braincrop

A judge ruled last week that an Oakland girl whose family wants her kept on life support is legally dead. The family wants her moved to long-term care. We’ll speak with physicians and ethicists about the definition of brain death, and confer with a grief counselor about how to make the difficult decision to remove a loved one from life support.

Guests:
David Magnus, director of the Center for Biomedical Ethics, Thomas A. Raffin Professor of Medicine and Biomedical Ethics and professor of pediatrics at Stanford University
Chris Taich, director of bereavement services at the Pathways Home Health and Hospice in Sunnyvale
David Greer, professor of neurology and neurosurgery at the Yale School of Medicine

  • Beth Grant DeRoos

    This is a delicate question, but do some ethnic groups resist stopping life support more than others?

    What is the difference between the machines being used to keep this patient alive and the machines used to keep a patient alive, whose organs will be removed for donation surgery?

    • CWL

      Keeping the patient alive for organ donation is not drawn on for weeks on end. The organ teams are mobilized and surgery is done asap, to give the family closure and be able to help others. I see abuse by this family, or rather the families ambulance chasing lawyer.
      There should be changes in the law that a family can’t keep a dead person on the expensive machines/care for any longer than the organs will be harvested in order for others to live. This RN explains your question http://surgery.about.com/b/2013/12/30/deadline-is-today-for-brain-dead-california-girl.htm

  • Eleanor Vincent

    My daughter Maya was declared brain dead in 1992 following a fall from a horse. Thankfully, her surgeon declared her brain dead and did not give us the option of continuing life support. I ultimately decided to donate her organs and tissues to people in need of life saving transplants, which changed the course of many lives, including my own. My heart goes out to the family struggling to comprehend what has happened to their daughter. However, holding out false hope that she can recover will not ultimately help their grief. I’ve written extensively on this topic, including my memoir Swimming with Maya and would be happy to join the conversation this morning if it would be helpful to hear another family’s perspective. I’ll attempt to call in. Thanks for addressing this important topic.

    • CWL

      Thank you for sharing your story. I’m sorry for your loss, I am glad you and your daughter gave the gift of life and that you even got to meet some of them. If only this family would of done the same thing…Do you have a blog or is this a book someone can buy on Amazon? Thank you.

      • Eleanor Vincent

        Yes. You can visit my website and blogs at http://www.eleanorvincent.com and from there you can link to my publisher or to amazon to purchase the book. Thank you for your condolences. This entire situation with Jahi is beyond tragic. I am so sorry for her family.

        • CWL

          Thank you for the link. Many blessings to you and your family…

          • Eleanor Vincent

            You are very welcome.

  • Ramona C

    Its seems pretty obvious to me that if we stopped talking about the child’s death, brain damage, life support and got to the issues of WHO, WHY and HOW this happened, we could much more easily ameliorate the failure of a medical procedure, an establishment and let the family be.

    • L A

      The family don’t know how to let it be. They don’t believe the girl is dead. That is a different issue from who, why and how and must be dealt with now as you heard in the discussion on Forum. The who, why and how should be dealt with too but first the family needs to come to terms with reality and they need help doing this.

      • Ramona C

        Who are you to judge them for how to “let it be”. Get some education about reconciliation and how that helps people.

        • CWL

          Excuse me? Judging people who will keep a dead body alive? They are not even considering donating organs so WHY are they keeping her hooked up? They want a miracle? Unhook her and if she still breathes that will be a miracle indeed!

      • iclark

        I disagree, if it were my kid, I would absolutely need to know how it happened, why and all that. I would need that for closure. It’s not a separate issue.

        • L A

          So what happens to the body of the dead girl while all this investigation takes place? There are other sick children who need the bed. Is that harsh? The family does not understand that she is dead. There is not going to be a resurrection–she is not going to rise from the dead. The Dept of Public Health is conducting an investigation of the surgery. If the family can find a place that will take the girl’s body, fine but the hospital should not have to continue keeping her.

          • iclark

            I’m not advocating keeping her on machines. She should be disconnected and disposed of however her family wants, that is as much a part of the closure her family needs as anything else. but any secrecy or lack of clarity on the part of the hospital (if any) is just as inappropriate as keeping Jahi’s body going on machines.

    • CWL

      So you would like to “IMPROVE” on WHAT EXACTLY? The medical procedure? Well maybe you should write up a report and present it to the JAMA. Otherwise your comment makes absolutely no sense.
      This IS about Jahi death. On Dec 9.You have no clue about what failed if anything did or why. You are just another big mouth know nothing bla, bla, bla.

      • L A

        Hey CWL. Could you tone it down a bit? This is a KQED Forum comment section and we can all disagree respectfully. Do you really want to come across like someone ranting? Your style diminishes your arguments.

        • CWL

          Perhaps you should read this to realize why I’m RANTING as you perceive it- http://www.eleanorvincent.com/being-a-donor-mom/
          This lady lost her little girl and b/c of her unselfish bravery got to hear her heart beating in a man who was saved. Not the three ring circus being played out here for almost 3 wks. No blame game. Simple and dignified.
          And that is all I’m going to say about it.

      • Ramona C

        I’m a big mouth know nothing?
        I think someone needs some “non screen” time.

  • Carolyn

    This is a sad and tragic death, but the death has been turned into something grotesque by people who don’t believe in science. If there were 100 years ago, with the technology of that time, It would be as if the family wanted to keep the body on ice so that they could hang on to her.

    • CWL

      They have made it into a circus that will get uglier today at 5pm. Nothing good will come, nobody obviously from reading commenters here have been educated in any way are hell bent on pinning the “Blame” on someone.

  • Jennifer

    That the family was last attempting to have Jahi sent to a facility in NY is more heartbreaking proof of their grief-driven denial. If they want to keep praying for miracle and be with their daughter – what good would sending her body to the opposite side of the country do?

    I have experienced traumatic brain injury with a loved one, and have spent over a decade educating myself, supporting other families, and trying to find ways to advocate for more public education via the media when such stories of the complexity of brains/brain injuries/brain death become high profile. Thank you, KQED for going in depth on this topic and treating Jahi and her family and community of grievers with respect in providing a forum to discuss, understand, and begin to accept the reality of the situation.

  • Mrs. Eccentric

    i’m not sure quite how to phrase this, but here goes – how many people who end up on ventilators live to tell the tale?

    i also agree with Ms. Taich, even in this discussion there’s so much tip-toeing around things, no real discussion of why people get put on ventilators, what it looks like in the room, how these decisions get made and how quickly and what type of time frames this occur in…….my mother in law was in stage four ovarian cancer (which means you are in the end stage with very short time to live) when she was diagnosed, no docs ever discussed her impending death and they only brought up hospice the day before she died. Communication is awful in this regard in the hospital, in the media, everywhere. People need the facts about their family health, and the professionals need to take the time and effort to make sure that this happens. steph

    • CWL

      I agree with you. Dr.s are humans too and some have not been trained in telling families about what is REALLY going on or they kind of sugarcoat it b/c they “think” the patients know. Stage IV is very serious. The media as usual is blinding reporting what the family says and ignoring any medical professionals who dare give their POV. A woman above said the Dr.s said her husband was “in horrible shape” instead of dying. Everyone has a medical story, but the issue is Jahi is dead and has been since the 9th of dec. and her body is not being allowed to “pass” for want of a better word.
      Six drs. have informed the family, their daughter is gone and Dr. after Dr. at these facilities refuse to treat a “dead person”. There is a tragedy here besides what happened to Jahi that other kids or adults could of been helped with lifesaving organ donation.

  • L A

    My husband was in an accident and we consented to taking him off of life support after a week. This was at Harborview ICU in Seattle. The doctors, nurses and palliative care people were wonderful. They knew what was the probable outcome way before we did and so we met with the palliative care people the second day. It took a few days for us to understand that he would never be the same and even longer for his mother but after a week she consented to removing the life support. I will always be grateful to the people at Harborview.
    I suggest others look into what training the staff at Harborview receives in order to improve how hospitals here in the Bay Area work with the families of patients who are not going to make it.

    • CWL

      I think educating families and everyone as evidenced here exactly what IS life…and what is Death.
      CHO has been more than Accommodating. The family is not getting it.

  • diane umpall

    We should emphasize that Children’s Hospital is not a novice at treating children and because they treat they treat the sickest of children, they have had this conversation with parents over the last century more than once. The conversation participants include professionally trained social workers and spiritual leaders that are specialists in this conversation – much like your speaker and took place over weeks. It seems like a reach to assume that this family did not get the conversation and information in a way that was inadequate – just because the family is representing in their actions evidence that they are not coming to terms with the death

    • CWL

      CHO has been more than accommodating to the family. So much that
      they are abusing the system. The reason they can’t get a facility is Dr.s will not treat a “dead” person.
      This is not a “Vegetative state” this is flat-line brain death and when the Vent is discontinued the body will die. B/c she dead. Jahi is gone.
      It would of been nice for the family to use this time to donate her organs to help others.

  • Michelle

    You should not be discussing this family’s situation without the family, their representatives, or their minister. It’s patronizing. I don’t know the right answers but I do know this approach Is wrong.

    • CWL

      It is not wrong! The family is involving the media and slandering the CHO! I’m sure they had been invited to make a statement here?

      • iclark

        Usually when Forum asks for involved parties to participate and said parties refuse, Forum says they tried. They did not state that this time, I don’t think they asked.

    • Dibble409

      Michelle, I totally agree with you.

    • CWL

      from above: Do you understand the English language? “Patronizing”? “If you are
      patronizing , you tend to speak down to others, acting as though you are
      smarter, classier, or just plain better than anyone ” How exactly is
      discussing this issue PATRONIZING?
      The family has been told by no less than SIX Doctors that Jahi is BRAIN DEAD! How exactly is that PATRONIZING? Perhaps it is a case of her parents not understanding or being in DENIAL!

      • Ramona C

        Your just a bully. Take your meds.

        • CWL

          After you Ramona…

  • Christopher Richard

    The family has been forthright that they believe in miracles. Medicine and
    physiology are empirical sciences. This legal and administrative morass in this
    case results in significant measure from a greater problem that this society cannot
    deal with well – the intellectual disconnect between these two ways of
    understanding the truth of the matter.

  • Anna Meyer

    I think it is unfair to assume that these conversations did not happen appropriately. There is a body of literature that indicates that African Americans are much more likely to want to pursue any and all means of intervention and have more difficulty with withdrawing life support. These are repercussions of the Tuskegee experiment.

    • CWL

      This is not “life support” it is death support. I believe this type of thing is only done when a family are donating the deceased organs which is not the case here.

  • Ant Finn

    When my elder brother (Paul) was in the ICU after heart surgery for many days my siblings and I were called by one of his nurses explaining that Paul’s condition was “horrible” and that all of the other nurses agreed. We returned to the hospital for a conference with his surgeon. I asked if there was any hope for recovery and was told “we always hope for a miracle”. Apparantly the nurses did not. How can we, the family resolve this disparate news? We did decide to remove the ventilator and my brother died peacefully and quickly.

  • Ant Finn

    In addition I should have added to my comment that this was a Catholic hospital.

  • Pablo G

    Please talk about getting closure when the hospital has been evasive been about the cause of death, simply referring to “post-surgery complications”. Clarity matters.

    My son went in for a broken leg and almost ended up like this, suffering respiratory arrest because they double dosed him on narcotics (their words). He was lucky that his roommate noticed. I probed later and found that the overloaded staff was not keeping clear records, and the first dose was on page 30 of a thick binder rather than a visible chart.

    • CWL

      Do you understand the law of HIPAA? The hospital is not “being evasive” if anything the FAMILY is! Each case is different. Your brothers case is different from Jahi.

      • Pablo G

        I have an excellent understanding of HIPAA. And read again, that was my son, not my brother.

        HIPAA does not entitle the hospital to hide the information from the parents of the child. I saw first hand how hard they will try to avoid acknowledging any specific details. I am just a better investigator and got the bottom of our case. When I insisted, it took 10 minutes for a nurse to find the life-critical info in that binder! That is a system flaw that has to be fixed before it costs lives. In Jahi’s case, the root cause may have been neglecting abnormal clotting (read below) instead of taking it seriously.

        The common denominator is management pressure that stretches staff too thin and probably penalizes them if they take the time to do what it takes to prevent my son’s double dose or to treat Jahi’s abnormal bleeding and clotting as a present danger.

        Failure to uncover these flaws just makes it more likely that there will be more avoidable deaths. This is about listening to lawyers more than conscience.

        • CWL

          Ok. Obviously you are on a different trip here. We are talking about Jai. How exactly did the dr.s “HIPAA does not entitle the hospital to hide the information from the parents of the child.”??? Six doctors told the family the child is Brain dead.

          “In Jahi’s case, the root cause may have been neglecting abnormal clotting (read below) instead of taking it seriously.” Abnormal clotting? Are you a Dr.? How do you determine abnormal clotting? Tell me. Or stfu.I know but DO YOU?

          • Pablo G

            Wow, you really hate victims and have difficulty with logic, or even sticking to the point of this thread, which is hospital negligence, NOT ventilators. Yeah they told them the child is brain dead, but not WHY. I am not saying the child is not brain dead.

            You’re obviously trolling for a fight in the wrong thread. Perhaps your abundant abusive posts will earn you a full-ride scholarship to STFU. I have nothing else to say to you. Go ahead and get a kick getting the last word in.

          • CWL

            “Wow, you really hate victims and have difficulty with logic, or even
            sticking to the point of this thread, which is hospital negligence” This blog is about “Defining Brain Death”
            There is nothing about this thread and the hospital “negligence” but its all about people who have no medical training or knowledge and or too lazy to educate themselves! You must be hired troll for the lawyer.
            RN talks about Jahi http://surgery.about.com/b/2013/12/30/deadline-is-today-for-brain-dead-california-girl.htm
            Sad when truth is called abusive by people who clearly don’t understand.

          • iclark

            Your patronizing attitude doesn’t help at all. She’s talking about how Jahi got to be brain dead in the first place, not questioning the fact of her death. And Jahi’s parents do have a legal right to that information and it’s true that sometimes hospitals cover stuff up even though that’s illegal – we do live in the land of liability and medical liability is no joke. That doesn’t change the fact that they have a right to know. Furthermore, she’s right, covering up errors just makes them more likely to occur again.

    • Pablo G

      Quote from ibtimes.com:

      “According to reports, after her surgery, McMath began bleeding profusely from her nose and mouth, and was spitting up large blood clots. The family said hospital staff gave them a cup and asked them to catch the clots so they could be measured. Shortly afterward, the teen went into cardiac arrest. Hospital personnel were able to revive her but the damage was already done”

      I find this shocking. Large clots? And nobody worried about stroke or cardiac arrest dangers, just handing the family a cup?

      The family can get some closure from knowing that the inadequate procedures that led to this death will get acknowledged and fixed, so others will be spared the same fate.

      • CWL

        Who supplied these reports? The family. The same family that thinks their daughter is still alive. Giving the court doc about what was done http://bit.ly/1cAWenL It is not “shocking” that she would of been bleeding after such extensive sx procedure.
        Anyone who has a medical background would understand after a surgical trauma or surgery there would be blood and clots. from the mouth and nose b/c the surgery WAS THERE!

        • iclark

          It is possible that Jahi was an undiagnosed hemophiliac – this would not show up in routine labs. and some people do end up brain dead from bleeding out.

    • iclark

      the hospital CANT be clear. Privacy laws about medical matters are very strict and all medical professionals are under a sort of gag rule. unless the family gives the hospital persmission, the hospital can’t say anything about what happened. and this family isn’t going to give the hospital anything they are angry!

  • Suzanne Yost

    A comment was just made regarding people’s different cultural beliefs regarding death and medical treatment. An excellent book on the subject is “The Spirit Catches You and You Fall Down” by Anne Fadiman.

  • Sonja Travick

    Please do not dismiss the affect that the historic relationship between African americans and their distrust of the medical community coupled with the families religious beliefs. This family has a right to question and doubt everything involved with their child’s death caused by Doctor error.

    • CWL

      If they distrusted the “medical community” why did they CHOOSE to have a surgery such as this rather than trying to have her lose weight to see if the “sleep apnea” improved? A “non-sugical” approach?

  • barbara hartford

    Can the speakers address this – when a patient is put on artificial life support, the family then finds themselves in an ethically untenable position of ending a life. If there had been no machine involved, the patient would have died, and it would not have been the family’s hand in it.

    • iclark

      This is a very good point. but here is the thing – there are machines and when they are attached to a person and turned on it is to help them through a hard time that is presumably temporary – who would say no to that?
      But if the patients condition deteriorates to the point where they will not recover, but are still alive someone has to “pull the plug” or they will simply linger (and many, many do linger).
      In order to save your family from having to make this terrible decision by themselves, you should have a living will that describes your wishes. This way at least whatever they decide, they can comfort themselves with the knowledge that they are carrying out your wishes. I have one and I’m young and healthy. My family all have a copy or know where I keep it.

  • Dibble409

    I agree with the person that said it’s terribly patronizing to discuss this family’s dilemma without involving them, especially when it comes to saying what they should and should not due. Yes, this is an important topic. However the discussion could be held using other similar cases as examples.

  • A JoAnn

    Things I think may help – as discussed on the show – help the parents understand the difference and provide examples of brain death, coma, and vegetative states – and establishing more appropriate/ specific medical terminologies. Having to take a child off life support is painful, especially if one feels guilty that they did not heed warnings of the child (in this case Jahi telling her mom she knew “something bad” would happen). On occasion we hear of cases where someone who has been diagnosed as clinically dead awakens. Medicine and medical practice has done amazing things, but still is far from perfect – so given that small margin of error – we question – are we, as parents, spouses, care-givers, doing the right thing, by not giving the patient an opportunity to recover, or have they truly passed on and we need to let go peacefully and lovingly. We have to live with the decision and that question for the rest of our days. I permitted my son to be taken off life support, yet continue to feel guilty for not pressing the medical providers for more time. All I can say is for the family to continue to pray for an answer.

    As for the comment on African Americans and the medical profession – yes, we still have concerns, given the historical record of experimentation and abuse of people of color. That’s another story, but well documented – google it.

    Thank you for this discussion!

    • iclark

      I am so sorry to hear of your feelings of guilt. As an ICU nurse, I often have these discussions with families of people in chronic vegetative state (not dead but dependent on machines, unable to respond or communicate). I ask them to think about which they are more likely to regret – feeling that they did not do “everything” (I do describe “everything” in detail or the decision could not be an informed one) or if they might feel worse about causing unnecessary pain and suffering to their loved one. very hard choices, sometimes impossible for families to make – but who else should make such a decision? Me? another health care professional? a judge? we simply don’t have good answers to these questions in our culture.
      Jahi’s heart-wrenching situation there is one silver lining, She is not suffering, because she is dead. but for all those she leaves behind, my heart aches.
      One thing I’d like to make very clear is that medical science, though amazing in what it can do in many cases, does have limitations, We are not miracle workers and the human body has limitations as well – even young strong bodies can only take so much.
      Also, the way brain death tests are done with modern medical techonogy, leaves no room for interpretation. either there is function or there is not.

      • A JoAnn

        Thank you for taking the time to reply. My son had significant swelling, so much that I wasn’t sure it was him – my concern was if the tests for brain activity were accurate given the additional fluids. Not being aware of what sorts of tests were performed and if there were any medications that would have compromised testing (for example the use of a seditive when seeking a response to stimuli) This was in 1988 so I’m guessing the technology has improved and reduced potential for test result errors?

        Your job is not an easy one, helping patients and their families negoitate through difficult times, yet it is most appreciated. I will always remember the ICU nurse who took the time to comfort us and share her own personal experience making the same medical decision for her relative.

  • MattCA12

    Doctors must be straightforward with the language they use with the bereaved, and we must applaud and encourage the physicians who spoke about this on the program. It seems to me we’ve allowed the medical criteria of these legal definitions to interfere with the fact of death.

  • Sandy Shaw

    wrong timing for this discussion, re: raw situation for parents. Not necessary to air on Forum at this time?
    Give a chance for parents’ perspective will evolve. I think some comments & callers rather insensitive, Amazing to me that Childrens Hospital forced this issue so rapidly & why……?

  • Sandy Shaw

    is this mostly about $$$$? or what, very unfortunate

  • pm05

    One guest stated one of the real problems. This poor girl was on “life support” because the “system” wanted the organs. Instead of dealing with this death and family. This “system” creating the problem by not letting this go. Not letting this girl die because they want her organs.

    I am an organ donor, so I expect if need be I would be kept “alive”; but no system or doctors or donor organizations should be involved in “hoping” for a donation and thereby keeping this child’s organs alive instead of the child.

    They should have been there for the family and this child instead of trying for viable organs.

  • Jenny McLelland

    Another thing that is also getting lost in the shuffle is that pediatric trach and trach-vent kids aren’t brain dead, and that pediatric subacute care is a completely inappropriate placement for a child like Jahi. My son (mostly just trached, but rolls on and off a ventilator on occasion) lived in pediatric subacute for eight months following his discharge from the NICU. It isn’t a place where brain dead children go to stare at the ceiling. Pediatric subacute hospitals and nursing homes are medical facilities where children are sent so that their medical, emotional, and developmental needs are met in a way that allows them to thrive despite their medical issues.

    There are three broad categories of trach-vent kids. One is kids who need help breathing for some reason, but who get stronger and are eventually weaned off the vent. Two is kids who will always need help breathing, either due to brain injury or lung issues. Three is kids who need help breathing as they slide toward the end of life, but who need ventilator support in their final years to maintain quality of life. A brain dead child doesn’t fit any of these three categories. (A sneaky, sub category is kids trached due to craniofacial or airway issues, but lets just ignore that one right now, because we’re talking about ventilator kids).

    Pediatric subacute care facilities are able to provide top notch medical care to all of these kids. The kids who are going to come off the ventilator get medical care to help strengthen their lungs so they can be weaned off the ventilator and go home. The kids who have to use the ventilator to maintain the status quo are provided with medical care so that they can achieve maximum quality of life. Finally, the kids who are using the ventilator toward the end of a fatal diagnosis have their quality of life preserved while they are on the ventilator, and can die with dignity when the time comes.

    Trach-vents are a modern miracle, and when used appropriately, can vastly improve the quality of life for children with complex medical issues. Most people don’t realize the different crazy diagnoses that can land a child on a trach-vent, but please remember, trach-vent kids are kids. And most of them grow up and end up just fine.

  • Omar Alami

    I believe brain death is a truly thing, and is even twice as awful when it is experienced by a family member. I believe that brain death is not immediate death however because of evidence that brain death in female patients have not stopped them from gestating a human child(even if the child is deceased). Back on topic your story is very touching and I am sorry for your loss.

    • iclark

      certain bodily functions don’t need a brain – the heart beats automatically, the stomach digests and the intestines absorb nutrients and, yes, a fetus will gestate. The most basic function that is dependent on brain function is breathing.

      • L A

        Actually the brain is needed for the functions you list.

        • iclark

          not for gestation, that was my point.

          • L A

            If you reread your comment I hope you will see that your point included a number of functions which you said don’t need a brain. And here is the definition of gestate: “carry a fetus in the womb from conception to birth.”

          • iclark

            If you reread the thread you would see that I was responding to Omar’s comment ” I believe that brain death is not immediate death however because of
            evidence that brain death in female patients have not stopped them from
            gestating a human child” My point being that brain death can be immediate and not prevent a woman’s body from completing the process of gestation.

  • Sandy Shaw

    I feel that many comments in poor taste, rush to judgment… and lack of true empathy for the family, give some credit to their confusion & disagreement w/ dr’s opinions? time to realize what seems apparent scientifically… perhaps they need Time to realize what seems inventible. Former Prime Minister Ariel Sharon, Israel has been in coma since 2006…. seven years

    • L A

      She is not in a coma. She is dead. I do agree with your feelings about some of the comments.

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