"Virtually Brain Dead"
When is a person no longer considered alive?
More than two years after a little girl from Massachusetts was almost a casualty of the Department of Social Services due to a misguided ethic grounded in quality of life instead of sanctity of life, the story has taken a fascinating turn. Haleigh Poultre, first thought to be more cognitively impaired than Terri Schiavo, is beginning to communicate. It is reported that she has begun to describe the abuse which subsequently almost led to her state ordered death. Contrary to doctors' assertions that she was "virtually brain dead," Haleigh is very much alive and her continuing recovery only strengthens the message of the article below which was published soon after Haleigh's close call with death.
"A day after the state's highest court ruled that the Department of Social Services could withdraw life support from a brain-damaged girl, the agency said yesterday that Haleigh Poutre might be emerging from her vegetative state." Boston Globe January 19, 2006
As I was contemplating the first anniversary of the death of Terri Schiavo on March 31 and wondering what the lasting legacy of her death might be, I was struck by a news story that is possibly more disturbing than even her saga.1
The Story of Haleigh Poutre
Haleigh Poutre is a little girl from Massachusetts who almost did not live to her 12th birthday. On September 11, 2005, after years of abuse, Haleigh was beaten nearly to death by her aunt and stepfather. She lay in a vegetative state, unable to breathe on her own, tethered to both a respirator and feeding tube. She immediately came under the control of the state, with a court appointed guardian.
Within eight days of her near fatal beating, the Department of Social Services (DSS), who had virtually ignored more than a dozen reports of physical abuse and neglect over the previous few years, applied to the courts to have her life-support removed with the agreement of Haleigh's court-appointed lawyer.2 The request to remove the respirator was approved by Juvenile Court Judge James G. Collins on October 5.
In an ironic twist, it was her stepfather, the man who had nearly killed her, who petitioned the court to leave her on life-support. One need not be a great jurist to realize that the death of Haleigh Poutre would likely to have led to a murder indictment of the stepfather. Nevertheless, his appeal to the Supreme Judicial Court pushed off implementation of the court order until January 17, when the court ruled in favor of DSS.3
The day after the decision to remove the respirator, Haleigh began breathing on her own.
The Supreme Judicial Court, in upholding the lower court order allowing removal of life support, accepted the brief filed by DSS lawyer Virginia Peel, which stated that Haleigh "is in an irreversible and permanent coma, with the least amount of brain function that a person can have and still be considered alive."4 Medical testimony seemed unanimous that Haleigh was so severely brain-damaged that not only could she could not possibly recover, but that she was barely alive. The Boston Globe reported:
Last fall, doctors described Haleigh as being in a persistent vegetative state and "virtually brain dead," district court records said. Physicians said her brain stem was severely injured, leaving her unable to think or feel and in an "irreversible coma," according to an opinion Tuesday [January 17] by the Supreme Judicial Court.5
However, the day after the higher court upheld the decision to remove the respirator, an embarrassed Department of Social Services reported that Haleigh began breathing on her own and was responding to simple commands. The following day, the Boston Globe reported that "[b]efore yesterday's disclosures, Haleigh was thought to have more serious brain damage than Schiavo, in part because she was not breathing on her own."6 As one may imagine, the unfolding story brought tremendous adverse publicity to the DSS and the explanations and excuses began flowing. Haleigh was subsequently transferred to a rehabilitation hospital for continued therapy.
The Lessons of Indifference
My intention is not to lambaste the Massachusetts Department of Social Services. Their workload is likely overwhelming and their work is surely difficult and underappreciated. Clearly, there was a string of lapses going back several years that are inexcusable, but not completely unexpected.
I am more concerned with the lesson we learn from the Haleigh Poutre saga and what it tells us about our approach to life and death. I would sleep much better if I believed that the chain of events that almost led to Haleigh Poutre's death were innocent mistakes. It would be easier to deal with a lab error or a lapse in judgment. But, I think the underlying failure in this case came about because the lives of the mentally handicapped are simply not valued in our utilitarian society.
As I argued one year ago, my primary issue with the Terri Schiavo episode was that instead of rational arguments for ending her life, there was an underlying sense that one must be crazy to care about someone who could not think. I appreciate the complexity of end of life issues and recognize that there is legitimate debate among good-intentioned people regarding how to deal with those questions.
It is a major leap from terminal illness to valueless life.
But it is a major leap to go from terminal illness to valueless life. To debate and discuss how aggressively to treat a patient with an incurable disease is healthy. To discuss ending the lives of people because we see no value in their continued existence is reprehensible. When the lawyer for Haleigh's stepfather requested that the court obtain the medical opinion of a neutral physician, the judge said, "When you have consistent medical opinions, why do you have to find a doctor who might challenge that?"7
You have to look for a doctor who might challenge that because a little girl's life is on the line. When one values something, one is pained by even the possibility of its loss. America has a long history of recognizing that a life need not be pleasant to be deemed valuable. For example, on July 7, 1865, on the day the Lincoln assassination conspirators were to be hanged, sentries were posted between the White House and the prison where the executions were to take place, ready to relay the news to the executioners, in the unlikely event that President Johnson would grant last minute pardons.8 Such an action for such morally repugnant assassins was not performed because the conspirators were liked, but because of recognition that extinguishing life is a very serious matter and all actions must be taken to avoid unnecessary killing.9 It is not the individual that necessarily deserves respect; it is human life itself that deserves respect.
Mere potential threats to our civil liberties are taken very seriously. This is because of the very natural fear our rights will be eroded slowly, on a case by case basis and that we will not recognize what we have lost until it is too late.
There is an inherent feeling of anger when a criminal who confesses to a heinous crime cannot be prosecuted because of a legal "technicality." Who would not be angered that the admission of guilt is not admissible in court because the accused did not have legal counsel when he made his confession? But on further consideration, we tolerate such situations since we fear that not scrupulously defending the rights of defendants will lead us down a path toward tyranny. Our legal system is predicated upon the idea that it is better to release 10 guilty people than incarcerate one innocent one.
Respecting human life is analogous. It is very easy to look at an individual person in a persistent vegetative state and feel that their life has no value and continuing their life is "wrong." But our respect for life, like our respect for our civil rights, demands that we judge based on the bigger picture. Without a very clear line in the sand, it is impossible to recognize, except in retrospect, when we have gone too far in devaluing human life and crossed the threshold into the realm of state-sponsored murder.
Genocide does not start with overt murder; it starts with devaluing the lives of unwanted members of society.
Genocide does not start with overt murder; it starts with devaluing the lives of some unwanted or unpopular members of society and follows a downward spiral to depravity. Often, as in the case of Nazi Germany, the first group to be disposed of is the disabled, particularly the mentally handicapped. The arguments for euthanasia are always euphemistic and always couched in language suggesting that we are killing the individual for their own good. We never propose murder, we propose "mercy-killing" and allowing the patient to "rest." We wish to end the suffering of people who might not be experiencing any pain whatsoever.10
We are already near the bottom of the slippery slope. Thirty years ago the New Jersey Supreme Court made the revolutionary decision in the case of Karen Ann Quinlan that respirators may be removed from brain damaged patients, but the feeding tube was left in place, for how could one consider starving someone to death?11 In 1990, the Supreme Court of the United States established the principle that a feeding tube may be removed from a PVS patient if there is "clear and convincing evidence"12 that the patient desired such an outcome, for how could one starve someone to death without very compelling evidence of their wishes? In 2005, in a very contentious public case, the courts allowed removal of a feeding tube from Terri Schiavo despite the lack of written advanced directives. In that case, the parties seeking to disconnect the patient, principally her husband, had several serious conflicts of interest13 and the legal decision was made based on the recollections of her husband (and others) of off-handed comments, only seemingly recalled many years after the patient entered her PVS state.
So while the thought of attacks on our rights brings out the civil libertarians, the same concern is not demonstrated when innocent human lives are being threatened. As we will see, the case of Haleigh Poutre demonstrates that we had even farther to fall even after Terri Schiavo, who was at least an adult who theoretically could have had an opinion about her care before her collapse.
The Rest of the Haleigh Poutre Story
Reading the chronicle of events as they unfolded tells a very troubling tale. Soon after it was made public that Haleigh began showing signs of recovery, it was also reported that the improvements had begun a week before the Supreme Judicial Court had issued its ruling to allow removal of the respirator, but that despite the Department of Social Services knowing of the improvements, they did not inform the court.
In fact, the Boston Globe reported on February 7, 2006 that "Susan Molina, executive director of the Yellow Ribbon Kids Club, said yesterday that she filed a complaint against DSS lawyer Virginia Peel, saying Peel had not told the Supreme Judicial Court that Haleigh, 11, was starting to breathe on her own and was showing increased responsiveness."14
When the state Department of Social Services Commissioner Harry Spence was confronted with this information, he claimed that the doctors had misled him and that "his agency did not tell the state's highest court that Haleigh Poutre might be getting better because doctors convinced him that she would never recover from a vegetative state."15
Spence said Haleigh was showing signs of responsiveness about a week before the Supreme Judicial Court granted permission to remove her life support. But he said Haleigh's doctors reported that her movements were not a sign she would recover. "When there was evidence there were signs of improvement, we insisted the doctors reexamine Haleigh and come back to us," Spence said yesterday in a telephone interview. "They absolutely affirmed that the chances of her recovery were absolutely zero. There was nothing for us to report to the SJC."
While it is difficult to know where the truth lies, one might suppose that in their rush to extubate Haleigh and remove her feeding tube, there may not have been an attempt on the part of DSS to obtain the best medical information.
Or perhaps the story is really even more disturbing.
Physicians misinterpreted Haleigh's signs of improvement as irrelevant.
In the most charitable scenario, the courts relied in good faith on DSS to provide accurate information regarding the prognosis of Haleigh Poutre. In turn, the DSS relied upon the doctors to provide accurate medical information. Not only did the physicians misinterpret Haleigh's early signs of improvement as irrelevant, but they committed a far worse breach of ethics.
The doctors, the only people with the expertise to judge the medical situation, did not advocate for their patient. It is well known in medicine that the brains of children are very resilient, far more so than those of adults. The words of the Boston Globe are again enlightening.
Several neurologists say that many brain-injured patients recover some consciousness, but often not for several months or more, causing families frequently to delay for months before making the heart-rending decision of whether to continue life support and come to grips with their own definition of what constitutes a life worth saving.
"Three weeks is early with what we know can happen with recovery," said Dr. Nancy Childs, executive medical director of Texas NeuroRehab Center in Austin, Texas, who has been working with brain-injured patients for more than 20 years.
Childs said statistics show that 52 percent of brain-injured adult patients recover consciousness a month after their trauma and that 16 percent recover after three months. She also said that, in general, brain-injured children, with their growing and elastic brains, "have a better outcome" than brain-injured adults.
There are many factors that impact the prognosis of patients with severe brain injury, including length of oxygen starvation, scan findings, and rapidity of onset of symptoms.16 But even for patients with severe brain injury leading to a vegetative state, standard medical care would usually require at least several months, not several days, before the doctors could conclusively determine that there would be no further improvement. How could the doctors make the assessment within eight days that a comatose child who suffered trauma would remain permanently vegetative when the definition of persistent vegetative state is at least one month17 of coma and children tend to have a better prognosis than adults? Where was the motivation to err on the side of recovery?
I am forced to the conclusion that her life just did not matter enough to take the time necessary to do a proper evaluation and her severe brain damage did not merit erring on the side of interpreting her spontaneous breathing and increased responsiveness as true improvement.
To those people who would argue that autonomy and self-determination are important values, I would agree. But where is the autonomy and self-determination in quickly withdrawing life support from a patient before we could possibly know if they will recover, particularly a child with no family or true advocate, who has no advanced directive, and with no reason to believe the child would want support withdrawn (nor that they could even evaluate such a question)?
Autonomy and self-determination are important values, but preservation of life is also an important value. Ethics is always the clash of two ideals that cannot both be accommodated. Most people would accept that truth-telling and saving lives are both laudable ideals. However, if faced with the dilemma of whether to inform a potential murderer where his intended innocent victim may be located, the two ideals come into conflict and one must be chosen over the other. For a moral person, saving lives must come before truth-telling or even autonomy in some cases. It is a perversion of decency to adopt an ethical system that places autonomy above all else.
So we go from Karen Ann Quinlan in 1976 to Nancy Cruzan in 1990 to Terri Schiavo in 2005 to Haleigh Poutre in 2006. Is this really the bottom? Probably not.
As we slide deeper into the abyss of abandoning our respect for life, our ethical decisions are increasingly being outsourced to groups such as the courts, governmental departments, and most sadly of all, doctors, who all too often do not view life as intrinsically valuable. Life is no longer the desired default.
Physicians, like all others, can make mistakes. Overworked social workers can err. I work with many physicians, all of whom have a deep dedication to helping others. I am sure that everyone involved in the Quinlan, Cruzan, and Schiavo cases also thought that they were offering the best care for their patients. Michael Schiavo may really have loved his wife as he argues in his new book and he may honestly think that he kept his promise to her.18 But good intentions are not sufficient.19
We have created a culture in which life itself does not matter.
The real issue is that we have created a culture in which life itself does not matter. Many people absorb their morals from the milieu in which they are immersed. Within such a culture of disposable human life, one may feel comfortable and morally justified in killing those people whose lives are not worth living. I often wonder what people perpetrating the killing in Germany, Cambodia, and Rwanda were thinking while the killing was happening. I do not believe that people in societies involved in genocide think that they are doing evil. The culture simply shifts to allow for people to "feel okay" with acts that might otherwise be considered evil. That is, there is no covert conspiracy in America involving government, lawyers, and doctors to kill innocent people. There is merely a dulling of our moral sensibilities that leads to the bad outcome. We look back only afterwards and then it becomes easy to trace the path that led from normalcy to immorality.
While the story of this little girl is horrifying, it is merely a symptom of a larger problem. The Haleigh Poutre case indicates the direction in which we are moving. Maybe it will serve as a wakeup call to take notice of where we are heading and to examine to whom we are abdicating our decision-making apparatus, before we have to look back and wonder what happened to our society.
This case should remind us that while we may choose to outsource some of our decision-making to experts, such as the safety of airplanes or the health-quality of our food, we must be very careful not to abdicate our moral decision-making capacity to others, merely because of their technical expertise in a given field. Evaluating the safety of an airplane may take an engineering degree and evaluating a patient's medical condition may require a medical degree, but judging the value of a life only requires an intact moral compass. Unfortunately, moral compass-building is not a required course in most universities and graduate schools.
So, we are still left with two questions. Whose moral compass will be used to chart the future path of our heterogeneous society and how does one develop a healthy moral outlook for himself? As a nation, we will never all agree on one source for morals, and various ethical perspectives vie for acceptance in our society. While society is often swayed by the loudest and most influential voices, sometimes, just sometimes, it is the voice of moral authority that carries the day, even against tremendous opposition, such as in the case of a leader such as Martin Luther King,
As Jews, our greatest contribution to the debate is to become voices of moral authority. Throughout our long history, our tradition of strong support for the value of each individual life has been a light to the nations and source of societal morals even in the most turbulent of times. It is through our study of the Torah that we acquire a solid basis for our moral growth and develop our own moral compasses. We must continue to use the Torah as a stable source of morality, or, as the whims of society change our cultural values, our personal ethics will shift with them.