administration of medications, and many other care tasks including personal care (bathing, dressing, grooming, etc.), decisions and judgments about care and finances, and the supervision of the patient's overall health status. Family caregivers need and deserve the support and credit their roles demand.

Policy Implications

• Hospital discharge planners should be educated in how to assess patient and family resources and need for support.
• Support (such as tax credits) for family members who provide care for patients should be included in state and federal benefits for health care.
• Community education and support groups to provide the basic knowledge and skills required to provide care should be supported by federal, state, or local programs and funding.
• Legislation should ensure funding exists for community groups and services which link family caregivers with available resources.

From: Given, B.A., & Given, C. W. (In press). Caregiver burden from cancer care. In The Textbook of Psycho-Oncology. New York: Oxford University Press, and Given, B.A. (1995). Family Home Care for Cancer: A Community-Based Model. Paper presentation at Butterworth Hospital, Grand Rapids, MI. Research supported by Family Home Care for Cancer -- A Community-Based Model, Grant #2 RO1 NR/CA01915 and Rural Partnership Linkage for Cancer Care, Grant #5 RO1 CA56338.