Opinion Editorial
gastroesophageal reflux disease. J Pediatr. 2009;154(4):514-520, e4.
Clostridium difficile infection. Aliment Pharmacol Ther. 2010;31(7):754-759.
6. Davidson G, Wenzl TG, Thomson M, et al. Efficacy and safety of once-daily esomeprazole for the treatment of gastroesophageal reflux disease in neonatal patients. J Pediatr. 2013;163(3):692-698, e1-e2.
9. US Food and Drug Administration. FDA food and safety communication: clostridium difficile-associated diarrhea can be associated with stomach acid drugs known as proton pump inhibitors (PPIs). 2012. http://www.fda.gov/drugs /drugsafety/ucm290510.htm. Accessed July 9, 2014.
7. Loots C, Kritas S, van Wijk M, et al. A randomized trial of body positioning and medical therapy for infantile gastroesophageal reflux symptoms. J Pediatr Gastroenterol Nutr. 2014. 8. Turco R, Martinelli M, Miele E, et al. Proton pump inhibitors as a risk factor for paediatric
11. Luk CP, Parsons R, Lee YP, Hughes JD. Proton pump inhibitor-associated hypomagnesemia: what do FDA data tell us? Ann Pharmacother. 2013;47(6): 773-780. 12. Rosen R, Amirault J, Liu H, et al. Changes in gastric and lung microflora with acid suppression: acid suppression and bacterial growth [published online August 18, 2014]. JAMA Pediatr. 2014. doi:10 .1001/jamapediatrics.2014.696.
10. Yang YX, Metz DC. Safety of proton pump inhibitor exposure. Gastroenterology. 2010;139(4): 1115-1127.
Planning for Effective Hospital Discharge Michael Apkon, MD, PhD; Jeremy N. Friedman, MD
Hospital discharges occur more than 35 million times per year in the United States and the process of discharging the patient is one of very few processes common to all hospitalizations where the patients survive. Patients’ safety is at risk when discharge plans do not ensure that the patients, their families, and their c areEditorial page 891 givers have the knowledge and support they need to Related article page 955 thrive beyond the hospital’s walls. Hospital costs increase and access to beds for new patients diminish when discharges are delayed. Despite the importance, frequency, and universality of hospital discharges, the process is one characterized by substantial variability within and between hospitals and a lack of generally accepted goals. Unfortunately, the process of discharging a patient rarely follows a clear plan and is, too often, an ad hoc assembly of actions identified on an as-needed basis. We might consider that, to paraphrase Antoine de Saint-Exupéry, a goal of a safe and timely discharge without a plan is but a wish. Berry and coauthors1 provide us a framework around which to develop a more reliable process for the safe and timely discharge of pediatric patients. Their recommendations build on a growing body of work that has examined the hospital discharge and assessed the impact of a variety of interventions aimed at improving a range of outcomes. The work is also informed by regulations that impose a general set of standards but provide little specificity about how to accomplish or assess a safe, timely discharge. Whereas many may conceptualize the purpose of hospitalization as providing a set of treatments for an injury or illness, the recommendations by these authors have us think about the purpose in a somewhat broader way. As the authors seemed to suggest, if our purpose is to facilitate a patient’s safe return home in the best possible state with the least likelihood of returning, then the primary elements of the framework follow naturally. This is the broader purpose that seems to make the most sense when taking the patient’s perspective 890
and we need to view the discharge process and the planning that leads up to it as every bit as important as the diagnostic and therapeutic actions taken during hospitalization. Families’ and caregivers’ perceptions about readiness for discharge sometimes differ and when this happens, discharge can be delayed. Setting discharge goals at the beginning of a hospitalization creates a foundation for ongoing dialogue that accomplishes several things. First, it provides a set of objectives for caregivers to orient their management with a focus beyond the most immediate clinical decisions to be made. Second, it provides an objective set of criteria around which to explore differences in perception between caregivers and families. However, appropriately setting discharge goals cannot be accomplished without consideration of the kinds of postdischarge needs that can be met given a child’s circumstances outside the hospital and the kinds of factors with which a child and family might contend. Although the framework offered by the authors is a place for hospitals to orient their thinking about the preparation for discharge, a number of challenges will need to be addressed if the plans that are contemplated are to be developed and executed effectively. Communicating in the language of the patients and their families at their appropriate educational level, as well as getting appropriate information to caregivers outside the hospital before they see patients at a follow-up appointment, will be critically important but operationally challenging for many hospitals today. Recognizing the multiple perspectives and distributed expertise that needs to be coordinated in planning a discharge will also be a challenge. Currently, physicians tend to prioritize the treatment of acute problems over discharge planning. Some do not feel as responsible for discharge-related tasks and others may lack familiarity with the needs of families and the resources available in the community postdischarge. This lack of a big-picture perspective is likely compounded in hospitals where rotating trainees have responsibility for most of the detailed hospital care tasks. The composition of the care team will vary by setting but this framework will need to be adapted to fit the daily workflow using the entire team’s scope
JAMA Pediatrics October 2014 Volume 168, Number 10
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a University of Iowa User on 06/03/2015
jamapediatrics.com
Editorial Opinion
of practice in such a way that it works 24 hours a day/7 days a week. This will need to be achieved without creating a whole new layer of caregivers but primarily by readjusting priorities with the creative development of smart systems that facilitate each of the steps outlined in the proposed discharge framework. Implementation of this framework will need to be costeffective, safe, and efficient. Adaptation for the specific clinical setting will be required. For example, children with complex medical or psychosocial needs may need quite a different level of time and effort from the more typical healthy child and family presenting with a routine acute illness. While all the steps outlined in this review are important, it may be that certain parts of the bundle are more or less critical in driving the optimal discharge process. When implementing, teams may want to consider an additional step, which could encompass a postdischarge phase. This would include follow-up of outstanding test results, confirming outstanding appointments,
home care, and, where appropriate, focused immediate follow-up (eg, telephone calls).2 Further thought needs to be given to how best to measure the quality and efficiency of the discharge process. Which outcomes will be most important to track? Much has been written about reducing the rate of unplanned readmissions,3,4 as well as the benefits (and pitfalls) of discharge early in the day.5 Another potentially interesting outcome is the observed to expected length of stay for specific diagnoses and severity of illness. Safety must be the overarching goal so monitoring of adverse events, medication errors, and morbidity from missed follow-up appointments and test results will be important. The satisfaction of both families and primary care professionals is another essential piece of a successful process. One thing is clear, it is difficult to make progress without a clear destination in mind and the framework offered in the work by Berry and colleagues1 provides a place to steer to and a high-level strategy to navigate the waters.
ARTICLE INFORMATION
REFERENCES
Author Affiliations: The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
1. Berry JG, Blaine K, Rogers J, et al. A framework of pediatric hospital discharge care informed by legislation, research, and practice [published online August 25, 2014]. JAMA Pediatr. doi:10.1001 /jamapediatrics.2014.891.
Corresponding Author: Michael Apkon, MD, PhD, The Hospital for Sick Children, University of Toronto, 555 University Ave, Toronto, ON M5G1X8, Canada ([email protected]). Published Online: August 25, 2014. doi:10.1001/jamapediatrics.2014.1028. Conflict of Interest Disclosures: None reported.
2. Yang C, Chen CMJ. Effects of post-discharge telephone calls on the rate of emergency department visits in paediatric patients. J Paediatr Child Health. 2012;48(10):931-935.
experiencing recurrent readmissions within children’s hospitals. JAMA. 2011;305(7):682-690. 4. Bardach NS, Vittinghoff E, Asteria-Peñaloza R, et al. Measuring hospital quality using pediatric readmission and revisit rates. Pediatrics. 2013;132 (3):429-436. 5. Iantorno S, Fieldston E. Hospitals are not hotels: high-quality discharges occur around the clock. JAMA Pediatr. 2013;167(7):596-597.
3. Berry JG, Hall DE, Kuo DZ, et al. Hospital utilization and characteristics of patients
Integrating Medical Plans Within Family Life Jen Faultner, BA
Our daughter Zoe was born with a set of severe congenital heart defects that left her unable to survive without a heart transplant, which she received when only 5 weeks old. Infections, viruses, failure to thrive, transfusions, and many more Editorial page 890 complications required numerous hospital stays. She has received care in the neoRelated article page 955 natal intensive care unit, the cardiac intensive care unit, and the general inpatient unit. By age 2 years, she had been hospitalized 10 times and an additional 3 times in the last 5 years. The issue of discharge is incredibly important to patients and families. From the moment parents walk through the doors, they are already thinking about when they will go home and what that will mean. The standardized approach described in the article by Berry and colleagues1 fully incorporates the patient and family members in every step of the process and so lays a foundation for success. Two additional aspects of this discharge framework are particularly noteworthy. First is the broadminded inclusion of po-
tential discharge needs, illustrated within the case study as the use of a list of potential discharge needs for children. Oftentimes, discharge is narrowly focused on immediate needs directly associated with the hospital stay (such as new medications, tests, or equipment) but rarely digs deeper into the patient’s life to assess needs. When parents are in the hospital with their child, it is so easy to forget all the things they are normally so good at remembering: which prescriptions at home need refilling, which appointments need to be scheduled or rescheduled, which medical supplies are close to running out, and many others. Parents’ whole routine is turned upside down and families benefit when the health care team thinks more globally about needs. Second is how the framework calls out the need for follow-up appointments to be scheduled before discharge occurs. This is crucial because families face roadblocks to obtaining these appointments that can be extremely difficult to navigate on their own after discharge. I cannot stress enough how lonely it is for families, on discharge, to feel they are now on their own, caring for their child with limited expertise and a complicated health care system to navigate. To the extent
jamapediatrics.com
JAMA Pediatrics October 2014 Volume 168, Number 10
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a University of Iowa User on 06/03/2015
891
Opinion Editorial
that health care professionals can help families navigate that system before they leave the hospital, success once they are home will be greatly impacted. The return home after hospitalization is a daunting experience for families. Oftentimes, parents enter the hospital with one reality and leave with another, seeing their entire lives greatly changed. In some ways, there is no way to be fully prepared, much of it has to be experienced to be learned. Critical to that experience is helping parents and patients see how medical needs can be integrated into their lives in practical, concrete ways. Often, the distinction between being prepared or not is less about information, or lack thereof, but about how that information can be integrated into that patient’s and family’s life. Training and integration are not the same. Reentry into home life is the most stressful part of the discharge process. This transition from giving care in a hospital to giving that same care in complex real life is like translating from one language to another. I wish that clinicians would begin asking themselves several key questions: “Have we discussed how to realistically incorporate this child’s medical needs into their existing family life?” “Do they have a master plan that shows them, visually, when and what needs to happen?” And “what efforts have been made to help the family integrate all of this into their life?” Providing parents with a generic knowledge of the number of feeds, medications, or interventions needed a day and to see the pediatrician within 2 days is simply not enough—parents need help forming a concrete schedule and system for giving care. For example: Day 2 at home: 6:00 AM: Start feed No. 1 7:00 AM: Give medication X and Y and get kids up 8:30 AM: Drive kids to school 10:00 AM: Start feed No. 2 10:30 AM: Pediatrician appointment (pack medication Z) 12:00 PM: Give medication Z
ARTICLE INFORMATION Author Affiliation: former chair, Family Advisory Council, Seattle Children’s Hospital. Corresponding Author: Jen Faultner, BA, 1330 102nd Ave NE, Bellevue, WA 98004 ([email protected]).
892
1:00 PM: Naptime for our son 2:00 PM: Start feed No. 3 3:15 PM: Pick up older sibling and return home And so on. When my daughter was discharged after her transplant, she came home with a feeding tube and 14 medications scheduled at 6 different times during both the day and night. I completed all the typical training and spent her last 2 hospital days in charge of all medications. When asked if I felt prepared to go home, I said “yes.” However, I did not know how much I did not know. An attentive nurse knew we also had a 2-year-old boy at home and that the standard training was not enough. She came in one day with a plan for me, not a schedule of when to give medications but a plan for how to incorporate this regimen safely into our lives. She brought a pink plastic hospital bin, 6 paper cups, a marker, ideas, and a system for labeling and tracking medications. The system was simple, practical, and concrete. The plan included (1) drawing up medications the night before, when a 2-yearold child or a high-needs baby were not distracting me and (2) placing labeled syringes in a cup for each time a dose was due so fatigue would not leave me questioning whether I had given a medication yet and would visually cue me if a dose was forgotten. I did not know what an essential gift she had given me until I got home and hit real life. I cannot imagine what I would have done or what mistakes I would have made had that system not been in place for me, a system I did not know I needed until I was at my kitchen table trying to unpack everything we had brought home. There is nothing simple about this experience. If the ultimate goal of discharge is to see a child successfully leave the hospital setting and reenter normal life with all of the tools needed to keep them out of the hospital, then integration of the medical plan for a child into the overall life plan of a family is a piece that needs to be further addressed in discharge planning.
Published Online: August 25, 2014. doi:10.1001/jamapediatrics.2014.1031. Conflict of Interest Disclosures: None reported.
legislation, research, and practice [published online August 25, 2014]. JAMA Pediatr. doi:10.1001 /jamapediatrics.2014.891.
REFERENCE 1. Berry JG, Blaine K, Rogers J, et al. A framework of pediatric hospital discharge care informed by
JAMA Pediatrics October 2014 Volume 168, Number 10
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a University of Iowa User on 06/03/2015
jamapediatrics.com
gastroesophageal reflux disease. J Pediatr. 2009;154(4):514-520, e4.
Clostridium difficile infection. Aliment Pharmacol Ther. 2010;31(7):754-759.
6. Davidson G, Wenzl TG, Thomson M, et al. Efficacy and safety of once-daily esomeprazole for the treatment of gastroesophageal reflux disease in neonatal patients. J Pediatr. 2013;163(3):692-698, e1-e2.
9. US Food and Drug Administration. FDA food and safety communication: clostridium difficile-associated diarrhea can be associated with stomach acid drugs known as proton pump inhibitors (PPIs). 2012. http://www.fda.gov/drugs /drugsafety/ucm290510.htm. Accessed July 9, 2014.
7. Loots C, Kritas S, van Wijk M, et al. A randomized trial of body positioning and medical therapy for infantile gastroesophageal reflux symptoms. J Pediatr Gastroenterol Nutr. 2014. 8. Turco R, Martinelli M, Miele E, et al. Proton pump inhibitors as a risk factor for paediatric
11. Luk CP, Parsons R, Lee YP, Hughes JD. Proton pump inhibitor-associated hypomagnesemia: what do FDA data tell us? Ann Pharmacother. 2013;47(6): 773-780. 12. Rosen R, Amirault J, Liu H, et al. Changes in gastric and lung microflora with acid suppression: acid suppression and bacterial growth [published online August 18, 2014]. JAMA Pediatr. 2014. doi:10 .1001/jamapediatrics.2014.696.
10. Yang YX, Metz DC. Safety of proton pump inhibitor exposure. Gastroenterology. 2010;139(4): 1115-1127.
Planning for Effective Hospital Discharge Michael Apkon, MD, PhD; Jeremy N. Friedman, MD
Hospital discharges occur more than 35 million times per year in the United States and the process of discharging the patient is one of very few processes common to all hospitalizations where the patients survive. Patients’ safety is at risk when discharge plans do not ensure that the patients, their families, and their c areEditorial page 891 givers have the knowledge and support they need to Related article page 955 thrive beyond the hospital’s walls. Hospital costs increase and access to beds for new patients diminish when discharges are delayed. Despite the importance, frequency, and universality of hospital discharges, the process is one characterized by substantial variability within and between hospitals and a lack of generally accepted goals. Unfortunately, the process of discharging a patient rarely follows a clear plan and is, too often, an ad hoc assembly of actions identified on an as-needed basis. We might consider that, to paraphrase Antoine de Saint-Exupéry, a goal of a safe and timely discharge without a plan is but a wish. Berry and coauthors1 provide us a framework around which to develop a more reliable process for the safe and timely discharge of pediatric patients. Their recommendations build on a growing body of work that has examined the hospital discharge and assessed the impact of a variety of interventions aimed at improving a range of outcomes. The work is also informed by regulations that impose a general set of standards but provide little specificity about how to accomplish or assess a safe, timely discharge. Whereas many may conceptualize the purpose of hospitalization as providing a set of treatments for an injury or illness, the recommendations by these authors have us think about the purpose in a somewhat broader way. As the authors seemed to suggest, if our purpose is to facilitate a patient’s safe return home in the best possible state with the least likelihood of returning, then the primary elements of the framework follow naturally. This is the broader purpose that seems to make the most sense when taking the patient’s perspective 890
and we need to view the discharge process and the planning that leads up to it as every bit as important as the diagnostic and therapeutic actions taken during hospitalization. Families’ and caregivers’ perceptions about readiness for discharge sometimes differ and when this happens, discharge can be delayed. Setting discharge goals at the beginning of a hospitalization creates a foundation for ongoing dialogue that accomplishes several things. First, it provides a set of objectives for caregivers to orient their management with a focus beyond the most immediate clinical decisions to be made. Second, it provides an objective set of criteria around which to explore differences in perception between caregivers and families. However, appropriately setting discharge goals cannot be accomplished without consideration of the kinds of postdischarge needs that can be met given a child’s circumstances outside the hospital and the kinds of factors with which a child and family might contend. Although the framework offered by the authors is a place for hospitals to orient their thinking about the preparation for discharge, a number of challenges will need to be addressed if the plans that are contemplated are to be developed and executed effectively. Communicating in the language of the patients and their families at their appropriate educational level, as well as getting appropriate information to caregivers outside the hospital before they see patients at a follow-up appointment, will be critically important but operationally challenging for many hospitals today. Recognizing the multiple perspectives and distributed expertise that needs to be coordinated in planning a discharge will also be a challenge. Currently, physicians tend to prioritize the treatment of acute problems over discharge planning. Some do not feel as responsible for discharge-related tasks and others may lack familiarity with the needs of families and the resources available in the community postdischarge. This lack of a big-picture perspective is likely compounded in hospitals where rotating trainees have responsibility for most of the detailed hospital care tasks. The composition of the care team will vary by setting but this framework will need to be adapted to fit the daily workflow using the entire team’s scope
JAMA Pediatrics October 2014 Volume 168, Number 10
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a University of Iowa User on 06/03/2015
jamapediatrics.com
Editorial Opinion
of practice in such a way that it works 24 hours a day/7 days a week. This will need to be achieved without creating a whole new layer of caregivers but primarily by readjusting priorities with the creative development of smart systems that facilitate each of the steps outlined in the proposed discharge framework. Implementation of this framework will need to be costeffective, safe, and efficient. Adaptation for the specific clinical setting will be required. For example, children with complex medical or psychosocial needs may need quite a different level of time and effort from the more typical healthy child and family presenting with a routine acute illness. While all the steps outlined in this review are important, it may be that certain parts of the bundle are more or less critical in driving the optimal discharge process. When implementing, teams may want to consider an additional step, which could encompass a postdischarge phase. This would include follow-up of outstanding test results, confirming outstanding appointments,
home care, and, where appropriate, focused immediate follow-up (eg, telephone calls).2 Further thought needs to be given to how best to measure the quality and efficiency of the discharge process. Which outcomes will be most important to track? Much has been written about reducing the rate of unplanned readmissions,3,4 as well as the benefits (and pitfalls) of discharge early in the day.5 Another potentially interesting outcome is the observed to expected length of stay for specific diagnoses and severity of illness. Safety must be the overarching goal so monitoring of adverse events, medication errors, and morbidity from missed follow-up appointments and test results will be important. The satisfaction of both families and primary care professionals is another essential piece of a successful process. One thing is clear, it is difficult to make progress without a clear destination in mind and the framework offered in the work by Berry and colleagues1 provides a place to steer to and a high-level strategy to navigate the waters.
ARTICLE INFORMATION
REFERENCES
Author Affiliations: The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
1. Berry JG, Blaine K, Rogers J, et al. A framework of pediatric hospital discharge care informed by legislation, research, and practice [published online August 25, 2014]. JAMA Pediatr. doi:10.1001 /jamapediatrics.2014.891.
Corresponding Author: Michael Apkon, MD, PhD, The Hospital for Sick Children, University of Toronto, 555 University Ave, Toronto, ON M5G1X8, Canada ([email protected]). Published Online: August 25, 2014. doi:10.1001/jamapediatrics.2014.1028. Conflict of Interest Disclosures: None reported.
2. Yang C, Chen CMJ. Effects of post-discharge telephone calls on the rate of emergency department visits in paediatric patients. J Paediatr Child Health. 2012;48(10):931-935.
experiencing recurrent readmissions within children’s hospitals. JAMA. 2011;305(7):682-690. 4. Bardach NS, Vittinghoff E, Asteria-Peñaloza R, et al. Measuring hospital quality using pediatric readmission and revisit rates. Pediatrics. 2013;132 (3):429-436. 5. Iantorno S, Fieldston E. Hospitals are not hotels: high-quality discharges occur around the clock. JAMA Pediatr. 2013;167(7):596-597.
3. Berry JG, Hall DE, Kuo DZ, et al. Hospital utilization and characteristics of patients
Integrating Medical Plans Within Family Life Jen Faultner, BA
Our daughter Zoe was born with a set of severe congenital heart defects that left her unable to survive without a heart transplant, which she received when only 5 weeks old. Infections, viruses, failure to thrive, transfusions, and many more Editorial page 890 complications required numerous hospital stays. She has received care in the neoRelated article page 955 natal intensive care unit, the cardiac intensive care unit, and the general inpatient unit. By age 2 years, she had been hospitalized 10 times and an additional 3 times in the last 5 years. The issue of discharge is incredibly important to patients and families. From the moment parents walk through the doors, they are already thinking about when they will go home and what that will mean. The standardized approach described in the article by Berry and colleagues1 fully incorporates the patient and family members in every step of the process and so lays a foundation for success. Two additional aspects of this discharge framework are particularly noteworthy. First is the broadminded inclusion of po-
tential discharge needs, illustrated within the case study as the use of a list of potential discharge needs for children. Oftentimes, discharge is narrowly focused on immediate needs directly associated with the hospital stay (such as new medications, tests, or equipment) but rarely digs deeper into the patient’s life to assess needs. When parents are in the hospital with their child, it is so easy to forget all the things they are normally so good at remembering: which prescriptions at home need refilling, which appointments need to be scheduled or rescheduled, which medical supplies are close to running out, and many others. Parents’ whole routine is turned upside down and families benefit when the health care team thinks more globally about needs. Second is how the framework calls out the need for follow-up appointments to be scheduled before discharge occurs. This is crucial because families face roadblocks to obtaining these appointments that can be extremely difficult to navigate on their own after discharge. I cannot stress enough how lonely it is for families, on discharge, to feel they are now on their own, caring for their child with limited expertise and a complicated health care system to navigate. To the extent
jamapediatrics.com
JAMA Pediatrics October 2014 Volume 168, Number 10
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a University of Iowa User on 06/03/2015
891
Opinion Editorial
that health care professionals can help families navigate that system before they leave the hospital, success once they are home will be greatly impacted. The return home after hospitalization is a daunting experience for families. Oftentimes, parents enter the hospital with one reality and leave with another, seeing their entire lives greatly changed. In some ways, there is no way to be fully prepared, much of it has to be experienced to be learned. Critical to that experience is helping parents and patients see how medical needs can be integrated into their lives in practical, concrete ways. Often, the distinction between being prepared or not is less about information, or lack thereof, but about how that information can be integrated into that patient’s and family’s life. Training and integration are not the same. Reentry into home life is the most stressful part of the discharge process. This transition from giving care in a hospital to giving that same care in complex real life is like translating from one language to another. I wish that clinicians would begin asking themselves several key questions: “Have we discussed how to realistically incorporate this child’s medical needs into their existing family life?” “Do they have a master plan that shows them, visually, when and what needs to happen?” And “what efforts have been made to help the family integrate all of this into their life?” Providing parents with a generic knowledge of the number of feeds, medications, or interventions needed a day and to see the pediatrician within 2 days is simply not enough—parents need help forming a concrete schedule and system for giving care. For example: Day 2 at home: 6:00 AM: Start feed No. 1 7:00 AM: Give medication X and Y and get kids up 8:30 AM: Drive kids to school 10:00 AM: Start feed No. 2 10:30 AM: Pediatrician appointment (pack medication Z) 12:00 PM: Give medication Z
ARTICLE INFORMATION Author Affiliation: former chair, Family Advisory Council, Seattle Children’s Hospital. Corresponding Author: Jen Faultner, BA, 1330 102nd Ave NE, Bellevue, WA 98004 ([email protected]).
892
1:00 PM: Naptime for our son 2:00 PM: Start feed No. 3 3:15 PM: Pick up older sibling and return home And so on. When my daughter was discharged after her transplant, she came home with a feeding tube and 14 medications scheduled at 6 different times during both the day and night. I completed all the typical training and spent her last 2 hospital days in charge of all medications. When asked if I felt prepared to go home, I said “yes.” However, I did not know how much I did not know. An attentive nurse knew we also had a 2-year-old boy at home and that the standard training was not enough. She came in one day with a plan for me, not a schedule of when to give medications but a plan for how to incorporate this regimen safely into our lives. She brought a pink plastic hospital bin, 6 paper cups, a marker, ideas, and a system for labeling and tracking medications. The system was simple, practical, and concrete. The plan included (1) drawing up medications the night before, when a 2-yearold child or a high-needs baby were not distracting me and (2) placing labeled syringes in a cup for each time a dose was due so fatigue would not leave me questioning whether I had given a medication yet and would visually cue me if a dose was forgotten. I did not know what an essential gift she had given me until I got home and hit real life. I cannot imagine what I would have done or what mistakes I would have made had that system not been in place for me, a system I did not know I needed until I was at my kitchen table trying to unpack everything we had brought home. There is nothing simple about this experience. If the ultimate goal of discharge is to see a child successfully leave the hospital setting and reenter normal life with all of the tools needed to keep them out of the hospital, then integration of the medical plan for a child into the overall life plan of a family is a piece that needs to be further addressed in discharge planning.
Published Online: August 25, 2014. doi:10.1001/jamapediatrics.2014.1031. Conflict of Interest Disclosures: None reported.
legislation, research, and practice [published online August 25, 2014]. JAMA Pediatr. doi:10.1001 /jamapediatrics.2014.891.
REFERENCE 1. Berry JG, Blaine K, Rogers J, et al. A framework of pediatric hospital discharge care informed by
JAMA Pediatrics October 2014 Volume 168, Number 10
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a University of Iowa User on 06/03/2015
jamapediatrics.com
