Caring for the Caregivers

This blog excerpt is from The New York Times, where author Pauline W. Chen, describes the difficulties caregivers go through for their loved ones.

For all our assertions about the importance of caring in what we do, doctors as a profession have been slow to recognize family members and loved ones who care for patients at home. These “family caregivers” do work that is complex, physically challenging and critical to a patient’s overall well-being, like dressing wounds, dispensing medication, and feeding, bathing and dressing those who can no longer do so themselves.

Many of these caregiving tasks were once the purview of doctors and nurses, a central component of the “caring professions.” But over the past century, as these duties increasingly fell to individuals with little or no training, doctors and even some nurses began to confer less importance, and status, to the work of caregiving.

It comes as no surprise, then, that physicians now rarely, if ever, learn about what a family caregiver or health care aide must do unless they are faced with caring for their own loved ones. We doctors don’t know or aren’t always fully aware of what it takes to care for a patient after we leave the room.

In other words, for the 37 million people attending to the health care needs of a relative, partner, friend or neighbor, our best care goes only so far.

“If you look at the amount of time devoted to actual caregiving, the physician contributes a very modest amount,” said Dr. Arthur Kleinman, a professor of medical anthropology and psychiatry at Harvard Medical School and now a family caregiver himself.

“We’ve had outstanding diagnoses and very careful attention to defining the problem,” Dr. Kleinman said, referring to his own experience. “But once the problem is defined and the limited pharmacological interventions prescribed, there has been neither interest nor knowledge about the rest of the aftercare, even in the most simple parts like finding a home health aide or getting a needs assessment by a social worker.”

But our profession’s indifference may hopefully soon be a thing of the past.

In January 2010, the American College of Physicians, the country’s leading professional organization of internal medicine physicians,

issued its first position paper on working with caregivers. Endorsed by almost a dozen other professional medical organizations, the paper, published in The Journal of General Internal Medicine, highlights the challenges that can arise from the complex interaction among patient, doctor and caregiver and offers guidelines for providing the best care.

Using a framework of broad principles, like the need to respect and maintain a primary focus on the patient’s rights, dignity and values, the paper explores specific issues that are likely to arise in a given patient-doctor-caregiver relationship. How, for example, should physicians approach long-distance family caregivers? What should they consider when working with the caregiver of a terminal patient? How can they best support the caregiver who is convinced that he or she can never do “enough”?

(Entire article can be read here)

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