Opinion
A PIECE OF MY MIND Herb Lee, MD Department of Anesthesiology, JFK Medical Center, Edison, New Jersey.
Corresponding Author: Herb Lee, MD ([email protected]). Section Editor: Roxanne K. Young, Associate Senior Editor.
Decisions There are no events but thoughts and the heart’s hard turning, the heart’s slow learning where to love and whom. The rest is merely gossip and tales for other times. Annie Dillard, Holy the Firm
It’s the same routine every time. I hesitate a moment before I enter my son’s room to go over his homework. By now, Richard has had his afternoon nap and should be rested. I remind myself I must be patient, that what happened was not his fault and that I must help him any way I can. This is the aftermath of a traumatic brain injury sustained a brief 3 years earlier, when Richard was 10. The traumatic brain injury was actually a spontaneous rupture of an arteriovenous malformation (AVM) deep in the brain, in the thalamus, a region with connections to virtually all parts of the cerebral cortex. Nothing in the events of that Sunday could have predicted the wrenching consequences that followed. We had returned home from a relaxing buffet dinner. We even had time to purchase a mattressfromSleepy’sonthewayback.Wewatchedtelevision; we went over spelling words. Richard was already in bed when it happened. While I was brushing the teeth of my youngest in the upstairs bathroom, I hear Richard’s voice downstairs,loud,uncharacteristicallydefiant,complaining of a headache. His mother gave him an icepack to reassure him. His response was a shattering, unrecognizably loud declarationofhisheadachepain.Hestompedbackupstairs tohisbedroom.Ileftthebabyinthebathroomandfollowed Richard.IlookeddesperatelyatRichardashelayonhisbed, wishing for some miracle to be able to see if he was bleeding inside his head. The last thing Richard said to me was, “Dad, you’re a doctor. Please do something.” I watched, unable to believe what I was seeing. My mind started to race as I was talking to the on call nurse from our pediatrician’s office. As I watched, Richard slipped into unconsciousness, his gaze deviating to the left, his legs moving as if marching. Clinical discipline returned and I became aware of precious seconds slipping away. My mind flew ahead, critically aware of the little I can do at home and the yawning gap separating us from the closest regional medical center. The 911 response was painfully slow, during which Richard’s breathing grew fainter and fainter and then stopped. I tried rousing him. No effect. I gave him a breath. Hethentookinabreathspontaneouslybutstoppedagain. I gave him several more breaths. Soon I was breathing for him continuously. A strange mixture of shock and detachment followed as I accompanied my son in the ambulance to the emergency department. It took 40 minutes togetfromhisbedtotheEDbay.Still,ourarrivalwaswithin trauma’s “golden hour” criteria, where interventions have the best chance of succeeding. Even better, I had worked in this hospital and I recognized some of the faces. In a conversational tone I gave the history while a nurse anesthetist I know performed the intubation.
jama.com
The CT scan of the head told the story. Blood filled the lateral ventricles. Whatever feelings of fellowship I had before evaporated as I felt suddenly alone, in the darkened scanroom,withmyson,nowunconscious,beyondmyhelp. My wife later joined me in the scan room. She heard the news about the bleed from me. Then we were moved tothepediatricintensivecareunit(PICU)wherewewaited for a call from the neurosurgeon. I took the call. It was clear that some threshold had just been crossed and that we shouldbepreparedforunimaginableconsequences.Somberly, he said that it was very bad; the ventricles were full of blood and he was not sure if what he was going to do would help. The flurry of events, which carried us downstream to this point, suddenly stopped. It was well beyond the golden hour when the neurosurgeon arrived. When he inserted the ventriculostomy tube he noted that the pressure inside Richard’s head was high. Afterwards, I collected Richard’s hair and noted the thick and velvety cool feel of it, and his soft as yet unblemished skin, the result of protective parenting. I looked at what was left in this horrific scene of lines and drapes and opened surgical kits. The neurosurgeon and the PICU attending physicians who reiterated his doubts about recovery reduced a lifetime to the here and now. My wife and I looked at each other. One moment I’m wondering how manydayswillRichardbeabsentfromschool,andthenext I’m thinking, what am I going to tell the other children? As a physician, I understand and respect the discipline and dedication needed to make life-and-death decisions. As a parent, however, it was unacceptable for me to give up my child, my firstborn, after raising him with love and care as if it all didn’t matter anymore. Fortunately, the life-saving grace of the nurses continued on undaunted. The PICU team gave compassionate and appropriate care. Friends, family, and members of the church community were hopeful and kept us strong and moving even as Richard was kept in a coma, his brain too unstable to tolerate any stimulation. As Richard lay in critical condition with tubes, monitors, and pumps engaged in a pitched battle for stability, we made our first therapeutic decision, a decision that will commit us to a course of secondary and tertiary decisions. After making the primary choice of a surgical or nonsurgical course of therapy, we are carried by a current of inexorability, traveling farther and farther out to more subsequent choices. This current takes us out to more and more unfamiliar territory, each choice providing less and less benefit and more and more risk. For this is a subtractive economy, and every choice only takes away bits of our identity, our potential, our intellect. The trick is to find the path that takes the least away, a path whose ultimate course and cost is unknown. The first decision was easy to make despite its significance. A nonsurgical intervention was the obvious choice sincethemorbidityforsurgerydeepinsidethebrainishigh. JAMA April 23/30, 2014 Volume 311, Number 16
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a SUNY Binghamton User on 05/13/2015
1613
Opinion A Piece of My Mind
Most neurosurgeons we talked with acknowledged the risk of operating in the thalamus, a center that controls specific regions of the cortex, and an injury there would be readily apparent. Surgery here would be “dicey.” We were already reeling from the initial injury. Further injury to remainingviablebraintissueduringsurgerytoremovetheAVMseemed unthinkable. As a consequence, we chose gamma knife surgery, which uses radiation energy to cause changes in the AVM to close off its blood supply,renderingitharmless.Thebeautyandwitcheryofthistechnique is its magical efficacy and its insidious nontrivial side effects that may manifest years after exposure. Risk assessment is difficult because we cannot predict how well it would work in a particular AVM and “outcomes have not been well studied.”1 Our next decision was to choose the physicians who would definetheanatomyoftheAVMandperformthehealinggammaknifeprocedure. We left the PICU one cold December morning and arrived in New York City with the perilous charge of finding a safe passage back to the life we once knew. The physicians we met were all empathetic, understanding,andpatientwithourquestions.Atthatcriticaltime,that was all they could do and that was all we could ask for. So we listened; it became apparent with time that the best physician was not the one most recognized, nor the most acclaimed, nor the most popular. It was the one who would make Richard and not the therapy his primary consideration. Reputation was of secondary importance. The difference isthis:thebestphysiciantreatedtechnologywiththefamiliarityofownership;butRichard’sdoctortreateditwithrestraintandrespect.Rightly or wrongly, I picked the latter, the one most balanced between daring and caution. Everything else, from other specialists to the institution at which the gamma surgery took place, was based on this one decision. Today I still stand by my decision. Not all decisions were painless. I have anguished over the decision to let Richard undergo another ventriculostomy tube insertion, again invading an organ that nature has so painstakingly defended. Because we were in the city, I had to give consent over the phone. It was all the more painful because the procedure took place while we were away. Guiltfloodedmeforpermittingthistobeperformedbyanonphysician. Then I was awash in anger when I saw the blood that had been left to dry on Richard’s scalp when we returned. It was many days later when Isawthathisventriculostomytubewasfunctioningandthattherewere no obvious complications that my rancor began to subside. My decisions were not always correct. The later insertion of a ventriculoperitoneal shunt turned out to be a necessary procedure, one that I initially resisted. I had hoped for a spontaneous return of the brain’s ability to eliminate excess cerebrospinal fluid and forgo yet another invasion into my son’s brain. Having a shunt also meant risking bacterial colonization and subsequent operations to clean up the infection. But through the generosity of a pediatric neurosurgeon, I saw that fluid had started to force itself into brain tissue. After the surgery, Richard’s vision cleared, his eyes returned to their natural alignment, and he awoke. His recovery advanced day by day. Soon he was able to walk to his therapy sessions. There were other less critical but necessary decisions to be made during his rehabilitation. Some were logistical and concerned when Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for the Disclosure of Potential Conflicts of Interest and none were reported.
1614
and how we could get Richard to his therapy. Others were “political” and concerned whether Richard should be mainstreamed into regular classes or classified, permitting him access to public funds earmarked for traumatic brain injury patients, but at the same time creating self-esteem issues. The last set of decisions are personal and constitute the majority of our day-to-day interactions. Each day requires conscious efforts to curb my impatience and full-steam-ahead approach to homework assignments and to temper my expectations with reality. Somehow I forget that it was not too long ago when he was strapped to a wheelchair and had barely been able to lift a spoon, when it was a triumph for him to climb up one flight of stairs. Yet after a day of commitments and hospital patient care, I find my strength depleted, my patience short, and my frustration high. Recriminations and regrets recur as I try to help with homework but then lose my temper when he still doesn’t “get it” after I have explained an answer to a problem and verified with him that he “understands.” Yet after visiting his teacher on back-to-school night and hearing praise for Richard’s understanding of math concepts and computational skills and his eagerness to answer, I am humbled and chastened. I remind myself that while life exists, everything is possible. As Richard grows into his own, his journeys and accomplishments would take him down paths that are beyond my own. In the meantime, each math problem we hammer out at home requires a review of basic assumptions before a problem can be solved. It’s as if I am teaching a computer to solve a problem, requiring redefinition of acceptable parameters, rules of operation, and restatement of basic assumptions that are normally taken for granted when solvingaseriesofsimilarproblems.Imustdecidehowmuchtoexpectfrom him and how much to let go. To those of you who have asked me, “How is your son doing?” this is my answer: He is a work in progress, working through each step with us toward what he was meant to become. He is also a miracle and it is enough that he is here. I want to be able to provide the exact help he needs and have the patience to recognize that he is trying. Too often I falter. As for me, I am a seeker, looking for the best way to help, reevaluating my decisions and assumptions, and gathering information, mindful of the paradoxical effect of helping too much and distracting those most able to provide care from doing their best. In truth, decisions that havebeenmadeanddecisionstobemadepresumeoneunderlyingfundamental decision: never give up, especially when it’s one of your own. NEVER. I have learned that I make mistakes and that continuing reassessment is necessary to recognize those mistakes. Help from others may be a necessary step toward arriving at the right decision. We have traveled far. I thank those who have helped us medically and supported us spiritually. One more major decision lies ahead and thatisdecidingwhetheranothercourseofgammaradiotherapyisworth the risk. So, for the moment, homework duty does not seem so bad. I try not to think about the decisions I will have to make in the future that put all that we have accomplished on the line, or whether I would be readytointerveneduringthenextemergency.AsIgetreadyforanother day of homework, I begin cautiously, expectantly.
Acknowledgment: I would like to thank my son Richard, who gave me his permission to write about his brain injury and his journey home. I apologize for the use of any outdated terms; this essay was written in 2005 and submitted in its entirety with the exception of few explanatory remarks.
1. Pollock BE, Gorman DA, Brown PD. Radiosurgery for arteriovenous malformations of the basal ganglia, thalamus, and brainstem. J Neurosurg. 2004;100(2):210-214.
JAMA April 23/30, 2014 Volume 311, Number 16
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a SUNY Binghamton User on 05/13/2015
jama.com
A PIECE OF MY MIND Herb Lee, MD Department of Anesthesiology, JFK Medical Center, Edison, New Jersey.
Corresponding Author: Herb Lee, MD ([email protected]). Section Editor: Roxanne K. Young, Associate Senior Editor.
Decisions There are no events but thoughts and the heart’s hard turning, the heart’s slow learning where to love and whom. The rest is merely gossip and tales for other times. Annie Dillard, Holy the Firm
It’s the same routine every time. I hesitate a moment before I enter my son’s room to go over his homework. By now, Richard has had his afternoon nap and should be rested. I remind myself I must be patient, that what happened was not his fault and that I must help him any way I can. This is the aftermath of a traumatic brain injury sustained a brief 3 years earlier, when Richard was 10. The traumatic brain injury was actually a spontaneous rupture of an arteriovenous malformation (AVM) deep in the brain, in the thalamus, a region with connections to virtually all parts of the cerebral cortex. Nothing in the events of that Sunday could have predicted the wrenching consequences that followed. We had returned home from a relaxing buffet dinner. We even had time to purchase a mattressfromSleepy’sonthewayback.Wewatchedtelevision; we went over spelling words. Richard was already in bed when it happened. While I was brushing the teeth of my youngest in the upstairs bathroom, I hear Richard’s voice downstairs,loud,uncharacteristicallydefiant,complaining of a headache. His mother gave him an icepack to reassure him. His response was a shattering, unrecognizably loud declarationofhisheadachepain.Hestompedbackupstairs tohisbedroom.Ileftthebabyinthebathroomandfollowed Richard.IlookeddesperatelyatRichardashelayonhisbed, wishing for some miracle to be able to see if he was bleeding inside his head. The last thing Richard said to me was, “Dad, you’re a doctor. Please do something.” I watched, unable to believe what I was seeing. My mind started to race as I was talking to the on call nurse from our pediatrician’s office. As I watched, Richard slipped into unconsciousness, his gaze deviating to the left, his legs moving as if marching. Clinical discipline returned and I became aware of precious seconds slipping away. My mind flew ahead, critically aware of the little I can do at home and the yawning gap separating us from the closest regional medical center. The 911 response was painfully slow, during which Richard’s breathing grew fainter and fainter and then stopped. I tried rousing him. No effect. I gave him a breath. Hethentookinabreathspontaneouslybutstoppedagain. I gave him several more breaths. Soon I was breathing for him continuously. A strange mixture of shock and detachment followed as I accompanied my son in the ambulance to the emergency department. It took 40 minutes togetfromhisbedtotheEDbay.Still,ourarrivalwaswithin trauma’s “golden hour” criteria, where interventions have the best chance of succeeding. Even better, I had worked in this hospital and I recognized some of the faces. In a conversational tone I gave the history while a nurse anesthetist I know performed the intubation.
jama.com
The CT scan of the head told the story. Blood filled the lateral ventricles. Whatever feelings of fellowship I had before evaporated as I felt suddenly alone, in the darkened scanroom,withmyson,nowunconscious,beyondmyhelp. My wife later joined me in the scan room. She heard the news about the bleed from me. Then we were moved tothepediatricintensivecareunit(PICU)wherewewaited for a call from the neurosurgeon. I took the call. It was clear that some threshold had just been crossed and that we shouldbepreparedforunimaginableconsequences.Somberly, he said that it was very bad; the ventricles were full of blood and he was not sure if what he was going to do would help. The flurry of events, which carried us downstream to this point, suddenly stopped. It was well beyond the golden hour when the neurosurgeon arrived. When he inserted the ventriculostomy tube he noted that the pressure inside Richard’s head was high. Afterwards, I collected Richard’s hair and noted the thick and velvety cool feel of it, and his soft as yet unblemished skin, the result of protective parenting. I looked at what was left in this horrific scene of lines and drapes and opened surgical kits. The neurosurgeon and the PICU attending physicians who reiterated his doubts about recovery reduced a lifetime to the here and now. My wife and I looked at each other. One moment I’m wondering how manydayswillRichardbeabsentfromschool,andthenext I’m thinking, what am I going to tell the other children? As a physician, I understand and respect the discipline and dedication needed to make life-and-death decisions. As a parent, however, it was unacceptable for me to give up my child, my firstborn, after raising him with love and care as if it all didn’t matter anymore. Fortunately, the life-saving grace of the nurses continued on undaunted. The PICU team gave compassionate and appropriate care. Friends, family, and members of the church community were hopeful and kept us strong and moving even as Richard was kept in a coma, his brain too unstable to tolerate any stimulation. As Richard lay in critical condition with tubes, monitors, and pumps engaged in a pitched battle for stability, we made our first therapeutic decision, a decision that will commit us to a course of secondary and tertiary decisions. After making the primary choice of a surgical or nonsurgical course of therapy, we are carried by a current of inexorability, traveling farther and farther out to more subsequent choices. This current takes us out to more and more unfamiliar territory, each choice providing less and less benefit and more and more risk. For this is a subtractive economy, and every choice only takes away bits of our identity, our potential, our intellect. The trick is to find the path that takes the least away, a path whose ultimate course and cost is unknown. The first decision was easy to make despite its significance. A nonsurgical intervention was the obvious choice sincethemorbidityforsurgerydeepinsidethebrainishigh. JAMA April 23/30, 2014 Volume 311, Number 16
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a SUNY Binghamton User on 05/13/2015
1613
Opinion A Piece of My Mind
Most neurosurgeons we talked with acknowledged the risk of operating in the thalamus, a center that controls specific regions of the cortex, and an injury there would be readily apparent. Surgery here would be “dicey.” We were already reeling from the initial injury. Further injury to remainingviablebraintissueduringsurgerytoremovetheAVMseemed unthinkable. As a consequence, we chose gamma knife surgery, which uses radiation energy to cause changes in the AVM to close off its blood supply,renderingitharmless.Thebeautyandwitcheryofthistechnique is its magical efficacy and its insidious nontrivial side effects that may manifest years after exposure. Risk assessment is difficult because we cannot predict how well it would work in a particular AVM and “outcomes have not been well studied.”1 Our next decision was to choose the physicians who would definetheanatomyoftheAVMandperformthehealinggammaknifeprocedure. We left the PICU one cold December morning and arrived in New York City with the perilous charge of finding a safe passage back to the life we once knew. The physicians we met were all empathetic, understanding,andpatientwithourquestions.Atthatcriticaltime,that was all they could do and that was all we could ask for. So we listened; it became apparent with time that the best physician was not the one most recognized, nor the most acclaimed, nor the most popular. It was the one who would make Richard and not the therapy his primary consideration. Reputation was of secondary importance. The difference isthis:thebestphysiciantreatedtechnologywiththefamiliarityofownership;butRichard’sdoctortreateditwithrestraintandrespect.Rightly or wrongly, I picked the latter, the one most balanced between daring and caution. Everything else, from other specialists to the institution at which the gamma surgery took place, was based on this one decision. Today I still stand by my decision. Not all decisions were painless. I have anguished over the decision to let Richard undergo another ventriculostomy tube insertion, again invading an organ that nature has so painstakingly defended. Because we were in the city, I had to give consent over the phone. It was all the more painful because the procedure took place while we were away. Guiltfloodedmeforpermittingthistobeperformedbyanonphysician. Then I was awash in anger when I saw the blood that had been left to dry on Richard’s scalp when we returned. It was many days later when Isawthathisventriculostomytubewasfunctioningandthattherewere no obvious complications that my rancor began to subside. My decisions were not always correct. The later insertion of a ventriculoperitoneal shunt turned out to be a necessary procedure, one that I initially resisted. I had hoped for a spontaneous return of the brain’s ability to eliminate excess cerebrospinal fluid and forgo yet another invasion into my son’s brain. Having a shunt also meant risking bacterial colonization and subsequent operations to clean up the infection. But through the generosity of a pediatric neurosurgeon, I saw that fluid had started to force itself into brain tissue. After the surgery, Richard’s vision cleared, his eyes returned to their natural alignment, and he awoke. His recovery advanced day by day. Soon he was able to walk to his therapy sessions. There were other less critical but necessary decisions to be made during his rehabilitation. Some were logistical and concerned when Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for the Disclosure of Potential Conflicts of Interest and none were reported.
1614
and how we could get Richard to his therapy. Others were “political” and concerned whether Richard should be mainstreamed into regular classes or classified, permitting him access to public funds earmarked for traumatic brain injury patients, but at the same time creating self-esteem issues. The last set of decisions are personal and constitute the majority of our day-to-day interactions. Each day requires conscious efforts to curb my impatience and full-steam-ahead approach to homework assignments and to temper my expectations with reality. Somehow I forget that it was not too long ago when he was strapped to a wheelchair and had barely been able to lift a spoon, when it was a triumph for him to climb up one flight of stairs. Yet after a day of commitments and hospital patient care, I find my strength depleted, my patience short, and my frustration high. Recriminations and regrets recur as I try to help with homework but then lose my temper when he still doesn’t “get it” after I have explained an answer to a problem and verified with him that he “understands.” Yet after visiting his teacher on back-to-school night and hearing praise for Richard’s understanding of math concepts and computational skills and his eagerness to answer, I am humbled and chastened. I remind myself that while life exists, everything is possible. As Richard grows into his own, his journeys and accomplishments would take him down paths that are beyond my own. In the meantime, each math problem we hammer out at home requires a review of basic assumptions before a problem can be solved. It’s as if I am teaching a computer to solve a problem, requiring redefinition of acceptable parameters, rules of operation, and restatement of basic assumptions that are normally taken for granted when solvingaseriesofsimilarproblems.Imustdecidehowmuchtoexpectfrom him and how much to let go. To those of you who have asked me, “How is your son doing?” this is my answer: He is a work in progress, working through each step with us toward what he was meant to become. He is also a miracle and it is enough that he is here. I want to be able to provide the exact help he needs and have the patience to recognize that he is trying. Too often I falter. As for me, I am a seeker, looking for the best way to help, reevaluating my decisions and assumptions, and gathering information, mindful of the paradoxical effect of helping too much and distracting those most able to provide care from doing their best. In truth, decisions that havebeenmadeanddecisionstobemadepresumeoneunderlyingfundamental decision: never give up, especially when it’s one of your own. NEVER. I have learned that I make mistakes and that continuing reassessment is necessary to recognize those mistakes. Help from others may be a necessary step toward arriving at the right decision. We have traveled far. I thank those who have helped us medically and supported us spiritually. One more major decision lies ahead and thatisdecidingwhetheranothercourseofgammaradiotherapyisworth the risk. So, for the moment, homework duty does not seem so bad. I try not to think about the decisions I will have to make in the future that put all that we have accomplished on the line, or whether I would be readytointerveneduringthenextemergency.AsIgetreadyforanother day of homework, I begin cautiously, expectantly.
Acknowledgment: I would like to thank my son Richard, who gave me his permission to write about his brain injury and his journey home. I apologize for the use of any outdated terms; this essay was written in 2005 and submitted in its entirety with the exception of few explanatory remarks.
1. Pollock BE, Gorman DA, Brown PD. Radiosurgery for arteriovenous malformations of the basal ganglia, thalamus, and brainstem. J Neurosurg. 2004;100(2):210-214.
JAMA April 23/30, 2014 Volume 311, Number 16
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a SUNY Binghamton User on 05/13/2015
jama.com
