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Medicare, Hospice and Tuskeegee

Posted Aug 26 2008 4:08pm
It is perhaps a truism that the sickest require the most medical care. Americans have a tradition of bravely fighting to the end; some would say well past the time the end was obvious.

The sad state of palliative care in the US is a case in point. We don't even call it palliative care, we call it hospice, a term that needs re branding if ever I heard one. It conjures images of people left to die with no treatment save for pain medications.

It seems that there is a health disparity in the US defined for African-Americans' use of hospice . I call it the Tuskeegee syndrome.

African-American mistrust of the health care system goes far deeper than secret experiments undertaken on military pilots that did not stop until less than 35 years ago. The offer of comfort care to a black man from a white doctor is couched in layers of history and symbolism. Of course it's worse in a system that limits the kind of care that can be offered to a hospice patient. It does not look like palliation, it looks like giving up.

I had the opportunity to participate in hospice care for a brief time in Canada where it was considered active care for people who had no reasonable expectation of cure. We got a tumor lasered from a cancer victim's trachea, as a comfort measure. Suffocation and drowning in your own blood is not OK, even if you're silly with morphine.

I tried the same here once. The static was unbelievable. Maybe there are reasons that nearly one-half of Medicare's entire budget is spent on the last year of life? Perhaps if Americans dies with more grace and there was an ounce of trust between patients and hospice providers, the outcome would be different.
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