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Posted by Dr. Lachlan Forrow February 16, 2014 07:07 PM
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?
The author is solely responsible for the content.
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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