NRL News

Maggie’s powerful story raises troubling questions about how people with serious intellectual disabilities are diagnosed and cared for

by | Apr 29, 2016

By Jennifer Popik, J.D., Legislative Counsel, Powell Center for Medical Ethics at the National Right to Life Committee

braininjuredperson6reAs the tragedy of Terri Schindler Schiavo’s death by starvation illustrates, euthanasia advocates have long been quick to dismiss as worthless the lives of those people with intellectual and physical disabilities they label with the dehumanizing term “vegetative.” Even as Canada explicitly targets people with disabilities through legalized active euthanasia; and the campaign to expand the states in which assisted suicide is legal in the U.S. continues, iconoclastic physicians are instead demonstrating the potential to communicate with and provide assistive technology and rehabilitative services to this stigmatized population.

In an article from the May 6, 2016, Newsweek Magazine entitled, “Given the right stimuli, brain activity in patients in persistent vegetative states can bear similarity to non-injured people,” author Don Heupel highlights two separate but related issues related to serious brain injuries.

The first problem is the large number of patients whose brain injuries are misdiagnosed. The second is that these improper diagnoses lead to patients who could greatly benefit from therapies being denied these services on the mistaken basis that they would not work. What is worse, countless numbers of these patient’s erroneous diagnoses have meant an early death.

The Newsweek article focuses on Maggie Worthen, a young woman who was set to graduate college in 2006 when she suffered a massive stroke. Her mother was given the grimmest of predictions that she could never recover, and was pushed to remove a ventilator, forgo feeding and hydration, and even donate her organs. Her mother resisted. According to the article,

About two weeks after the stroke, Maggie regained the ability to breathe on her own. And after another two weeks, she was strong enough to be transferred to a brain rehabilitation facility. With a tracheostomy helping to keep her airway clear and a feeding tube in place, Maggie received intensive physical, speech and occupational therapy each day. Nurses were able to help her sit up in a wheelchair. But when she remained unresponsive and failed to show any outward signs of progress two months later, she was labeled “vegetative,” a diagnosis that disqualified her from insurance coverage for future rehabilitation.

Her parents and close family believed Maggie was trying to communicate with them, but were dismissed as being in denial or having wishful thinking. However, “one doctor questioned Maggie’s diagnosis and arranged for her to be transported to Weill Cornell Medical College in New York City. There, she was enrolled in a clinical trial aimed at understanding how the severely injured brain recovers.”

While under the new care, Maggie was asked simple questions while the neurology team observed brain activity with the use of high-tech imaging. This trial yielded remarkable results.

According to Heupel, “The responses showed, without a doubt, that Maggie was still conscious.” This proper diagnosis enabled Maggie to qualify for rehab where she was eventually able to be in regular communication for the last year of her life. Up to her death in 2015 at age 31 from pneumonia, Maggie was able “to communicate through an assistive device that let her use eye movements to control a computer cursor to select words and predetermined questions.”

Heupel writes

Dr. Joseph Fins, chief of the division of medical ethics at Weill, says Maggie’s experience and that of others like her raise troubling questions about how people with serious brain injuries are diagnosed and cared for. “Patients like Maggie are routinely misdiagnosed and placed in what we euphemistically call ‘custodial care’ where they have no access to any treatments that might help them recover or give them a chance of engaging with others,” says Fins, even as research suggests that 68 percent of severely brain-injured patients who receive rehabilitation eventually regain consciousness and that 21 percent of those are able to one day live on their own.

Dr. Joseph Fins interviewed Maggie’s family along with over 50 other families in similar situations. Almost all their stories shared a common thread – that the injured person was immediately “written off” and families were asked to make “what he calls ‘premature’ decisions about their loved one—such as whether to withhold or withdraw care or to consent to organ donation.”

The article confirmed that this is not an isolated incident. According to the article

[O]ne recent study that found one-third of patients brought to Canadian trauma centers for severe brain injury died within 72 hours following the injury—and nearly two-thirds of those deaths were caused by life support being withdrawn, and not because the trauma progressed to brain death.

“Many patients, probably thousands, have had their food and fluids cut off and died, based on what we now know may well have been mistaken assumptions that they had lost all capacity for consciousness,” Burke J. Balch, director of NRLC’s Powell Center for Medical Ethics, commented.

“This article along with recent studies have shown that modern medicine is coming up with ways to communicate with aware patients who have routinely been dismissed as ‘vegetative,’ much as today eye movements and blinks are used to communicate with some patients with paraplegia.”

This is a problem requiring two sets of solutions. The first problem, misdiagnosis, is theoretically the simpler of the two. In the article, Adrian Owen, a neurologist at Western University in Ontario, Canada recommends using an electroencephalogram (EEG), test which uses electrodes attached to the scalp to directly measure activity of the brain. Heupel explains,

EEG tests have shown that they can demonstrate consciousness undetectable in a bedside test. And because the technology is portable, cheap and doesn’t require a patient’s active participation, Owen sees it becoming a broad screening tool—and a way to make sure patients get the help they need to recover. While neuroimaging can’t prove a lack of consciousness, it can prove consciousness, which can be life-changing.

As for the second issue of treatment, new strides are being made with astounding success daily. The article highlights amazing stories in addition to Maggie’s. Treatment ranging from deep brain stimulation, to off-brand uses of simple sleeping medicines to “reboot” brain activity, to the use of MRI’s and visualization to achieve communication have all begun to gain more widespread use.

Heupel notes

These findings have laid the groundwork for developing computerized devices powered completely by the mind, called brain computer interfaces, that could someday allow for constant communication. “In the meantime,” says Owen, “there are questions we need to ask right away, such as, ‘Are you in any pain?’”

The article closes by quoting Dr. Schiff:

“There are a lot of people out there who could be helped but aren’t…. All patients should be treated as if they too have that same potential for recovery.”

Categories: Brain Injury