To be or not to be

Thursday, January 2, 2014

Happy New Year to everyone!

I have been following developments in the Jahi McMath tragedy in Oakland. She is the 13-yaear-old girl who went to the hospital last Friday to have her tonsils removed. She went into cardiac arrest in the recovery room after the surgery. Efforts to revive her were unsuccessful. The medical staff pronounced her dead after determining that she had no electrical activity in her brain or brain stem. But for vehement objections from her mother, the medical staff would have disconnected Jahi from the ventilator and transferred her body to a funeral home to be prepared for burial.

Pursuant to a court order obtained by her mother, Jahi will remain attached to the ventilator and receive nourishment by tube until January 7th, unless her mother finds a hospital willing to accept her before that deadline. If no hospital agrees to take her because she is brain-dead and/or her family cannot afford to pay for her long term care, the court will have to decide whether to accept the decision by the medical staff and dissolve his order or find some other solution.

The case presents several interesting issues for us to consider. I am going to start with the end-of-life issue today and reserve discussion of other issues for a later time.

We used to determine whether someone had died by checking for a pulse. No pulse meant the person was dead or soon would be, unless we restarted the heart. First responders and others trained in emergency medicine use electric paddles to shock and restart the heart. If paddles are unavailable, they will place the palm of one hand over the back of the other and alternately press down with both hands against the flexible breastbone directly above the heart and then release the pressure allowing the bone to return to its normal position. Repetition of this process mimmicks a beating heart and it can circulate sufficient oxygenated blood to the brain and back to the lungs to prevent or minimize damage to brain tissue.

Sometimes a heart will restart on its own after a person has been declared dead. For example,I recall reading a story within the last month or so about a man in Brazil who sat up in his coffin during his funeral and demanded to know why people were attempting to bury him alive. This provoked a rather awkward moment of silence as people attempted to figure out who was playing whom.

Doctors now believe that death inevitably results when the brain is deprived of the oxygen that it needs to continue functioning. They would explain the apparent miracle that people witnessed at the man’s funeral as a practical joke or an erroneous interpretation of insufficient data or flawed data recorded improperly. They would opine that the brain must have been alive when the person was declared dead.

Absence of a detectable heartbeat could mean that a person is dead, but a final decision should be delayed until doctors determine whether any brain activity is present. The brain will not regenerate dead cells. Therefore, absence of brain activity is a more reliable indicator of death than an absence of heartbeat.

As we know from the Terry Schiavo case, a brain-dead person can be kept alive indefinitely by hooking them up to a ventilator and feeding them nutrients through a tube. I question the wisdom of a decision to use a machine to extend a life indefinitely knowing that the person will remain in a persistent vegetative state without regaining consciousness until the machine is turned off.

I understand and sympathize with Jahi’s parents. Despite a persistent and shameful record of 100,000 preventable deaths in our nation’s hospitals each year, I do not believe any parent would have foreseen that their child would die following a routine surgery in a hospital to remove tonsils. Shock, dismay, stunned disbelief, and rage probably would overwhelm capacity to reason.

I think I would cling to hope as her mother has done.

Easier for us to see that prolonging her brain-dead child’s life under these circumstances is magical thinking that will not bring her back. Moreover, creating an opportunity for a miracle to happen by extending her life with a machine is irresponsible Frankenstein behavior.

No matter how much it may hurt, sometimes you have to say goodbye and let a loved one go.

Jahi’s mother made some serious allegations of misconduct against the hospital that I am not going to discuss, except to say that I believe the anesthesiologist may be liable for her death. Res ipsa loquitur.

I also have not discussed the cost of indefinitely prolonging Jahi’s life and who will have to pay for it.

Jahi’s case has provided us with a wonderful opportunity for context in considering and discussing end-of-life decisions regarding yyour child. They are gut-wrenching and no answer can fully satisfy.

Although the Terri Schiavo Foundation has offered to assist Jahi’s family, no decision that must be made at the intersection of a brain-dead child and the cost of extending her life in a permanent vegetative state is going to be easy to make.

Should an insurance company, the patient or the patient’s medical professional decide when to disconnect the patient from life support.

What would you do, if Jahi were your child?

Would you sign a DNR (i.e., do not resuscitate)

What role, if any should religious faith play in the decision?

Who should bear the cost of paying for long term care on a vent?

Should rich and poor receive different care or should it be the same?

I do not believe the right-wing hate machine will involve itself in this matter since they place little value on the life of a child with black skin.

CNN is reporting that Jahi’s famiy:

“Together with our team of experts, Terri’s Network believes Jahi’s case is representative of a very deep problem within the U.S. healthcare system — particularly those issues surrounding the deaths of patients within the confines of hospital corporations, which have a vested financial interest in discontinuing life,” the Terri Schiavo Life & Hope Network said in a prepared statement.

The organization said it has been overseeing the efforts of several groups to help get Jahi transferred out of Children’s Hospital Oakland and brought “to a safe place.”

Read more: http://www.wxii12.com/news/health/Terri-Schiavo-family-joins-fight-over-Jahi/-/9677622/23724736/-/bwugcez/-/index.html#ixzz2pBhkZGUj

47 Responses to To be or not to be

  1. aussie says:

    All the stories of people waking up at their funeral are from impoverished countries where they were declared dead without benefit of any medical training. In the rare cases where a “hospital” was involved it was a building with a few doctors and not much testing equipment. They were also being buried by family or village methods, no embalming etc, just washed and laid in a coffin.

    The “brain dead but came alive” stories are all people who were in comas or a vegetative state, NOT declared legally “brain dead” which has a very specific strict definition in law. Most had brain injury from external trauma, not from strokes or hypoxia, and all remain in various states of helplessness after many years of therapy.

    “Brain dead” legally means no electric activity in the brain stem (in UK and parts of Europe) and also in the rest of the brain (USA and rest of Europe), no blood flow in the brain, and various other tests to show no brain stem activity. Terry Schiavo was in a Persistent Vegetative State, which is how she was able to keep breathing with the went disconnected: her brain stem was still more or less functioning, just the rest of her brain, the “consciousness” part, was gone.

    Jahi McMath is legally brain dead according to at least 6 doctors now. Doctors who have tested her. One who claims she could heal only saw some notes about her, another never even saw that much.

    She’s long gone. They need to let her rest in peace.

  2. lady2soothe says:

    Terri’s brother Bobby Schindler and mother Mary Schindler recently spoke with “Oprah: Where Are They Now?” about their lives today and how Terri’s impact continues nine years after her death.

    http://www.huffingtonpost.com/2014/01/03/terri-schiavo-family_n_4533067.html

  3. Here’s some OT comic relief – http://www.addictinginfo.org/2014/01/03/hackers-obama-lynching-facebook-page/

    Goat to be the funniest thing I’ve seen today – don’t drink and laugh on your screen!

  4. lurker says:

    From a personal religio-ethical point of view, I do not regard this as prolonging life. The life of the person is ended. Even reflexive actions have ceased. The machines are maintaining the existence of a barely organized system of cells. When continued for a matter of days, to allow family members to take leave and so forth, I see little harm. Competent clergy, however, should be advising the family to disconnect the man-made machines and put their faith into God’s hands. Occasionally the disconnection does not result in immediate death, and then, perhaps we get into the murkier area of withholding feeding, etc.

    These are issues best discussed in the cold light of day, not when facing imminent loss. While we do not typically contemplate the death, or near-death, of our children, we should each take time to consider our own personal wishes and discuss them with family members, should anything ever happen. It serves to take the burden from whoever is thrust into the position of decision-maker.

  5. towerflower says:

    Here is my story…..My sister was 39 yrs old and had some minor health issues. She would get sick after eating, stomach pains, nausea, etc. She would also suffer from severe headaches, believed to be migraines. She was seeing a variety of doctors but not the one she really needed to see.

    One night after dinner she became so ill, her husband took her to the ER, while there they were getting ready to discharge her with a follow up with a Gastro dr in the morning. She turned and looked at them and said she could no longer hear them speaking and fell back unconscious. She never woke up again.

    During the next few days they tested for every “itis” and West Nile Virus (which was in the area) and they all came back negative. I would be present during brain scans and they could tell her husband and I that she was awake and she was responding to my voice, but beyond the brain waves there was nothing.

    We finally found out what had happened. She had atrial mxyloma, which is a tumor on her heart. Blood had pooled and clotted around the tumor and would break off in small pieces—-this was the reason for her headaches, finally a larger blood clot broke off and caused a massive stroke. They had also screened her for a stroke but they only looked in the places where a stroke typically happens….in the upper part of the brain, hers happened in her brain stem and it was devastating. The ability for her body to control her temperature was destroyed and controlled with medication. When her temperature rose, then the brain would start to swell.

    We struggled with the diagnosis, after all they told me and the family that she could hear me and was responding to my voice. How could she be brain dead when there was activity within the brain? A neurologist tried the best to explain, she was blind, deaf, and lost vital body control functions, that the pathways from parts of her body were destroyed by the stroke…..her eyes and ears worked but they were not getting the signals to the parts of brain that could decipher the signals. Her pain reaction was non existent. Her case was irreversible and she would forever be on life support and that while she still had brain signals, the damage to the brain stem meant she was in fact dead.

    My brother-in-law could not make the decision and left it to our family, my mother was in no shape to make the decision to stop the life of her daughter so myself and my other 2 sisters made the decision to stop life support. It was a group decision and we all had to be in agreement. When the medication that kept her body temperature in check and her brain from swelling was stopped it went quickly. We were all there with her at the end and I still struggle with the decision to this day. We told her everything was going to be okay and she could stop fighting and be with our father. I was holding her hand during this and at that moment a tear came out of her eye and ran down her cheek right before she passed. They said that this is not uncommon but it makes you think how much do we really know about the human brain.

    There is a lot of what ifs……if she had only gone to a cardiologist the condition would have been discovered and surgery would have corrected it—it was a rare condition that only a few hundred known cases have been found. Her symptoms were subtle in that she never suspected she had a heart issue. What if they had scanned her entire brain for a stroke instead of the most common areas….could the drug that they give stroke victims have helped?

    I can sympathize with the family of this young girl, they want to believe, just like our family wanted to believe.

    • lurker says:

      I can feel your pain. You were fortunate to have sisters willing to be involved in making the decision with you, and that you were able to arrive at a single decision. Letting go is never easy, and doubly so when catastrophe befalls us when everything seems to be going right,

    • lady2soothe says:

      towerflower

      a tear came out of her eye and ran down her cheek right before she passed.

      Kenya had a tear which we were able to capture on a tissue. I’ve always wondered about that as well and my heart breaks and I too

      I still struggle with the decision to this day.

    • lady2soothe says:

      Sorry, I accidentally hit something and posted before I’d finished writing

      It’s always a difficult call and so easy to second guess such a life chancing decision. You with your sisters combined knowledge gained from the doctors expertise made the right choice not to allow her life to be unnecessarily prolonged. You gave her dignity and respect by letting her go.

    • Trained Observer says:

      Towerflower — A tragic end to your sister’s life, but I think you and your other sisters did the most generous thing for her, your mom and her husband. My condolences for your loss.

  6. shyloh says:

    God what a horrible decision to have to make. I hope that never happens to any of my children. Or older family members.

    When I went to the hosp a couple of weeks ago for double pneumonia which was horrible. I felt like I was dying. The nurse of course asked me if anything happened would I want to be on life support. Now I wouldn’t want my family to have to decide that one so I told her no. Just let me go. I pray for the parents.

  7. Girlp says:

    Happy New Year Professor!

  8. Girlp says:

    At some point I would have to come to the realization that my childs brain is no longer functioning and believe me even thinking about this brings tears to my eyes I would not want to let him go. However, once the brain is no longer functioning you are already deceased; no longer here. I would have to say to myself it’s time to let go.

  9. gblock says:

    From what I’ve heard, the surgery was done at least in part to help alleviate her sleep apnea. That was the reason for the removal of excess sinus tissue. I heard that she was bleeding from the nose and/or mouth prior to going into cardiac arrest. It makes sense that she may have had large amounts of blood getting into her lungs, whether this was caused by a torn suture or by other post-operative problems.

    When the case first came before a judge, he ordered a second opinion, as well as additional neurological tests to verify that Jahi was actually brain dead. In my opinion, this was a wise and prudent measure.

    The latest that I’ve heard on this is that the parents were hoping to transfer Jahi to a facility in New York, since they couldn’t find a closer place that would agree to take her. I haven’t heard whether one of her parents is planning to stay with her there.

    I understand that it must be extremely difficult for the parents to accept Jahi’s sudden, unexpected death. I think that it would be good for life support to be maintained at this time, to allow the parents some more time to some to terms with the death. But it seems to me pointless and wrong to take a brain-dead child all the way across the country because of the inability of the parents to accept her death. I wish there was a better way.

  10. Soulcatcher says:

    If it were my child, I would at some point take her off life support. With that said, I don’t think anybody has the right to step in and make that choice for me. Insurance only goes so far, and then who pays. We have people with deseases that are given no hope, that are kept alive by various means, who pays for that. We have people who are in so much pain they beg to die, and are left suffer with what time they may have left, who pays for that. Who pays for all the medical care for those who cross the boarder to use our emgergency rooms, to have their children born here, then the the children become citizens, and who foots the bill for the next 18 years for many of them. Who foots the bill for a good majority of abortions.

    If this is about who is going to get the bill, well mail it to whoever foots the bill for everything else, since they’re paying, which means we are paying. Until we have the choice of deciding who gets to foot the bill and for what, send the bill. Oh, nobody wants the bill, too bad, pay it. I don’t want to pay for alot of the above, but every year the tax man collects one way or another.

    • lurker says:

      I think that one consideration has to do with quality of life. If highly expensive medications allow someone to continue to work, or to be present to their family, this is one case. However, if the expensive life-supports are only ensuring that an otherwise lifeless body remains warm to the touch and processes nutrients, well, that is an entirely other situation.

      At some point I expect that someone will bring in government coverage (or not) of such services with cries of “death panels.” This is by no means a new situation, although modern technology may have provided more examples.

  11. Gawd, I hope and pray that this girl proves these doctors wrong. It’s almost like the hospital is saying these parents don’t deserve to have hope.

    • cielo62 says:

      They have a right to their own Opinion. They don’t have the right to make up their own facts. The girl is DEAD. There IS NO “hope”‘! When medicine wasn’t so sophisticated, yes there were stories of people “coming back to life.” But nowadays, medical science has improved. They can test every possible way to see if the brain is even getting / giving electrical impulses. Jahi is dead. To string the family along on false hope is evil and cruel.

  12. lady2soothe says:

    December 8th 1993 our 16 year old son Kenya was in a rollover causing him to be propelled though the sunroof 145 feet, landing on his head.

    Kenya had one miniscule cut on his left pinkie finger approximately 1/4″ and a superficial gravel burn on his left hip the size of a 50 cent piece. No other visual physical injuries. The back of his head was kind of mushy to the touch but no blood… 24 hours of constant observation and monitoring, and maybe an hour of intense observation by seven trauma specialists & acute care nurses after disconnection from Life Support.

    Longest 24 hours of my life, all of our lives.

    We made the decision to remove him from Life Support and almost more difficult was the decision for Organ Donation of his heart, kidneys, cornea’s, liver and pancreas.

    As hard as it is there are times you just have to let go.

    http://www.findagrave.com/cgi-bin/fg.cgi?page=gr&GRid=8776466

    • Trained Observer says:

      I am so sorry to hear this lady2soothe. Yet others are living, thanks to your difficult but realistic assessment of your son’s hopeless condition, made all the more difficult with lack of visual injuries.

      • lady2soothe says:

        @ Trained Observer

        We received the most beautiful letter of thanks from the Organ Donation Foundation giving us the age, condition and forwarding anonymous notes of appreciation from the recipient(s). His heart went to a young girl under 10 years old, Kenya would have loved that!

    • I’m sorry to hear about your loss. I believe he was fortunate not to have suffered and I agree with the decision that both of you made.

      I am grateful to my creator not to have experienced what you did. I would hate to have to make that choice.

      • lady2soothe says:

        Thank you Professor… Yes, I agree… The impact ended his life, not the doctors.

        It’s funny but I can see him flying through the air thinking “this is so cool, ohhhhh shitttttttt”

    • Malisha says:

      Lady2Soothe, I’m so sorry to hear this.
      I wish you no more sorrow ever, and peace, and thanks for your strength and endurance.

    • Lyn says:

      Great sympathy to you and your family for your loss.
      Great sympathy to the Jahi family.
      The gift of giving life to others with Organ Donation is heavenly.

      • lady2soothe says:

        Lyn,

        Thank you… I truly hope Jahi’s family will come to terms with the decision they must make. Once it’s made and she’s removed from life support it’s much easier to absorb and move forward. It’s the decision which is the hardest part.

    • roderick2012 says:

      I am so sorry to hear about your loss. Although it was over 20 years ago I am sure it is as if he happened yesterday.

      Now I understand why you have been one of the most fierce Trayvon Warrior.

      God bless you and your family.

      • lady2soothe says:

        roderick2012

        You’re so correct, 20 years has passed so quickly but the memory is vivid and could easily have been yesterday.

        I appreciate you connecting Trayvon and Kenya… One of the many reasons my heart breaks for Sybrina and Tracy… Senseless tragedy.

        Funny thing happened yesterday when I was putting up the link to Find a Grave… There was a new message from Kenya’s girlfriend Susanne. The message was posted on 12-20-13, the same day my new grandson, named after him was born.

  13. Malisha says:

    At one point I studied the Schiavo case and learned that her situation was not as simple as it sounded either. There should have been a guardian ad litem appointed for her, but the appointment was made and then the guy was “un-appointed” after doing something very minor. In my opinion, the husband had been so instrumental in blocking her medical care when her crisis was acute (apparently while he was carrying on an affair with the woman he impregnated before the situation hit the news) that he should not have been the one to make decisions in her best interests thereafter. She was NOT unconscious at the point in time when the husband actively started interfering in her care, even to the point of preventing her from getting antibiotics for an infection.

    The political situation was shot into the public awareness before REAL facts were enumerated. We did not have the benefit of the kind of public “sunshine” details we had in the Trayvon Martin murder case. And although I hate to be on the same side with the rigid right wing in ANY CASE for ANY REASON, I do not think that the Schiavo case went down with anything even vaguely akin to due process. I think that woman was discarded by her husband because she had not gotten pregnant on time for his desires to procreate; after her illness, it was pretty obvious to him that the vessel to bear HIS CHILDREN was damaged and he wanted both RID OF IT and money from it. He did a big “boo hoo” show for the cameras and he was, in my opinion, little better than a frank killer.

    • roderick2012 says:

      I will add my two cents.

      IIRC Michael Schiavo went to school and became a nurse to take care of Terri.

      Also he asserts that Terri’s father told him that he could move on as in seeing other women.

      If I had been Michael I would have left Terri in the care of her parents rather than discontinued the feeding tube, but the problem that I have is the right wing’s supposedly supporting the sanctity of marriage.

      There’s a case in TX where a pregnant married woman is in a coma, but her husband wants to discontinue life support, but TX law prevents removing her from life support even if she had had a DNR on file.

      Now this man who is already the father of one and a widower will have to care for another child by himself.

      • cielo62 says:

        roderick~ I agree re: the Texas case. It is absolutely insane to continue to keep her body alive ONLY BECAUSE she is pregnant. There is no guarantee that the baby didn’t already suffer irreparable brain damage since the mother was discovered already unconscious and not breathing. And that poor man will get stuck with the bill, have his credit ruined, have his reputation slandered by extremists and pro-lifers and in all ways made miserable for wanting nothing more than what his wife wanted AND (one could say, because I would say it) in the best interest of the unborn child.

        • Trained Observer says:

          It’s part of theTexas (and other states, too) attitude that women are not so much human beings but more as incubators.

  14. cielo62 says:

    Also, you wrote: except to say that I believe the anesthesiologist may be liable for her death.” I would very much like to read your reasoning. Jahi made it through the surgery alive, conscious and wanting a popsicle. The complications began AFTER she was transferred to the ICU. Several things to remember that are NOT always mentioned in the news: Jahi was obese, had sleep apnea, uncontrolled incontinence and maybe diabetes. The tonsillectomy was NOT routine but complicated by the health issues as well as the fact that they ALSO removed additional sinus material. My personal belief is that Jahi fell asleep, had a sleep apnea episode, woke up coughing violently (I get occasional sleep apnea and it is very frightening to wake up unable to breathe), tore any number of internal sutures from the coughing, drowned on the blood draining to the lungs triggering a heart attack and then she died from being unable to get any oxygen. An autopsy could find the torn sutures UNLESS after 3 weeks, no such evidence could be found. I’ve read the body continues to heal. I’ve also read that the body begins to decompose, so I don’t know WHAT is happening inside the body right now. In either case, malpractice will be very difficult to prove. Were I on a jury of this case, I could easily see a tragic medical complication that was not caused by negligence or incompetence. Not every death is someone’s fault. Your thoughts?

    • Two sides to a story says:

      I have sleep apnea myself (though normal weight) and I’ve had at least one seizure and and a heart attack because of it.

      No doubt it’s extremely hard for Jahi’s family to accept her death. I myself would be praying for a miracle, but to carry this out much longer is likely futile and a financial burden. From a Buddhist standpoint, life is eternal, life moves on. Jahi has moved on for whatever reason.

      For all we know, Trayvon Martin may have reincarnated and lives in the body of his year-old half-brother, Tyler. The cycle of life as well as the wheel of samsara is mysterious.

      I pray that Jahi’s family finds peace.

    • Great comment, Cielo, as it penetrates to the core concept that a harm should be remedied by financial compensation, if the harm was reasonably foreseeable and the person who caused it was at fault.

      I’m going to answer your question in my new post today.

    • roderick2012 says:

      @cielo

      Shouldn’t the medical staff have refused to operate on Jahi until after she had lost enough weight as to not be categorized as ‘obese’?

      • cielo62 says:

        roderick~ yes, I would have thought so. But since the family refuses to release any medical information, we don’t know what was suggested pre-op. Forgive me for saying this but maybe the family already HAD “magical thinking” in thinking that surgery would be the easiest way to help Jahi instead of all the hard work of a strict diet, exercise and life style changes. That kind of magical thinking permeates our society already. I agree that weight loss SHOULD have been a condition before doing surgery. At this point, it is not known if it was even discussed. So many people, INCLUDING the medical community shy away from terms like “obese.”

        • I think too that American’s and our medical system have fostered a “take a pill” and do a little surgery fix. Jahi’s parents had to know that the real fix was a hard-working lifestyle fix.

        • gblock says:

          Consider, also, that Jahi may have had a chronic tonsil inflammation that might have made her doctor decide that it was inadvisable to wait until she could lose weight (if it was more than a few pounds), and that the hoped-for relief from sleep apnea was seen as a bonus. Or, the sleep apnea may have been seen as posing a substantial strain on her heart that, again, might have made it seem inadvisable to wait.

  15. cielo62 says:

    I, too, have been following this case. You wrote “Easier for us to see that prolonging her brain-dead child’s life under these circumstances is magical thinking that will not bring her back. ” The issue here is that there IS NO LIFE. The child is gone, the body is dead. The only thing that is being prolonged are the involuntary functions that the body cannot do because it is dead. Machines control both the heart beats and the breathing. NOTHING is happening on its own in that shell casing. Caplan, a well known medical ethicist, said he could support keeping Jahi on ventilators IF the parents pay for the care. I agree. No hospital no insurance company, no city, state or department should be financially responsible to maintain a warm corpse. So far, nobody is willing to promise such care for fear they will get stuck with the bill. Honestly, you can’t blame them.

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