HomeoldMaggie’s powerful story raises troubling questions about how people with serious intellectual...

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

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The recent tragedy of Terri Schiavo’s death by starvation serves to illustrate the long-standing tendency of euthanasia advocates to dismiss the lives of those with intellectual and physical disabilities, whom they dehumanise by labelling as ‘vegetative’. Despite the explicit targeting of people with disabilities through legalised active euthanasia in Canada and the ongoing campaign to expand the states in which assisted suicide is legal in the U.S., there are a number of physicians who are demonstrating the potential to communicate with and provide assistive technology and rehabilitative services to this stigmatised population.

In an article from the 6 May 2016 edition of 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 issue is that these misdiagnoses result in 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 misdiagnoses 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 informed that her daughter’s condition was terminal and that she should consider removing a ventilator, forgoing feeding and hydration, and even donating her organs. However, her mother resisted these suggestions.

Approximately two weeks following the cerebrovascular accident, Maggie demonstrated the capacity to independently regulate her respiratory function. After a further two weeks, she was sufficiently recovered to be transferred to a brain rehabilitation facility. With the assistance of a tracheostomy, which maintained an unobstructed airway, and a feeding tube, Maggie underwent intensive physical, speech, and occupational therapy on a daily basis. The nurses were able to assist her in sitting up in a wheelchair. However, two months later, she remained unresponsive and failed to show any outward signs of progress, leading to her being labelled “vegetative,” a diagnosis that disqualified her from insurance coverage for future rehabilitation.

Her parents and close family members believed that Maggie was attempting to communicate with them, yet they were dismissed as being in denial or harbouring unrealistic expectations. Nevertheless, one physician queried the diagnosis and arranged for Maggie to be transported to Weill Cornell Medical College in New York City. Subsequently, she was enrolled in a clinical trial with the objective of elucidating the mechanisms underlying the recovery of the severely injured brain.

During her period of observation under the new care, Maggie was asked simple questions while the neurology team monitored her brain activity with the use of high-tech imaging. The trial yielded remarkable results.

Heupel further states that the responses demonstrated with certainty that Maggie was still conscious. This accurate diagnosis enabled Maggie to qualify for rehabilitation, where she was eventually able to communicate regularly for the last year of her life. Up to her death in 2015 at the age of 31 from pneumonia, Maggie was able to communicate through an assistive device that enabled her to 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, states that 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 frequently misdiagnosed and placed in what we euphemistically refer to as ‘custodial care’, where they have no access to any treatments that might assist them in recovering or engaging with others,” states Fins, despite evidence suggesting that 68% of severely brain-injured patients who receive rehabilitation eventually regain consciousness, with 21% of these individuals being able to live independently in the future.

Dr. Joseph Fins conducted interviews with Maggie’s family, along with over 50 other families in similar situations. The majority of the narratives revealed a commonality in the experiences of the families, namely that the injured individuals were swiftly deemed irrecoverable and that the families were compelled to make hasty decisions regarding their loved ones, such as whether to withhold or withdraw care or to consent to organ donation.

The article confirmed that this is not an isolated incident. The article also cites a recent study which found that one-third of patients brought to Canadian trauma centres for severe brain injury died within 72 hours following the injury. Of these deaths, nearly two-thirds were caused by life support being withdrawn, rather than the trauma progressing to brain death.

“It is likely that thousands of patients have had their food and fluids withheld and subsequently died as a result of erroneous assumptions that they had lost all capacity for consciousness,” commented Burke J. Balch, director of the NRLC’s Powell Center for Medical Ethics.

This article, in conjunction with recent studies, has demonstrated that contemporary medicine is developing methods of communication with cognizant patients who have historically been regarded as “vegetative,” a designation that has been applied to individuals with paraplegia who exhibit eye movements and blinks.

This is a problem that requires the implementation of two distinct 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 the use of an electroencephalogram (EEG), a test which uses electrodes attached to the scalp to directly measure the activity of the brain.

Heupel elucidates that EEG tests have demonstrated the capacity to demonstrate consciousness that is undetectable in a bedside test. Furthermore, the technology is portable, inexpensive, and does not necessitate the patient’s active participation. Owen anticipates that it will become a broad screening tool and a means of ensuring that patients receive the assistance they require to recover. While neuroimaging cannot prove the absence of consciousness, it can demonstrate consciousness, which can have a profound impact on the course of treatment.

With regard to the second issue of treatment, new advances are being made with remarkable success on a daily basis. The article also presents a number of other cases, in addition to that of Maggie. Treatment options have expanded to encompass a range of approaches, including deep brain stimulation, the use of off-brand sleeping medications to “reboot” brain activity, and the integration of MRI scans and visualization techniques to facilitate communication.

Heupel notes that these findings have established the foundation for the development of computerised devices powered entirely by the mind, known as brain computer interfaces, which could potentially facilitate constant communication in the future. In the interim, Owen notes that there are immediate questions that must be addressed, such as whether the patient is experiencing pain.


Daniel Miller is responsible for nearly all of National Right to Life News' political writing.

With the election of Donald Trump to the U.S. presidency, Daniel Miller developed a deep obsession with U.S. politics that has never let go of the political scientist. Whether it's the election of Joe Biden, the midterm elections in Congress, the abortion rights debate in the Supreme Court or the mudslinging in the primaries - Daniel Miller is happy to stay up late for you.

Daniel was born and raised in New York. After living in China, working for a news agency and another stint at a major news network, he now lives in Arizona with his two daughters.

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