Each year, over a million American citizens experience a brain injury. Indeed, brain injury is the leading cause of disability worldwide. However, injuries vary widely in severity, and many patients will recover to some extent, although it may require months or years of rehabilitation.
As a society, we should stop treating such people as a throwaway commodity. We should instead support families and their loved ones through the long recovery process. Most importantly, however, we should remind each other to love the brain-injured family member unconditionally, regardless of their prognosis or progress.
For disabled people, many of whom the healthcare industry would give up on, there is real hope. Scientists and medical researchers are tirelessly exploring the complexities of the brain to develop new therapies that can improve and support recovery.
Recently, for instance, researchers have discovered the brain’s ability to “rewire” itself after an injury—a process called neuroplasticity. Scientists and the medical community are also learning ways to help the brain to heal. At Columbia University, researchers found that seriously brain-injured persons may have a hidden consciousness, where they may have some degree of awareness despite appearing unconscious. Just last week, a groundbreaking study using deep-brain stimulation devices provided hope for those struggling with recovery. The growing consensus within the medical profession is that the brain needs time to heal after an injury.
As our knowledge of the brain and its healing process evolves, so does medical guidance concerning rehabilitation. In 2021, JAMA Neurology, a monthly medical journal published by the American Medical Association, researchers concluded that decisions regarding withdrawing life-sustaining treatment for certain types of brain-injured patients should not be made in the early days following the injury.
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The JAMA Neurology study followed a 2018 review by the American Academy of Neurology (AAN), updating their guidelines for disorders of consciousness. It was determined that current ICU practices are based on “flawed and outdated information.” The AAN recommended that for the first 28 days after a patient’s brain injury, physicians “must avoid statements” suggesting the patient has a poor or hopeless prognosis.
The consensus based on both science and morality is clear—quick determinations to stop care prematurely or fail to provide adequate opportunity for the patient to recover have never been more reckless.
However, working as patient advocates for almost 20 years, we receive regular calls from families who are in crisis because they are being pushed to stop treatment just days—or even hours—after their loved one is admitted to the hospital with a brain injury. As the impulse of such families is to trust the doctors, there is no way of knowing how often treatment is terminated hastily after following medical advice.
In fact, due to the publicity around the case of my sister, Terri Schiavo, families have shared that they are being frightened into ending care for their loved ones. This can happen after doctors use abhorrent fear tactics, alluding to Terri’s condition as the motive to stop treatment, with comments such as, “Do you want to care for someone who will end up like Terri Schiavo for the rest of their life?”
For those who do not remember, Terri had a mysterious accident in 1990, at the age of 26, while at home with her husband, Michael Schiavo. She went several minutes without oxygen, resulting in brain injury. Terri was not in a coma, was not “brain dead,” and did not need the assistance of any “machines” to live. However, she had difficulty swallowing and needed a feeding tube for food and water. She was as alive as anyone who is reading this article right now.
To deceivingly use Terri’s condition to persuade a family to end their loved one’s life is unethical, immoral, and downright evil, especially when they are already under immense emotional distress and confronted with making a decision that can never be changed. It also contradicts the prevailing best practice guidelines that patients should be afforded an extended period for rehabilitation and therapy.
It is also why, after Terri’s death, my family established the Terri Schiavo Life & Hope Network, a nonprofit foundation to work as patient advocates. We felt called to help families who were in similar circumstances as mine, being subjected to the withdrawal or denial of care for loved ones. You can be assured that there is a problem in healthcare since, in the 18 years since we started, thousands of families have contacted us seeking help to protect their loved ones.
Aside from our main objective to help families, another is our never-ending battle to correct the inaccuracies that are frequently regurgitated about Terri’s condition, particularly by the media.
Just one example was a 90-minute documentary chronicling my sister’s case, produced by Latchkey Films and released on December 3 (Terri’s birthday) by MSNBC. This documentary misrepresented her case and condition through partial and inaccurate reporting.
In 1992, the moment Terri’s husband, Michael Schiavo, decided he was going to kill his wife, the lies began. He lied about his intention to care for Terri for the rest of his life in a 1992 medical malpractice lawsuit. He went on to perjure himself to the court in 2000, testifying that Terri allegedly made comments that she didn’t want to live disabled. Michael lied about her brain-injured condition, and that Terri did not respond to the rehabilitation she was receiving. He lied about my parent’s motives, and he lied about what happened the night of Terri’s unexplained accident. I could go on.
The truth is Michael’s lies can be easily verified. However, the media decided otherwise, and as this new documentary demonstrated, it continued to echo false information, conveniently omitting significant facts about Terri’s case.
The media’s dereliction of duty in responsibly reporting Terri’s case and condition is not accidental. Terri’s case became politicized by mostly pro-life allies, conservative Christians, and Republicans—groups that the media disdains—and this was all they needed to support Michael’s position and the right-to-die narrative that was being pushed. In short, it turned the story of a human tragedy into a political football.
The media was not interested in reporting the truth of Terri’s case, including the undeniable human tragedy that a woman was forcibly starved and dehydrated to death over 13 agonizing days. They shamelessly deceived the public by pretending Terri’s death was an act of “compassion” rather than reporting a story of horrific abuse.
The medical profession should follow its own guidance and give families the necessary time to make decisions—while also continuing to pursue new avenues of research—instead of simply handing out death sentences.
Families should not be forced to make quick decisions and pronounce loved ones as having a “hopeless” condition when—in many cases—this has been proven to not be the final or accurate prognosis.
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