"You Know Your Loved One Best" — A Doctor's Case for Speaking Up

We age in an age- un friendly world. Many of us know this from experience: an older family member or friend who has struggled to get the person-centered healthcare they deserve; a loved one for whom social supports in elderhood have been profoundly lacking. Regrettably, however, this fact is not just one of experience but also one from science. Time and again, medical and health services research has shown that our clinics, hospitals, and nursing homes are too often—in painful irony—adverse to older adults' health. And social research has emphasized that within our networks outside of medical care, the challenges of aging are frequently overlooked. A culture that overvalues youth neglects older adults' unique and complex needs. In a recent poll, over 80% of elders felt that the American healthcare system could not address their concerns, with just 11% offering that system an "A" grade.

How do caregivers provide high-quality care against the background of a failing system? This is perhaps the most pressing question facing both caregivers and care-receivers today—for someone can be the most extraordinary caregiver, and yet feel powerless in an unsupportive climate. It is this juxtaposition of family-based care and system-based neglect that led Kate Washington, in her moving (indeed, jolting) book Already Toast, to ponder her "invisibility" as a caregiver. As if providing meaningful, effective care for her husband was not enough of a challenge, she writes that what "chafed me the most" was:

The public, official [demands] from nurses, doctors, and therapists, many of whom seemed to discount my personhood in any other realm than as a caregiver. I wanted them to recognize my humanity. I felt, on every level, unseen in my life, even as I was holding together the lives of four people. The longer I acted as a caregiver, the angrier I found myself at that erasure.

Caregivers feel erased when systems provide poor and insufficient care, expecting care partners to pick up the slack. In such an environment, neither the humanity of the care recipient nor that of the caregiver is honored.

Geriatricians often receive inquiries from caregivers of their patients, who open their request with an apology: "Doctor, I am so very sorry to bring this up, but…" As clinicians, our response must be to welcome their advocacy: "No apology necessary!" We tend to think of "advocacy" as something that community organizations do. While that's certainly true, advocacy is also personal. I can think of countless times when a caregiver has brought to my attention something I might have overlooked, or has (unnecessarily apologetically) worried about an apparent subtlety, the downstream effects of which would have been anything but subtle. My response is usually something along the lines of "You know your loved one best." Knowing the real world of the care recipient is indispensable.