The importance of caring for caregivers

Mr. B, the patient who first stirred my interest in family medicine, was a spry former World War Two fighter pilot who came to the ER complaining of an irregular heart beat. I remember him regaling me with stories about the Battle of Britain while his wife dutifully stood by his side in the chaos of the crowded emergency room at a private hospital affiliated with my medical school. It was just my third clinical rotation.

Early the next morning, Mr. B suffered a stroke, a common complication of atrial fibrillation. As a result, he lost the use of most of the left side of his body and sank into a deep depression. Later, after there was nothing more to do in the way of acute care, my medical team transferred Mr. B to a rehabilitation facility down the street. There, I continued to monitor and encourage his slow and painful progress for several more weeks. Later that year, when I applied to family medicine residency programs, my care for Mr. B became the core story of my application essay. I had decided to join a medical specialty that cared for the "whole person," rather than a single body part or organ system, and in my mind, helping Mr. B recover from his complex illness was the perfect example of what family doctors do best.

The essay worked - I was accepted to my first choice residency program. But looking back on that episode now, more than a decade later, I realize that I missed a crucial piece of the story. I never thought to ask Mr. B's wife, his primary caregiver, how she was faring. What personal trials must she have gone through in caring for her formerly independent husband and coming to terms with this permanent change in his health and its effect on their daily lives? I can only guess, but I'll never know.

Two recent magazine pieces written by caregivers describe how hard it is to support a loved one suffering from chronic illness. In "Letting Go of My Father," reporter Jonathan Rauch tells the story of struggling to care for a father with a rapidly progressive neurological condition, and his belated discovery that many friends and colleagues were encountering the same challenges with an elderly parent. In "On Caregiving," psychiatrist and medical anthropologist Arthur Kleinman relates how caring for a spouse with Alzheimer's disease taught him more about "the moral core of caregiving" than a lifetime of patient care and academic research. Kleinman observes:

Caregivers protect the vulnerable and dependent. To use the experience-distorting technical language: they offer cognitive, behavioral, and emotional support. And because caregiving is so tiring, and emotionally draining, effective caregiving requires that caregivers themselves receive practical and emotional support.

Such support can be offered by family physicians and a variety of other professionals. It would have helped a great deal if as a medical student I'd known that there were established office tools for assessing "caregiver burden," including emotional and physical health. An article in this week's Los Angeles Times provides useful advice and resources for caregivers, including practical tips on confirming the diagnosis, financial and legal planning, and elder care support services. The author's most important tip: "don't go it alone." To that, I'd add that primary care clinicians should do everything we can to recognize and address the needs of caregivers, not only for the well-being of patients like Mr. B, but to sustain the health of their families and communities.