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“Playing Doctor” – A Cautionary Tale From Health IT Pioneers.

By MIKE MAGEE

Warner Vincent Slack, MD, a pioneer of medical informatics, was a Professor of Medicine at Harvard Medical School in the Division of Clinical Informatics. When he died in 2018 at age 85, his memoriam read:

“For over 50 years, Dr. Slack conducted pioneering research on the use of computers in the medical world and was one of the founders of medical informatics. His goal was to empower both doctors and patients by improving the communication between them.”

Followers of Dr. Slack have labored hard over the past half-century to design solutions that will strengthen rather than weaken the bonds of the patient-physician relationship. But as he suggested at multiple points throughout his career, this goal becomes exponentially more difficult if politicians are allowed to “play doctor” with citizens’ lives.

His awareness of the fallout of the Terri Schiavo “right to die” case, beginning a dozen years after his seminal publication of  “Patient Power: A Patient Oriented Value System”, likely cast a long shadow on his optimistic vision. The case spanned 15 years, as it rode the poor health and disability of one unfortunate woman literally into her grave with devastating consequences for all concerned. 

As the Supreme Court readies itself to serve up opinions in the Texas vigilante and Mississippi abortion cases, the Schiavo case remains a cautionary tale that deserves a careful review. Here’s a quick summary:

  • Theresa Marie Schindler was born in a Philadelphia suburb on December 3, 1963.
  • Terri married her husband, Michael in 1984 and moved to Florida to be close to her parents. 
  • On February 25, 1990, suffering from an eating disorder, she collapsed in the lobby of their apartment, was resuscitated, and hospitalized.
  • Her husband, Michael, was made legal guardian on June 18, 1990. Two physicians independently declared her in a “permanent vegetative state.” A gastric feeding tube was inserted.
  • In mid-1993, Michael signed a Do Not Resuscitate (DNR) order.
  • In May 1998, he filed a petition to remove the feeding tube.
  • The parents challenged the removal in court and lost. The tube was finally removed on April 24, 2001.
  • The parents charged Michael Schiavo with perjury, and a judge ordered the tube reinserted 2 days later.
  • On September 17, 2003,  the appellate judge ordered the feeding tube removed for a second time.
  • Operation Rescue/Right to Life extremist Randall Terry began daily public demonstrations at the care facility.
  • The Florida legislature passed “Terri’s Law”, allowing Gov. Jeb Bush to order the feeding tube surgically reinserted for the third time.
  • On May 5, 2004, “Terri’s Law” was declared unconstitutional.
  • Senator Mel Martinez’s (R-FL) political career was damaged irreparably when memo’s revealed he played politics with the issue.
  • Senator Bill Frist’s hopes for the presidency went up in smoke on March 17, 2005, when he declared on the Senate floor, “I question it (vegetative state) based on a review of the video footage which I spent an hour or so looking at last night in my office.”
  • President Bush transferred the case to Federal Courts. The Federal Court agreed with prior State Court Appeals.
  • Terri Schiavo’s feeding tube was removed a final time on March 24, 2005. She died at a Pinellas Park hospice on March 31, 2005.
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What Happens Next? 2.0 Edition

Those of us who worry about the government creeping into all our lives can now stop fussing and fighting, cry it all out, and move on to implementing the Affordable Care Act (ACA).

But first, we need two core competencies: the ability to integrate health information across providers AND (soon thereafter) the ability to separate signal from noise.

Both of these competencies will require a propagation of the cloud. Let me explain why.

Our work in the health care (EHR) marketplace remains the same as if the ACA had been reversed…and it’s the same work we SHOULD have done years ago. That is, to treat the information that gets generated during the provision of care as if the consumer was actually paying for it. Because, in fact, they ARE paying for it and always have been—but the disintermediation by both third-party payers and the government has allowed us, as providers of health care services, to get pretty sloppy with the information that gets created in the name of client care.

While they are becoming more empowered, consumers haven’t throttled us during those instances when they must submit to a second test because the first result got fumbled somewhere in the care chain. Now, as each state goes for the federal dollars provided to them in the Affordable Care Act (ACA), they’ll feel greater pressure to…well…not lose information, and be able to provide it to any appropriate care giver who needs it. All while still trying to balance their budgets.

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