Wednesday, July 09, 2008

Dehydration of a Conscious Patient in Florida Reported as No Big Deal by St. Petersburg Times

For more than ten years I have been telling anyone who will listen that unquestionably conscious cognitively disabled patients are being denied sustenance in every state in this country--so long as no family member objects (and eventually, if futile care theory takes hold, it will be even if they do). Here's the latest proof: A young man was catastrophically injured by a drug overdose. For years his parents kept vigil, and then decided to transfer him to the hospice in which Terri Schiavo died, which removed his feeding tube. But he wasn't unconscious. From the story:

His brain was severely damaged, and he never spoke again. If his mother pulled his chin, he could mouth "Mama." If she leaned close, he could kiss her. That "broke my heart," Sue, 53, said.

For nearly three years, his mother and father did nothing but "work, sleep and spend time with Bradley," she said. There was a chance his condition would improve. But it didn't. Infections kept landing him in a hospital. Finally, his family transferred him to the Hospice of Florida Suncoast, where Terri Schiavo died.

They removed his feeding tube, and his mother lay in bed beside him. He died July 2.
It is my understanding that a patient is supposed to be PVS in Florida before a tube can be removed. But never mind. That law isn't really designed to protect, but give false assurance.

I think the bigger story here is the blase`, matter-of-fact reporting about the matter by the Tampa Bay/St. Petersburg Times--which exhibited profound, nay, nasty, bias against the Schindlers during the Schiavio debacle. Can you imagine the paper's reaction had a dog or a horse been denied sustenance?

This is the truth: Once we decided that people who are diagnosed as persistently unconscious could have sustenance denied based on quality of life, then we stripped all profoundly cognitively disabled people from moral equality. The wall was breached allowing utilitarian bioethical values to come pouring in. Now, virtually anyone who needs a feeding tube and can't make their own decisions--conscious or not--can and are being denied food and water. What a testimony about the state of the times in which we live.

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21 Comments:

At July 09, 2008 , Blogger Lydia McGrew said...

I notice the way they sort of glorify his death. They imply, weirdly, that he will be at church with his mother again this next Sunday--because he's dead. Say what? His ghost or something? And the headline says, "For three years, a free spirit was silenced." I get it. So now that he's dead, his free spirit is free again, right?

I never trusted that idea that you had to be PVS to be dehydrated to death in Florida. I remember reading the Brown precedent, and my impression was that the whole ball of wax was whether the person had become incompetent but had given "clear and convincing evidence" that he "would have wanted" to be dehydrated to death in such-and-such circumstances. The PVS thing seemed to come up in Terri's case just because those were believed to be the circumstances under which, Michael said and the court believed, she "would have wanted" to be dehydrated to death.

I could be wrong, here. I do recall a reference to a statutory law in Florida referring to the PVS state, but throughout Terri's cse it was the Brown precedent that was treated as controlling, and it wasn't clear to me that being PVS was a necessary condition there but only an example of a kind of condition under which this might arise.

 
At July 09, 2008 , Blogger Joshua said...

I'm a utilitarian, but I can't see how this would be justifiable. Dehydration and starvation are, under a utilitarian ethic, quite possibly the worst ways to be killed; they cause prolonged pain to any 'painient' being.

Not only are dogs and horses put down more humanely than this, but even criminals are given a lethal injection. Doctors should assist in assuring death is as painless as possible, not stand idle while is slowly occurs.

Clearly, it is not the utilitarian ethics that allows 'futile care' to exist - it is that very non-utilitarian Hippocratic Oath that is to blame. If utilitarian ethics were followed, it would be active euthanasia in almost all cases currently given 'futile care'.

 
At July 09, 2008 , Blogger Wesley J. Smith said...

Joshua: Yes, that is Jack Kevorkian's position. Which is why I suspect one agenda in the dehydration issue is to get people readly to off these people, and then say, as you did, that we should do it humanely.

But it isn't the method that is bad, it is the killing.

 
At July 09, 2008 , Blogger Johnson said...


Once we decided that people who are diagnosed as persistently unconscious could have sustenance denied based on quality of life, then we stripped all profoundly cognitively disabled people from moral equality.


But it would be hard to justify the spending on life support for someone that couldn't be resuscitated given the current health care crisis in our society.

I think sentience should be a qualification for health care.

 
At July 09, 2008 , Blogger Wesley J. Smith said...

Johnson: Wow. Creating disposable castes as we go, not to mention, PVS is a difficult and often wrong diagnoses. But even under your perspective, many dehydrated people are sentient when their feeding tubes are removed.

 
At July 09, 2008 , Blogger Lydia McGrew said...

"be resuscitated"???

Hello?

I don't really think he meant that, since these people are, you know, alive and breathing, unequivocally. So perhaps I shouldn't make too much of the mistake.

 
At July 09, 2008 , Blogger mkkalb said...

I think sentience should be a qualification for health care.

Remind me to look you up if you ever develop Alzheimer's... Good freakin' grief.

 
At July 09, 2008 , Blogger Wesley J. Smith said...

I guess that does away with prenatal care, too.

 
At July 09, 2008 , Blogger James said...

Hey Wesley have you read this:

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=886373

The law professor conclusively proved that the evidence using in the Schiavo was NOT Clear and Convincing.

 
At July 09, 2008 , Blogger Susan said...

I sent Wesley that article sometime back.

 
At July 10, 2008 , Blogger mkkalb said...

I guess that does away with prenatal care, too.

And newborn care, as well. There are Pavlovian-trained goldfish that appear more "sentient" than many newborns...

 
At July 10, 2008 , Blogger viking mom said...

Think of Arvid (the disabled teen who kills himself) in the 1993 film SWING KIDS.

(SWING KIDS is based on the real life German 1930's teens who loved their Swing music and dance as much as any teen loves their music today)

The film just touches on how the disabled (even the "Nordic" disabled) were increasingly scorned in Nazi Germany.

As the Nazis either seduce or bully more & more teens into the Hitler Youth, Arvid, the disabled German teen, is more & more scorned by even his friends...and beaten up by a former friend & other Hitler Youth. He has lost his status as "Herr Hitman", his nickname as a musican in a local Swing band...

One former friend says after Arvid's suicide that - he didn't really belong anyway.

If SWING KIDS is edited to tone down the sexual stuff, it would be great to show later grade school or high school kids to see the many ways a culture can transform itself into an ANTI HUMAN cruel machine.The war against the disabled is the almost unknown Nazi holocaust which we should teach our kids about - in addition to their later holocaust against Jews & others.

 
At July 15, 2008 , Blogger hamstergirl said...

As a disabled person, I am more than aware of the "Unknown Nazi Holocaust." I have also witnessed how "welcome" disabled people are in my own time. I have seen disabled people mocked, abused and betrayed even by members of their own family.

I have lived with chronic pain for four years and it has changed my life forever. It has taught me what it is to want to die because of that pain. Chronic physical agony wreaks tremendous emotional suffering. There is no seperating the two.

One would expect that some compassion be shown to a person with chronic pain when they are in desperate need of help to live, but no, I have been on multiple waiting lists for various services for years.


My own parents tried to use my chronic pain to take advantage of the situation and to railroad me into a nursing home closer to them. They told a supervisor that "it is easier to get our daughter to do things when she is in pain". I had signed power of attorney over to them and when the supervisor phoned me and told me what my parents had said, I revoked it. When my parents phoned and I didn't give them power of attorney back, they said they didn't want to see me again and pulled all support, including financial support.

The next day after this news, I learned from my psychiatrist that my parents had written trying to get me declared incompetant (and this was just last month). He thought the letter was hilarious. I still don't get the joke a month later.

My parents had told him they were burned out. Well my mom is working in a hospital with terminal cancer patients TODAY.

My friend and sponsor into the Catholic Church is coming today. He is going to get me tromping down the streets and he wants me to "eat like a pig". (My chronic pain kills the appetite; I get so overwhelmed by the pain there are times when I can't eat.)

The chronic pain comes and goes, were I not on morphine, I would be hurting just from sitting in my wheelchair and I don't have the luxury of walking.

My good friend is here, so today is a good day, even if my physical pain is 5000 on a scale from 1-10 now. After he goes home, I will go home and pray for the strength to carry on, as I have often done. I also have had depression for years and the chronic pain made it explode.

I live 500 miles away from my parents because they were and still are, emotionally abusive towards me. They've also spoken in a condescending manner of me to members of my care team.

The pain I suffer from this abuse and from being so far from my siblings cannot be calculated. Because abusive words do far more damage than a punch, and fear of my own parents runs deep.

I have found that thoughts of suicide come often when one suffers chronic pain. And these thoughts are powerful. I need to make one thing clear. My cerebral palsy did not cause this chronic pain and it certainly did not lead to my thinking of suicide. There are other factors which contributed to the depression, its' worsening and the longing for suicide.

And isolating myself for almost 20 years out of fear of future abuse would certainly be among those factors.

People who say they need help to end their lives had "help" to feel that way and it might not always have been a benign nature. One might point out "You want to live". I wish he could share my mind for a week. He would learn quite quickly how easy it is to assume lack of suffering from depression and suicidal thouughts because of a desire to at least honour a moral code against self-murder. I am not immune to depression or suffering from it. While I live there is always the hope, even a sliver that things could get better, even if it is 99.9% certain that things won't improve on this side of the grave. If society improved its' outlook towards people with disabilities, then things would be different.

And before assisted suicide supporters scream at me for ramming my views down their throats, realize that there is a big difference between my writing and my physically stopping someone from taking their own life.

I am in no position to stop much of anything and I have no desire to suffer any more than anyone else. And if someone reading this dares to laud my courage, I will have his head! I didn't sign up for any of this.

If I ever do get the point where I plan out a suicide, then I don't want to turn it in a philosophical debate over the "rightness" or "wrongness" of killing. My life is as valuable as anyone else, or should be and should I be found unconscious.

Discussion of the rationality of suicide is both laughable and absurd. It also gives me even more of a headache. Suicidal desires are a symptom of depression. Killing me for them would be like killing me for sneezing with a cold. We didn't used to allow suicide, allowing it for certain people is discrimination. And it also makes it more difficult for disability rights advocates with depression and chronic pain to get help should they get into trouble, because said advocates would have no idea if the doctor would be in favour of killing them or not. So they could very well keep their mouths shut about suffering suicidal thoughts 60X a day. It is one thing to defend the right to life; it doesn't mean one can't suffer from depression. Having people think that just adds to the suffering one already endures.

If I ever ask for help to die, it must be kept in mind that I have had plenty of "help" getting into that frame of mind, including systemic discrimination, inaccessibility and prejudice which I have endured my entire life, the systemic violation of my civil rights. How very touching that you would offer me aid to die, while denying me aid to live

 
At July 15, 2008 , Blogger Christina said...

Sixty years ago we were trying people as mass murderers for conducting bizare and horrific medical experiments on people to see what happened when...and watching. Now we awarding killers knighthoods and similar status in the press and calling them heroes.

 
At July 15, 2008 , Blogger DreamWeb said...

It's nothing short of sactioned murder. Goodness.

 
At July 16, 2008 , Blogger Brad's Mom said...

You are 100% correct when you say that convicted felons receive better treatment... a life-saving surgery for someone on death row?!?!... an alcohol swab on an arm before the lethal injection is administered?!?!... ARE YOU KIDDING ME??

Let me also explain something about our specific situation. Yes, Brad's feeding tube had been removed... but only 5 days prior to his passing. HE DID NOT STARVE TO DEATH. We had known for a month, or so, that he was very ill and that his body was beginning to shut down. He had been hospitalized for 8 days, and was released to return to his nursing home. Not even 1 week later, we saw that his urine looked like rusty water again, and knew that he was facing more hospitalization. He was running high fevers (102-103.7) and the doctors told us it was time to bring Hospice in... that the end was near. We met as a family and, yet again, discussed what BRAD would want us to do. Brad was a 'whirling dervish'... the life of the party... never still unless he was sleeping (and even then he moved all over!). We KNEW all along what Brad's wishes were; we had, quite simply, ignored what we knew he would want for 2 years and 7.5 months because WE WANTED HIM TO REMAIN. It was NOT MEANT TO BE. We contacted Hospice, their team of doctors spoke with our team of doctors, and all agreed... it was time to Let Go and Let God. We moved him to the Hospice facility late on a Friday, and the following Tuesday Brad seemed to no longer be urinating, and his fever spiked back up to 103. The following morning, with his father sitting next to him and his brothers at the foot of his bed, I laid next to him and held him as he took his final breath.

Do I believe the medical community could find a better way to end life for those in situations similar to ours? Of course I do. Do I know what that 'better way' is? No I do not.

I only know that I would not wish the past 2 years and 8 months of my life on ANYONE... including my very worst enemy.

 
At July 21, 2008 , Blogger Okakura said...

Mr. Smith may be right about the Bradley kid’s state of awareness in Tampa but his recent track record of neurological diagnosis is poor. Consider what Mr. Smith said during the Schiavo affair. (From http://archive.newsmax.com/archives/articles/2003/9/22/165543.shtml)

Smith reviewed the Schiavo case for NewsMax.com:
"In Florida, in order to dehydrate somebody there has to be a finding that the patient is unconscious, which is what Judge Greer has done in the Schiavo case.
"But if anybody has seen a video of Schiavo available on Terrisfight.com, the video shows they will see that she is no way unconscious. An unconscious person is utterly unreactive – in fact that’s how it’s basically defined in Florida law."
On one video a doctor is shown asking Terri, who has her eyes closed, "Please open your eyes, Terri" – and her eyes flutter and open.
In another video her mother comes over to her bed, leans down and says, "Hi, sweetie, how are you?" and Terri looks over, sees her mom and gets a huge smile on her face.
That, says Smith, is not a mere reflex; "that is recognition of a mother and the enjoyment of being loved. To say that she’s unconscious is unconscionable."

Of course, we later learned from her autopsy that Terri Schiavo suffered severe, irreversible brain damage that left that organ discolored and scarred, shriveled to half its normal size, and damaged in nearly all its regions, including the one responsible for vision. Oops. (Did you ever make a public retraction & apology for these statements? Seems like the least you could do, considering how many people's character you blanketly impugned with your many public statements.)

It is unfortunate that someone as compassionate and intelligent as Mr. Smith cannot seem to transcend his own conspiratorial polemic against the greatly exagerrated 'culture of death' movement to realize that most Americans - doctors, nurses, family members, and friends - are struggling daily to manage the deaths of their loved ones (and patients) with respect and dignity. And for many (but by no means all), "dignity" in the last days or weeks of a person's life is often NOT bestowed by the mere mechanical prolongation of the dying process, be it with peg tubes, dialysis, chemotherapy, or ventilators.
Are diagnostic & prognostic errors made at the end of life? Yes. Are some vulnerable patients at the mercy of uncaring health care providers and/or greedy & selfish family members? Of course. And do advance directives solve these dilemmas? Not nearly often enough; they are often either too clinically vague or else not honored by liability-averse clinicians or family members who are more committed to honoring their own values than those of their dying loved one.
But to adopt a "one size fits all" ethic at the end of life - a 'technological imperative' that whatever machines & interventions can be used shall be used regardless - is horribly misguided and rationally suspect. "Rationally suspect" in the sense that I am assuming by your political bent that although you are in favor of an individual's absolute right to any/all life-sustaining interventions even if they are medically ineffective, you probably don't support the access rights of non-dying Americans to appropriate, preventive health care. (If my assumption is wrong, I apologize.)

You state: "Once we decided that people who are diagnosed as persistently unconscious could have sustenance denied based on quality of life, then we stripped all profoundly cognitively disabled people from moral equality." Uh...no, we actually haven't. In fact, I have already decided that for myself and I consider it to be a MORAL act-- that I voluntarily will refrain from senseless medical treatment in my final weeks of life and not divert monetary and clinical resources away from those who need it more than I. And good luck preaching your 'moral equality' sermon at the bedside of a mourning family prayerfully struggling to do "the right thing" or to the doctors and nurses who care deeply and actually dare to believe that there is more than one way to define "dignified death" and that dying of a massive infected bedsore is no more “moral” or less natural than death by dehydration (which is often a secondary process to the underlying terminal condition). Similarly, your broad-brush use of the term "cognitively disabled" to infer that people with dementia, mental retardation, and PVS (those like Terri Schaivo whose cerebral cortex was functionally eviscerated) all somehow require the same level of medical intervention at every point of their lives is suspect at best.

There is a vital and much-needed place in the marketplace of ideas for conservative bioethicists like yourself. And your blog often points out excesses and abuses that clinicians, ethicists, and observers alike should confront. (Yes, I read your blog semi-regularly.) It is just too bad that you appear to hold your left-of-center colleagues' views (and apparently, their motives) with a thinly veiled contempt. Your semi-ostracism from the bioethics mainland appears largely of your own making and more about the tone of your arguments that their content.

 
At July 21, 2008 , Blogger Okakura said...

Brad's mom: Bless you and your family for the terrible suffering that you endured (and still bear) and for your family's great courage in the face of this great loss. Brad sounded like an absolutely fantastic kid and I am so sorry to hear of his passing and of your pain. I will light a candle in his honor tonight and hold you and yours in my prayers.

-Oka

 
At August 18, 2008 , Blogger T E Fine said...

Dear hamstergirl,

Here's my issue. Let's say you, as you are right now, pain and all, are drowning in an ocean. Unwillingly, let's say. Let's also say that five other people, with no chronic pain or crebral palsy, who are also drowning, again, unwillingly.

Here I am, on the beach, and I'm told that I can save one of you but not both. My job is to decide which of you to save, and my decision is supposed to be based on which of you, the group of five or you, has the higher value as a person.

My ish - from the way I believe, you have absolute value. That means that your value, exactly as you are right now, is both equal to the group of five people who are drowning, and to each individual in that group who is drowning. Likewise, each person in that group is equal to your value, and to the value of ten other people who might be drowning, and to each of those individuals, and to every huamn being on the Earth, both individually and collectively.

Therefore, decisions about someone's health and well-being should NOT be based on "who has greater value," because exactly as you are, you have absolute value.

So my problem? I get peeved at people who somehow think they're "better" than someone else. Is someone better than me? He might be better at reading Ancient Greek, or at Pole Valuting, or at Praying. But he and I have the same value and will for as long as I live. Every person on Earth has equal absolute value, from the saints working with AIDS babies to murderes on death row!

I just wanted to mention that some people really do feel this way and that I hope that we can outweigh the voices of those who think that somehow someone isn't good enough to live. And that you'll get more support.

Peace,
Tabs

P.S. - I hope you stay. It's good to have your voice here.

 
At August 18, 2008 , Blogger T E Fine said...

Dear Brad's Mom,

I'm sorry your son died. It sucks. It's awful, and I wish I knew how it felt so I could give you some comfort of some kind. I can't, and all I can say is, I wish it hadn't happened, and I'm sorry it did, and I wish I could take some of the pain from you. Losing someone you love sucks. I hope that everyone around you gives you the love and support that you need.

I'm so sorry,
Tabs

 
At June 01, 2009 , Blogger Ianthe said...

What's wrong with, if s/he's alive, everyone knock themselves out to keep him/her alive. Period. There's plenty of money and resources in the world and the economy. It's just a matter of priorities and redirection. Everything else is an excuse.

 

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