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

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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.

In 2010, Dr. Slack wrote, “Dialogue between physician and patient continues to be the mainstay of clinical medicine.” Clearly, not all health technology innovators share this narrow focus. Much of today’s emphasis is on securing patient autonomy by enabling faster and more accurate prescriptions, rapid information sharing, reduced paperwork, reduced unnecessary tests, increased reliable follow-through, and privacy and security of information. 

But Slack argued that flawless information management is no substitute for the guidance and advice of a trusted professional when faced with a complex life and death decision. Such was the case in the Schiavo end-of-life debate ensnarled for 15 years in our nation’s courts. A more current example of malign interference is the attempt by Governor Greg Abbott to allow citizen vigilantes to insert themselves into complex individualized decisions by women facing an unintended or unwanted pregnancy.

Health information technology should be both assistive and transformational. Dr. Slack’s contemporary, Canadian-born American biomedical engineer and educator, Edward (Ted) Shortliffe MD. Ph.D. echoed this same theme in an address to the American Philosophical Society in Philadelphia in 1991. He said, “Any effort to anticipate the effect of information technology on relationships between patients and physicians must be viewed in this larger context of social change. Both doctors and patients will be very different… if there is any resulting dehumanization, it will occur because we allow it to happen, not because there is something inherently dehumanizing in the technology itself.”

Must HIT innovators now insert themselves directly into contentious contemporary issues such as abortion rights? No. But Slack would argue that the opportunity for HIT innovators to continue to design products that fully empower contemporary patients does solidly align with the patient’s rights movements, and requires an element of social awareness and engagement in the issues of the day.

Mike Magee, MD is a Medical Historian and Health Economist, and author of “CodeBlue: Inside the Medical Industrial Complex.“