Opinion
ON MY MIND
Neil L. Schechter, MD Division of Pain Medicine, Department of Anesthesiology, Perioperative, and Pain Medicine, Boston Children’s Hospital, Boston, Massachusetts, and Department of Anesthesiology, Harvard Medical School, Boston, Massachusetts.
Corresponding Author: Neil L. Schechter, MD, Pain Treatment Service, Department of Anesthesiology, Perioperative, and Pain Medicine, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115 (neil .schechter@childrens .harvard.edu).
The Descent The glum 16-year-old girl sat disconsolately looking at her shoes, while her mother unfurled their story. Two years ago, seemingly out of the blue, her daughter reported that her abdomen hurt. She could not identify an antecedent event that triggered her pain nor could she discern a pattern to the variation in its intensity. Yet, her daughter’s pain was unremitting and disabling. Over time, the abdominal pain was further complicated by the development of a crushing headache, profound dizziness, and overwhelming fatigue. She became highly sensitive to almost all sensations—she could not tolerate light touch even from loved ones and the typical sounds of everyday life that occurred around her caused her to cover her ears. Even the light of day was too harsh for her eyes. These symptoms took their toll and she eventually stopped going to school and became increasingly socially disengaged. Her friends stopped calling, unable to understand her problems and consumed by their own, and she became increasingly isolated from the world. The flickering lights of the television bothered her eyes and the television sound had to be muted and watched solely with closed captioning. She stayed in bed most days and became weaker and weaker. Eventually, she became so incapacitated that she was unable to mount the stairs. Her parents were not strong enough to carry her and moved her into their first-floor bedroom, and she began sleeping in their bed. Throughout this ordeal, the family continually sought medical help and each physician whom they consulted, confronted with a preexisting extensive battery of uninformative investigative studies, subjected her to additional tests, hunting for rarer, more obscure diseases. When those test results came back as normal, some would refer her to even narrower subspecialists and others would state that there was nothing they could do for her, with the subtext that her problems were psychological. In the end, none of the 25 physicians whom she saw could offer an understandable explanation for her deterioration. The family took from these evaluations 2 competing messages—that their daughter’s problems were either extremely unusual or psychogenic. Either explanation further compounded their frustration and sense of hopelessness. Toward the end of our interview, her mother offered an anecdote, which seemed to encapsulate this family’s desperation. In their desire to enable their exhausted daughter to join them for meals at the kitchen table, they had purchased a large container of ketchup at a warehouse store, which they placed on the table in front of her to use as a head rest if she became too fatigued. During the summer, when corn was in season, they would hold the cob in front of her condimentsupported mandible and help her move it back and forth as she weakly nibbled on it.
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Two years of increasing incapacitation despite a normal physical examination and laboratory results, withdrawal from school and friends, hypersensitivity to everything, the closed-captioned television, sleeping with her parents, the relentless search for new physicians, the ketchup bottle—I could predict what many clinicians might say if this case was presented to them: “This mom and daughter have major psychological issues.” Yet, during our interview, the mother struck me as caring and concerned, without obvious mental illness, and no different than most loving parents. Her daughter was sullen and sad but not fundamentally different from many teenagers who were going to school, enjoying friends, and able to hold their head up at the dinner table. These types of problems often arrive at the doorstep of pediatric pain physicians. We typically encounter families who have been everywhere and tried everything, yet they still feel they have been offered no satisfactory explanation for their child’s suffering. Parents must daily contend with a child who is a shell of the one they remember prior to the onset of these complex symptoms. In our pain-management world, we tend to view these problems as resulting from the interaction of a complex stew of variables: biological vulnerabilities (eg, infections, inflammation, and trauma); genetic predispositions; a host of psychological forces (eg, personality type/temperament, previous experience, depression, anxiety, and family dynamics); and numerous social factors (eg, school and family pressures, parental response and modeling, and bullying). The nervous system becomes altered by these influences and grows hypersensitive in ways that are individual to each child.1 Therefore, it is a gross oversimplification and, in fact, incorrect to attribute these conditions solely to psychological factors; yet, this is often the default explanation implied by physicians who have exhausted their investigative repertoire. My supposition when I am confronted with a family like that of our patient is that their present situation has resulted from a series of unfortunate circumstances—altered pain perception and autonomic regulation in the child, whatever mixed messages we in the health care community have offered to the child and family, and a number of seemingly minor decisions— baby steps—made by the child’s parents that have cumulatively created the gradual descent into the personal hell in which the family finds itself. In our case, the parents allowed their daughter to stay home from school for a few days with the hope that rest would diminish her symptoms but this had the unfortunate consequence of creating a more stressful school reentry, fostering social withdrawal, and eventually yielding the need for tutors and homebound instruction. They responded to their daughter’s pain on movement by allowing her to stay in bed but that created further JAMA Pediatrics June 2014 Volume 168, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Purdue University User on 05/18/2015
509
Opinion On My Mind
deconditioning and made it more difficult and painful for her to move. They responded to her reports of stimulus overload by withdrawing stimuli (eg, the television and light in the room) when desensitization through exposure may have been more helpful. In their heartfelt desire to “fix” her, they responded to her continued symptoms with an endless search for new physicians and new treatments, which had the consequence of further medicalizing her symptoms. And in their desire to maintain her contact with the family, they ended up feeding and sleeping with her, thus reinforcing her helplessness. They made each decision with kindness in their hearts and the genuine desire to help but each one was unfortunately in the direction of further incapacitation. By the time of our evaluation, this family’s life had become completely derailed to the point of appearing unreasonable to an outside observer. However, to them, their decisions made perfect sense and were in tune with what they perceived were the desires of her physicians. Further complicating this situation is the tendency of families to surround themselves with others encountering similar problems whom they often perceive are the only ones who can apPublished Online: April 7, 2014. doi:10.1001/jamapediatrics.2013.5327.
510
preciate their experience. Often, these supportive relationships reinforce the unfortunate decisions that these families have made. It is easy for us to be judgmental, especially if we have not confronted similar situations with our own children, spouses, or parents. But most of the decisions made by the parents of our patients are good-faith attempts to relieve their children’s suffering and protect them from further pain, a deeply felt parental instinct. In fact, functional magnetic resonance imaging data confirm that the emotional dimension of pain is experienced as deeply by a loved one as by the individual in pain.2 Although this sort of patient and family may represent the extreme case, all of us in medicine confront individuals and families who tell us stories involving decisions they have made that leave us shaking our heads in wonder. It behooves us to assume that, with rare exception, these decisions, however seemingly irrational to us, were made with the best of intentions. Our clinical practice should be guided by the aphorism often attributed to Philo of Alexandria, a firstcentury philosopher: “Be kind—for everyone you meet is fighting a hard battle.”3
Conflict of Interest Disclosures: None reported.
1. Mayer EA, Bushnell MC, eds. Functional Pain Syndromes: Presentation and Pathophysiology. Seattle, Washington: IASP Press; 2009.
Additional Contributions: I thank the wonderful young woman and her family for allowing me to tell her story and the superb team who provided her care.
2. Singer T, Seymour B, O’Doherty J, Kaube H, Dolan RJ, Frith CD. Empathy for pain involves the affective but not sensory components of pain. Science. 2004;303(5661):1157-1162.
3. Be kind; everyone you meet is fighting a hard battle. Quote Investigator website. http://quoteinvestigator.com/2010/06/29/be-kind/. Accessed December 8, 2012.
JAMA Pediatrics June 2014 Volume 168, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Purdue University User on 05/18/2015
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ON MY MIND
Neil L. Schechter, MD Division of Pain Medicine, Department of Anesthesiology, Perioperative, and Pain Medicine, Boston Children’s Hospital, Boston, Massachusetts, and Department of Anesthesiology, Harvard Medical School, Boston, Massachusetts.
Corresponding Author: Neil L. Schechter, MD, Pain Treatment Service, Department of Anesthesiology, Perioperative, and Pain Medicine, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115 (neil .schechter@childrens .harvard.edu).
The Descent The glum 16-year-old girl sat disconsolately looking at her shoes, while her mother unfurled their story. Two years ago, seemingly out of the blue, her daughter reported that her abdomen hurt. She could not identify an antecedent event that triggered her pain nor could she discern a pattern to the variation in its intensity. Yet, her daughter’s pain was unremitting and disabling. Over time, the abdominal pain was further complicated by the development of a crushing headache, profound dizziness, and overwhelming fatigue. She became highly sensitive to almost all sensations—she could not tolerate light touch even from loved ones and the typical sounds of everyday life that occurred around her caused her to cover her ears. Even the light of day was too harsh for her eyes. These symptoms took their toll and she eventually stopped going to school and became increasingly socially disengaged. Her friends stopped calling, unable to understand her problems and consumed by their own, and she became increasingly isolated from the world. The flickering lights of the television bothered her eyes and the television sound had to be muted and watched solely with closed captioning. She stayed in bed most days and became weaker and weaker. Eventually, she became so incapacitated that she was unable to mount the stairs. Her parents were not strong enough to carry her and moved her into their first-floor bedroom, and she began sleeping in their bed. Throughout this ordeal, the family continually sought medical help and each physician whom they consulted, confronted with a preexisting extensive battery of uninformative investigative studies, subjected her to additional tests, hunting for rarer, more obscure diseases. When those test results came back as normal, some would refer her to even narrower subspecialists and others would state that there was nothing they could do for her, with the subtext that her problems were psychological. In the end, none of the 25 physicians whom she saw could offer an understandable explanation for her deterioration. The family took from these evaluations 2 competing messages—that their daughter’s problems were either extremely unusual or psychogenic. Either explanation further compounded their frustration and sense of hopelessness. Toward the end of our interview, her mother offered an anecdote, which seemed to encapsulate this family’s desperation. In their desire to enable their exhausted daughter to join them for meals at the kitchen table, they had purchased a large container of ketchup at a warehouse store, which they placed on the table in front of her to use as a head rest if she became too fatigued. During the summer, when corn was in season, they would hold the cob in front of her condimentsupported mandible and help her move it back and forth as she weakly nibbled on it.
jamapediatrics.com
Two years of increasing incapacitation despite a normal physical examination and laboratory results, withdrawal from school and friends, hypersensitivity to everything, the closed-captioned television, sleeping with her parents, the relentless search for new physicians, the ketchup bottle—I could predict what many clinicians might say if this case was presented to them: “This mom and daughter have major psychological issues.” Yet, during our interview, the mother struck me as caring and concerned, without obvious mental illness, and no different than most loving parents. Her daughter was sullen and sad but not fundamentally different from many teenagers who were going to school, enjoying friends, and able to hold their head up at the dinner table. These types of problems often arrive at the doorstep of pediatric pain physicians. We typically encounter families who have been everywhere and tried everything, yet they still feel they have been offered no satisfactory explanation for their child’s suffering. Parents must daily contend with a child who is a shell of the one they remember prior to the onset of these complex symptoms. In our pain-management world, we tend to view these problems as resulting from the interaction of a complex stew of variables: biological vulnerabilities (eg, infections, inflammation, and trauma); genetic predispositions; a host of psychological forces (eg, personality type/temperament, previous experience, depression, anxiety, and family dynamics); and numerous social factors (eg, school and family pressures, parental response and modeling, and bullying). The nervous system becomes altered by these influences and grows hypersensitive in ways that are individual to each child.1 Therefore, it is a gross oversimplification and, in fact, incorrect to attribute these conditions solely to psychological factors; yet, this is often the default explanation implied by physicians who have exhausted their investigative repertoire. My supposition when I am confronted with a family like that of our patient is that their present situation has resulted from a series of unfortunate circumstances—altered pain perception and autonomic regulation in the child, whatever mixed messages we in the health care community have offered to the child and family, and a number of seemingly minor decisions— baby steps—made by the child’s parents that have cumulatively created the gradual descent into the personal hell in which the family finds itself. In our case, the parents allowed their daughter to stay home from school for a few days with the hope that rest would diminish her symptoms but this had the unfortunate consequence of creating a more stressful school reentry, fostering social withdrawal, and eventually yielding the need for tutors and homebound instruction. They responded to their daughter’s pain on movement by allowing her to stay in bed but that created further JAMA Pediatrics June 2014 Volume 168, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Purdue University User on 05/18/2015
509
Opinion On My Mind
deconditioning and made it more difficult and painful for her to move. They responded to her reports of stimulus overload by withdrawing stimuli (eg, the television and light in the room) when desensitization through exposure may have been more helpful. In their heartfelt desire to “fix” her, they responded to her continued symptoms with an endless search for new physicians and new treatments, which had the consequence of further medicalizing her symptoms. And in their desire to maintain her contact with the family, they ended up feeding and sleeping with her, thus reinforcing her helplessness. They made each decision with kindness in their hearts and the genuine desire to help but each one was unfortunately in the direction of further incapacitation. By the time of our evaluation, this family’s life had become completely derailed to the point of appearing unreasonable to an outside observer. However, to them, their decisions made perfect sense and were in tune with what they perceived were the desires of her physicians. Further complicating this situation is the tendency of families to surround themselves with others encountering similar problems whom they often perceive are the only ones who can apPublished Online: April 7, 2014. doi:10.1001/jamapediatrics.2013.5327.
510
preciate their experience. Often, these supportive relationships reinforce the unfortunate decisions that these families have made. It is easy for us to be judgmental, especially if we have not confronted similar situations with our own children, spouses, or parents. But most of the decisions made by the parents of our patients are good-faith attempts to relieve their children’s suffering and protect them from further pain, a deeply felt parental instinct. In fact, functional magnetic resonance imaging data confirm that the emotional dimension of pain is experienced as deeply by a loved one as by the individual in pain.2 Although this sort of patient and family may represent the extreme case, all of us in medicine confront individuals and families who tell us stories involving decisions they have made that leave us shaking our heads in wonder. It behooves us to assume that, with rare exception, these decisions, however seemingly irrational to us, were made with the best of intentions. Our clinical practice should be guided by the aphorism often attributed to Philo of Alexandria, a firstcentury philosopher: “Be kind—for everyone you meet is fighting a hard battle.”3
Conflict of Interest Disclosures: None reported.
1. Mayer EA, Bushnell MC, eds. Functional Pain Syndromes: Presentation and Pathophysiology. Seattle, Washington: IASP Press; 2009.
Additional Contributions: I thank the wonderful young woman and her family for allowing me to tell her story and the superb team who provided her care.
2. Singer T, Seymour B, O’Doherty J, Kaube H, Dolan RJ, Frith CD. Empathy for pain involves the affective but not sensory components of pain. Science. 2004;303(5661):1157-1162.
3. Be kind; everyone you meet is fighting a hard battle. Quote Investigator website. http://quoteinvestigator.com/2010/06/29/be-kind/. Accessed December 8, 2012.
JAMA Pediatrics June 2014 Volume 168, Number 6
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Purdue University User on 05/18/2015
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