The United Hospital Fund's Family care-giving Initiative is an opportunity for hospitals, along with community partners and family caregivers, to systematically review what can be accomplished in a particular setting and to implement new programs. Public and private insurance plans and managed care organizations should evaluate benefits and service plans to reflect the importance of training, supporting, and communicating with family caregivers. Additional, limited paid help for training or respite at critical points in the course of the patient's care may reduce these undesirable consequences. More research is urgently needed to understand the impact on family caregivers of changes in the health care system and on interventions that families need and want. Although there is a vast literature on family caregivers, most of it focuses on a health care system that no longer exists, on the needs of the frail elderly, and on conventional family structures.
Much more research is needed.
This is not about helping families cope with common ailments, the miseries of the flu, the inconvenience of a broken wrist, or the emergency of an appendectomy. It is about helping those who are often the lifelines for the cognitively impaired elderly, the seriously ill, the severely handicapped and those who need continuous intervention to survive and flourish. While it is understandable that heroic families are praised, public policy should not be based on an expectation of martyrdom. This agenda is about devising responsible and reasonable ways to respect, understand and help all families coping with serious illness.