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Wednesday, January 25, 2006

Haleigh, For Your Soul's Ease

Every day I google Haleigh Poutre's name. Every day I cry.

I'm not wallowing in emotion. I'm angry. The spectacle of reporters dogging the footsteps of politicians demanding to know whether "permanently vegetative people have the right to die", the pronouncements of Massachusett's DSS that they have nothing to be ashamed of - the warping and twisting of the facts of the case - all these things make it clear that very few are in Haleigh's corner.

Cui bono, I ask myself? Not only was this child returned again and again to the custody of at least one parent who beat her with a baseball bat, DSS is now insisting that they had no way of knowing that she was not injuring herself. Mind you, DSS managed to get a gag order on the case from the juvenile court judge who first gave them the power to kill her on October 5th, and that gag order was reaffirmed by the Massachusetts Supreme Court. So DSS held the medical records, the files, the statements of the doctors - they held all those cards and now they hold the legal power to dehydrate this kid until she dies. This is not a matter of autonomy and it's not a matter of choice.

Only public outrage can stop this. It's clear that DSS had a huge conflict of interest in seeking this order. Look at this timeline by the Boston Globe:
State Department of Social Services receives 15 allegations of abuse or neglect, but only the last report is substantiated.

Sept. 11: Haleigh is taken to Noble Hospital in Westfield and is unresponsive and then is taken to Baystate Medical Center in Springfield, where she is diagnosed with a severe traumatic brain injury.

Sept. 26: Jason Strickland files a motion asking to be declared a ''de facto" parent.

Oct. 5: A judge issues an order allowing Haleigh's breathing and feeding tubes to be removed.
It turns out that there were even more complaints. Strickland filed after learning that the DSS had gone to juvenile court asking for permission to kill the kid. DSS didn't even wait two weeks. How is that time enough to know whether the child was in a "permanent vegetative state"? This stinks to high heaven, and the public had no hint of this until Haleigh breathed.

Read the FreeRepublic thread. It's notable for several reasons. One participant argues strongly for killing all disabled people in state care. He doesn't want to pay for them. One participant responds to DSS's comments that Haleigh can't feed herself:
It makes me want to vomit how flippant Death Doctors are with human life. I'm stunned by this comment:

"Some patients with severe brain stem injuries may partially recover from a persistent vegetative state, but they rarely recover fully enough to communicate, feed themselves and live ordinary lives, Dr. Steve Williams, chief of rehabilitation medicine at Boston Medical Center, told the Globe."

So, just because someone can't feed themselves or communicate they should be executed? WTF is wrong with these people? "Ordinary lives"? According to whose standards? Dr. Mengele's?
One person writes:
These folks at the MA Supreme Court need a serious ass-kicking.

Years ago a friend of ours was in a coma for 4 months. She was bad enough that she was given last rites and her siblings were given power to manage her affairs so they sold all her stuff.

A year ago she just came back from a tour in Iraq.
One nurse writes:
A funny thing about being on life support...certain meds are needed to keep a person calm while on a respirator...even the more stable folks may need an anxiolytic at times to keep the anxiety down. When they are on these meds, these meds can blunt and diminished conscious responsiveness and even respiratory drive.

So they take this girl off a ventilator and take away the sedatives and voila...the drugs wear off and she shows much more responsiveness. The fact that the doctors and SS don't want to remove the feeding tube indicates to me that the girl may have radically more improved than the pro-death newspaper would like to to indicate!

(and no I have not slept at a Holiday Inn express Hotel...but I've been an RN for 20 years and in the ICU for 6)
One person posts a cartoon:

No kidding. It's politics that are being used to prevent people from speaking out about these issues. All the excuses are gone here. The issue stares us unambiguously in the face. The child has no one to speak for her and never did. This is the raw exercise of state power, so the claim that government is interfering in private lives is obviously null and void. What we are left with is the desire to kill the kid because she is an expensive and heartwrenching problem.

John Paul II addressed the issue in 2004:
Scientists and researchers realize that one must, first of all, arrive at a correct diagnosis, which usually requires prolonged and careful observation in specialized centres, given also the high number of diagnostic errors reported in the literature. Moreover, not a few of these persons, with appropriate treatment and with specific rehabilitation programs, have been able to emerge from the vegetative state. On the contrary, many others unfortunately remain prisoners of their condition even for long stretches of time and without needing technological support. In particular, the term permanent vegetative state has been coined to indicate the condition of those patients whose "vegetative state" continues for over a year. Actually, there is not a different diagnosis that corresponds to such a definition, but only a conventional prognostic judgement, relative to the fact that, statistically speaking, the recovery of patients is ever more difficult as the condition of vegetative state is prolonged in time.

However, we must neither forget nor underestimate that there are well documented cases of at least partial recovery even after many years; we can thus state that medical science, up till now, is still unable to predict with certainty those among patients in this condition, who will recover and who will not.

3. Faced with patients in similar clinical conditions, there are some who cast doubt on the persistence of the "human quality" itself, almost as if the adjective "vegetative" (whose use is now solidly established), which symbolically describes a clinical state, could or should be instead applied to the sick as such, actually demeaning their value and personal dignity. In this sense, it must be noted that this term, even when confined to the clinical context, is certainly not the most felicitous when applied to human beings.

In opposition to such trends of thought, I feel the duty to reaffirm strongly that the intrinsic value and personal dignity of every human being does not change, no matter what the concrete circumstances of his or her life may be. A man, even if seriously ill or disabled in the exercise of his highest functions, is and always will be a man, and he will never become a "vegetable" or an "animal."

Even our brothers and sisters who find themselves in the clinical condition of a "vegetative state" retain their human dignity in all its fullness. The loving gaze of God the Father continues to fall upon them, acknowledging them as his sons and daughters, especially in need of help.

4. Medical doctors and health care personnel, society and the Church have toward these persons moral duties from which they cannot exempt themselves without lessening the demands both of professional ethics and human and Christian solidarity. 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 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.
Moreover, to admit that decisions regarding man's life can be based on the external acknowledgment of its quality, is the same as acknowledging that increasing and decreasing levels of quality of life, and therefore of human dignity, can be attributed, from an external perspective, to any subject, thus introducing into social relations a discriminatory and eugenic principle.

Moreover, it is not possible to rule out a priori that the withdrawal of nutrition and hydration, as reported by authoritative studies, is the source of considerable suffering for the sick person, even if we can see only the reactions at the level of the autonomic nervous system or of gestures. Modern clinical neurophysiology and neuro-imaging techniques, in fact, seem to point to the lasting quality in these patients of elementary forms of communication and analysis of stimuli.

6. However, it is not enough to reaffirm the general principle according to which the value of a man's life cannot be made subordinate to any judgement of its quality expressed by other men; it is necessary to promote the taking of positive actions as a stand against pressures to withdraw hydration and nutrition as a way to put an end to the lives of these patients.

It is necessary, above all, to support those families who have had one of their loved ones struck down by this terrible clinical condition. They cannot be left alone with their heavy human, psychological and financial burden. Although the care for these patients is not, in general, particularly costly, society must allot sufficient resources for the care of this sort of frailty, by way of bringing about appropriate, concrete initiatives such as, for example, the creation of a network of awakening centres, with specialized treatment and rehabilitation programmes; financial support and home assistance for families, when patients are moved back home at the end of intensive rehabilitation programmes; the establishment of facilities which can accommodate those cases in which there is no family able to deal with the problem or to provide "breaks" for those families who are at risk of psychological and moral burn-out.

Proper care for these patients and their families should, moreover, include the presence and the witness of a medical doctor and an entire team, who are asked to help the family understand that they are there as allies who are in this struggle with them. The participation of volunteers represents a basic support to enable the family to break out of its isolation and to help it to realize that it is a precious and not a forsaken part of the social fabric.

Read it, and weep. DSS was in court asking to remove sustenance and ventilation from Haleigh in less than two weeks, on the ground that her condition was permanent. DSS received the order allowing them to kill her October 5th. The child was brought to the hospital on September 11th.

According to the Evangelium Vitae, 1995:
Choices once unanimously considered criminal and rejected by the common moral sense are gradually becoming socially acceptable. Even certain sectors of the medical profession, which by its calling is directed to the defence and care of human life, are increasingly willing to carry out these acts against the person. In this way the very nature of the medical profession is distorted and contradicted, and the dignity of those who practise it is degraded. In such a cultural and legislative situation, the serious demographic, social and family problems which weigh upon many of the world's peoples and which require responsible and effective attention from national and international bodies, are left open to false and deceptive solutions, opposed to the truth and the good of persons and nations.

The end result of this is tragic: not only is the fact of the destruction of so many human lives still to be born or in their final stage extremely grave and disturbing, but no less grave and disturbing is the fact that conscience itself, darkened as it were by such widespread conditioning, is finding it increasingly difficult to distinguish between good and evil in what concerns the basic value of human life.
That's where we are. The Catholic Church has been on record as eschewing euthanasia since 1940, for obvious reasons. Just as obviously, the US has not learned the lesson of the Nazi gassing of the deaf, the blind, disabled, the Gypsies and Jews. Is that really the type of nation in which you wish to live?

The choice before us is stark. Kill Haleigh, and we kill our consciences. Kill Haleigh, and we kill thousands of wards of the state. Kill Haleigh, and we kill the innocent and the voiceless.

If you can face Haleigh's life, you can face your own death with some peace. If you cannot face Haleigh's life and embrace its burdens, you cannot pick up the burdens of your own life.

I know. Come with me to the dock at midnight. Come with me, and kill your fear.

I haven't written all that much about my physical condition, but it was at one point dire. For many years, I had lost the instinct to breathe. I was not on ventilation, but I breathed to the count. You understand, if I stopped counting, I did not take the next breath? The instinct to do so was just gone. Even I can hardly believe this, because I was unconscious - literally blotto - for part of this time. So who was counting? But it's true, and I have vague memories of the voice telling me to count, and also explaining that I had to change the count when I moved around. I have a very vivid memory of the voice telling me to think about my heartbeat, and to sync it with the count.

I also couldn't maintain my own body temperature. For months at a time, every day it would drop below (- corrected from 64 to) 94 degrees Fahrenheit - even in the summer, I was literally freezing to death. I remember the voice telling me to go and run hot water in the shower. I remember the voice explaining that it was my body temperature, and that the problem was that ~something~ was reversed, and that when my body should be compensating for this it was going the wrong way. It was something metabolic, and the voice told me to start breathing deeply and move around. My heart didn't beat right either. When I lay down it would start pounding like I had run myself to half to death, and when I got up it would slow way, way down. The voice explained all that, and told me how to breathe and sort of listen to my heart and chain my heartbeat to the count. Years of this. Years, years of breathing to the count.

Since emerging from that state, I have not yet been able to figure out how I lived at all. Logically, I must be dead. But evidence must trump logic, and I am quite alive.

I had even forgotten about breathing to the count until last summer, when I got some sort of virus. I probably had viral encephalitis. In any case, it recurred. One morning I was really feeling badly. I knew I felt terribly tired, but I didn't know why. My dog went nuts and finally started whaling his head into my abdomen, and that was when I remembered the voice telling me to count - so I started counting again. I still wake up breathing to the count quite often, so obviously I haven't quite perfected the fine art of breathing. I can now shiver on the left half of my body. The right half doesn't participate. This stuff about how people do not recover from brain injuries is crap. They often do, but it is a long tough recovery.

But the really, really tough times were when I started to get better. I think what happened was that my natural circuits kicked in sometimes and started to conflict with the count. Many, many nights I woke up in terrible pain, and I just couldn't get the whole thing settled down. It hurt. I started going out to the dock when I was really bad, because I didn't want to die in the house and have Chief No-Nag find me.

And - to hell with all this prissy stuff - because when you get really close to death you become incontinent. So I went out to the dock while I still could, and my dog went with me, and I faced my fate out there there with the pee running down my legs. The dog knew. He would come and keep touching my leg and brushing my hand and nudging me. It was very comforting, because at first I would hurt badly - struggling to breathe and with this tremendous pain in my chest, and then my vision would often gray out. When things got really bad it hurt much less.

A natural death is not so bad. It really isn't. I'm sure it looks bad from the outside, but on the inside things are slowing down and fading away. You lose the ability to think after you lose most sensation. You see, I always knew when I went out there that if God had a purpose for my life that morning would come. And I always had the confidence that if it would be better that I did not live then I would not come back in. And I always thought I had the right to leave the choice to God.

I did feel the natural animal fear of death - of non-being - of stepping through the door into emptiness. I felt the terrible physical anxiety that comes when your body is short on oxygen. I was often very scared, whereas before when I was so badly impaired I never was scared at all. Truthfully, my condition had gotten a lot better from its low point before I was capable of suffering very much, but by those nights on the dock I was suffering and was afraid. But that fear faded along with the suffering when things got really bad. It's just as if a clock is running down, and you run down with it. Honestly, it's not that bad.

It's been a long time since I spent a night on the dock. I know that sometime I will face death again, and I hope I still have the guts to do it that way. So when I tell you that we cannot kill Haleigh, believe me - I am not speaking out of fear! It's those who want to kill Haleigh who are speaking out of fear.

They are afraid to face their deaths and their lives. They are the ones who are afraid to put their wishes down on a piece of paper. They are afraid of suffering, and of the choice.

But Haleigh is not suffering unless she's conscious, and if she's conscious she should not be killed because she's a frightful spectacle to you, or because she's expensive, or because you would want someone to kill you if you were in that situation.

If Haleigh is breathing, it's because she's supposed to or because she's trying to. For all I know she too is listening to the voice telling her to count. You don't have the moral right to stop that child's breathing any more than you have the right to put a bag over my head. And if Haleigh lives, she will at some time be able to express her wishes, and if she decides to go out on the dock the law fully supports that. So can the crap, cut the cowardice and face Haleigh's life, your own mortality and your own fears.

I don't know how I can be alive. I don't know why. I do know that I was right to go out on the dock and that I had the right to do it. Because when I went out on the dock I was facing the problem, not running from it! Those who want to kill Haleigh are running from the problem, not facing the problem of her life. And I can tell you this - when I come back off that dock, I am not afraid. I am not afraid either to face my life or my death, because I am facing both squarely. If I found myself in a hospital bed in Haleigh's situation, I would not accept extreme measures, but I would not choose to die from dehydration either. When you are that far down, you don't suffer much, and I know how hard it is to live like that. There's life left in you to spare if you make it through. There's something you have to offer the world if you do.

You will live in fear if you must kill Haleigh because you fear her life. You will die in fear if you must kill Haleigh out of fear of her "suffering". It's not her human dignity that's at stake - it's yours. That's the choice this nation is making. As for me, I am not afraid of Haleigh's life, or my own.

MM: Your voice matters. You help us see where to go.
And you are right.
Thank you.
jng, after reading the news coverage, I have come to believe that we are indulging in a collective delusion.

What happened is clear. What we should do is clear. What we choose to see is another matter entirely.
I have entire agreement about Haleigh's right to live, and am glad you bring this up.

I would only offer the caution that we don't know what the DSS was able to do and able to know in their investigations. They may well have been negligient, lazy, callous, whatever. But I won't reach that conclusion while the other side of the story is still unknown to me. I work for a social agency -- the state psychiatric hospital -- and know too may stories where the press has got the facts wrong, or have left out important info. Even in my own job, we often come up against situations where the law does not allow us to intervene in situations we suspect are horrendous, but cannot show evidence.

It doesn't mean we don't care about abused patients, or children, or elders. My own third and fourth sons were badly abused in Romania, and I can see the sequelae.

The DSS may have been criminally negligient. Or they may have done all they legally could, at least on the custody part. I have seen both in my career.
AVI - the record which we are just now learning about makes it clear that they did investigate. At least one psychiatrist said she was hurting herself. So this is not a simple case of not doing the job. That much is clear.

But legally, DSS can't meet the definition of disinterested parties. They did have something to lose. And for example, the DSS spokeswoman was quoted in newspaper articles as responding to questions about why they hadn't brought in other doctors to evaluate her condition by saying something like "what's the point? They might disagree."

They applied for an order to disconnect both the ventilator and the feeding tube within two weeks of Haleigh's hospitalization. AVI, that is not enough time to determine that anyone is in a permanent vegetative state. It's enough time to determine brain death, but not PVS. The hospital also might have had a good financial reason to give such an opinion, because the reimbursement rates for patients like Haleigh are too low, so the hospital would have ended up paying for quite a bit of the care. Now DSS is saying that they relied on doctors saying that she was "virtually brain dead". After two weeks? Doesn't this sound a bit fishy to you?

The most favorable way you can parse it is that DSS decided that this child would be permanently impaired, and so should die. One can easily imagine that worry might have unconsciously influenced their judgement. No independent counsel was appointed to protect the child's interests. No careful medical review was done. They applied to juvenile court for the death order in September, because the hearing was held then. The child was hospitalized on September 13th.

AVI, thank you for bringing up the point. What happened before Haleigh's hospitalization is something that is apparently going to be reviewed independently now. I can't judge it, except to say that something is badly wrong in the system when someone doesn't at least remove a child from the setting for evaluation after fifteen complaints, including burns. My mother was a teacher, you know. I know quite a bit about what can be done legally. See this NY Times article about the child's condition on admission (extremely thin). A witness testified that the girl would "hoard food", and that she saw the girl's mother beat her severely for it. If DSS was visiting monthly, wouldn't they have caught this?

Her teeth were broken, her face was swollen, her chest had old and new burns. She was extremely thin, her abdomen was sunken, she had cuts and sores, and her temperature was 81 degrees.

Documents and testimony indicated that Haleigh had engaged in self-harming behavior, for which she was hospitalized over the last two years. A baby sitter and friend of the Stricklands, Alicia Weiss, testified at a pretrial hearing in Mr. Strickland's case that Haleigh frequently hoarded food, behavior that enraged her parents and caused them to hit her.

A child does not get in this condition in a month. Something's wrong here. But I also find it impossible to believe that a psychiatrist would not have rendered his or her best judgement, although he may have relied heavily upon previous records and evaluations.

What happened after her severe injury and hospitalization is a whole different kettle of fish. I remind you that DSS still has the legal authority to dehydrate Haleigh, they sought it with awesome speed, they have controlled the public understanding of the case, and they controlled the presentation of the case to the MA SC.
Thanks for choosing to see this. At first I averted my eyes not believing that MA state organizations chock-full of professionals had no one in charge who would see the humanity of Haleigh. Then I read your post and it bothered my sleep. Collective delusion is a kind way to put it.
I'm afraid your point isn't clear to me. Should we all be angry that Haleigh was beaten even unto death? Yes. Should her attacker be permitted to make decisions about her? No. Okay, then who?

If DSS should not be permitted to make decisions, because of their failure to protect Haleigh, then to whom should the decision go?

While your own medical experiences are interesting, they don't really inform your argument. If I understand correctly, it is your opinion that any human body, devoid of any higher brain activity, should be kept alive indefinitely. Would you keep bodies alive against the express wishes of patients and/or their families? Would you keep alive the body of an infant born with only a brain stem?

Have you considered that your policy would eliminate organ donations, since your plan would remove the concept of "brain death"?
No one is alleging that Haleigh is brain-dead. That claim was not made to the court.

When DSS went to the court, they could not have known she was "persistently vegetative", so that's not really an issue here. Post-mortem organ donations are not an issue here. People who have been dehydrated to death cannot possibly donate organs, because their tissues have been destroyed.

The laws don't allow you to cut up people who are not brain-dead alive, so the organ donation issue you bring up is a complete red herring.

The issue is whether we will have de facto policy of killing people who cannot feed themselves or cannot feed themselves efficiently. A huge number of people fall into this category.

In a circumstance like Haleigh's, it seems to me that the minimum standard possible would be to have an independent group evaluate her situation and make a recommendation. I also think that would have been good for DSS as a protection in this instance. I am not arguing that the person accusing of also abusing her should have the authority to make the decison. He never had any legal authority.

This is about money.

It is fair to say that Haleigh's life is expensive. Is it also fair to say that our society as a whole should deliberatly kill expensive people? And in this case, an expensive child? A child who is expensive because a crime was committed against her?

Once you adopt the position that we can kill expensive people if we believe their "quality of life" is not up to some standard, what's to protect prisoners and all the impaired or disabled people on Medicare or Medicaid? Nothing. At the minimum, those who advocate starving the disabled to death intend to remove large numbers of expensive people in nursing homes.

Believe me, once we have accomplished that we will rapidly move on to eliminating our expensive prisoners. The costs for the most dangerous and most impaired of those are just as high as providing medical care for a person who cannot feed him or herself. I would think such a society would resemble Nazi Germany to an astonishing degree.

We are not talking about someone who cannot breathe on her own. We are talking about dehydrating a child, who is probably now conscious to some degree, to death.

If you can't stand to face the real issue, that's your problem. By the way, in Florida conscious adults who can swallow have been dehydrated to death in nursing homes while pleading for a sip of water. It's totally legal as long as they have been ruled legally incapacitated. There go the insane.

If that's what you think should happen, fine. It's not what I think society should permit. As I wrote, the choice is stark and it can't be obfuscated.
Thank you. Please do google search on my adopted daughter, Marissa Amora, fka Moesha Sylenicieux. We are still fighting through appelate courts for her medical care, you will understand. Anything I can do to assist w/Haleigh, let me know. Been there. Dawn Amora - Florida
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