- Email: [email protected]
Sending flowers
Patient Education and Counseling 65 (2007) 277–278 www.elsevier.com/locate/pateducou
Reflective practice
Sending flowers Ruby Roy * Department of Pediatrics, Loyola University Medical Center, 2160 South First Avenue, Maywood, IL 60153, USA Received 1 March 2006; received in revised form 23 July 2006; accepted 14 November 2006
Keywords: Patient story; Narrative; Physician–patient relationship; Service; Death; Meaning; Futile care; Medical education; Teaching; Patient funeral; Premature baby
True story about a patient death. I (the physician) sent flowers to funeral and in return got a letter that taught me about healing, service and the meaning of my work. I was a resident at a large Children’s Hospital in the early nineties, when residency training was heavily weighted toward in-hospital, emergency and intensive care. I could calculate a dopamine drip in my sleep, and certainly valued that skill more than, for example, the counseling of families in the well baby clinic. My education, my life, my sense of service was all about intervention to ‘‘fix’’ medical problems. I valued knowledge, competence, and decisiveness. My role models were brilliant, quick-thinking intensive care physicians who were highly dedicated toward saving lives. If there was a solution, they would find it. If there was not a solution, they would make one. In my vision of medical care, there was always an answer, as long as you were smart enough. Jake was an 8-week premature baby. Born at a private hospital with a state of the art neonatal intensive care unit. He had a full team in the delivery room ready for him: neonatal residents, an attending, a nurse and a respiratory therapist. He received a lifesaving infusion of surfactant directly into his lungs via an endotracheal tube and was hooked up to a respirator within the first hour of life. He weighed 1200 g—a little less than three pounds. His survival potential under such circumstances was over 95%. I did not meet him at birth. I was working at the Children’s Hospital where he was transferred after 3 days of not doing as expected. He did not respond to the ventilator
* Tel.: +1 708 327 9095. E-mail address: [email protected].
well. He was transferred to our hospital for a bronchoscopy, during which, they discovered that the source of his respiratory problems was a technical failure. A small piece of plastic from the ventilator had broken off and lodged in his trachea. The rigid bronchoscope used in removal of the plastic was too large for his tiny airway and caused a tracheal tear as the plastic was removed. He underwent an emergent surgical repair of his trachea. This is when I met him and his family—after this surgery. His parents were a suburban couple that lived more than an hour away, but still visited on a daily basis. They were, (as we judge such families) ‘‘appropriately concerned’’. The mother would sit by the bedside and reach her hand into the incubator and stroke his forehead gently with one finger. She did not ask a lot of questions, perhaps overwhelmed as we were by the magnitude of his problems. Multiple different teams including neonatology, surgery and otolaryngology rounded on him every day. They all gave her a different prognosis: he was ‘‘out of the zone’’ where any one of us could predict how he was going to do. I took care of him for 3 weeks, until the end of my month. He had a rocky clinical course, with multiple complications from his surgeries and his prematurity. It seemed like every time I was on call, he critically decompensated. I called his family multiple times to tell them ‘‘this is it, you had better come in because it does not look like he will make it this time’’. For some reason, he survived for me. I did not get personally close to the family—I was too busy and considered myself too ‘‘professional’’ to get emotionally involved. But I could not deny that I was extremely personally involved with Jake. I was angry and frustrated. He defied our sophisticated medical knowledge— and it was a failure of our technology that put him in such a
0738-3991/$ – see front matter # 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2006.11.002
278
R. Roy / Patient Education and Counseling 65 (2007) 277–278
critical state. At the end of my month, I had the sinking suspicion that he would not make it—that my work was futile. Although I did not speak of it, I felt acutely for this mother’s emotional roller coaster between anxiety and hope. Was it fair to his family to put them through this? I was certain that there was no value in a relationship with a baby hooked up to a ventilator with multiple tubes and lines. I was certain that there could be no sense of service or fulfillment in the care of a baby who does not get better. I was certain about so many things in those days. He did die, several weeks later. Because going to his funeral would have been unheard of in those days, I sent flowers. Several months later I received a letter from the family: Dear Ruby, We gratefully appreciate your sending the dozen white roses following Jake’s death. Thank you for thinking of us in our time of loss and grief. Moreover, we want to convey our heartfelt thanks for the very delicate, loving and attentive care you gave our Jake in the tenuous weeks you spent with him. We know Jake was a pretty sick child, and that he was battling long odds from the onset, but after all he did overcome and conquer, we really thought he was going to make it. Even Dr. G—liked the ‘‘ intangible factor.’’ In the end, he could not beat the lung disease and airway narrowing caused by the surgeries to repair the tracheal tear. Ruby, we still have a hard time, not only in the loss of
our little boy, but in the way it happened—the ‘‘freak’’ lodging of the piece of plastic. We enjoyed a wonderful, unique 6 weeks with our little Jake. We would rather have had 6 weeks with him in the fashion we did than none at all, and we will be forever grateful for all you did to sustain him. We will always remember you—we went through some difficult days and nights together. We thank you for being a blessing to our little Jake and to us—we know you will be a blessing to many more children. Best wishes with your career. Fondly, Shelly and Greg I kept this letter for 15 years. In the beginning, I saved it because I was surprised and touched; that they were sincerely grateful to have had this time with Jake was hard for me to believe. Now, I keep it as a reminder of my own blindness to the meaning of my service to this child and family. I felt I was a failure because I could not cure Jake, but now I can see and connect to a new definition of service. I learned that service is not about cure, but about connecting and caring. I feel a deep sense of gratitude for this remarkable experience—to have been privileged to care for Jake and his family. Through their letter, their love of their child and their appreciation of my efforts they have taught me new truths about healing. And in doing so, they have healed me.
Reflective practice
Sending flowers Ruby Roy * Department of Pediatrics, Loyola University Medical Center, 2160 South First Avenue, Maywood, IL 60153, USA Received 1 March 2006; received in revised form 23 July 2006; accepted 14 November 2006
Keywords: Patient story; Narrative; Physician–patient relationship; Service; Death; Meaning; Futile care; Medical education; Teaching; Patient funeral; Premature baby
True story about a patient death. I (the physician) sent flowers to funeral and in return got a letter that taught me about healing, service and the meaning of my work. I was a resident at a large Children’s Hospital in the early nineties, when residency training was heavily weighted toward in-hospital, emergency and intensive care. I could calculate a dopamine drip in my sleep, and certainly valued that skill more than, for example, the counseling of families in the well baby clinic. My education, my life, my sense of service was all about intervention to ‘‘fix’’ medical problems. I valued knowledge, competence, and decisiveness. My role models were brilliant, quick-thinking intensive care physicians who were highly dedicated toward saving lives. If there was a solution, they would find it. If there was not a solution, they would make one. In my vision of medical care, there was always an answer, as long as you were smart enough. Jake was an 8-week premature baby. Born at a private hospital with a state of the art neonatal intensive care unit. He had a full team in the delivery room ready for him: neonatal residents, an attending, a nurse and a respiratory therapist. He received a lifesaving infusion of surfactant directly into his lungs via an endotracheal tube and was hooked up to a respirator within the first hour of life. He weighed 1200 g—a little less than three pounds. His survival potential under such circumstances was over 95%. I did not meet him at birth. I was working at the Children’s Hospital where he was transferred after 3 days of not doing as expected. He did not respond to the ventilator
* Tel.: +1 708 327 9095. E-mail address: [email protected].
well. He was transferred to our hospital for a bronchoscopy, during which, they discovered that the source of his respiratory problems was a technical failure. A small piece of plastic from the ventilator had broken off and lodged in his trachea. The rigid bronchoscope used in removal of the plastic was too large for his tiny airway and caused a tracheal tear as the plastic was removed. He underwent an emergent surgical repair of his trachea. This is when I met him and his family—after this surgery. His parents were a suburban couple that lived more than an hour away, but still visited on a daily basis. They were, (as we judge such families) ‘‘appropriately concerned’’. The mother would sit by the bedside and reach her hand into the incubator and stroke his forehead gently with one finger. She did not ask a lot of questions, perhaps overwhelmed as we were by the magnitude of his problems. Multiple different teams including neonatology, surgery and otolaryngology rounded on him every day. They all gave her a different prognosis: he was ‘‘out of the zone’’ where any one of us could predict how he was going to do. I took care of him for 3 weeks, until the end of my month. He had a rocky clinical course, with multiple complications from his surgeries and his prematurity. It seemed like every time I was on call, he critically decompensated. I called his family multiple times to tell them ‘‘this is it, you had better come in because it does not look like he will make it this time’’. For some reason, he survived for me. I did not get personally close to the family—I was too busy and considered myself too ‘‘professional’’ to get emotionally involved. But I could not deny that I was extremely personally involved with Jake. I was angry and frustrated. He defied our sophisticated medical knowledge— and it was a failure of our technology that put him in such a
0738-3991/$ – see front matter # 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2006.11.002
278
R. Roy / Patient Education and Counseling 65 (2007) 277–278
critical state. At the end of my month, I had the sinking suspicion that he would not make it—that my work was futile. Although I did not speak of it, I felt acutely for this mother’s emotional roller coaster between anxiety and hope. Was it fair to his family to put them through this? I was certain that there was no value in a relationship with a baby hooked up to a ventilator with multiple tubes and lines. I was certain that there could be no sense of service or fulfillment in the care of a baby who does not get better. I was certain about so many things in those days. He did die, several weeks later. Because going to his funeral would have been unheard of in those days, I sent flowers. Several months later I received a letter from the family: Dear Ruby, We gratefully appreciate your sending the dozen white roses following Jake’s death. Thank you for thinking of us in our time of loss and grief. Moreover, we want to convey our heartfelt thanks for the very delicate, loving and attentive care you gave our Jake in the tenuous weeks you spent with him. We know Jake was a pretty sick child, and that he was battling long odds from the onset, but after all he did overcome and conquer, we really thought he was going to make it. Even Dr. G—liked the ‘‘ intangible factor.’’ In the end, he could not beat the lung disease and airway narrowing caused by the surgeries to repair the tracheal tear. Ruby, we still have a hard time, not only in the loss of
our little boy, but in the way it happened—the ‘‘freak’’ lodging of the piece of plastic. We enjoyed a wonderful, unique 6 weeks with our little Jake. We would rather have had 6 weeks with him in the fashion we did than none at all, and we will be forever grateful for all you did to sustain him. We will always remember you—we went through some difficult days and nights together. We thank you for being a blessing to our little Jake and to us—we know you will be a blessing to many more children. Best wishes with your career. Fondly, Shelly and Greg I kept this letter for 15 years. In the beginning, I saved it because I was surprised and touched; that they were sincerely grateful to have had this time with Jake was hard for me to believe. Now, I keep it as a reminder of my own blindness to the meaning of my service to this child and family. I felt I was a failure because I could not cure Jake, but now I can see and connect to a new definition of service. I learned that service is not about cure, but about connecting and caring. I feel a deep sense of gratitude for this remarkable experience—to have been privileged to care for Jake and his family. Through their letter, their love of their child and their appreciation of my efforts they have taught me new truths about healing. And in doing so, they have healed me.