It’s a simple reality that many patients who are not actively dying are nonetheless described as facing “end of life” issues, often simply due to physical or cognitive disabilities.
This is particularly true for patients diagnosed with “Unresponsive Wakefulness Syndrome,” the terminology doctors and patient advocates increasingly prefer to the more pejorative “Persistent Vegetative State” language — though both describe patients with diminished autonomy.
Why would one’s disabilities cause some medical challenges to be termed “end of life” issues? Our modern, utilitarian-minded culture judges one’s “quality of life” by asking “What can you do?” And if it’s judged that you can’t “do” enough, your “quality of life” is said to be “poor” and what for others would be considered basic health issues become strangely re-characterized as “end of life” issues.
Terri Schiavo, notably, was diagnosed PVS shortly after her 1990 collapse and was consequently referred to as a “vegetable” (implication: non-human) in the media. Otto Warmbier, more recently, was instead diagnosed UWS and, even as he died from undisclosed complications resulting from his political imprisonment in North Korea, was spoken about in a way that generally respected his basic humanity. If these two cases can be held up as examples, they illustrate the good and laudatory way in which UWS reduces the overt marginalization of patients with cognitive disability.
Unlike Otto, however, who was presumably reliant on extraordinary life support by the time he returned home, most patients, like Terri, diagnosed UWS, rely on no medically extraordinary care — and indeed, the only “life support” they require is food and water. This is often delivered by a feeding tube because in most cases such patients have lost the memory of how to swallow.
Their situation is sometimes misrepresented as if it were tantamount to supplying oxygen to an otherwise terminal patient whose body is shutting down.
Patients experiencing UWS can be better understood to be experiencing forms of physical and cognitive disability, in contrast to the dreary and misleading portrayal of them as actively suffering, near-death patients.
Since as many as 48 percent of such diagnoses may turn out to be incorrect, and as many as 10 percent or more of such patients ultimately emerge from UWS into an improved state of cognizance, it’s worth asking what “unresponsive wakefulness” means, if it doesn’t mean that someone is facing an end-of-life issue.
Terri Wallis lived for 19 years in an unresponsive state of minimal consciousness after suffering injuries from a vehicle crash. His abrupt and unexpected recovery began with his first word in nearly two decades: “Mom.”
Martin Pistorius was diagnosed as “vegetative” after coming home from school as a boy with a sore throat and slipping into unresponsiveness. Martin lived for more than a decade with full awareness but an inability to meaningfully communicate before recovering and sharing his story.
Patricia White Bull was diagnosed vegetative and unable to communicate meaningfully after complications from the birth of her son. One day, after 16 years in this state, while a nurse was adjusting her blankets, Patricia unexpectedly exclaimed, “Don’t do that!”
These are three distinct, remarkable stories, but each shares the themes of hopefulness and surprise. Each patient required a resilient and continual love, emotional patience and mental fortitude from their families and their caretakers. Their recoveries could not have been precisely anticipated, in the way that we know, more or less, that a child’s birth will surely follow nine months of pregnancy.
What was essential in their recoveries from the standpoint of their families and caretakers was, first, a willingness to acknowledge a certain powerlessness — We cannot always make our loved ones better by our own power — and, second, a willingness to embrace uncertainty about their ultimate fate — Are they still really ‘with us’? Will they ever fully recover?— yet an even stronger willingness to live hopefully and with the sort of care that could provide an environment for life and for recovery.
Every person intuitively knows in his or her heart that what makes the special people in our lives so special is not what they do for us, but instead who they are. Every person who matters to us is a gift, always unearned, and often unexpected, whose particular value is incalculable and priceless.
Yet our medical culture is designed increasingly to also be an accounting culture, which necessarily introduces some temptation to view those for whom it was originally created to care unconditionally not as gifts, but as products.
In aggregate, this results in treating patients as a sort of raw human material whose potential future worth, just like a rising or falling stock, dictates their present value.
For example, unresponsively wakeful persons are not “attractive investments” in a profit-driven medical and accounting culture, and this means that families facing such a diagnosis will have to be particularly brave in providing the sort of safe havens and environments for potential recovery from which Terri Wallis, Martin Pistorius and Patricia White Bull each benefited in their own way.
For a society wishing to be humane, no “unresponsively wakeful” patient who is not dying can be allowed to fall victim to an imposed death of starvation and dehydration by removal of so-called “artificial” food and water. It is neither a natural nor a simple way to die.
On the other end of the life spectrum, Sheva Givre provides beautiful witness to the basic dignity of every human person, regardless of circumstance, in sharing a lesson from raising her daughter Rozie. In an era of prenatal testing influenced by a utilitarian ethic whose purpose is to end the lives of disabled persons in the womb, girls like Rozie face the same challenge that so many UWS patients face in the eyes of physicians and family decision makers: a label of diminished moral status due to diminished autonomy and physical condition.
Yet Sheva writes: “Raising a child with Down syndrome is wonderful and amazing because having children is wonderful and amazing. It makes you realize that a mother’s love is not based on a child’s ability, but on your own ability to accept and give.”
To be accepted and to receive care and attention is what every person diagnosed UWS deserves in a society that claims to care for the disadvantaged, the underprivileged and the vulnerable.
Bobby Schindler is president of the Terri Schiavo Life & Hope Network and an associate scholar with the Charlotte Lozier Institute. Tom Shakely is executive director of the Terri Schiavo Life & Hope Network.
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