Jamie CaulkThis was really hard for me to read as this is what they said about Jamie and a blood clot in the basilar artery from his auto accident. The doctors told us that the blood clot showed where the stroke occurred.

Oh, how I wish I knew what I know now about the lie of brain death. It is so hard to speak intelligently when you just don’t understand what the legal definition of death is. I guess this is why I write to give other families a chance to understand when they say your child is dead.

In an article from the May 6, 2016, Newsweek Magazine entitled, “Given the right stimuli, brain activity in patients in persistent vegetative states can bear similarity to non-injured people,” author Don Heupel highlights two separate but related issues related to serious brain injuries.

Maggie Worthen was a week away from graduating from Smith College in May 2006 when she suffered a massive stroke. Her classmates found her unconscious on the floor of her dorm room, unable to speak or move.

A CT scan revealed that the stroke in the otherwise healthy 22-year-old was brought on by a blood clot in the basilar artery, a critical blood vessel in the back of her head that supplies oxygen-rich blood to the brainstem, the part of the brain that controls the body’s basic life support system. It took 12 hours before neurosurgeons at the closest trauma center were able to remove the clot and restore blood flow to Maggie’s brain.

“They told me most people don’t survive these kinds of strokes. If she made it through the next couple days, it was almost certain she would have no meaningful recovery,” says Maggie’s mother, Nancy Worthen.

As Nancy grappled with Maggie’s prognosis, she felt pressured to make some harrowing choices. One doctor advised removing Maggie from the ventilator and letting her die. Another suggested foregoing the insertion of a feeding tube and tracheotomy that would help Maggie breathe. A representative from an organ procurement organization approached her for consent to transplant Maggie’s organs.

But Nancy resisted them all, believing in the resilience that had always defined her daughter.

MRI's and CT scans can not determine consiciousnessDr. Joseph Fins, chief of the division of medical ethics at Weill, says Maggie’s experience and that of others like her raise troubling questions about how people with serious brain injuries are diagnosed and cared for. “Patients like Maggie are routinely misdiagnosed and placed in what we euphemistically call ‘custodial care’ where they have no access to any treatments that might help them recover or give them a chance of engaging with others,” says Fins, even as research suggests that 68 percent of severely brain-injured patients who receive rehabilitation eventually regain consciousness and that 21 percent of those are able to one day live on their own. A recent post made on www.sideeffectsofxarelto.org about brain blood clots demonstrates a truly somber attitude to victims of such injuries.

Dr. Joseph Fins interviewed Maggie’s family along with over 50 other families in similar situations. Almost all their stories shared a common thread – that the injured person was immediately “written off” and families were asked to make “what he calls ‘premature’ decisions about their loved one—such as whether to withhold or withdraw care or to consent to organ donation.”

(Yes that is the choice)

Dr. Nicholas Schiff, a neurologist at Weill Cornell Medical College, says even one person wrongly diagnosed when they have intact mental life is one too many. “Imagine being conscious in a body in which you have no control. It’s difficult to imagine anything more terrifying.” He attributes misdiagnosis to a number of factors, chiefly neglect. “Society as a whole has given up on these people. When somebody is not waking up, it gives people an uncomfortable feeling. It’s easier to say, ‘Nope, they’re not there.”

(And those that believe there is HOPE have their claims and faith disregarded)

EEG tests have shown that brain injured patients can demonstrate consciousness undetectable in a bedside test. And because the technology is portable, cheap and doesn’t require a patient’s active participation.

(We asked for and didn’t get the EEG)

“There are a lot of people out there who could be helped but aren’t,” says Schiff. “All patients should be treated as if they too have that same potential for recovery.”

(Oh this is my hope and prayer) 

Read more details at Source: Brain Imaging Scans Show Some Vegetative Patients Are Living on the Edge of Consciousness by author Don Heupel

Three clicks for ChadTough

I have a HUGE favor to ask you all today. It won’t cost you a dime and only 3 clicks of your time for the next 2 weeks. 

September of 2014 a little boy from Saline, Michigan captured my heart, he reminded me so much of my Jamie with his blonde hair and sparkling eyes. His name was Chad Carr. 

Chad had been diagnosed with cancer that eventually took his life called DIPG or Diffuse Intrinsic Pontine Glioma. 

There is NO CURE  for this pediatric brain cancer. 

Did you know that ONLY 4% of all cancer research goes to children’s cancer research at our National Institute of Health? Think on that next time you see the TV commercials with kids in them.

ChadTough

The mission of The ChadTough Foundation is to fund research and raise awareness for Pediatric Brain Tumors with an emphasis on Diffuse Intrinsic Pontine Glioma (DIPG) 

How you can help

Infiniti Coaches Challenge

Here is how you can help.  Infiniti is sponsoring a contest to see which basketball coach can win money for their charity of choice. Coach Beilein from the University of Michigan has chosen the Chad Tough Foundation. 

Many of us have been helping for weeks, we are now down to the fourth and last round. 

The winner of the ESPN challenge will win 100,000.

We need your help for the next 2 weeks to win  $100,000 for the ChadTough Foundation to continue to research a cure for DIPG in kids. 

I’m not asking for money JUST  3 clicks of your mouse. I haven’t missed a day even when I had that awful flu. 

30 seconds of YOUR time to help find a cure for Pediatric Brain Cancer, especially DIPG. Watch the short video below and commit to:

3 clicks = $100,000 to help kids like Chad and give them hope. 

Vote Coach John Beilein

Michigan

The ChadTough Foundation

Please share on Facebook and Twitter.

VOTE Coach Beilein

University of Nevada student Hanna Lottritz was mistaken for “brain-dead” after she fell into a coma last July following a round of binge drinking.

The 20-year-old’s story is a cautionary tale for alcohol abuse, but also for the danger inherent in the contentious concept of “brain death.”

Lottritz, who turned 21 last Wednesday, said on her blog she would not be doing any shots or getting wasted to celebrate coming of legal age, and she advocated for responsible drinking, because, she said, “I don’t want anyone to go through what my family went through.”

The journalism student chugged an entire Solo cup of whiskey at a music festival last summer. She collapsed five minutes later and then had to be intubated and life-flighted to the hospital in critical condition.”I was in critical condition, suffering from acute respiratory failure and acute alcohol intoxication,” she said. “My blood alcohol concentration was .41 when I arrived at the hospital, five times over the legal limit.”

“The doctors thought I was brain dead because I was completely unresponsive,” Lottritz continued. “My pupils were sluggishly reactive, I had no corneal reflex and I wasn’t responding to verbal or painful stimuli.”

Doctors initially didn’t expect her to make it through the night, but she woke up 24 hours later.

Lottritz’s waking up so soon after her injury is where her case departs from so many others with patients who remain unresponsive for a period of time, falling into the dangerous scenario of being presumed dead, especially when medical facilities or family members are quick to remove treatment or there is a push to harvest organs.

The question of determining when a person is brain-dead has been the subject of considerable controversy for some time, with disagreement over the legal definition of brain death.

Read more here: https://www.lifesitenews.com/news/yet-another-case-of-mistaken-brain-death-diagnosis-in-nevada

 

Source: Doctors thought 20-year-old was ‘brain dead’ after birthday binge drinking: they were wrong | News | Lifesitenews

Not All Hospitals Comply With Brain Death Criteria

Not all hospitals in the United States are following guidelines on determining brain death, a new study suggests.

 

Calendar kept by daughter Lisa SturmThe new study included hospital policies from 492 hospitals or healthcare systems with adequate data for analysis, representing those from all 50 states (some analyses included 491 policies).

Of the total, about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination. Many policies still allow for more junior physicians to determine brain death, the authors noted.

Unfortunately most hospitals (97.4%) required apnea testing which is the WORST thing to do for a severely injured trauma brain injured patient.

Uniform Determination of Death Act (UDDA)

The Uniform Determination of Death Act (UDDA), drafted in 1980 by the National Conference of Commissioners on Uniform State Laws to provide “comprehensive bases for determining death in all situations,” determined death by the following criteria:

“An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”

So the UDDA allowed the determination of death to be made in accordance with accepted medical standards, but left it up to each hospital to determine those standards.

I know you’ve heard me talk about if you were injured in Iowa your treatment may be different than IF you were injured in Michigan. If you were taken to the U of M Hospital your care may be different from if you are taken to Beaumont Hospital in the suburbs of Detroit. My point is that it appears and I could certainly be wrong in my intepretation is that the authors are now advocating for more uniform, written standards and protocols in hospitals.

Comments on the article

Here are some of the comments on the original article that I found revealing. (Highlights mine, links mine, no attempt to correct the spelling in their comments)

NV

As an RN who was involved with brain death organ donation in the 1970s, even then I had questions about the diagnosis such as the claim that such patients would die anyway after 2 weeks even with a ventilator but I was assured that greater minds than mine had it all figured out.

I really became alarmed when I saw that pregnant women diagnosed as brain dead were sometimes able to gestate their babies for months and these babies could survive and be healthy. Obviously, the 2 week claim was wrong but I still see it used today.

Later, I served on an ethics committee where one doctor canvassed the brain death criteria in our area, found that the criteria varied wildly but yet suggested that our hospital change its criteria to match the least restrictive one he found so that we could harvest more organs. I protested but was told that I didn’t understand how much these organs meant to the recipients.

I have also even seen a doctor tell a family that their loved one was brain dead even when the could take some breaths without a ventilator and despite apnea being the crucial criteria for brain death. In that case, the goal was not organ harvesting but rather to persuade the family to take the ventilator off a patient with a poor prognosis and give high doses of morphine as “comfort care”.

I am also appalled that this article repeats the claim that “there have been no documented reports of regaining function after a declaration of brain death” despite the recent Zach Dunlap and the current Jahi Mahi cases. These cases and other such cases should be written up for medical journals, not ignored.

Thus, I am not surprised by the problems this article presents. I hope it will lead to unbiased further research even if it results in a reexamination of brain death and even if it means fewer organs for people like my daughter-in-law who needs a kidney transplant. In the meantime, we are hoping for a living donor.

 

Dr.Kent Lyon 

Unfortunately, federal regulations and financial incentives tend to encourage hospitals to pursue a rushed process of diagnosing brain death and procuring organs, with no incentives to make accurate diagnoses. Thus, Dr. Geer’s effort to “light a fire” is likely to make little headway with disinterested hospitals.  A better approach to organ procurement would be to financially reimburse potential living donors for kidney transplants than to appeal to a professionalism that runs counter to federally constructed financial incentives for procuring cadaveric organs.

Dr. Leon Zacharowicz

 

Why am I not surprised?

AR

This past summer, my nephew suffered a TBI in a motor vehicle accident.  I received the phone call saying that he was “brain dead,” and his organs were going to be donated, but my sister had requested that he be kept on the ventilator until all family could come to say goodbye.  Through a series of unexpected events, my 8 hour trip turned into a 24 hour trip, and I was the last to arrive at the hospital.  When I arrived, I was told that a possible pupillary response had just been observed by a nurse.  A few hours later, he was re-assessed by the neurologist and a definite pupillary response was present.  When I asked the neurologist about the type and location of the injury, I was told “It doesn’t matter – this is not a survivable injury. The brain is dead.” The trauma specialist told us that it was a diffuse axonal injury to “most of” the left hemisphere, with additional damage from multiple strokes in the right cerebellum. After five days with a Glasgow score of 3, he opened his eyes and looked around.  His GCS increased to 5, then 6. He began breathing on his own.  After weeks in CCU, additional weeks in a neuro step down unit, and more weeks of inpatient TBI therapy, he was able to go home.  It has now been 6 months since his injury.  He is walking, talking, laughing, reading, texting.  His long term memory, personality, and sense of humor are intact.  He’s still working on his short term memory, cognition and vision, with remarkable improvement and strong motivation.  He’s waiting impatiently for snow so he can start cross country skiing.  He will be re-starting college in a few weeks.

Was it a mistake?  Was it a miracle?  A little of each?   I have no idea. The trauma specialist said it is proof that God exists.  I just know that I am profoundly grateful.  And I believe there need to be uniformly followed guidelines for declaring brain death, including multiple assessments with a waiting period between assessments.

Dr. Arthur Drazan

What happened to the proven nuclear medicine brain scan?

Dr. William Goldie

I am concerned  that there is no comment about standards for use of EEG as ancillary  test for determining brain death.  Many well trained specialists who consider themselves experts in brain death will order EEG with no understanding of the necessary standards for using EEG in this setting.  Few hospitals have EEG technicians who are qualified to perform ECS EEG, and few have neurologists available who are qualified to interpret ECS  EEGs.  I would hope that brain death policies include the use of quality EEG to assist with the clinical diagnosis of brain death.

Does Dr. Goldie not know that EEG have not been used since the Minnesota Criteria?

When Harvard first published their criteria in 1968, EEG’s were a part of the evaluation, then in 1971 the Minnesota criteria along and they decided patients didn’t need EEG’s because too many families got upset when they saw brain waves. Then the “Pittsburgh protocol” came along and they began to take organs not from “just” the “brain-dead” patient but from patients after cardiac death. Now in Denver they are waiting 75 sec for a babies heart to stop and then proceeding with organ harvesting.

I believe life and death are NOT human decisions but one that only God can make. He gives life and He takes life away.

 

Parental Rights

George Pickering II’s son was declared “brain-dead” after he suffered a massive stroke in January. In an effort to buy time for his son, he did the wrong thing for the right reasons. He brought a gun to the hospital to give him time with his son.

“They were moving too fast. The hospital, the nurses, the doctors.They were saying he was brain dead, he was a vegetable, said Pickering. “During that three hours, George squeezed my hand three or four times on command.”

George Pickering II’s son was declared “brain-dead” after he suffered a massive stroke in January 2015.

The hospital ordered a “terminal wean” which is a process that slowly ends a person’s life by removing life support.

George Pickering son HAD signed the donor card.

However, because he was not ready to let go of his son and the hospital staff was moving too quickly (they usually do) his son, George Pickering III, is still alive and well because of it.

“There was a law broken, but it was broken for all the right reasons. I’m here now because of it,” said Pickering’s son, George III. “It was love, it was love.”

It wasn’t until several weeks after the incident that Pickering’s son said he learned his family was told he was unlikely to recover from his stroke and coma. Pickering said he still has people come up to him and say, “I thought you were dead.”

“It’s the duty of a parent to protect your children and that’s all he did,” said Pickering’s son. “Everything good that made me a man is because of that man sitting next to me.”

Watch the video of the father and son here.

George Pickering II and his dad

Federal Regulations for Organ Donation

The staff at Tomball Regional Medical Center had notified Donate Life Texas an organ procurement organization that Pickering’s son was a donor.

Remember this is Federal law when there is a potential organ donor whether they have signed the organ donor card or not.

In 1984, the National Organ Transplant Act (NOTA) was signed into law requiring this. OPO staff review the potential donor’s medical condition and history to determine his or her eligibility for donation. The OPO will search the donor registry to determine if the patient is a registered donor.

IF the patient is on the donor list it is an uphill battle for the parents and in most cases especially Trauma 1 hospitals.  The organ donor contract will NOT be violated and the harvesting of the organs will proceed. Occasionally in smaller hospitals they will give the patient a bit more time if the parents are not in favor of the donation.  

Federal law requires timely notification

“Timely notification” means a hospital must contact the OPO by telephone as soon as possible after an individual has died, has been placed on a ventilator due to a severe brain injury, or who has been declared brain dead (ideally within 1 hour). That is, a hospital must notify the OPO while a brain dead or severely brain-injured,  individual is still attached to the ventilator and as soon as possible after the death of any other individual, including a potential non-heart-beating donor. Even if the hospital does not consider an individual who is not on a ventilator to be a potential donor, the hospital MUST call the OPO as soon as possible after the death of that individual has occurred.

(c) Enforcement of OPTN rules—(1) OPTN recommendations. The Board of Directors shall advise the Secretary of the results of any reviews and evaluations conducted under paragraph (b)(1)(iii) or paragraph (b)(3) of this section which, in the opinion of the Board, indicate noncompliance with these rules or OPTN policies, or indicate a risk to the health of patients or to the public safety, and shall provide any recommendations for appropriate action by the Secretary. Appropriate action may include removal of designation as a transplant program under §121.9, termination of a transplant hospital’s participation in Medicare or Medicaid, termination of a transplant hospital’s reimbursement under Medicare and Medicaid, termination of an OPO’s reimbursement under Medicare and Medicaid, if the noncompliance is with a policy designated by the Secretary as covered by section 1138 of the Social Security Act, or such other compliance or enforcement measures contained in policies developed under§121.4  http://cfr.regstoday.com/42cfr121.aspx#42_CFR_121p7

 The hospital that does NOT notify the Organ Procurement Organization, (“usually within 1 hour”) they can lose their reimbursements. So there you go.

I am thankful this family is together to celebrate Christmas. Even though as stated above I would never recommend taking a gun into a hospital… his son is alive and not dead and they are not grieving this Christmas.

I admit this was bittersweet to read as Jamie also had a stroke and we were told “no hope”, “devastating injury”, “brain dead”, “no one recovers”.  IF I ONLY KNEW THEN, WHAT I KNOW NOW.  Hopefully other families will learn from my experience.