Family wants to keep life support for girl brain dead after tonsil surgery #1

[SwampMama]

I have been talking about the need to update the criteria on brain death and I found that it was updated in 2010. Here is an article about that.

When is someone brain dead? Experts revise guidelines
http://usatoday30.usatoday.com/news/health/2010-06-12-brain-dead_N.htm

"Determining brain death is a complex process that requires dozens of tests to make sure doctors come to the correct conclusion."

So it has been updated to see that doctors "conduct a lengthy examination, including following a step-by-step checklist of some 25 tests and criteria that must be met before a person can be considered brain dead."

Also ""We found no credible report of anyone who was brain dead and who woke up and survived". ( I hope Dr Byrne takes note of THAT.)

 

[Trino]

How long can Jahi last?

I found different ideas... One said the longest recorded (no validity for this) was 210 days. Another said the kidneys, liver, and heart would deteroriate and shut down - seemed relatively soon.

(Note: I found no mention of pituitary and thyroid glands, per Dr. Byrne.)

How will her family see her? Will they make weekly visits to SoCal?

I cannot help but wonder about the other 3 children. No mention of them. I wonder if they're younger.

Anyone keeping tabs on the amount that's being raised by the family's website?

 

[nomoresorrow]

Here you go: http://www.ncbi.nlm.nih.gov/pubmed/10405016

Thanks for posting the link Sonya610, however, I cannot access the full report, simply the abstract. Based on that (only), I only see comparisons and differences noted between various ethnicities (i.e., European-Americans, African-Americans, Korean-Americans, and Mexican-Americans), not variances based on educational and/or income levels.

My Posts/My Opinions Only ~

 

[Trino]

http://www.gofundme.com/Jahi-Mcmath

89 pledges

$2,460 raised in day 1.

 

[K_Z]

Thanks for posting the link Sonya610, however, I cannot access the full report, simply the abstract. Based on that (only), I only see comparisons and differences noted between various ethnicities (i.e., European-Americans, African-Americans, Korean-Americans, and Mexican-Americans), not variances based on educational and/or income levels.

My Posts/My Opinions Only ~

Not to get too far off topic, but there are number of published studies looking at end of life decisions, and comparing various cultures/races, income levels, and educational levels. I will link a couple, but there are many more if you search under "income and educational level and end of life decision making", or socioeconomic status and end of life decisions", etc.

http://www.elsevier.com/about/press...ng-end-of-life-issues,-according-to-new-study

The team looked at responses from 7,946 participants in the HealthStyles survey and found that only 26.3% had completed an advance directive. The data showed that advance directives were more frequent among women, whites, respondents who had a college degree or postgraduate training, or were married. Respondents with advance directives also were more likely to report having a chronic disease and a regular source of care. The study shows significant associations between completing an advance directive and age, income, education, and health status.

"For black and Hispanic respondents, advance directives were less frequent across all educational groups. These data indicate racial and educational disparities in advance directive completion and highlight the need for education about their role in facilitating EOL decisions," explains Jaya K. Rao, MD, who, at the time the work was performed, was an Associate Professor in the Division of Pharmaceutical Outcomes and Policy at the Eshelman School of Pharmacy, University of North Carolina. - See more at: http://www.elsevier.com/about/press...,-according-to-new-study#sthash.NJVkEx02.dpuf

http://www.biomedcentral.com/1471-2458/13/1055

Is educational attainment related to end-of-life decision-making? A large post-mortem survey in Belgium

Intensified pain and symptom alleviation and non-treatment decisions are more likely to occur in higher educated than in lower educated patients. These decisions were less likely to be discussed with either patient or family, or with colleague physicians, in lower educated patients.

This is not a study, but a guideline for health care providers.

http://depts.washington.edu/pfes/PDFs/End of Life Care-Latino.pdf

Birth region, education, and income level also influence how your patient perceives illness and makes health decisions.

http://content.healthaffairs.org/content/21/2/60.full

Socioeconomic status (SES) underlies three major determinants of health: health care, environmental exposure, and health behavior. In addition, chronic stress associated with lower SES may also increase morbidity and mortality. Reducing SES disparities in health will require policy initiatives addressing the components of socioeconomic status (income, education, and occupation) as well as the pathways by which these affect health. Lessons for U.S. policy approaches are taken from the Acheson Commission in England, which was charged with reducing health disparities in that country.

Inequality in education, income, and occupation exacerbates the gaps between the health “haves” and “have-nots.”

http://www.medscape.com/viewarticle/747769

The Influence of Race/Ethnicity and Socioeconomic Status on End-of-Life Care in the ICU

Results: Medical charts were abstracted for 3,138/3,400 patients of whom 2,479 (79%) were white and 659 (21%) were nonwhite (or Hispanic). In logistic regressions adjusted for patient demographics, socioeconomic factors, and site, nonwhite patients were less likely to have living wills (OR, 0.41; 95% CI, 0.32–0.54) and more likely to die with full support (OR, 1.59; 95% CI, 1.30–1.94). In documentation of family conferences, nonwhite patients were more likely to have documentation that prognosis was discussed (OR, 1.47; 95% CI, 1.21–1.77) and that physicians recommended withdrawal of life support (OR, 1.57; 95% CI, 1.11–2.21). Nonwhite patients also were more likely to have discord documented among family members or with clinicians (OR, 1.49; 95% CI, 1.04–2.15). Socioeconomic status did not modify these associations and was not a consistent predictor of end-of-life care.

 

[Jacie Estes]

I'm not. I think a lot of people want to force these people to accept and want to rub their noses in it, frankly. I think if it were my child, I'd not want to keep their corpse breathing. But I'm not in their shoes. They may have different beliefs, different feelings.

And if Jahi is dead then she's not experiencing anything happening to her body. The only ones who would suffer from wAtching her corpse breathe would be her family. A brain dead body would eventually shut down, probably rather quickly. So again, I ask, what is everyone's stake in this? Why the anger? Why the determination to have these people, whose shoes we are not in, feel exactly how we feel? Walk a mile.

Jahi had to have been considered healthy in order to have the surgery. The hospital had no problem with letting that take place. What happened between the OR and Recovery?

They took their child there for relief from a medical condition, sleep apnea, that many have. Then something went wrong. I don't blame the parents for doing what they feel is right for their daughter.

 

[jjenny]

Jahi had to have been considered healthy in order to have the surgery. The hospital had no problem with letting that take place. What happened between the OR and Recovery?

They took their child there for relief from a medical condition, sleep apnea, that many have. Then something went wrong. I don't blame the parents for doing what they feel is right for their daughter.

One doesn't have to be considered healthy in order to have the surgery.
And any surgery has risks associated with it.
Regardless, whatever it is parents are doing are not going to bring her back to life.

 

[otto]

Jahi had to have been considered healthy in order to have the surgery. The hospital had no problem with letting that take place. What happened between the OR and Recovery?

They took their child there for relief from a medical condition, sleep apnea, that many have. Then something went wrong. I don't blame the parents for doing what they feel is right for their daughter.

I don't completely agree that a patient has to be considered healthy in order to have surgery. If someone is healthy, surgery is not required ... and certainly no one should have surgery unless it is necessary.

 

[K_Z]

In the past, preop H & P's would indicate that at patient was "cleared" for surgery. This terminology has gone by the wayside, as no one but the surgical team can actually "clear" a patient for surgery. The preferred term is "optimized" for surgery.

Patients have all sorts of co-existing conditions, in addition to whatever they are having surgery for. For example, if Jahi had presented to the preop area with a fever and an upper respiratory illness, she very likely would have been "postponed" (not cancelled-- rescheduled) until the acute illness had resolved. A child who needs ear tubes, for example, may never be without some symptoms of URI, but the degree to which the URI symptoms are acute, in combination with underlying condition and surgical procedure, may mean that that child does have their procedure the same day, even with a snotty, crusty nose.

Patients are seldom "perfectly healthy", and never without risks. The risks have to be balanced against the need for the procedure, and how urgent that need is.

I think the mother saying Jahi was "perfectly healthy" is her way of describing that Jahi was not in an emergency situation, and was talking, walking, breathing, and in her usual state of health. That does not mean Jahi was perfectly healthy, or without very serious risks due to the need for the surgery, and the nature of the combined procedures.

 

[BeginnersLuck]

Jahi had to have been considered healthy in order to have the surgery. The hospital had no problem with letting that take place. What happened between the OR and Recovery?

They took their child there for relief from a medical condition, sleep apnea, that many have. Then something went wrong. I don't blame the parents for doing what they feel is right for their daughter.

The hospital has ask to be able to discuss the case but the family has denied them a opportunity to speak. She had multiple health problems prior to the procedure and the procedure was not a simple tonsillectomy.

Since the family has gone public they are being falsely mislead that their daughter will recover. People are encouraging them and giving them false hope, while the body of their daughter is decomposing. Her brain has received no blood for weeks. I have a issue with what is ethical for the deceased and allowing the deceased to rest in peace. There is a machine keeping her heart beating. At what point, with modern medicine, does the medical society say that we are not going to keep dead bodies alive on machines, just because the technology is available.

The normal procedure hospitals follow when there is brain trauma, is to do testing twice at different intervals. If the patient is brain dead, then they are legally declared dead. The hospital then out of courtesy allows a few days for the family to gather and say goodbye. The doctors, then remove the ventilator.

How far ethically will this go for this child and others in the future. When someone is declared dead, how many hoops and loops are going to be made to keep dead bodies alive on machines and who is going to care for them?

Yes, this is a sad case and unfortunately there are many others that die of complications of surgery, accidents and illness. Should they all be kept on machines and housed somewhere if possible?

 

[EmmaliLucia]

Um- not quite S Cal- out of state and insurance is not covering:

http://www.gofundme.com/Jahi-Mcmath

They already raised over 2k.

How do we know that this is even Jahi's mother? They say she's Facebook verified but that means basically nothing. ANYONE can create a Facebook page.

This is giving me a stress rash...

 

[MissJ]

JMO but I'd be interested in seeing what facility would take a body with a death certificate. Again my opinion, but I can't see insurance paying anything in
a case where a death certificate exists.

 

[K_Z]

Jahi had to have been considered healthy in order to have the surgery. The hospital had no problem with letting that take place. What happened between the OR and Recovery?

They took their child there for relief from a medical condition, sleep apnea, that many have. Then something went wrong. I don't blame the parents for doing what they feel is right for their daughter.

BBM.

From what I have read, I'm not convinced anything went wrong in the recovery room/ PACU. There was a planned admit to ICU before the surgery ever occurred. She was eating a popsicle in PACU, and had some bleeding that doesn't sound extreme. The major problems sound as if they began in ICU, and continued over hours, culminating with Jahi's cardiac arrest. My major questions are what happened in ICU, who knew about what was going on, and what was done. I am very curious if ENT was aware of what was going on, or if Jahi's situation was being managed by the intensivist/s. Someone was ordering the 4 units of blood she received. Did ENT even know how badly she was bleeding?

Added: And just because there is postoperative hemorrhage doesn't mean something went wrong in surgery, or there was a mistake made by the surgeon. A patient can leave the OR with good hemostasis, and begin bleeding hours or days later. The area in the back of the throat receives blood supply from branches of the carotids. Bleeding is always a risk.

 

[Karmady]

CA already has a limit on how much can be awarded.

as I understand it, the cap doesn't apply to economic loss such as the cost of ongoing medical treatment. I posted a link a few pages back.

jmo

 

[Linda7NJ]

The hospital has ask to be able to discuss the case but the family has denied them a opportunity to speak. She had multiple health problems prior to the procedure and the procedure was not a simple tonsillectomy.

Since the family has gone public they are being falsely mislead that their daughter will recover. People are encouraging them and giving them false hope, while the body of their daughter is decomposing. Her brain has received no blood for weeks. I have a issue with what is ethical for the deceased and allowing the deceased to rest in peace. There is a machine keeping her heart beating. At what point, with modern medicine, does the medical society say that we are not going to keep dead bodies alive on machines, just because the technology is available.

The normal procedure hospitals follow when there is brain trauma, is to do testing twice at different intervals. If the patient is brain dead, then they are legally declared dead. The hospital then out of courtesy allows a few days for the family to gather and say goodbye. The doctors, then remove the ventilator.

How far ethically will this go for this child and others in the future. When someone is declared dead, how many hoops and loops are going to be made to keep dead bodies alive on machines and who is going to care for them?

Yes, this is a sad case and unfortunately there are many others that die of complications of surgery, accidents and illness. Should they all be kept on machines and housed somewhere if possible?

IMO this case I believe it's more about faith than science. People ask for prayers all the time, many believe prayers work and many people that have faith in a superior being believe in miracles. This family obviously has strong faith and they simply want their miracle.

If I, an atheist, can respect that and have compassion for this family ... Surely others can.


Sent from my iPhone using Tapatalk 2

 

[jjenny]

IMO this case I believe it's more about faith than science. People ask for prayers all the time, many believe prayers work and many people that have faith in a superior being believe in miracles. This family obviously has strong faith and they simply want their miracle.

If I, an atheist, can respect that and have compassion for this family ... Surely others can.


Sent from my iPhone using Tapatalk 2

So enormous resources should be spend on keeping brain dead people attached to machines because family believes in miracles? Why does she need to be attached to a ventillator in order for this miracle to happen? Turn off the machine and see if this miracle takes place.

 

[Sonya610]

as I understand it, the cap doesn't apply to economic loss such as the cost of ongoing medical treatment. I posted a link a few pages back.

jmo

Or the costs of the lawyers that keep appealing to judges???

 

[meanmaryjean]

Jahi had to have been considered healthy in order to have the surgery. The hospital had no problem with letting that take place. What happened between the OR and Recovery?

They took their child there for relief from a medical condition, sleep apnea, that many have. Then something went wrong. I don't blame the parents for doing what they feel is right for their daughter.

Jacie- I think the issue some of us are having with the family is that they are wanting things done TO this child as opposed to FOR her. Nothing they are asking for is going to benefit a brain-dead child. Nothing will improve her condition. Sadly

 

[Sonya610]

My major questions are what happened in ICU, who knew about what was going on, and what was done. I am very curious if ENT was aware of what was going on, or if Jahi's situation was being managed by the intensivist/s. Someone was ordering the 4 units of blood she received. Did ENT even know how badly she was bleeding?

So are we to assume the cardiac arrest was due to bleeding out? How long was it going on?

I ain't no doctor but if she was just cut and then she started bleeding copious amounts over an extended period of time...was an attempt made to seal the wounds?

Does anyone know how long she was bleeding post op?

We know Jahi and the family were supposedly suctioning her (so they said). That seems rather unusual to say the least and if they were in fact suctioning blood....

 

[sherbetjello]

If she is trying to breathe, why not unplug the ventilator then, giving her a chance to demonstrate signs of life and be the miracle everyone is praying for?

I think Byrne makes a good point when he's saying that brain death is a different category of death from the traditional concept of death. A person whose brain is dead but who still has got a heartbeat, body temperature, metabolism etc is not imo quite as dead as someone who has no pulse and is starting to decompose. And even though the doctors may declare a brain dead person legally dead I don't think they take him to the morgue until the heartbeat stops and all the other systems start to go as well.


But that said, he goes on to say it's murder to cut off organs from a brain dead donor and I've gotta say that if it's ever me lying helplessly there on a hospital bed, brain dead, breathing by a machine and all the life signs that I've got to show for myself are body temperature and functional cellular metabolism and everything that I can expect from the future is more of the same, only weakening, feel free to murder me, if that's what it is. I've got no use for that kind of life and no desire to be a burden to my loved ones or the staff of some unfortunate hospital, so if you can save some other lives by using my organs and turn my tragedy into a gift of life please do so.

So excellently stated.

Just wanted to bump this post in the discussion.