Tuesday, 14 January 2014

Set them free

If you want something very, very badly, let it go free.  If it comes back to you, it’s yours forever.  If it doesn't, it was never yours to begin with. 
- Unknown

Everyone has heard that very famous phrase (or the slightly more compact version) which is often incorrectly attributed to Richard Bach.  After scouring the vast reaches of the universe (ie a 0.392 second Google search), I have been unable to identify the true source of these wise words.  Apparently they were originally written by an anonymous student of Jess Lair, a teacher and author who published it in his book “I Ain’t Much Baby—But I’m All I’ve Got in 1969.  Sting popularised the saying further in his grammatically-incorrect song "If You Love Somebody Set Them Free" in 1985 (subject-verb agreement, Sting).

So on the subject of people who deserve to be set free, the continuing story of Jahi McMath has caught the attention of people around the world.  It has sparked emotions on both sides of the issue ranging from sadness to sheer outrage.  The outpouring of support the family has gotten (both in prayer and in monetary donations) has only been overshadowed by the almost-criminal accusations made against Jahi McMath's doctors and Children's Hospital Oakland, as well as similar wild accusations made against her family.  The vehement conjecture on both sides has done nothing but push the actual tragic loss of a young girl to the side in favour of bitter and worthless squabbling.

But this post is not about Jahi McMath.  Not primarily, anyway.  On the opposite end of the spectrum from Jahi lies Marlise Munoz.  Marlise, just 33 years old and 14 weeks pregnant, collapsed at her home in Texas on November 26, 2013.  Her husband Erick found her lifeless on the floor, and she was rushed to John Peter Smith Hospital in Fort Worth where, despite exhaustive efforts, she was pronounced dead by neurological criteria, possibly due to a fatal pulmonary embolus.  She and her husband had discussed this possibility after she lost her brother in an accident, and she had decided she would not want to stay on machines.  To honour her wishes, Erick asked her doctors to remove her from life support and let her go, to set her free.

Despite his request, her doctors refused to turn them off.

Wait, what?  Why?  Do her doctors believe in miracles?  Are they,  like Jahi's family, trying to defy medicine, science, and logic?

No, they were simply following the law.  Unbelievably, Texas has a law (Section 166.049) stating that "A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient".  And because Marlise was pregnant when she died, the hospital and her doctors have adamantly refused to remove her from the machines according to her wishes 7 weeks later.

"Wait, wait, wait", I hear you thinking.  "Something isn't right here.  The law specifically says 'life-sustaining treatment'.  There's no life to sustain!  She's dead!"

Well, yes.  You know that, I know that, and I'm sure her doctors and the hospital know that.  But despite that very logical argument, the hospital's spokesperson said, "In all cases, JPS will follow the law as it applies to health care in the state of Texas. State law says life-sustaining treatment cannot be withheld or withdrawn from a pregnant patient."

But it says . . . life-sustaining . . . and she's . . . but . . .

To try to clear my head from the insanity of that statement, I decided to research pregnancy and brain death, and I was a little surprised by what I found.  The journal BioMed Central published a review article in 2010 where they found 30 documented cases of pregnant women declared brain dead between 1982 and 2010 and kept on machines, essentially as incubators, until their babies were delivered.  These women averaged 22 weeks pregnant at their time of death, and the babies were born an average of 7.5 weeks later (though 2 of them were kept on support for over 100 days).  Only 12 of the 30 delivered a healthy baby who survived more than a few days.

The most interesting thing to come out of this report is that 10 of the 30 deceased women were then able to donate their organs after delivery, weeks after being declared dead.  So with maximal support (including ventilatory, hemodynamic, endocrine, fetal, thermoregulatory, nutritional, and infectious), even brain dead bodies can be sustained for weeks, months, or possibly even years.

We are living in the future, where the science of medicine has advanced to the point where even dead bodies can be sustained on machines.  But the obvious question is

WHY?

Why do it?  In the case of Jahi McMath, that question has not been answered.  Her brain is gone, never to return.  "Jahi" as a person is gone.  What purpose does it serve keeping her body functioning?  I understand the family not wanting to let go, but at the end of the day they have to understand that death is a part of life.  It is inevitable for all of us.  And keeping a lifeless shell on machines just because you aren't ready to say goodbye is denial and futility at their most basic.

On the other hand, in the case of Marlise Munoz, the answer to "Why?" is clear - to give her foetus a chance.  But that brings up another even better question: Just because we can, should we?  Marlise didn't want this, her husband doesn't want this, and her parents don't want this.  But the state and hospital are forcing this treatment on them, twisting the law to fit a patient for whom it was never intended.  Two of the three people who helped draft the law have even said that brain-dead women would not be covered by the law, because it only specifies "life support" (hmm, where have we heard that before?).

So here we are, two families with similar, though almost opposite, problems.  In one case, Jahi McMath has been reduced to a hollow vessel, forced to stay on machines by a family in denial who can't say goodbye.  In the other, Marlise has been reduced to an incubator, forced to stay on machines against her will and that of her family who want to let go but can't.
If you want something very, very badly, let it go free.  If it comes back to you, it’s yours forever.  If it doesn't, it was never yours to begin with. 
- Unknown
It seems to me that both Jahi's family and the hospital in Texas need to let them go free.


Note: If you are interested in reading the full article from BioMed Central, click here.

31 comments:

  1. Why? Because in Texas rich white men are determined to keep their authority over women's bodies. I was born and educated in Texas. I fled many many years ago.

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    1. Not only is that statement completely silly, it's not an answer as to "why". You can't just answer "because" and expect people to agree.

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    2. That's not at all the case where I live in Texas; If you don't mind me asking, what city did you grow up in?

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    3. I live in Texas and I feel the husband had a right to decide. The government is too controlling here when it comes to pregnancy. It is sad this man is being forced to pay for something he nor his wife wants.

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  2. Oh God, I can't imagine going through what Marlise family went through. That is hell!

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  3. Nice to see you took my push and posted about this - I was going to post something on my blog but you do such an eloquent job I figured I would throw this ball in your court and an excellent job you have done good sir!

    While I want to live in Texas once I'm done my BSN, it makes me question whether I would want to do so while in the prime of my child bearing ages because I would NOT want to be kept alive on ventilators - even if the law dictated that it had to be.

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  4. Excellent post and very informative. I still can't believe that in this day and age we are having this debate about what constitutes death.

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    1. On a completely unrelated note, could it be Jess Lair who said those famous words?

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  5. Oh dear.

    That's insane - and it gets worse every day because all the time she is kept on the machine the foetus is maturing. I don't want to open an abortion debate in these comments but, as I understand it, the criteria for allowing abortion in the UK relate to whether a baby is capable of being born alive - not necessarily capable of surviving but of being born alive. That makes the baby's maturity an important issue since turning off the machine is also aborting the baby.

    At 14 weeks I don't think the baby could ever be born alive. Seven weeks on it's well within that window. In a couple of weeks it will have a measurable probability of surviving which will then escalate massively for every week after that.

    Statistics which are no more reliable than you would expect from a quick Google search suggest a 17% chance of survival at 23 weeks escalating to 50% at 25 weeks and 80% at 26 weeks. In a month's time switching off that machine will be killing a baby that has a 50% chance of long term survival.

    The treatment may not have been "life sustaining" when the decision was first made but there will come a point when it is - it will be sustaining the life of a viable child.

    Modern science and medicine are amazing but sometimes they are very difficult.

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  6. All of this is too sad to comprehend. And it's very scary for those of us who stand a strong possibility that at some point the decision to not resuscitate must be made. I have planned, signed all the papers so that my family doesn't have to be the ones who make the decision, but have left that in the hands of a geriatric nurse. It"s awful to think that common sense and final wishes are ignored. The only light in all of this is that neither Jahi nor Marlise are there to feel anything that is happening to the shell they once inhabited.

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  7. Not to be materialistic but in real life situations somebody is left holding the bag…. Who is responsible for this, likely several 100k+, hospital bill? The family of the patient has asked to end treatment the hospital, via the law, has denied it. The fetus had 0 chance of life when the family wished the machines off, again via the law, the hospital said no. Is it still the father's child born from and through a machine? What if this child is severely, medically, deformed and requires MILLIONS of dollars of treatment/procedures over its lifetime? I have kids, I love my kids, but its still a decision that could literally change the ENTIRE rest of their lives and they essentially don't get a vote.

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    1. Yes "small gov" Tx will stick the taxpayers with the bill. I have heard several people say that "the powers that be in TX " are misinterpreting the "law" and that a judge should step in, but so far none has...as for Jahi I shudder to think what is happening to her decomposing body, especially with the gtube...
      Both of them should be RIP but they are not!

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  8. "A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient"

    So they actually consider legally dead body a "patient"?

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    1. Apparently they also consider it "life support" when there is no life to support.

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    2. The life they are referring to is probably the fetus.

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    3. The fetus that was deprived of air like Marlise was...!

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  9. Incidentally, Doc' I think your summary of the paper is slightly off - it was 12 surviving infants out of 19. 11 of the 30 cases were from a review of organ donation which did not provide information on the outcome of the babies.

    "Fetal and neonatal outcome

    In 12 (63%) of 19 reported cases, the prolonged somatic support led to the delivery of a viable child.... "

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  10. Does anyone know where Jahi's birth father has been in all of this? I don't recall him being interviewed.

    You may want to look at the latest post on Trials & Tribulations, which contains links to all the court documents, and some of the health information may be new. According to the family, Jahi was talking in the recovery room. Winkfield says she was told that she had to wait a few minutes before Jahi's IV was "fixed." She says the wait turned into 25-40 minutes, and when the mother came into the room, Jahi was sitting up and bleeding. Of course, the wait does not necessarily mean the nurses did something wrong or were not paying attention to her.

    She says the nurses told her that the bleeding was normal. As we've heard before, she says that the stepfather and grandmother were suctioning the blood from Jahi, and that the bleeding was copious. The grandmother made a "loud demand" for a doctor.

    In later court documents, however, both Dolan and Judge Grillio (sp?) say that, within minutes of the bleeding becoming profuse, she went into cardiac arrest. So, that sounds like her bleeding was considered normal for this operation. When the bleeding became dangerous, only a few minutes elapsed before cardiac arrest.

    I wonder what could have been done in a few minutes to stop the bleeding and prevent cardiac arrest.

    A hospital official said the family got far more services than anyone else with a brain-dead child in the past 10 years. (I'm assuming he means in recent memory, as opposed to there being an actual case 10 years ago in which a family got similar treatment.) The hospital gave them a room so that the family could gather together privately; a social worker talked to them daily; the hospital arranged for free housing and lodging at a nearby nonprofit that helps the families of children in CHO; and a few other privileges.

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    1. There are many people who believe that the family was treated poorly, and I disbelieve every one of them. First, all we have is the family's account of the story, and we all know how biased they are against CHO and the doctors. Second, it has been made very clear that the hospital bent over backwards for them. They did NOT need Mrs. Winkfield's consent to turn off the ventilator after a "reasonable" period, but they left it on and gave them several extra days AND a second, third, fourth, and fifth opinion.

      As for what caused the cardiac arrest, my suspicion is that she aspirated some of the blood. It would be hard to imagine her bleeding to the point of cardiac arrest.

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    2. Suzie..I don't know what the hospital official meant by his remark, note I have not looked at the statement myself. In my experiences (one child with a heart defect, 3 weeks in a coma, vent, high CO2..now a great dad :); one child with immune system issues, same one with TBI now; and a whole bunch of ill foster kids) There are always private rooms for families in difficult situations. Be thankful if you haven't sat in them waiting for someone to come in and talk with you. There are also housing options at every large hospital, from McDonald Houses for families of minors, to rooms and kitchens in churches, and places like hotels gifted by banks and other entities I have stayed in them all..and on the floor, or a chair..and in my car. Some nearby churches offer houses to families, often these options are free, some have a small nightly fee if you can afford it.
      Most hospitals also will help families, all families, in long-term ICU situations by making a recommendation for housing, monthly parking passes, and sometimes cafeteria coupons (yuk). Often families there for a few days see this as favoritism, without understanding it is done by the hospital social worker.
      Re the bleeding..I have to say the suctioning really bothers me. Jahi had just had a lot of work done to her throat. Some bleeding.. yes, usually swallowed or spit. Add in the suction, and untrained hands. What was the setting? Technique? Was there cautery at bedside? Were the clots disturbed or the incisions opened? What looks like a lot of blood and what IS a lot of blood are two different things.We may never know unless records are released. Aspiration and the beginnings of hypovolemia?

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    3. Dadgum, the difference is that this was for the family of a brain-dead child. (I mentioned this in my comment.) Officials said the hospital provides services for families of brain-dead children for 2-3 days on average so that the family can make arrangements, view the body while it's still lifelike, etc.

      I'm a patient advocate, and I'm familiar with what you describe. Again, the difference for me is families who are getting all sorts of services because they won't accept that their child has died. Someone has to pay for those services, and the services are not limitless.

      My experience has been with cancer centers. When gas cards run out, for example, they are gone and the next person can't get them. If there's a demanding family in one room, it means less time for nurses and techs to help me or the patient I'm visiting.

      At my nearby cancer center, when the ACS's Hope Lodge is full, families are directed to nearby hotels that offer discounts. But it still means that one family gets free food, lodging, transportation to the hospital, access to an array of activities and services. Meanwhile, another family must pay for food, lodging, transportation and cannot go back and forth easily for other services.

      If doctors, nurses or social workers spend hours talking to a family that refuses to get it, that means less time for other families.

      If an ICU bed is occupied by a dead child, there may be another child who has to go elsewhere.

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  11. I've been giving the "why" some thought. Certainly, denial is a big reason that a family can't accept the loss of their loved one, and stop mechanical support. Sometimes embedded in that denial is magical thinking, that somehow, despite everything known to medical science, that somehow the doctors are just wrong and if you just wait long enough, the person will recover and prove everyone wrong, Well, yes, sometimes they are wrong, but isn't that why you might ask for a second opinion? I also think a corollary to that then would be guilt if support is then stopped, and worry that you didn't do the right thing.

    I also believe that hanging on against all reason is fear of facing the future without your loved one. How will you go on without your child (or spouse, or sibling)? That person is an important part of your life, and now you are facing a future without that one you love. It can make it nearly impossible to decide to let go.

    Then we have the extreme right-to-life position, where if the heart is beating, there's life. That's the notion I have the most trouble understanding. Your brain is what makes you "you." When that's gone, you're gone, never mind the physiological issues involved with the functions of the body controlled by the brain. In the case of maintaining a comatose or brain dead pregnant woman, I think the extreme anti-abortion position enters into the picture here. It's an ideological position. I'm pretty repulsed by the idea of keeping a brain-dead pregnant woman on mechanical support, with the hopes that the fetus might be viable and no damaged by the catastrophic event that caused the mother's brain death. There's also the issue of the medical directives that no extraordinary measures be taken to maintain the body.

    I've only had one cup of coffee so far this morning, so my ramblings might be foggy, too, and not that well organized. It's a start, though.

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  12. Does life and liberty really not extend past death? Does this mean the state of Texas can do whatever they want with dead bodies? The answer is, of course, no. This is probably in large part due to all the anti-abortionist feelings that appear to still be prevalent down in good ol' Texas, but keeping a body on life support over the objections of the family and the victim herself?. Is the family going to have to pay for this care? If the child manages to lead a normal life after this, how is the family going to explain that when they get older? This is probably a bit iffy (if the mom died, what condition is the fetus in?), That husband probably feels like he is living in some kind of twisted nightmare right about now.

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    1. Along with the very real probability of complications from an early birth (due to the mother's body shutting down eventually) the question of the whether the baby suffered from a starvation of oxygen between the mother collapsing and being put on the machine must be of considerable concern.

      If I was that husband I would be going absolutely spare. Losing your partner and then being left the legacy of a child who requires 24-hour care for the whole of his/her life. I don't know that I would cope. Of course there is the chance the the child will be born sufficiently mature and be unaffected by the extraordinary start (s)he has received. I have to feel that the odds are stacked against that at the moment, however.

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  13. Finally a place on the vast internet just as obsessed with the Jahi story that also understands how completely insane the circus around it is! The idea that Texas has a law preventing a dead woman from being removed from artificial biological support to keep an unborn child alive against her entire family's wishes just proves how bible thumping that whole state is. I'm not trying to bash anyone's religious beliefs but it seems to me the woman made it known she would have wanted her life and biological functions to end, even at the cost of her unborn child and her family agreed with this. The state however is in an area that prescribes to life at conception and that life takes all precedence over any other rational decisions made my functioning human beings.

    Oh humanity.

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    1. *by ... not my functioning human beings

      Where's the edit button!? I'm embarrassed at my own error!

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    2. I agree that the Jahi story is a circus and this poor girl should have been laid to rest a month ago.
      Now to the Texas story.....I guess I'm one of those Bible thumpers from Georgia and I believe that life begins at conception. But...I also believe that if the mother died before the birth of her child then she and the child should have been laid to rest.
      I'm not sure how to say what I'm thinking but here goes.....If the mother went without oxygen to the brain for an extended period of time causing her to be brain dead (or just plain ole dead) then she should never have been put on any machines pregnant or not. I believe we all have a specific date that we will die and only God knows that day whether we are in or out of a womb. I believe that had God planned on this child being carried to full term then the mother would not have died before it was born.
      Not sure that makes sense but it's what I believe.

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  14. I posted this on an earlier post, but I hope you check out the New Yorker article.

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  15. Texas is not the only state with this type of law. Reading about this case a few weeks ago, it was indicated that some 30+ states have similar laws where advanced directives are null & void if the patient is pregnant.

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  16. Has anyone wondered why CHO is saying very little about their supposed "malpractice"? Well I found out why, I believe anyway. It turns out post-op Jahi's mother/other family member brought Jahi a McDonalds hamburger into ICU, her grandmother fed it to Jahi in tiny pieces unbeknownst to the ICU staff, this caused Jahi to start choking and in the room was a suction machine, granny is an LVN at Kaiser Hospital Oakland and instead of calling for help from staff she started using the suction device to get the hamburger out of Jahi's throat, which had clots from the tonsillectomy and stitches from the removal of adenoids and the uvula. Jahi, and several of her family members suffer from a bleeding disorder which was one of the reasons her surgery was at CHO, they did not call ICU staff when she started bleeding, instead they had Jahi self suction herself while grandma started cleaning up blood. This entire event is the families fault, by the time staff knew what was going on Jahi was rushed into surgery with Doctors desperately trying to save Jahi, I was told that she had lost nearly half of her blood which caused cardiac arrest followed by a stroke trying desperately to save Jahi's life. All the rest of this horrific mess seems to be about the attorney Dolan's desire to break the cap on how much a person can sue for, it's now at $250k - a lawyer could probably confirm that. And it's not so much about the keeping Jahi alive but keeping the coroner from doing an autopsy where grandma and mom might - might just be charged with something criminal? Perhaps negligent homicide and practicing medicine without a license? I really don't know about the practicing medicine issue but post surgery and prior to the illicit Mickey D's Jahi was walking to the bathroom, talking and yes begging her family for food, she was hungry and upset she couldn't eat. No popsicle was going to make her happy, instead she was suctioning out food from her own throat at one point. On You Tube Jahi's uncle states that $250k ain't nothin' and Jahi was worth 30 million dollars. Sinister, horrifying, dual interests by the aggrieved family and their attorney, you name it and this case has it. I think the hospital is getting tired of the patent lies being told about them, because while the family has openly admitted what they did, on video several times, there is still has to be an investigation going on which is tying the hands of the hospital, you know those pesky HIPPA laws they are bound by. Jahi is dead because of a bad choice, compounded by even worse decisions that lead to her death, No one of the CHO had anything to do with any event that lead to Jahi's situation. She came out of surgery, recovery, was up and walking until her very last meal on Earth. The grandmother has admitted this on several videos' you can find on YouTube. I believe Dolan's law firm is trying to get them removed from YouTube in an effort to make the video's harder to find. I feel bad for Jahi, it's terrible to think that she died for the reason she did and how she did, it must have been stark raving terror once the clots and stitches were ripped out by suctioning them and the blood flowed so freely, but over indulgence and trying to hide something done lead to her death, not her treatment. She's not merely dead, she is most sincerely dead and should be treated as such. It's time to give that child the dignity we all deserve when we pass from this world.

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    1. Unless you have specific evidence, this "hamburger" rumour remains just that - a rumour. I want to concentrate on facts.

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