A view of St. Paul's Hospital. Credit: Brent Granby (CC BY-NC-SA 2.0).
Posted on 01/04/2014 7:06:47 AM PST by NYer
.- The “tragic” case of teenage girl Jahi McMath – now at the center of a legal controversy over brain death – shows the need to determine the facts before making ethical conclusions, says a bioethicist.
“The difficulty of these cases have to be recognized, especially in terms of the human suffering of the families,” John Di Camillo of the National Catholic Bioethics Center in Washington, D.C. told CNA Jan. 2.
“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.
“It’s all in the details of the medical facts. We have to defer to reason when we see that the facts have been clarified, and then we can use those as our starting point for our ethical reflection.”
Jahi McMath, age 13, underwent a complex tonsil removal surgery at Children's Hospital Oakland on Dec 9 to treat her sleep apnea. After the surgery, she appeared fine but then underwent cardiac arrest, lost oxygen to her brain and had extensive hemorrhaging, the Los Angeles Times reports. She was first declared brain dead on Dec. 12.
Five physicians, two at Children’s Hospital Oakland and three independent doctors requested by the family, have declared the girl to be brain dead. The doctors have said the girl is unable to breathe on her own and other tests show that there is no blood flow to her brain and no signs of electrical activity. She is presently on a ventilator.
A federal court order has barred the hospital from removing life support systems until Jan. 7, ABC News reports. McMath’s family hopes to transfer her to a long-term care facility where she can stay on life support.
The family’s lawyer has asked Children’s Hospital Oakland to perform a tracheotomy and insert a feeding tube, procedures necessary before any transfer.
The hospital had said it “does not believe that performing surgical procedures on the body of a deceased person is an appropriate medical practice.” It said transferring the girl would require the approval of the coroner, as she is considered legally dead.
The hospital added, however, that it continues to support McMath’s family “in this time of grief and loss over her death.”
On Jan. 3 the girl’s family and the hospital reached an agreement to allow a team to transfer her to another facility, the Los Angeles Times reports. But a judge has refused the family’s request to have a doctor perform the procedures required for the move. The girl’s mother will take full responsibility for her during the transfer. It is not yet known what facility will receive the girl.
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.”
He said Catholic teaching holds that “full brain death” criteria are legitimate indicators that the patient has died. However, he also warned about “misleading language” which uses the term “brain death” to describe those who are brain damaged or in states of reduced consciousness where a patient may still have brain stem function.
Patients deserve proportionate care that offers a reasonable hope of benefiting them without imposing an “excessive burden,” he said.
Catholic ethics do not support the mentality of “life at all costs,” but rather promotes life “within reason and within the context of one’s circumstances, possibilities, pain, suffering.” The bioethicist said there is a basic obligation to protect life “within the limits of reason and the limits of that proportionality”
Di Camillo again noted that appropriate treatment depends on the facts of the case. Life support systems are sometimes ordinary means of treatment and sometimes disproportionate.
“It’s not an absolute. It has to be determined on a case-by-case basis, in light of the facts,” he said.
Jahi McMath’s situation has prompted comparisons to Terri Schiavo, a Florida woman who suffered severe brain damage in 1990, lived in a persistent vegetative state for years, and died of starvation in March 2005 after a contentious legal battle. Her parents wanted doctors to provide her nutrition and hydration, while her husband did not.
Di Camillo said such a comparison is “difficult” because it is known that Schiavo was in a persistent vegetative state and “clearly not brain dead.”
Schiavo “could not satisfy any of the criteria for brain death as far as I understand it,” the bioethicist said, while McMath’s status is “the very question at issue.”
The Terri Schiavo Life & Hope Network, founded by Schiavo’s parents, brother and sister, said Dec. 31 it has been overseeing the effort by several groups to transfer the teen girl out of the Oakland hospital.
The network says McMath's case draws attention to hospital corporations' “vested financial interest in discontinuing life.”
Ping!
I read some article that said a death certificate was issued for this girl. How can a doctor declare a person dead when her heart is still beating? Just as with Terri Schiavo, there is a ton of misinformation being written about this poor girl.
Wesley Smith wrote a powerful book on the subject called “Culture of Death”. Worthwhile reading.
For me, there is only the prayer to Jesus that He lead the family and judge to His will; and that all will be open to hear and follow His guidance. I do not say this lightly, but with every fiber of my being.
I agree that the public does not have clarity on this case.
But, at this point, I’m standing by parental rights. Only a DNR signed by the patient prior to the event or family members who have legal authority should be allowed to pull the plug.
At this point, it’s obvious that the parents do not trust the hospital. (After what happened to their daughter, who can blame them?) Perhaps, after a transfer and a detailed examination by a physician that they have faith in, they may change their tune.
But they may not. If all of the hospital’s press is accurate, this girl’s body won’t last long and it’ll be over rather quickly. Then the family can grieve, what they see, as the natural death of their child.
I agree the parents do not trust the hospital and the hospital is trying its best to cover its ass.
FOX news reported that 6 different doctors, some independent of the hospital staff, have been called to consult and have declared this child dead.
No doctors from any organization or facility have issued a contrary opinion.
Their tests would show if the physical body responded to any stimulus, even primal, that would indicate brain function, even brain stem
A coroner has issued a death certificate. Presumably they also do that when organ donation is made from a machine ventilated corpse
the hospital and family have reached agreement that the family can take their daughter out of the hospital by assuming all risk for the outcome of the removal
Possibly they are trying to figure out what reputable doctor not on their staff, and at what facility, will perform a trach and insert a breathing tube into a coroner case ... the ball is in the family’s court to handle this
It is a complicated issue but deep inside we know a family cannot demand that a patient be hooked up indefinitely to a ventilator or demand any medical protocol be violated by a hospital, their only option is to find another care facility. Other than the hairdresser in NY, not one hospice or LCF has stepped up, that I have read about.
To believe this child is still “alive”, you would have to believe every single medical professional and facility in the USA is in collusion with the hospital against the family
This is not like the Terry Schiavo case and it’s really unfortunate for the Schiavos and for the truly pvs patient that they are attempting to make it so. The outcome may be to give even more decision making power to the hospitals
Thank you silverleaf. This is not the Terri Schiavo case, and what the family is doing is quite frightening and disgusting.
I did not say that the girl is in the same condition as Schiavo. There are conflicting stories that I have read about the case. I do not know what the girl’s true condition is, but it is not up to a hospital administrator to pull someone’s plug. The parents do not want to, and they have that right and may move her to a facility of their choosing. It crosses a very precarious line when bureaucrats determine who lives and dies and next of kin have that decision taken from them. I clearly remember many in the media stating that Schiavo was brain dead when she was not.
Again, I have never heard of a death certificate being issued to someone who’s heart was still beating. I thought you had to be declared clinically dead i.e., no heartbeat in order for a coroner or doctor to make the determination.
No, clinical, legal, death has often been redefined as evidence of brain death. The body can be kept alive by technological means long after brain death and the heart is one of the organs often kept alive for harvesting.
This situation is radically different from that of Terri Schiavo. Mrs. Schiavo was not dead, not brain-dead, not in pain or discomfort, not even "terminal" --- she was just an an otherwise healthy adult woman with a severe brain injury. Terri needed nothing but what any other human being needs --- nutrition and hydration, plus hygienic and comfort care --- to do what we all have a right to do: to go on living.
Making Terri Schiavo die by deliberate starvation/dehydration was murder.
But Jahi McMath is dead, and to keep ventilating her remains is the abuse of a corpse. I know that sounds severe, but in my judgment, that's what it objectively is.
Her parents need to make arrangements for the respectful and prayerful interment of her remains. Of course, if people were lying about Jahi McMath's condition, then the whole ethical judgment changes. But I understand that the doctors' findings --- even those brought into the case by Jahi's parents --- are unanimous.
I do feel sorry for the parents. Losing a child means deep, rending, lasting pain for the rest of their lives. May God console.
My husband died at home. Although in a hospital bed with an IV attached. My children stood around his bed with other adult friends of mine saying a Rosary.
What’s so terrible about this family taking their daughter home. Either to die or to experience a miracle of healing. We do not know and cannot judge.
Yes, this case is very different from Terri’s case. But, in reading the mother’s court statement, I can understand why she is unwilling to believe the hospital. She says her daughter was experiencing complications after surgery that nurses insisted were normal. Then her daughter went into cardiac arrest. Afterward the doctor(s) came across as heartless and unsympathetic. Now there are other people telling her there is hope (even Terri’s family reportedly has been trying to help her), and her daughter seems alive to her when she visits her. In exactly the same position, I’m sure every single one of us here as mothers would be fighting just as hard.
The Santorum family did, as well as other families who lost newborn babies.
I don't have an opinion on whether it's the right or wrong thing to do. I just saw your comment, and immediately thought of the Santorums. And, of course, in the old days (when my parents were young - 1940's or so), people held viewings in their homes, not at a funeral home. Nowadays that kind of practice seems so alien to us.
It would have been morally wrong for me to override all reason and insist on tortuously prolonging her dying process as long as possible.
And in Mother's case, she was dying, but not dead.
In this case, the child is dead. The parents are (no doubt inadvertently ) doing moral harm to the hospital staff, I think, in pressuring them to violate their sound ethical decision to stop manipulating Jahi's corpse.
Once again, the whole thing changes if these facts are wrong.
That must have been terribly difficult.
My dad lived to be 100, and I wondered if anything like this was in place for him. My brother had the medical power of attorney for such decisions.
As it happened, though he died 13 days after he turned 100. In my mind, that was a goal of his. I have no idea if any medical support was stopped.
It would have been morally wrong for me to override all reason and insist on tortuously prolonging her dying process as long as possible.
And in Mother's case, she was dying, but not dead.
I’m so very sorry. It is one of the most difficult decisions any one can face. But I understand. I went through a similar situation with my mother in 1996 and then my father a year and a half later.
In my mother’s case, she was admitted to the hospital, the coronary intensive care unit (CICU) on the morning of December 30th 1995 for what was at first thought to be a heart attack because of her chest pains and history of angina, although it didn’t at first seem very serious. My father and I spent that day and the next with her and I went back to the hospital New Year’s Eve evening, left at about 9:00 PM. Her last conscious words to me were “please pray for me”. A little after 11:30 PM I got a call from the hospital (Johns Hopkins) telling me that she was in extreme respiratory distress and asking me to give them permission to put her on a ventilator. Of course I said yes, then I called my father, called my brother asking him to pick up my father – my dad wasn’t in the best of health at the time and wasn’t able to drive at the time, and called my nieces and nephew and drove straight to the hospital. I still remember seeing the New Year’s Eve fireworks as I drove through the city. I didn’t get any sleep for the next 48 hours.
The moved her from the CICU to the medical ICU. She had had a very mild heart attack but that wasn’t the real problem, she had acute pancreatitis. Things went from bad to worse over the next few days as the doctors tried everything to treat, support and stabilizer her. She never regained consciousness. Her kidneys shut down and she was put on dialysis. She became very swollen with fluids and her skin started turing yellow as her liver was also failing. We had almost daily conferences with the doctors, who I will say along with the nursing staff, were extremely compassionate and more than willing to fight for her life. They performed many tests and scans, gave her antibiotics and other medications including insulin since her pancreas had ceased functioning.
After two weeks in ICU, the doctors, several of them including the chief of gastroenterology and neurology told us that my mother’s pancreas had in their words “gone haywire”. This puzzled them as my mother did not drink, smoke, had no indications of gallbladder disease or gall stones, any history of cancer, had been in good health, nothing that would explain why she suddenly became so sick. What they told us was that her pancreas was pumping out toxins; digestive enzymes all through her blood and throughout her body and that her pancreas was basically liquefying and digesting its self along with her other internal organs. Her last EEG also showed that while she was not “brain dead”, there was still blood flow and some electrical activity, her brain was shutting down as well, the poisons her own body was producing was slowly killing her brain cells. They told us that in very rare cases, a person could have their pancreas removed and live but not without massive amounts of medications but with her kidney and liver also failing and her condition and the brain damage, that she’d never survive such a surgery, and even if in the extremely unlikelihood she could, she very likely would never get off a respirator, dialysis or ever regain consciousness. The doctors recommended that she be removed from life support although we never felt pressured to do so. They told us that keeping her on life support and dialysis would only keep her body functioning for at best a few more weeks before catastrophic organ failure and complete brain death but told us that if we wanted to keep her on life support until then, that was our call.
We, especially my father (my parents would have celebrated their 50th anniversary that June) agonized over what to do. I also remember my mother and I talking about the Karan Ann Quinlan case when I was a teenager, mostly to warn me about the dangers of drugs but also about the right to life and end of life issues. While she was a devout Catholic, a very traditionalist Catholic and she didn’t think that a person in a coma should be removed from life support as they had a chance of recovery, no matter how slim, but she also differentiated that with the use of extraordinary measures and artificial means to keep someone alive when artificial means was the only thing keeping them alive and when it was cruel and futile to do so. My father, brother and SIL who are also devote Catholics and after talking to their priest, agreed that that it was time to say goodbye and let her go. The priest came in and gave her Last Rites. My father didn’t want to be present when the respirator was removed so I stayed with him in the hospital cafeteria. My brother and SIL were present. They told us that after the respirator was removed, there was no spontaneous breathing, no gasping for breath as we were warned could happen, she just quietly slipped away, her heart stopped beating within minutes. She was 71 years old. I miss her every day.
And the doctors asked our permission to perform an autopsy which we granted after they explained how puzzling her case was and how perhaps they might learn something that might save someone in her condition in the future. The result of the autopsy was that her pancreas had become a gelatinous mass but there was no cancer, no gallbladder or gall stones, we reiterated that she was not a drinker or a smoker and her PCP confirmed this and that she wasn’t on any meds that could cause pancreatitis; it was as they told us idiopathic, meaning that there was no explanation for what happened and why.
A year and a half later my father was admitted to the same ICU for bacterial pneumonia. He’d had many, many health issues since he had bacterial meningitis and almost died in 1992 and spent over two months in the hospital. After my mother died, he had a living will and advanced directives done. He told me many times that if there was no hope; that he didn’t want to be kept alive by artificial means.
When he was first admitted to the hospital in 97, it seemed that he might pull through but a few days later had to be put on a respirator. He couldn’t talk but he kept pointing to the vent and shaking his head and finger at me and mouthing the word “No”. He even tried to pull it out at one point and had to have his hands restrained. I kept telling him what the doctors kept telling me, that he would recover. But after nearly 8 weeks in ICU (every day of which I was at the hospital) and on a vent, then given a tracheotomy, tubes put into his chest and lungs to drain fluids and 2 weeks in, losing conciseness and slipping into a deep and unresponsive coma, it became increasingly evident to me that he wasn’t going to pull through.
But one again and to their credit, the doctors and Johns Hopkins weren’t willing to give up right away, even with his living will and advanced directives. They kept trying new cocktails of antibiotics and various respiratory therapies. Many of the same doctors and ICU nurses remembered me and had treated my mother and “visiting hours” rules and such were ignored, I came and went as I pleased and at any time of day or night and for as long as I wanted and because I treated them with respect and asked calm and intelligent questions and listened to what they said, they did the same for me. Since Johns Hopkins is a teaching hospital, I learned that the best time to find out what was going on was to be there for daily rounds. Typically visitors aren’t allowed during rounds but since I had such a good rapport with the staff, they never prevented me from coming in and never asked me to leave and I would quietly sit and listen and take notes, sometimes researching and later ask the primary ICU doc on duty questions to which she or she was always amazed and several times asked me if I was a medical professional, one time one of the docs telling me that I should be as I had a very good grasp and understanding of medical terminology and physiology and asked very good questions.
A rather funny story: one day I was standing at my father’s bedside, looking that the monitors, his blood ox, BP, heart rate and looking at his chart; when a tech came in to deliver a pint of blood. He handed me the bag of blood, to which I said, “Thanks but what am I supposed to do with this?” He said, “Aren’t’ you a doctor?” “No” I said, “I’m his daughter.” “Oh I’m so sorry, it’s just that I see you here all the time, and you seem to know what you’re looking at, I hmm, I just, hmm, I’m so sorry I thought you were one of his doctors”. “That’s OK.” I said as I was holding a cold bag of blood, “I’ll ring the Sara, the RN on duty and she’ll know what to do with this”.
But near the end of the 8th week, I finally asked chief of ICU, “How long do we keep doing this?” He said, “I’m so sorry, we’ve reached the end of all we can do. He’s slowly downing in his own lungs and nothing we’ve done or can do now is reversing this course. If you are telling me you want him removed from life support, I would medically, ethically and morally support that decision.” After talking to my brother, we agreed on removing him from life support. My father was not brain dead and after the respirator was removed, it took several hours for him to pass, every minute of which I was holding his hand and stroking his head and talking to him. He never responded to my hand or to my voice. His respiration slowly got shallower, his heart rate and blood pressure slowly decreased until he peacefully passed.
I was rather surprised that a week after my father’s funeral I came home from work to find a bouquet of flowers and sympathy card sitting at my front door. It was from several of the nurses and one of the doctors from the ICU.
I don’t think in either my mother’s or my father’s case, that we as a family or their doctors made the wrong or in any sense an immoral decision.
Now the family is faced with not only the shock of what happened, but also the rudeness of the doctors and hospital staff, while, on the other hand, there are people telling them there's still hope. So, it's understandable that Jahi's mother does not trust the "brain death" diagnosis or the hospital or any of the doctors and, instead, is clinging to that glimmer of hope.
My father fell victim to a hospital mistake. And, like the two of you, when my family believed there was just a glimmer of hope, we continued to fight. At some point, Jahi's family will have to accept what happened, but right now it should be understandable why they're not.
Like you, I am confident that everybody in the hospital was acting with genuine skill, caring and good faith. (Years later, there was one resident we encountered who had a "Why treat him, he's got nothing to live for" attitude toward my father, but that's a different, longer story.)
Anyhow, it must be pretty wretched when the deceased, like this Jahi, is very young, her death was unexpected, and you're not at all confident in the doctors' judgment.
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