Last week, during the national ADAPT Action here in Chicago, several people forwarded one of those stories that brought to mind Yogi Berra’s “This is like deja vu all over again.”
The story that provoked this “I’ve seen this before” feeling was about Jill Finley, who came out of a coma – 14 days after its onset and after her husband had ordered removal of life-support after some not-so-subtle nudges from the physicians:
Doctors wouldn’t come right out and say that the situation was hopeless, but they did say that only one to two percent of such cases recovered to live normal lives.
“It was grim,” Ryan told Vieira. “I’ll put it that way. Everything they told me was grim.”
Ryan Finley found his wife unconscious and unresponsive one morning and administered CPR he had learned many years earlier. They now know Jill has a condition that causes her heart to stop beating and now has a pacemaker to correct for the condition.
In the same story, Jill Finley told Meredith Vieira that it was a “miracle” for her to be alive and talking.
She might be right, but probably not for the reasons she’s thinking.
The past year or so has had stories of other people written off early after going into a coma. Back in June of this year, we had the story of Jesse Ramirez. He suffered traumatic brain injury in an automobile accident. His wife, acting on the negative prognosis given to her by physicians, ordered the removal of her husband’s feeding tube a little over a week after his injury. Other members of the family contested her action, which bought valuable time, time in which Jesse Ramirez started to recover:
His siblings and parents refused to give him up for dead, and today, Jesse Ramirez is alive and conscious.
Two weeks ago, he was the center of a family battling over of whether he should live or die.
Now, he can hug and kiss, nod his head, answer yes and no questions, give a thumbs-up sign and sit in a chair.
Some family members, quoted in media reports, called the recovery of Jesse Ramirez “a miracle.”
In an ABC News story attempting to explore the ethical implications of the Ramirez case, Dr. Steven Miles gave a frank assessment of apparent rush to end the life of Jesse Ramirez:
“This case is about a hasty clinical decision which should have never been made,” he says. “In terms of the process itself, stopping the feeding tube this close in time to the injury is actually pretty unusual.
“This is about malpractice, not about a persistent vegetative state.”
It’s gratifying to see Miles call the medical advice in the Ramirez case for what it is. However, I have to wonder if he really can support his assertion it’s “unusual” for doctors to be pushing for treatment withdrawal so soon after an injury. The Ramirez case only became public because of a legal battle between family members. His recovery was made possible because of the court order stopping the removal of the feeding tube.
It seems reasonable to assume that in most cases, family members reach agreement, and no one other than they and the doctors who gave them advice know about what happened. Cases like Jesse Ramirez and Jill Finley could be rare – or they could be the tip of a large iceberg.
There’s one more case that should be mentioned in this context. In January, 2006, a judge ruled that 11-year-old Haleigh Poutre should be entitled to “pass away with dignity.” The Department of Social Services had sued to end Poutre’s life-support less than two weeks after alleged abuse by her adoptive parents put her into a coma. Her physicians at Baystate Medical Center described her as “virtually brain dead.” One day after the judge’s ruling, verified reports came out of the hospital that Haleigh was conscious and responding to commands. She would never have had the time to recover without the suit brought by the person charged with abusing her, challenging the state’s authority to end her life. Her death and the decision that authorized it would have just been one more “end of life” case.
There was considerable fallout in the Poutre case, but most of it fell on the Department of Social Services. The physicians at Baystate Medical Center avoided being challenged by the press and the public. The same kind of failure we see in the kinds of things not being asked of the physicians who were in charge of caring for Jesse Ramirez and Jill Finley.
The next time you see a story like that of Finley, Ramirez, or Poutre, avoid thinking of them as “miracles” and think of them as survivors. And let’s ask their doctors how many other patients they’re treating aren’t quite so lucky. –Stephen Drake
Are you sure you want to be an Organ Donor? Since my daughter’s care at the hospital, I began to ask some questions and this is what I found out. I will back up, to tell you what led me to this discovery. My daughter, Melissa was hit by a car as she was crossing the street. She suffered from acute brain trauma. A miracle happens moments after the accident. The miracle was, an ambulance just happens to pass by within minutes of the accident. My daughter is given care immediately. She arrives at the hospital within 18 minutes. Later, I found out that treatment, such as Mannitol and hypothermia therapy for acute brain trauma could have been given by the EMT’s. She should have been carried to a level 1 trauma center because of her multiple traumatic injuries, vitals, and the GCS score. But the medical director of the nearby local hospital did not advise the EMT’s to give my daughter
1) Mannitol
2) Hypothermia therapy
3) Did not call for the neurosurgeon until 23:33, almost one hour after my daughter’s accident.
4) To transfer her to a level 1 facility that had the expertise to take care of her multiple traumatic injuries.
Instead my daughter is taken to the nearby hospital that the base director is working from. She gets evaluated and a CT scan done. But what I have learned is that there is a golden hour of opportunity to stop the Intracranial Brain Pressure from rising. There are many aggressive treatments that can be done for acute brain trauma. Later, I found out that hypothermia therapy and a CSF drain could and is performed in the E.R. at this hospital. I wonder why my daughter did not get this treatment? But yet she will get mannitol as a treatment. Surgery is what my daughter needed immediately, she got mannitol. Her ICP came down from 80 to 25. It is noted that improvement is made. Why, if improvement is noted, wouldn’t you begin the next line of treatment? How can you go from treatment in one minute and decide not to treat in the next minute. By the time this takes place the Doctor had already looked at the CT Scan and the patient. Why would you give mannitol? She did not become more fatal in one minute? Then the doctor made the decision not to advanced care. He said, “she is a poor prognosis and poor outcome”. Instead of going by the Scientific facts, like the fact that she is breathing over the machine, her heart is beating, she is maintaining blood pressure and regulating her body temperature. These functions are controlled by the BRAIN not the VENT. He went by his feelings. So my daughter who is breathing and has a weak cough, all signs of brain stem function, is let to lie there in pain with no treatment except supportive care while they wait to harvest her organs. We are asked within two hours for her organs via the phone. I must insert this is our word against the doctor. He denies this now. But they can’t deny what is on the medical report. It says, “Our daughter is coughing up until 3:00 a.m. It says the ongoing plan is to harvest her organs. The doctors and hospital had an option. Operate on my daughter and hope for a miracle, or call it quits, and let my daughter’s life benefit the federal government in lieu of the local donor stores to the passing out of her organs to the world. If there had not been an option, my daughter would have gotten medical care because the doctor and hospital need to make money despite the futility of their efforts.
This was the first heartbreaking awakening that I found out: A doctor and hospital can withhold care from you if they think you are futile. This is a contradiction to all the care that cancer patients get. I guess it is where the money is that deems if you are given care, not whether you are futile or not.
The whole reason for our suspicion of this Hospital and it’s Doctors is the careless and aggressive way in which we were approached for our daughter’s organ. The first time within two hours, and over the phone. This is our word against theirs. Second, moments after I arrive, standing by my daughter’s bed, it seems as though it is being shouted from the nursing center about the designation on my daughter’s license. It was thought at that time, her Colorado’s license had a donor designation on it, but maybe not her Oklahoma’s. They had to make sure both complied with being a donor. So I am standing by my daughter, feeling pretty good, because my daughter looks amazing for just being hit by a car. Her face is beautiful, she looks like Snow White, asleep, awaiting the magic to wake her up. All her limbs are intact, she is breathing, and I am told all of her major organs are unharmed. I am excited, because I think that there is a possibility that my daughter might make it. So I start talking to Melissa, I ask her to move her toe to let me know that she knows I am here. She moves the left baby toe and the one next to it. She did this four times when I ask her to. I know it was purposeful and a direct response to my asking her, because she did it four times when I asked her to. Then my husband’s Aunt Linda comes in the room from the meeting with the doctors. This is when and how I find out about organ donation. They told her they are checking Melissa’s license in Oklahoma to make sure that it complied with her Denver licenses. This is when I find out that being a donor does not mean you are in the morgue. It means something different, in fact I had no idea what it meant to be a donor. But I did not know that it meant being operated on while you are alive, heart beating and breathing. The very thought of this sends a sickness to my stomach that can’t be described. All I can think about is Brave Heart. The disembowelment of a live human being. This is wrong. Every time they scraped the bottom of her foot she pulled it away. Yet they say, “This is insignificant, it is spinal.” My thought, ‘Why do it, if it is insignificant.” It is noted continually by the nurse as he is questioning my daughter’s response to painful stimuli in the upper limbs and lower limbs. Is it Spinal or a reflex, he writes with many question marks to follow??? Yet nothing is done. Later, I read, ‘that my daughter contracted her thigh muscle to toe nail bed pressure.” This is significant because the thigh muscle is a skeletal muscle and is only activated by the cortex of the brain. Other signs of life were that my daughter started her menstrual cycle, which is controlled by the hypothalamus part of the brain. My daughter kept her temperature constant; this is regulated by the brain. The beating of the heart is regulated by the brain. My daughter lifted her body off the bed three times. The doctor said “this could be motor”. Motor is a function of the brain. Still, nothing is done to help my daughter. The nurse even said, “my daughter breathed over the machine, and coughed two days before she passed. Yet, nothing is done, no food or blood to relieve the anemia. She did not get pain medication. A defrillbilator could have been implanted in her to assist her heart to continue. Nothing is done on the offensive side, all she got was support, the vent and hydration. People who are sick need food, blood, pain meds and care. The ventilator is not functioning as the brain; it is just a machine that just pushes air through the lungs, everything else like temperature, heartbeat, and contractions are controlled by the brain. They said, “My daughter has doll‘s eyes, but it says on the medical report that it is not checked. I cannot remember them checking for the supra-orbital reflex. I do not remember them checking her hands for nail bed pressure or her chest either. After our stand that our daughter deserved first rights to her organs, they took us before an ethics committee. We invited a lawyer to sit in on this ethics committee meeting. The ethics committee ended by saying, “we can keep our daughters organs, and that they are now off the table.” I never knew they were on the table, but the medical report says that there was an ongoing plan to donate her organs even before brain death was documented. In fact, brain death was not documented. They blame this on me, but the truth is they had ten hours before I arrived to do any test that they wanted. But they did not do it. Why? I believe they did not do it because my daughter was still coughing up until 3:00 a.m. This is a brain stem function. Brain death can only be declared when all brain stem function is absent. My daughter was alive when the decision to withhold care from her was made. This is equivalent to performing CPR on a drowning victim and in the middle you stop and say, “This is a poor prognosis and poor outcome. Let’s stop in the mist of resuscitation. When I was there, they could have done anything they wanted, I was just the mother, watching, really the nurses were taking care of my daughter. It says on the medical report that doctors were talking to us. But this is not true. Most of our communication was with the nurses. Later, with a doctor and the head of nursing. And with the doctor, I had to beg blood from in exchange for an EEG. Can you believe this? I, a mother had to barter for blood products in a hospital. When the organs were taken off the table, I thought everything was going to be okay. Later, after reviewing the medical records, I realized that my daughter only got supportive care while they were waiting for her to die. Because at that time I did not know she was not getting food. If you do not get food, you will die especially when you are weak, in trauma and shock. One treatment for brain trauma is nutrition; it needs to be started within 24 hours. My daughter was anemic, the doctor reports, “It is probably due to a loss of blood.” But blood products are not given to relieve the anemia. The medical doctors know that my daughter is going to have cardiac failure. But they do not try to prevent this from happening by implanting a defrillbilator in her to keep her heart beating. My daughter is in pain, and shock. She never gets pain medication. I read that nutrition was not given because it would complicate the harvest, I believe this is probably why pain medication was not given. It would complicate the harvest. The political word of the day: recover. But this is incorrect, you have to lose something in order to recover it. Organs are not lost they are taken from precious brain injured patients. Can you not see how horrible this is, to die because your organs are being cut out of your body without anesthesia. But even after the world demands anesthesia, it is still wrong. God is not going to put up with this evil. My daughter died because she did not get care because the doctors deemed her futile, and brain dead without documentation. My daughter was never brain dead. She showed the doctors many times that she was alive, by coughing, withdrawing her legs, contracting her thigh, and lifting her body off the bed, maintaining heartbeat and regulating her body temperature.
Now this is what I have found out about organ donation, and the donor operation. The first thing I found out is that there are critics to brain death diagnosis and organ donation. These critics believe that brain death was concocted for one reason, to obtain profuse organs. It so happens that two variables had a need. The variables were the discovery of anti-rejection drug and the ability to transplant organs. The need was organs. Where oh where can we get profuse alive organs????? Organs have to be oxygenated for a successful transplant. You can only get these organs from alive patients. The Ad Hoc Committee had to think real hard. Where can we get oxygenated organs? We have to get them from people who look dead, that can’t communicate with the outside world as to whether they are alive or not. So this was their plan to take organs from a suffering humanity. The only problem is that these organs are being taken from brain alive patients. I have read that the donor operation goes like this. The patient is wheeled to the Operating Room Theatre. He is hooked up to a ventilator, he is breathing, his heart is beating, and his blood flowing. He is met with transplant teams from all over the world. Each team is there for their piece of the donor. Some are there for thoracic cavity, others are there for the abdominal region, and the others are there for left-overs. And the poor nurses are there to watch in horror and for the clean-up. Now that everyone is there, the donor’s hands are tucked under his side, to provide a better opening for the thoracic cavity and the abdominal region. The anesthesiologist is there to make sure the’ rule of 100”s is being managed, he is not there to provide anesthesia, Anesthesia is not given, so the brain injured victim could be conscious when this surgery takes place. It is said that a neuro (brain)muscular blocking agent is given to keep the brain from transmitting to the tummy not to tighten up to the approaching knife. This is not given for the benefit of the brain injured victim. It is given for the benefit of the surgeon, it is hard to slice into a tightened stomach, and to operate on a moving victim who is trying to take the knife away. It is said that the blood pressure will rise from 100 to 220 as the knife is inserted into the thoracic cavity. The blood pressure is controlled by the brain. It is said, if the brain patient victim suffers a heart attack and dies before the operation is complete that they will resuscitate him back to life until remaining organs are cut out. It is said that the donor will begin to move his limbs and may even do more complex moves like sit up. They say this is all spinal. But I say it is the adrenaline rush that we humans get when we face death situations. The adrenaline gland is a function of the brain. The donor’s body temperature will go down. This is regulated by the brain. The medical community explains all of these functions away. But these are clear functions of the brain. It is said they have to convince the novice nurse that after this display of life that this patient is really dead. I am not a medical doctor or nurse, but I know what is living and what is dead, I do not have to be convinced. There is a propaganda machine that has been promoting this lie for over 32 years now. It has been adopted worldwide amidst all this controversy. This machine wants to force us all to be donors by many laws. They hire companies to come up with ways to make us all donors. This company suggested raising the donor age to 70, but concluded this could cause a problem. Because you know who wants to buy the heart of 70 year old when the heart of a twenty year old one is available. The author suggested a tier system. I guess this means you will have to organize the organs by how old they are. You would have to advise the recipient of the age of the organ. This I think could cause a real nightmare for the organ industry when the word gets out from a disgruntled recipient that I got the wrong organ, I paid for the 20 year old heart. They also suggested education. Educate the people to be donors and shame the ones who do not. This sounds like coercion. Why is there such a frenzy here? More than half of the organs are going to people who are at the end of their lives. It is not like they haven’t lived a fruitful and long life. According to the Bible we are only promised seventy years. And if we are strong in the Lord, we could live longer. Does it make sense to give an elderly person a daily regimen of poison a day? The side effects of this drug is devastating. This drug will break down the immune system and will cause cancer. It also is very expensive. So does it make sense? The most prevalent is the presumed consent law. But I am going to challenge the designation to be a donor on the driver license as invalid for four reasons:
1) It is a contract, a contract has to benefit both parties, and this contract benefits only one the United States Federal Government. The organs of a donor can be sold for a million dollars.
2) Before signing a contract, you must be able to read the contract. The donor needs to know that the surgery to donate his organs will be done on the basis of a brain death diagnosis. That he will not get anesthesia. That he might suffer a heart attack. And if he does suffer a heart attack he will be resuscitated ,brought back to life until remaining organs are cut out. And that his organs might not even be used.
3) The official at the driver’s license bureau is not qualified to determine who is of a sound mind before signing this important document.
4) The Federal Government is asking a minor to consent to a surgical operation without the permission of his parents.
The presumed consent law will be challenged before the Supreme Court.
1) It takes our freedom away to choose or give a gift.
2) It is discrimination against the poor and uneducated. Only the rich who can afford to go to a lawyer to get living directive will be able to be excluded from being a donor. Only the educated and informed will be able to make a decision on the basis of informed knowledge.
More facts that I found out:
The number one donor will be a 24 year old male, will be uninsured and will live in the Northeast.
How can only the uninsured suffer brain injury????Give me a break.
The government demands the hospital and doctor to notify the donor entity of a potential donor.
UNOS says, that they will make the smaller hospitals comply with this law, either with carrots which are incentives or sticks which is legislation.
How can you bring legislation into being if you are not a Congressmen or State Senator?? How can you boast that you have that much authority to get your way??????
I think this should be challenged because this violates HIPPA. No one, not even the federal government should be able to share your medical history without your permission.
With advancement in treatment for brain trauma only 20% or less will die. So how does the government get organs? How can there be so many donors if 80% will survive and recover to a good outcome?
It is a government law that the donor stores have to make quota or get disenfranchised. How can you put a quota on organs? This is not a good policy, pressuring someone to come up with living organs. How many organs are expected to be delivered a month? Could someone explain this law to me????
Who gets the money?
Who are the recipients?
Are they rich and just want to live longer?
Most recipients are over the age of 50, the majority over 60.
The donor store gets almost a million dollars for a free product, they in turn will make the family of the brain injured victim pay the hospital bill that incurred before the deal is sealed. Like I said, the donor is more than likely to be uninsured. This is a predictor. Therefore the grief stricken patient’s family will have to pay thousands in doctor bills, paying for care that their loved ones did not get. But, the donor stores walk off with millions in free donated merchandise. How much profit is the donor store making?
I hope the whole world hears my cry, donor operation is horrific, and it is potentially the disembowelment of a live human being who does not get anesthesia. This is not a dignified operation. The nurses say they “feel sad, we they are left to rinse the blood out of a hollow shell. It is a numbing feeling. We would not even treat the bodies of our animals like this. There has to be a better way to prolong life than this.
Sincerely yours,
Melissa’s mom, Carolyn
I’m going to try and get my children not to be organ donors, as well as changing my own status to non donor. I am so very sorry for your loss. Thank you for sharing. God bless you and comfort you always.
Love In Christ Yashua…..
Diana
My heart hurts for you as I read this story over and over and t makes me VERY angry.