Editorial: Haleigh Poutre, 'Persistent Vegetative States' and Compassion

Haleigh was diagnosed in what is routinely called "PVS", a "Persistent Vegetative State". She now communicates through hand signals and a computer keyboard.

CHESAPEAKE, Va. (Catholic Online) - Haleigh Poutre was born on February 24, 1994 and adopted by her maternal aunt Holli and Jason Strickland in 2001. In September 2005 she was admitted to the hospital with life threatening brain injuries. Her brain was bleeding. Violent trauma to her head had caused a sheared brain stem. The treating physicians said the results of the beating she had endured constituted "irreparable damage". Haleigh was diagnosed in what is now routinely called "PVS", an acronym for a "Persistent Vegetative State". Those who are so diagnosed were once simply referred to as being in a "coma".

The injuries were allegedly inflicted upon Haleigh by a baseball bat wielded by her own stepfather. The Department of Social Services obtained legal custody of Haleigh once these allegations surfaced. However, her story went from bad to worse. After all of this horror, the authorities later found Holli Strickland, the stepmother, dead, alongside Haleigh's dead grandmother. It appeared to be a murder/suicide.

Haleigh was being given food and water through a feeding and hydration tube. A year later, the Massachusetts Department of Social Services filed a legal motion to remove it. They cited the medical finding of "PVS". Her stepfather then sued to prevent the removal of the assistance. There was speculation in some sources that he did this to avoid criminal charges for murder. The Massachusetts Supreme Judicial Court held that the assistance could be removed in a controversial ruling.

One day after the ruling, Haleigh surprised all of her caregivers by breathing without the need for assistance and showing signs of communication. The court order was rescinded and the medical team continued to care for Haleigh. That was in 2006. Now, two years later, Haleigh may be called as a witness in the retrial of her stepfather's case. He is on trial for assault and battery on a child with a dangerous weapon. Haleigh continues to recover. She now communicates through hand signals and a computer keyboard. She loves to brush her hair.

The diagnosis of "PVS" is the subject of increasing scrutiny by some medical professionals and concerned moral theologians. One study from the British Medical Journal found that 43% of those so diagnosed were actually misdiagnosed. Among that number some had been in this "PVS state" for over a year. The context within which such end of life decisions are being made should cause all Pro-Life persons deep concern. This is a culture that fails to respect human life as a primary good and human relationships as constitutive of human being.

The word compassion in its etymology means "to suffer with". We have little tolerance for suffering these days. We also have bought the lie of a culture of death, a counterfeit notion of human freedom that is founded upon autonomy and production as the greatest value. The increased diagnosis of "PVS" and the resulting growth in State sponsored interventions to stop giving food and water to people in medical need is frightening. Haleigh Poutre's story demonstrates that it demands serious review.

I have friends whose adult son celebrated St. Patrick's Day dinner with his family several years ago. The celebration involved a bit of libation. Between midnight and one in the afternoon of the next day, while asleep on his back, the young man vomited into his lungs causing oxygen deprivation to the cerebral cortex of his brain. By the time he was found and taken by ambulance at the hospital he had suffered a serious heart attack and renal failure. He had also developed double-pneumonia. His parents were told that he was in an irreversible coma. The Emergency room physicians spoke these words: "we are so sorry to tell you that this is gravely serious...."

Brain scans and other diagnostic tests showed that he had suffered grave damage to his cerebral cortex, the area which affects cognition; thinking, language, and memory. The Doctors told his grieving, frightened parents that this damage was severe and irreversible. Further, that a feeding tube would only needlessly "...prolong his agony." This young mans parents are faithful Catholic Christians. They prayed and reached out for moral, pastoral and theological advice. Then, against the advice of doctors, they insisted that a feeding tube be inserted into their sons' stomach. The ongoing dialogue between the doctors and the parents was painful but not unusual, at least in such dire circumstances. They were told he would never come out of the coma or, in the alternative, that, if he did, he would return as a "vegetable or worse, something horrific".

The situation did not quickly improve. Though remaining in a coma, his sons' pneumonia began to clear. His parents, consistent with the teaching of the Catholic Church, removed what they were advised actually were extraordinary means of life support. However, they still insisted, against the repeated and continual advice of the medical community, that there was to be no removal of the feeding tube which provided for the ordinary maintenance of his life. In so doing, it was suggested by their neurologists, as well as their treating physician, that they were "...not accepting reality."

The late Servant of God John Paul II addressed the issue of whether the continued giving of food and water through a tube is ever "extraordinary" care on March 20, 2004. In this "Address to the participants in the International Congress on Life-Sustaining Treatments and Vegetative State", at par. 4 we read these important words: "The sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He (she) also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery. I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate , and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering."

The story of my friends and their care for their son shows the meaning of true compassion. The young man was taken off of a respirator. They treated him with the dignity every human person deserves by giving him food and water. He remained in a deep coma. His parents continued to pray, spending all their waking time with their son. They entered into his suffering. Within days they began to see what they referred to as "tiny signs" of him communicating. The doctors attributed this to brain stem residual capacity. They insisted that he "kissed back" (though in a coma) when his lips were kissed. The Doctors insisted it was just a "brain stem reflex."

Soon, their sons' eyes opened, but the Doctors said he was blind. These parents chose compassion; they loved their blind son. In time, he moved his fingers slightly and, with more time, signs of consciousness returned. His father recounts "... had we listened to the good doctors -and only our Catholic Faith kept us from doing that - had we not had discussions with moral theologians - the feeding tube would not have been placed and our son would be very dead. It was not God's time for him. Beyond all that, I can say no more. But there are many witnesses to all this and what has happened to our Lazarus whose recovery continues." Soon, they heard the voice of their son when he spoke his first two words as he was being lowered from a chair back into his bed, "it hurts!" These parents chose to love a son in his pain.

Over months this limited communication evolved into a capacity to nod in response to questions, indicating "yes" or "no". He began to laugh at jokes and greet his family when they entered the room. He regained conscious and began speech therapy. He started to eat daily, with little assistance. At every stage, his Parents and family received him as a gift. They called him their Lazarus. Though his communication improved, including an ability to use the phone, he was unable to move his arms and his legs. These parents chose to love their physically disabled son.

His father recounted with great joy at this stage: "Here he is. No vegetable, but a living, feeling, communicating, handicapped human being, our son. He still has no movement in his legs and upper arms; he has some trouble remembering certain people (though he enjoys their company!) and still cannot tell time on a clock as hard as he tries. Everyone who prayed for him is my new best friend." One year after the incident, their son regained limited movement in his legs and arms. He continued physical therapy. He began to stand with chair or bar supports in rehabilitation. Then he took his first step. His family chose to love their son at every stage of this progressive recovery. He is now out of rehab and even playing music again.

There is an extraordinary video of Haleigh Poutre circulating on the World Wide Web. Watch it if you can as we enter into the celebration of Thanksgiving. Let us join with our families and stop on this day to thank God for every one of them. Then, let us continue our efforts to build a Culture of Compassion, in honor of Haleigh Poutre.

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