Ken Connor
Erring on the side of life
By Ken Connor
The history of human knowledge as it relates to the human body is a fascinating and terrible thing. In every age, the ability for physicians and other medical practitioners to effectively treat wounds or combat disease has been constrained by the technology – or lack thereof – available at the time. In the past, people often died from illnesses or injuries that are quite treatable today. Over the centuries, we've come a long way. Our understanding of human physiology and biology has enabled us to improve quality of life and extend life expectancy beyond anything our ancestors could have imagined.
Despite our advances, however, there remains a great deal that we don't fully understand. The human brain, in particular, represents a vast frontier of mystery. There's much we've learned, but for all our progress, it seems we've hardly scratched the surface of understanding this most complex of human organs. Unfortunately, it is often the most vulnerable among us who pay the price of our ignorance. In the mid-20th century, neurologists were certain they had discovered a cure for mental illness in lobotomy. But for the victims of this procedure, the price of scientific inquiry was often disastrous.
Thankfully, victims of mental illness no longer have to fear involuntary lobotomy or other ghastly experiments, but there are still vulnerable people who are paying a high price for our lack of understanding of how the human brain works. Patients diagnosed as being in a persistent vegetative state have long been written off by the medical community as a lost cause – a waste of medical resources. In the name of compassion, the families of such individuals have been counseled to withhold nutrition and hydration. They have been assured that their loved one is completely unaware of their surroundings and past any hope of recovery. Sometimes this course of action is pursued even when family members insist that they see signs of responsiveness and awareness in their loved one. The Terri Schiavo case is one such example. Terri's parents spent hours each day with their daughter and insisted that she was responsive; her husband insisted that she was a vegetable and past any hope of meaningful recovery. After a bitter legal battle, Terri's husband prevailed and his wife's feeding tube was removed. It took Terri Schiavo 14 days to die from starvation and dehydration.
Terri's husband (who had found comfort in the arms of another woman) insisted he was doing right by his wife. He insisted that she would not have wanted to live in a persistent vegetative state. He maintained that his wife was completely unaware of her surroundings, incapable of perceiving her situation, virtually dead already. In recent years, however, there have been some remarkable stories of individuals diagnosed as being in a persistent vegetative state who have regained consciousness. Martin Pistorious is one such example. After a progressive disease rendered him unable to move or speak, doctors determined that the boy was in a persistent vegetative state and advised that his parents let him die. From NPR:
"But he didn't die. 'Martin just kept going, just kept going,' his mother says. His father would get up at 5 o'clock in the morning, get him dressed, load him in the car, take him to the special care center where he'd leave him. 'Eight hours later, I'd pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I'd wake up to turn him so that he didn't get bedsores,' Rodney says. That was their lives, for 12 years. Joan vividly remembers looking at Martin one day and saying: 'I hope you die' . . . . And she didn't think her son was there to hear it. But he was.
'Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,' says Martin, now age 39 and living in Harlow, England. He thinks he began to wake up when he was 14 or 15 years old. 'I was aware of everything, just like any normal person,' Martin says. But although he could see and understand everything, he couldn't move his body. 'Everyone was so used to me not being there that they didn't notice when I began to be present again,' he says. 'The stark reality hit me that I was going to spend the rest of my life like that – totally alone.'"
Pistorious' story is not unique. There are several documented cases of individuals believed to be "brain dead," individuals for whom the prospect of an agonizing death by starvation and dehydration was a real possibility if not for the faithfulness of their caretakers. Unfortunately, for every lucky person who was allowed to live long enough to make their state of consciousness known, untold numbers of individuals have likely been allowed to wither and die. A study published in the medical journal The Lancet last year indicates that people diagnosed in PVS (persistent vegetative state) may have a much greater level of awareness than the diagnosis implies. This raises significant ethical concerns surrounding the decision of whether to continue life sustaining measures for these patients. In the words of Dr. Steven Laureys, lead physician on the study, "if life support and feeding are to be withheld, 'we better get it right.'"
These cases of mistaken diagnoses demonstrate why we should err on the side of caution in protecting the lives of people whom some would otherwise be inclined to dispose of because of brain damage. Clearly, we have not yet arrived at the point where we fully understand how the brain functions after injury. "Persistent vegetative state" is not a diagnosis that can be made with certainty, and this means that sometimes we're getting it wrong, and people are being sentenced to the worst kind of death: condemned to starve and dehydrate while completely aware of what's happening, unable to speak out or communicate a desire to live.
This issue magnifies a foundational principle animating the pro-life movement: the belief that the right to life is the foundation of all other rights, the right without which no other right can exist. From this conviction flows the belief that a just society is bound to protect its most vulnerable members, including the very young (the unborn), the very old, the sick, and the disabled. This does not mean that people should not be able to make end of life decisions for themselves, however. On the contrary, people should give great consideration to how they would like to be treated if they find themselves in a coma or a persistent vegetative state and they should make their wishes known through what are known as advance directives or living wills. People have a right to forbear medical treatment if they choose, but that right should be exercised by the patient and not by a third party who stands to gain from their demise or is ignorant of their views on the subject.
Recognizing our fallibility, society should err on the side of preserving innocent life. Conflicting hearsay and self-interested decision making should not suffice to end the life of another, as it did in the Terri Schiavo case. The consequences of being wrong are simply too great.
© Ken Connor
January 21, 2015
The history of human knowledge as it relates to the human body is a fascinating and terrible thing. In every age, the ability for physicians and other medical practitioners to effectively treat wounds or combat disease has been constrained by the technology – or lack thereof – available at the time. In the past, people often died from illnesses or injuries that are quite treatable today. Over the centuries, we've come a long way. Our understanding of human physiology and biology has enabled us to improve quality of life and extend life expectancy beyond anything our ancestors could have imagined.
Despite our advances, however, there remains a great deal that we don't fully understand. The human brain, in particular, represents a vast frontier of mystery. There's much we've learned, but for all our progress, it seems we've hardly scratched the surface of understanding this most complex of human organs. Unfortunately, it is often the most vulnerable among us who pay the price of our ignorance. In the mid-20th century, neurologists were certain they had discovered a cure for mental illness in lobotomy. But for the victims of this procedure, the price of scientific inquiry was often disastrous.
Thankfully, victims of mental illness no longer have to fear involuntary lobotomy or other ghastly experiments, but there are still vulnerable people who are paying a high price for our lack of understanding of how the human brain works. Patients diagnosed as being in a persistent vegetative state have long been written off by the medical community as a lost cause – a waste of medical resources. In the name of compassion, the families of such individuals have been counseled to withhold nutrition and hydration. They have been assured that their loved one is completely unaware of their surroundings and past any hope of recovery. Sometimes this course of action is pursued even when family members insist that they see signs of responsiveness and awareness in their loved one. The Terri Schiavo case is one such example. Terri's parents spent hours each day with their daughter and insisted that she was responsive; her husband insisted that she was a vegetable and past any hope of meaningful recovery. After a bitter legal battle, Terri's husband prevailed and his wife's feeding tube was removed. It took Terri Schiavo 14 days to die from starvation and dehydration.
Terri's husband (who had found comfort in the arms of another woman) insisted he was doing right by his wife. He insisted that she would not have wanted to live in a persistent vegetative state. He maintained that his wife was completely unaware of her surroundings, incapable of perceiving her situation, virtually dead already. In recent years, however, there have been some remarkable stories of individuals diagnosed as being in a persistent vegetative state who have regained consciousness. Martin Pistorious is one such example. After a progressive disease rendered him unable to move or speak, doctors determined that the boy was in a persistent vegetative state and advised that his parents let him die. From NPR:
"But he didn't die. 'Martin just kept going, just kept going,' his mother says. His father would get up at 5 o'clock in the morning, get him dressed, load him in the car, take him to the special care center where he'd leave him. 'Eight hours later, I'd pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I'd wake up to turn him so that he didn't get bedsores,' Rodney says. That was their lives, for 12 years. Joan vividly remembers looking at Martin one day and saying: 'I hope you die' . . . . And she didn't think her son was there to hear it. But he was.
'Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,' says Martin, now age 39 and living in Harlow, England. He thinks he began to wake up when he was 14 or 15 years old. 'I was aware of everything, just like any normal person,' Martin says. But although he could see and understand everything, he couldn't move his body. 'Everyone was so used to me not being there that they didn't notice when I began to be present again,' he says. 'The stark reality hit me that I was going to spend the rest of my life like that – totally alone.'"
Pistorious' story is not unique. There are several documented cases of individuals believed to be "brain dead," individuals for whom the prospect of an agonizing death by starvation and dehydration was a real possibility if not for the faithfulness of their caretakers. Unfortunately, for every lucky person who was allowed to live long enough to make their state of consciousness known, untold numbers of individuals have likely been allowed to wither and die. A study published in the medical journal The Lancet last year indicates that people diagnosed in PVS (persistent vegetative state) may have a much greater level of awareness than the diagnosis implies. This raises significant ethical concerns surrounding the decision of whether to continue life sustaining measures for these patients. In the words of Dr. Steven Laureys, lead physician on the study, "if life support and feeding are to be withheld, 'we better get it right.'"
These cases of mistaken diagnoses demonstrate why we should err on the side of caution in protecting the lives of people whom some would otherwise be inclined to dispose of because of brain damage. Clearly, we have not yet arrived at the point where we fully understand how the brain functions after injury. "Persistent vegetative state" is not a diagnosis that can be made with certainty, and this means that sometimes we're getting it wrong, and people are being sentenced to the worst kind of death: condemned to starve and dehydrate while completely aware of what's happening, unable to speak out or communicate a desire to live.
This issue magnifies a foundational principle animating the pro-life movement: the belief that the right to life is the foundation of all other rights, the right without which no other right can exist. From this conviction flows the belief that a just society is bound to protect its most vulnerable members, including the very young (the unborn), the very old, the sick, and the disabled. This does not mean that people should not be able to make end of life decisions for themselves, however. On the contrary, people should give great consideration to how they would like to be treated if they find themselves in a coma or a persistent vegetative state and they should make their wishes known through what are known as advance directives or living wills. People have a right to forbear medical treatment if they choose, but that right should be exercised by the patient and not by a third party who stands to gain from their demise or is ignorant of their views on the subject.
Recognizing our fallibility, society should err on the side of preserving innocent life. Conflicting hearsay and self-interested decision making should not suffice to end the life of another, as it did in the Terri Schiavo case. The consequences of being wrong are simply too great.
© Ken Connor
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