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What should happen when "medical science" and "maternal instinct" give completely opposite answers to an important question?
While the case of Jahi McMath drew headlines around the world recently, irresolvable conflicts over "brain death" are thankfully fairly rare. But almost daily, in virtually every ICU, doctors and families grapple with difficult questions about what to do when "medical science" says a situation has become "hopeless", but family members refuse to let go of "hope", no matter what the doctors say.
A good answer to a truly difficult question can be very, very hard to find. Sometimes, maybe even impossible. When the question is hypothetical, then even if no answer is ever found, the search for an answer can be energizing, sometimes even a lot of fun.
But when the difficult question is utterly real...when a life that is hanging in the balance may depend on the answer...when the suffering of people involved is agonizing to see...when that suffering seems impossible to "fix" no matter what you decide to do...
When all these things are true, then an unsuccessful search for an answer -- not even a "good answer", maybe just "the best anyone can do" -- can be unbearably hard.
Imagine an ICU room.
And maybe not an "imaginary" one. There are over 6,000 ICU's in the U.S. today, more than 90,000 total ICU beds, and more than 21,000 pediatric ICU beds in which critically-ill children are being cared for. I suspect that this very morning there are at least several pediatric ICU rooms -- maybe even dozens -- very much like the one I will ask you to picture in your mind. And probably as many adult ICU rooms, too.
A young patient lies in the bed, connected to life-saving machines, but with severe brain damage from a tragic event. All of his doctors, based on state-of-the-art tests and decades of combined experience, know that "meaningful recovery" is not going to happen. Some say, cautiously, that the chance of recovery is "remotely unlikely." Others say it is truly "nil".
But the mother, even after listening as hard as she can to the doctors, even after trying as hard as she can to understand them and trust their knowledge and experience, cannot bring herself to do so. She knows they know more than she does. She knows they have tried everything possible. She sees that nothing has helped. But still. What if there is a miracle? What if her son is "the first"?
Every time the young patient shows any sign that he may be suffering -- moving an arm or leg in ways that suggest to staff that he is in pain, they cringe -- why are we doing this????
But every time Mom sees that same movement, her heart leaps in hope -- maybe he's waking up!
In the back room where the deeply-caring nurses, doctors, social workers, and pastoral care staff sometimes congregate, wishing they could do something to help Mom understand and accept the terrible "reality", words like "unrealistic" and "denial" and "it's so sad" intermingle. And since many of the nurses and doctors are parents themselves, sentences like "If this ever happened to my own son..." are often too painful even to complete.
Between sips from cups of strong but now-almost-bitter coffee left in the pot from overnight, everyone agrees on only one thing:
"There is no good answer."
And then the nurses return to their work, half-dreading the next time they need to go back into the room, where Mom keeps constant watch over her son. Even during the far-too-brief naps Mom sometimes can't help needing to take, on the cot the nurses brought her the very first night, Mom struggles to keep one eye open.
But the nurses and doctors are too professional to let themselves approach the door to the room only in dread. Their job is to help, and they are able to keep doing their job because they, too, refuse to let go of hope, although it is a different hope from Mom's. Their hope, against all odds, is that the next time they go in the room they will find a "miracle", one they have seen before. More than once. The miracle that Mom has finally realized that she has lost her child, and is willing to let the nurses, doctors, and social workers try to help her find a way to cope...
But days start to become weeks. Mom keeps her constant watch, unwilling to leave. And now, she even starts lashing out at anyone who suggests, as gently and compassionately as it is possible to do, that "maybe you need to go home and get some rest."
Only one thing becomes clearer and clearer: there truly is "no good answer."
I have no good answer, either.
And it got even harder when I opened a small, hand-addressed card on Wednesday, mailed to me at my office from somewhere in Utah. I opened it, and here is what I read (the writer has given me permission to share it):
Dear Dr. Forrow,I read your article in the Boston Globe, January 28, 2014. I then read other articles posted on your web sites. One discussed the family of Jahi McMath – “When is Someone Dead? Biology, Humanity, and the Law” – posted January 20, 2014. In one paragraph you quote a professor of bioethics commenting on her family’s views:“There is a word for this: crazy.”You take a much more humane attitude to the family in such an ordeal and that is why I am writing to you.In 1979 my family was in the same situation. My child had a cardiac arrest during an operation and the loss of oxygen caused brain damage. He was transferred to MGH PICU and to the care of Dr. David Todres.All tests showed that there was no brain function – the lack of oxygen had totally destroyed his brain. His body had ‘postured’ – rigid and contracted into a fetal position. His eyelids were contracted and his eyes were ‘bare’ showing his pupils were fixed. There was no response to any stimulus.Dr. Samuel Kim said such cases are best left to the instincts of the mother. My child remained in this state for weeks. Today he is out skiing while I write this. We stayed in touch with Todres and he was delighted to follow the progress over the years. We have overcome nearly all the ‘nevers’.With all best wishes.Sincerely,Joy S.
When I told a wise and deeply-experienced nurse about this card, she listened thoughtfully, but then said: "But that was 35 years ago, our tests are much better today."
Yes, they are.
But are we really sure they are right?
And even if they are, does that give us an "answer"?
These are very "big" questions, in multiple ways -- tremendously difficult, enormously complicated, but hugely important. We have to try to answer them, even when we find we can't.
But sometimes, while we are admitting that we have no good answer (yet) to one question, we can ask ourselves a different one. Maybe, as we approach the door to the ICU room, we can remind ourselves that we aren't responsible for solving every "big" question, or at least not right now.
Maybe, approaching the door, we can overcome some of our dread by leaving any big questions aside for the moment. Maybe instead we can ask ourselves some much smaller ones, maybe the only ones that really matter right now:
How can I help Mom know -- and maybe, at least briefly, feel -- how much I care?
How can I help Mom realize that she is never completely alone, that we are all "with her"?
How can I make sure Mom always at least knows one thing: how much we all would like to help?
My father learned in law school that asking the right question is often more important than giving the right answer.
He also learned that whenever answering a question will not help your client, a good lawyer will try to change the question.
The same thing is true for doctors and patients.
Dad's 87th birthday would have been last Thursday. In honor of his birthday, this blog entry will focus on questions -- questions that have come up recently in the care of patients I was consulted on, and different questions that turned out to be more useful. In each of the cases below, it seemed clear that even a "100% correct" answer to the initial question was not going to be very satisfying to anyone -- because it was not going to help us succeed in caring effectively for our patient (or her/his family).
Figuring out the right question, rather than just answering the one that has been posed, can be difficult, and almost always takes additional time up front. But that time is also usually very well invested, and often saves time later on. As Einstein said:
"If I had an hour to solve a problem I'd spend 55 minutes thinking about the problem and 5 minutes thinking about solutions."
For each of the cases below, the "correct answer" to the initial question was not going to leave any involved doctor or nurse satisfied with (much less proud of) their care. When the alternate (and much more difficult) question was posed, in each case the doctors and nurses found a path that they all agreed led to care for their patient/family that they could be proud of.
(Note: personal details about each patient and family have been altered, out of respect for their privacy.)
1. An elderly woman with pneumonia
An 87 year old woman with advanced dementia, unable even to recognize her husband and children, is nonetheless cared for by them, with tireless devotion and heroic effort, for years at home. She is hospitalized with pneumonia, requiring intubation and life support in the ICU. Ten days later she is successfully extubated and is moved to a general medical floor, where she is not only unable to communicate meaningfully with staff, but sometimes very agitated and disoriented, pulling out IV's. Her son, her legal health care proxy, insists that she be tied down if necessary to continue her life-saving antibiotics. He also says that long ago he promised his mother that he would never agree to a "DNR" order for her. Her attending physician believes that if the patient has a cardiac arrest, CPR with near-certainty would be unsuccessful, and even if it succeeds then the patient would at most have a prolonged return to the ICU before dying there. She therefore believes that doing CPR would be inhumane. The patient's nurses (who, if the patient has a cardiac arrest, would most likely be the ones to initiate CPR, quite possibly hearing/feeling the cracking of the patient's ribs as they did it) agree completely.
Initial Question: If the patient has a cardiac arrest, do we have to do CPR?
Correct (but not satisfying) Answer: No. (BIDMC policy supports the judgment of an attending physician who determines that a proposed intervention would be "ineffective" or "harmful". The patient or family member has a right to a second opinion, and/or transfer to another facility.)
Alternate Question: How can we help this son have confidence that his mother will be cared for the way she would have wanted, receiving "heroic efforts" of "intensive caring", including everything that might help, and omitting only things that would be inhumane to even try?
Answer: It took not only substantial time listening to and reassuring the son about all the things that were being done (and would be if needed); it also took repeated reinforcement by nurses in the room, proving in unmistakably-concrete ways that they were doing "everything possible" to help his mother.
2. A middle-aged man with a massive stroke
A 54 year old man is on a ventilator after a massive, totally-unexpected stroke. Tests prove beyond any doubt that his entire brain is now "dead", though his heart continues to beat, and the ventilator continues to "breathe" for him. But he is legally dead, and normally, after this is explained to the patient's family, after a brief period allowing family to say "goodbye", the ventilator is turned off. When the ICU doctor explains this to family gathered in the room, his daughter insists that a miracle could still happen, and refuses to agree to stopping the ventilator. Other family members seem able to accept the doctor's judgment.
Initial Question: "Can the ventilator be turned off?"
Correct (but not satisfying) Answer: Yes. (Massachusetts law is crystal-clear on this.)
Alternate Question: How can we make sure both that (a) the daughter knows her views are not only heard and understood, but also deeply respected; and (b) the ventilator is stopped within a reasonable period of time?
Answer: After introducing myself to the family gathered in the patient's ICU room, I met, at the daughter's request, alone with her. Over the next 30-40 minutes, spent mostly listening and sympathizing with her, I understood why she was having such a difficult time. In addition to the nightmare of what had happened to her father, I also listened to her tell me about her aunt, hose doctors years ago had confidently said was “brain dead”. Her uncle refused to agree to stopping life support, and three weeks later her aunt woke up, and lived another seven years. After I explained why in her father's case it was biologically impossible that the tests were wrong (one showed zero blood was even reaching his brain), we returned to her father's room, and the ICU staff offered her and the rest of the family "whatever time you need" to say whatever they wanted to say to their loved one, before the ventilator was turned off. Three hours after I had first been paged, the family (including the patient's daughter) left calmly, thanking us for our care.
3. A young woman with life-threatening substance abuse
A 32 year old woman is hospitalized with fevers and shaking chills from a dangerous blood infection ("sepsis"). Several years ago she had developed a life-threatening infection of one of her heart valves from using a dirty needle to inject heroin. Her life was saved by one of our cardiothoracic surgeons, who replaced the infected valve with a new artificial valve. Last year she was re-admitted, again with a life-threatening infection from another dirty needle. Almost no heart surgeon in the U.S. would do a second "valve replacement" for a patient with recurrent active drug use, because the odds of re-infection, recurrent valve failure, and death are so high. But after the patient's mother comes to him sobbing, pleading with him to give her daughter another chance since she will certainly die without the surgery, he agrees to do the operation, which is successful.
Soon afterward, she resumes her drug habit. When she is re-admitted to us she has three different life-threatening bacteria growing in her blood culture, and the same blood sample also tests positive for heroin. When she demands higher doses of narcotics for pain from a tooth abscess she is found to have, the resident refuses, and the patient angrily announces that she is going to leave. The resident consults our legal department, who says that without a court order (a "Section 35", which we do not have) we have no legal basis for forcing the patient to stay. Both the resident and infectious disease specialists believe that if she leaves before completing additional IV antibiotics, she will almost certainly die.
Initial Question: If she insists on leaving, do we have to let her go?
Correct (but not satisfying) Answer: Yes.
Alternate Question: What will it take to get her to choose to stay, without violating any physician's (or nurse's) professional standards and integrity (including about appropriate administration of narcotics)?
Answer: On further discussion, she insists that the fundamental issue for her is respect, and that if she doesn't feel respected she will leave. After identifying and agreeing to several concrete things that she says will prove to her that we respect her (not including any compromise about the increased narcotics she had been demanding), she stays voluntarily. Four days later, a court order for treatment is obtained, and after completing her course of IV antibiotics she is transferred to a locked inpatient substance abuse treatment program.
One thing that every one of these cases took was substantial time, and most of that time fell outside of the usual categories of medical diagnosis and treatment for which physicians are paid. And each of these cases raises serious broader issues about how our health system functions (and doesn't) today. I'll be writing more about both of those issues in future "Mortal Matters" entries.
No family should suffer through nightmares like the ones experienced by the families of Jahi McMath and Marlise Munoz.
The Munoz family's nightmare should never recur: the body of a dead woman in Texas, who everyone (her doctors, the hospital, and family) agreed met criteria for "brain death", was kept on "life support" because she was 14 weeks pregnant. The nightmare continued for two months, ending only when her husband sued the hospital in court for "“cruel and obscene mutilation” of a dead body, and the judge ruled in his favor, ordering that she be declared dead and removed from the "life support".
But variants of the McMath family's nightmare will almost certainly recur -- doctors insisting that a loved one is legally dead, but family finding it impossible to accept because her heart is still beating.
In the McMath case, a judge allowed the family to take custody her (legally-dead) body, her lungs still inflating and deflating on a functioning respirator, and her heart continuing to beat. Three weeks later, her family reportedly continues to believe she is alive.
I expect that after these highly-publicized cases, other families, when they are told that a loved one with a beating heart is dead, will try to prevent the ventilator from being stopped.
What, if anything, should we be doing differently when a patient is brain dead?
Should states reconsider their laws about when someone is legally dead?
Should state laws allow the possibility of an exception when a family disagrees with "brain death" criteria? New York and New Jersey laws already allow the possibility of exceptions on religious grounds -- should these be extended to all 50 states? Why should exceptions be limited to "religious" grounds?
Or should we instead use the recent publicity to strengthen public acceptance of the idea that a patient who is "brain dead" is, in fact, legally dead -- as the judges in both the McMath and Munoz cases affirmed?
In trying to answer these questions, we need to hear as many voices as possible of the general public -- people who may one day be sitting in shocked disbelief, as a loved one's doctor tries to explain that a patient whose heart continues to beat is actually dead.
How should we care for patients who are "brain dead"? How should we help, and care for, their families?
Please offer your thoughts in the "comments" section of this blog.
About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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