Good reminder about the Jahi McMath case

No one will argue that what happened to Jahi McMath isn’t a tragedy. But, John Di Camillo of the National Catholic Bioethics Center reminds us, it may not be the cut-and-dry case of a hard-hearted hospital wedded to the culture of death that some reports are making it out to be.

Jahi McMath went in for tonsil surgery and ended up being declared brain dead three days later, and there has been a legal struggle ever since, to determine whether or not she can be moved to another facility which will agree to continue keeping her on life support.  The whole story is horrible and heart-wrenching, and I can’t even begin to imagine what I would do if I were the parents of this girl.

But we, as readers, don’t know all the details of it.  In an interview with the Catholic News Agency, Di Camillo says:

“It’s not something that’s simply a clear-cut, back-and-white case that we can, from the outside, say we know what’s going on. Because we don’t,” he added.

So even though this is a highly emotional case, it’s important for Catholics not to make rash statements about the decisions of the people involved.  The other day, I almost commented somewhere that that the hospital probably wanted Jahi to die to cover up any evidence of malpractice during the surgery.  But that would have been a serious sin of detraction.  Not only do I not know the motives of the doctors involved, I do not have any specific medical information about the case.

Di Camillo stressed the need to know the facts of Jahi McMath’s case before making a moral judgment.

“Before even getting to the ethical considerations, the medical facts are an absolute priority,” he said. “If we have a medically clear and confirmed determination of death by these neurological criteria, then we’re dealing with a situation where the body is actually the corpse of the deceased of this young girl.”

“If we’re dealing with a case where the person is in fact brain damaged but still alive, then we have a whole different set of ethical criteria because we’re talking about a living human being who is worthy of  full respect and full treatment.”

Di Camillo reminds us that end-of-life decisions must be made on a case by case basis, and that “[l]ife support systems are sometimes ordinary means of treatment and sometimes disproportionate.”  He reminds us that the case is not truly similar to Terry Schiavo, because Schiavo was clearly not brain dead; her husband simply didn’t want her to be alive anymore.

I wrote an article for Catholic Digest exploring some of the dilemmas caregivers face when they have to make life or death choices about the people they love.  (The article includes some links for further reading on Catholic medical ethics, and a site that provides samples of an advance directive with durable power of attorney or healthcare proxy.)

The Church does not, as many people imagine, insist that we squeeze the last possibility out of every beating heart.  I do not mean to imply that that’s what Jahi McMath’s parents are doing! The point is, we simply do not know.  It is appropriate to pray for the family, and it is appropriate to have public and private conversations about what the Church teaches about end of life medical decisions.  But it is wrong to assume we know what is going on in this particular case.

The only thing I’m not clear about is whether it ought ever to be up to hospitals to make the decision about whether to remove life support, assuming that the patient truly is past saving. I know that there are cases in which a person really is truly dead, and is being kept artificially “alive” because the family can’t bear to say goodbye.  In those cases, should the hospital be able to make the decision for them?  I don’t know.


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  • Kari

    Without knowing the facts of the case, I am concerned whenever I see the term “brain dead.” That’s a medical construction that makes organ transplant possible, and it seems to me that it kills perfectly living people. Having done a small amount of research on this, I wonder just how far off the reservation the ethics of the medical community may have wandered.

  • Anna

    True, it’s impossible to say from the outside what exactly is going on here. But it’s also true that a heart-lung machine (if that’s what Jahi’s on – the newspaper accounts say a “ventilator keeping her heart beating,” which can’t be accurate) won’t keep a person going forever; the body will start to break down after a week or two. So if Jahi is still assimilating nutrients from her IV after about a month, that would indicate to me that she’s not actually dead. We have a friend who is on a transplant team and has talked about not being especially popular among colleagues as it is only on his shifts that anyone is ever not declared dead. Sometimes he does declare death and allow organs to be harvested, but not always, even though the other physicians always declare death (there always have to be two).
    Also, I think someone needs to be kicked anyway for heartless statements like that from the hospital lawyer a few days ago: “Her family needs to accept her death… so I don’t have to keep standing here in front of you like this.” Seriously?

    Another couple things to take from all this though are: first, don’t sign a living will. You need a medical power of attorney so you have someone to make those case-by-case decisions. There is no way to foresee all possible scenarios in a pre-signed document. Second, hospitals do have nearly total power to decide whom they will treat (and your “attending physician” isn’t necessarily your doctor you’ve known for years; it’s the guy on call that day). Jahi’s is far from the first case where a hospital decides something against the wishes of the family and the person’s best interests. It’s pretty near impossible to override the hospital’s “ethics board,” no matter what your medical p.o.a. directs.

    • CentralJerseyMom

      The heart does not need signals from the brain stem to beat. The heart has its own pacemaker. As long as the lungs are ventilated, the heart can continue to beat for a very long time. The record for any person declared brain dead to have a heart continue to beat is 14 years, although the vast majority have cardiac cessation within 1 year — most within 3 months.
      This is actually not a complicated ethical case at all. It’s entirely a problem of education. Jahi is brain dead. All the cells in her brain and her brain stem are dead and there is no blood flow or oxygen reaching them nor is their any electrical activity. At this point, there never can be because the brain cannot re-generate itself. The example the people give is — a coma is like a TV with a screwed signal that has “snow” on the screen. Brain death is like a TV with the plug pulled and a blank screen. Electrical “power” cannot be restored to the brain. The screen will remain blank forever.
      The legal definition of death is in the hands of doctors, not families, and that’s as it should be since death is a medically-defined condition. I cannot define my dead father as “alive” for purposes of continuing to receive his pension check. Nor could I define a wealthy great aunt with Alzheimer’s as “dead” for purposes of withdrawing nutrition so that I could inherit her fortune. Doctors say when a person is alive or dead, not lay people. The legal standard for brain death is extremely clear and rigorous. The fact that no one has been able to get this family to accept it has nothing to do with a failure to discuss death over the dinner table.

      • Anna

        This was Simcha’s (and the NCBC’s) original point: we’re not directly involved, and so we don’t know whether this is a case of incompetent (or “it’s futile care if the patient is disabled”) doctors, or of parents who can’t let go. In the Schindler-Schiavo case, there were doctors who agreed to declare Terri brain dead, even though she was quite alive and responsive (and even able to eat without a feeding tube); the same is true of a growing number of cases where the patient was declared brain dead and readied for organ harvest and then woke up and walked out of the hospital days later. It *should* be rigorous criteria, rigorously applied, but the reality is that it often doesn’t work that way.

        • CentralJerseyMom

          Where did you get the idea that there were doctors that wanted to declare Terri Schiavo brain dead? That’s manifestly not true since she was breathing on her own and inability to breathe on your own is a *primary* requirement for diagnosing somebody as brain dead (since brain death requires not only an absence of higher brain functions but an absence of brain stem functions, such as breathing.) There were six neurologists over a period of two weeks, three of whom were selected by the McMaths, who determined that Jahi was brain dead. Not a single doctor has come forward to say that she isn’t. This is absolutely not a case of misdiagnosis. The McMaths have indicated they just don’t believe there IS any such thing as “brain death.” They think a miracle is going to bring her back to life.

          • Anna

            Let me try one more time: we aren’t directly involved in the McMath case, and the likelihood of media reports mangling things is high. So, as Simcha said, the best thing to do is pray for all involved in that case and educate ourselves as to how to handle difficult medical situations that are personal to us.
            Also, yes, Terri was frequently reported to be brain dead, though, as you said, that was manifestly untrue. Hence the need for caution when the media is reporting on disabled or brain-damaged people.

          • CentralJerseyMom

            I think you’re confused. No doctor ever gave the opinion that Terri was brain dead – much less was it “frequently” reported. You may say it, but that does not make it true.

          • Anna

            In 2005, when Terri was killed, “everyone knew,” thanks to media portrayals, that Terri was a brain-dead vegetable whose parents needed to accept that fact and pull the plug (in spite of the fact that there was no plug to pull.) In the McMath case, “everyone knows” that Jahi is brain-dead and her parents won’t accept that.
            Brain-death can be a legitimate determination of death. The physician friend I mentioned in my first comment sometimes does use brain-death criteria to clear patients for organ harvest. But sometimes the patients don’t meet that criteria – even though the other transplant team physician already declared brain-death. It defies belief that, year in and year out, this one doctor is the only one who sees any still-living potential organ donors. There are also numerous accounts of people who were declared brain-dead and cleared for organ harvest (which must be at least a two-doctor determination) and who awoke just before harvest and recovered. Brain-death may be what has happened with Jahi, but I don’t have enough faith in those who make that determination (or in the media) to believe media accounts without question. Hence the need for those of us outside this case to avoid wholesale condemnation of either this hospital or the McMath family.

          • CentralJerseyMom

            “In 2005, when Terri was killed, “everyone knew,” thanks to media portrayals, that Terri was a brain-dead vegetable whose parents needed to accept that fact and pull the plug (in spite of the fact that there was no plug to pull.)”
            She was diagnosed as being in a persistent vegetative state and no doctor ever said otherwise. If you mean that people confused PVS with “brain dead” I’m sure you’re right. But you said previously that “doctors” called her brain-dead and that is completely incorrect and can proven from the record, which is extensive. Therefore, when six neurologists call Jahi McMath brain dead it is completely false to say “some doctors also called Terri Schiavo brain dead too.” They didn’t. The issue with Terri Schiavo was that it was essentially necessary to cause her to die from thirst and starvation in order to kill her. The Catholic Church opposed this because she was not dead nor had anyone suggested that she was.

          • Anna

            You are right, I should have said from the outset that that was what everyone understood the doctors in the Schindler-Schiavo case to mean by the [mis]diagnosis of Terri’s state as irreversibly unaware and unresponsive. And there were doctors who said (correctly) that she was not, in fact, in a PVS. The PVS diagnosis is much “squishier” than brain-death, but I don’t think either one is currently well-applied (and I don’t think PVS should be a diagnosis at all).

          • CentralJerseyMom

            BTW, you also said that Terri Schiavo was able to eat without a feeding tube, which was also incorrect. It was the removal of the feeding tube which was the subject of litigation. Under no circumstances could it be remotely legal to withhold nutrition from a person able to eat by themselves. The question was — was it legal to remove a feeding tube from a non brain-dead person. You clearly haven’t even bothered to google the case or read so much as a Wikipedia article.

          • Anna

            Well, it’s true that I haven’t consulted Wikipedia, but that’s because my mom is friends with the Schindlers and I didn’t feel a need to read Wikipedia’s version. Yes, I’m well aware that Terri had a feeding tube; she had been fed by mouth, but Michael had the tube put in (I forget what year into the whole thing), citing fears Terri would choke. Once it was in place, he argued that it was medical treatment that should be withdrawn.
            Anyway, that’s beside the point of 1.) Simcha’s original post: we don’t know whether it’s a case of culture-of-death hospital or too-grief-stricken-to-think-straight family, so we should pray for both without demonizing either and 2) my original post which was, that’s exactly right, we don’t know and shouldn’t base our judgements on media reports, but that given numerous cases, certainly not only Terri’s, I am more inclined to mistrust the official diagnosis than I am to mistrust the family.

          • Cosmoterran

            Anencephalic infants can breathe on their own, but are ‘brain dead’ by virtue of possessing only brainstems or partially-developed brains.

  • Julie

    I don’t know the particulars of the case either, but the thought of that kind of authority in the hands of a hospital scares me. Better to keep a dead body on life support a little too long than to take the decision away from the next of kin.

  • Kari

    Not signing a living will is great advice.

  • Tamara

    She also did not have a simple tonsillectomy. She had a much more complicated procedure – her third surgery on her upper airway. She is dead. This is a very sad thing. But keeping her “alive” by breathing for her is cruel. It is desecration of a corpse. Shame on the lawyers and those who have encouraged her mother to refuse to accept her death. Here is some good information regarding the case. and People accuse doctors and nurses of being too quick to end things. In my 14 yrs as an RN, I have seen to opposite far too often. Grandma is wasting away from cancer, weighs 70 lb and looks like a skeleton. But she codes and the family begs us to “save her” when all we are doing it torturing her. Properly done CPR often cracks ribs, and it feels cruel to do it. Death is inevitable for all of us. We should not fear it, but be prepared for it.

    • jen

      Word, Tamara.

  • A J MacDonald Jr

    Having a living will is a good idea, and prevents exactly this situation. (Not that I would expect a young girl (like Jahi) to have one.) My sister was recently admitted to the ICU because she had sepsis, and cancer. As her breathing became more difficult, we allowed the doctors to put her on a ventilator to help her breathe so she could fight the infection. After a couple of days it became obvious that she had in fact died, and that the ventilator (alone) was keeping her alive. We made the decision to take her off the ventilator, because she had a living will saying she didn’t want to be kept alive by artificial means. When she was admitted she was asked if she wanted everything done to resuscitate her and she said yes. She was unconscious when we were asked about putting her on the ventilator. We thought it would help her fight the infection and, since it wasn’t (at that point) keeping her alive, she would want to be on it. But once she no longer responded, her body continued to be ravaged by the infection, and she began briefly raising her right arm and dropping it (a sign of brain death), we (and the doctors) knew she was already gone, and that the ventilator alone was keeping her body alive. That’s when we followed her desires, expressed in her living will, and took her off the ventilator. She died 10 minutes after we did. The doctors and nurses knew (better than we did) what a difficult decision this was for us to make, and they we’re very glad (= relieved) we did, because there was no hope, even though it might have seemed like there was, because she was still technically alive. They said they could do a tracheotomy, to make the ventilator permanent, put her on dialysis, and that she might “live” longer (still unconscious), but, because she had a living will, we knew she didn’t want to “live” like that. A living will is made when there is no crisis, when you have a clear head, and can think rationally. When you’re in the ICU emotions are running very high, and without a living will one can easily make a wrong decision, such as not wanting to let go of a loved one, even when there is no hope of recovery. A good video to watch about this is on YouTube: “Compassionate Care in the ICU”

    • jen

      I made the decision to revise my living will and get it notarized when I was in the hospital and they were trying to figure out how to save both me and my son when I went severely preeclamptic. I thankfully avoided ending up in the ICU on a ventilator (barely) but I was by myself (my husband was out of town) and I knew I needed something to communicate what I wanted for care.

      My grandparents also have a living will and it made my grandfather’s last days less stressful because he had dictated what he wanted for his care. It was stressful (losing a loved one is definitely hard) but it meant that he had a peaceful death and that was pretty much what we all wanted for him.

  • jen

    It’s local news for me as I’m in northern California.

    It’s been a really hard issue for me because of the time I’ve spent with my son in the PICU. I saw kids die in there and I unfortunately watched as a family had to make that decision. (They saw me making the sign of the Cross one day when I was walking out and asked me about my faith. We started talking about our kids and got to be close.) It was a really tough decision for them and they tried to prolong making it as much as possible. I can say from experience that seeing someone on a ventilator who is sedated or comatose but still alive is very different from seeing someone who is being kept alive artificially after brain death — the latter looks like there’s a machine moving the chest in a mannequin. The staff has to be really clinical in how they talk to the family and unfortunately, it can come off as looking uncaring.

    I actually saw the hospital spokesman getting choked up while talking about it a few days ago and I’ve seen the hospital lawyers talking about it. They’ve never struck me as uncaring but they are very clinical and neutral in how they speak — they have to be as a rule when dealing with pediatrics. The family’s lawyer, Chris Dolan, on the other hand, has really struck me as a sleazeball in how he has talked about things and how he has handled them. It’s been a freaking media circus and he has been feeding it. I’ve read articles by ethicists that pretty much say the same thing you’re saying, Simcha, and I’ve just seen this tragic situation being milked for nefarious purposes by the Dolan and some of the pro-life causes in the area.

    It’s a tragedy no matter how you look at it.

  • HenryBowers

    I wish Catholics would have used as much restraint in condemning George W’s Iraq war; isn’t the whole point of confidential state secrets that they are unknown to everyone else?

    • Andy, Bad Person

      Huh? Just war and euthanasia are completely different topics.

      • HenryBowers

        So the sin of detraction only applies . . . where?

        • Mr. X

          Andy, I got the feeling there’s no getting off this merry-go-round once you start. Best just to slowly back away and nod your head in agreement.

          • HenryBowers

            Annnnnnd my point of argument remains untouched, as usual, while people mock me, whine, and cry. Would anyone else care to attempt to resume the topic?

          • Fr. Denis Lemieux

            I think the difference is that government officials are acting as ‘representative’ government – in other words, they are supposed to answer to us – which I realize is a quaint notion these days. So when a President commits the country’s military to combat, the country (aka any citizen) has every right to question, critique, demand clarity of reason, etc.

          • enness

            Somebody didn’t get enough attention as a child…if you’re gonna troll, don’t complain about other combox patrons not taking the bait.

  • KyPerson

    I had medical power of attorney for my mother. She had to go to a nursing home (and they took excellent care of her) but toward the end she began to fail. She had made me promise not to put her on a ventilator or a feeding tube, so when the doctor asked, I said IV for hydration only and keep her free from pain. It turned out that we did not need the IV. Her organs shut down and she died. It was as she wished. Father had given her the last anointing the week before and she died on Mother’s Day.

    • Nan

      My mom had a stroke 2 years ago and had no documents in place so when they were concerned about her airway being compromised, they put her on a ventilator. We were told she wasn’t going to live and that we had 2 days to decide whether to warehouse her in a nursing home until she wore out or to pull the plug and put her in hospice care. The indicator was her left arm, which was twisted so the palm was out. Two days later, the arm had relaxed and we were told it was time for a trach and feeding tube. But they still didn’t expect her to regain consciousnes and if by some miracle she did so, they didn’t expect her to have any cognitive function.

      She was weaned from the ventilator and when a speaking tube was put in said “I wanna go home.” later she demanded “bring me Pizza Hut.”

      While she was initially completely paralyzed on the left, she has since regained some movement and has been in Pt, where she’s working on standing, sitting and strengthening her core. Tonight, for the first time, I saw her put into bed without a heuer lift. Instead, the aide had her hug him and gave her a boost out of the wheelchair, then helped to pivot her to the bed. That was pretty amazing!

  • Yonah

    I’m okay with medical facts. But, what I’m leery about is medical decisions that are made fast and non-transparently. We all know people who have been utterly screwed over by hospitals and nursing homes. My mother and mother in-law were injured by nursing homes and those injuries led to their premature deaths. Institutions habitually evade responsibility and lie. That’s the psychological problem here. Whose word about “medical facts” does one trust? I assert that the frequent corporate crimes of the health care industry have engendered a natural distrust which impedes the family from arriving at the industry’s desired attitude about their loved one. Somebody is going to have to prove their case in that family’s moral court of law. That would take time. I would give them the time.