A Doctor Gets a Look at What’s Missing From Health Care

Caring for someone with a serious illness stretches people spiritually and emotionally, often beyond what they might have thought possible.

Dr. Arthur Kleinman, a professor of psychiatry and anthropology at Harvard University, calls this “enduring the unendurable” in his recently published book, “The Soul of Care: The Moral Education of a Husband and a Doctor.”

The book describes Kleinman’s awakening to the realities of caregiving when his beloved wife, Joan, was diagnosed with a rare form of early Alzheimer’s disease that causes blindness as well as cognitive deterioration.

Although Kleinman’s specialty is studying how patients experience illness, he wasn’t prepared for the roller coaster of family caregiving. Each time he adapted to Joan’s changing condition, another setback would occur, setting off new crises and fueling uncertainty and stress.

During 11 years of caregiving until Joan’s death in 2011, Kleinman learned that no one who goes through this emerges unchanged. He became…

This content was sourced from KHN.

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