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A Team Meeting without the Quarterback

It’s a classic scene: A team meeting about the patient with the person who knows the patient best – the family caregiver – excluded. The only difference is that this team was not made up of doctors, nurses, and social workers; its members were retired football players and the National Football League Commissioner Roger Goodell. As described by George Vescey in the New York Times, the meeting was called to discuss the under-the-radar topic of dementia linked to brain damage suffered in those spectacular tackles that roaring fans applaud.

Two wives – Eleanor Perfetto and Sylvia Mackey – have been vigorous advocates for their husbands with dementia. They have in essence been the quarterbacks of their husbands’ health care teams. Perfetto’s husband, Ralph Wenzel, is now in a nursing home, and Mackey’s husband, John, has been in an assisted living facility since September. They came to the meeting because as Perfetto, a senior director in health policy issues for Pfizer, put it, “My whole purpose is to speak for the players who cannot speak for themselves. There will be a biased point of view if only the healthy ones show up.”

But they, along with everyone but the players and Goodell, were not allowed into the meeting, even though Goodell and Harry Carson, a former Giants player and leader of the retired players, agree that their voices should be heard. The explanation is again classic medical-ese, heard in ICUs and EDs and other high-stress situations: “We can’t speak freely if family members are present.”

The excuse is vintage 1950s: The wives were excluded to protect them from rough language and from discussions of incontinence and impotence – man talk, in other words. While it is certainly appropriate to have private discussions about sensitive topics,  this was not a therapy session. When the NFL asks for advice about these problems, the wives know more than anyone who has not lived with a person with dementia. And as for rough language, if they’ve been around football this long, they’ve heard it all.

The NFL is studying brain damage and taking steps to keep players who have been knocked unconscious on the sidelines (for at least that game). But that doesn’t help the players who were sent back in as quickly as possible, suffered more knocks, and are now at risk for dementia. The NFL is now supporting 97 former players in nursing homes under the “88 Plan,” which pays $88,000 a year for nursing home care. (The figure is inspired by Mackey’s uniform number). Thousands more may be eligible in the future. The NFL should recognize that dementia is a family problem, and make the family caregivers part of the team.

Carol Levine directs the Families and Health Care Project at the United Hospital Fund in New York City.

Published on: December 18, 2008
Published in: Caregiving

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