Hidden Decision Makers

Family caregivers are critical to health care delivery because they are hidden decision makers. Here is why they need to be taken seriously by the health care system and integrated into the way health care services are delivered:

The health care system, by and large, is focused on a single relationship—that between doctor and patient. The doctor/patient relationship is exclusive. This makes sense as far as it goes. In confidence, the doctor diagnoses and prescribes treatment for illnesses. But a productive doctor/patient relationship requires accurate feedback. Ideally, the patient should be able to describe symptoms and other experiences that happen between periodic visits to the doctor. Such information helps frame the doctor’s understanding of the patient’s total health environment—all the personal and social factors that influence wellness and care outcomes.

 Older patients especially do not always have this capacity. It could be because of pain, medication, memory loss, or mental decline. It may be that they can’t even get to treatment without assistance. The point is that caregivers come into the treatment picture for a reason.  That reason is diminished capacity on the part of the patient. Caregivers are often required to take on duties that result in decision-making —decisions that determine whether or not a patient adheres to “doctor’s orders.”  This can include recommendations such as monitoring of vital signs, maintaining medication schedules, managing diet and exercise, and even keeping follow-up appointments. As the patient’s helper and closest observer, the family caregiver is in an excellent position to provide details that enable full understanding of the environment, habits, preferences, and other factors that influence a patient’s treatment outcomes.

Determining exactly how family caregivers can best contribute to increasing health care efficiency and improving outcomes will be a process. There are three sides to this triangular relationship: the provider perspective, the patient perspective, and the caregiver perspective. They are all important and interconnected. One thing is for sure. As the population continues to get older, family caregivers will become more visible as factors in health care delivery. Their mostly unacknowledged role as decision makers will expand. And those decisions will have an increasing impact on health care outcomes.

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