JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 5, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.9432
Notes from the Editor
Is There a ‘‘Right Way’’ To Provide Pediatric Palliative Care? Emma Jones, MD and Joanne Wolfe, MD, MPH, Associate Editor
A
s the field of pediatric palliative care (PPC) continues to grow and new programs are developed, the question of quality and standardization is beginning to emerge. Many in the field, from established groups to lone reeds struggling to introduce palliative care at their hospital or in the community, are seeking guidance. But is it possible to define a ‘‘right way’’ for a field built upon individualized care planning and family-centeredness? Perhaps this individualization necessitates heterogeneity. The question of the ‘‘right way’’ brings to mind the adage, ‘‘If you have seen one pediatric palliative care program, you have seen ONE pediatric palliative care program.’’ In this issue of the Journal of Palliative Medicine, two very different programs report on their experiences. Miller and Frizzola describe the experience of a new program within a free-standing children’s hospital.1 That team experienced greater than predicted volume within its first year and now serves a diverse patient demographic similar to other existing hospital-based programs.2,3 Korones and colleagues share their experiences caring for children in a community-based program. This review of 36 children over a four-year period demonstrates that children spend a majority of their last six months of life at home, and that home-based services are an integral part of comprehensive palliative care throughout the life span.4 It is wonderful to see that new programs can so quickly find success. Currently, the mere presence of a team may be considered a measure of quality, as only half of children’s hospitals report having a palliative care program.5 However, as recognition of the value of PPC grows, our challenge will transition from encouraging referrals to properly prioritizing patients, so that care can be optimally provided to those most in need. This will require the empowerment of ‘‘palliative generalists’’ with the knowledge and skills to implement core palliative care elements. Excellent communication and symptom management skills are no more the exclusive domain of the palliative care specialist than vaccines and antibiotics are to the infectious disease specialist; however, as with vaccines and antibiotics, it is our charge to create a set of ‘‘best practices’’ for their use. Within our program at Boston Children’s Hospital/DanaFarber Cancer Institute, we strive for some degree of standardization of our initial consultation. Using a template within our EMR, we aim to assess 10 symptoms and address 4 key domains in our formulation: goals of care, care planning, symptom management, and support for the child and family. However, we currently have no system to measure our ad-
herence to this format, and sometimes even question the relevance of such a comprehensive assessment for every patient. Balancing the goal of performing a comprehensive evaluation with the individual needs of the patient and providing quality care in the available time can be challenging. Should we strive to ‘‘stick to the script’’ or allow the conversation to drift to areas most important to the individual family at that time? The answers to these questions are as diverse as the patients we serve and the individual clinicians that we are. The field of PPC must continue to foster individual creativity and interdisciplinary collaboration while finding a way to incorporate standards of care that don’t stifle these qualities. Similarly, rigorous quality improvement requires a bit of fortitude. We need to be brave enough to measure ourselves, accepting that this measurement will initially reveal our weaknesses. Relying on years of experience or completion of a fellowship program should not be sufficient to know we are providing top-quality care to every patient, every time. We are all human beings and we sometimes overlook things. For example, at our program we have over 50 years of collective experience among our clinicians, yet we only have a 10% rate of assessing sleep. One of our fellows is now conducting an education project to improve our performance in this area. The importance of quality improvement is reflected in the most recent American Academy of Pediatrics (AAP) policy statement which lists an active quality improvement agenda as something that all programs should include.6 Perhaps the best means of finding the ‘‘right way’’ is to devise a set of core process and outcome measures that constitute high-quality PPC and continue to allow each team to design the program best suited to their practice setting and patient population. Within this context we can each allow our creativity and innovation to shine, confident that we are providing the highest-quality care for every child and family. References
1. Fizzola M, Miller EG: Referrals to a new pediatric palliative care team: Details of the first twelve months of operation. J Palliat Med 2014;17:585–588. 2. Feudtner C, Kang, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J: Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics 2011;127:1094–1101. 3. Vadeboncoeur CM, Splinter WM, Rattray M, Johnston DL, Coulombe L: A paediatric palliative care programme in
500
NOTES FROM THE EDITOR
development: Trends in referral and location of death. Arch Dis Child 2010;95:686–689. 4. Niswander L, Cromwell P, Chirico J, Gupton A, Korones D: Endof-life care for children enrolled in a community-based pediatric palliative care program. J Palliat Med 2014;17:589–591. 5. Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, Weissman D: Pediatric palliative care programs
501
in children’s hospitals: A cross-sectional national survey. Pediatrics 2013;132:1063–1070. 6. Section on Hospice and Palliative Medicine and Committee on Hospital Care: Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 2013;132: 966–972.
Notes from the Editor
Is There a ‘‘Right Way’’ To Provide Pediatric Palliative Care? Emma Jones, MD and Joanne Wolfe, MD, MPH, Associate Editor
A
s the field of pediatric palliative care (PPC) continues to grow and new programs are developed, the question of quality and standardization is beginning to emerge. Many in the field, from established groups to lone reeds struggling to introduce palliative care at their hospital or in the community, are seeking guidance. But is it possible to define a ‘‘right way’’ for a field built upon individualized care planning and family-centeredness? Perhaps this individualization necessitates heterogeneity. The question of the ‘‘right way’’ brings to mind the adage, ‘‘If you have seen one pediatric palliative care program, you have seen ONE pediatric palliative care program.’’ In this issue of the Journal of Palliative Medicine, two very different programs report on their experiences. Miller and Frizzola describe the experience of a new program within a free-standing children’s hospital.1 That team experienced greater than predicted volume within its first year and now serves a diverse patient demographic similar to other existing hospital-based programs.2,3 Korones and colleagues share their experiences caring for children in a community-based program. This review of 36 children over a four-year period demonstrates that children spend a majority of their last six months of life at home, and that home-based services are an integral part of comprehensive palliative care throughout the life span.4 It is wonderful to see that new programs can so quickly find success. Currently, the mere presence of a team may be considered a measure of quality, as only half of children’s hospitals report having a palliative care program.5 However, as recognition of the value of PPC grows, our challenge will transition from encouraging referrals to properly prioritizing patients, so that care can be optimally provided to those most in need. This will require the empowerment of ‘‘palliative generalists’’ with the knowledge and skills to implement core palliative care elements. Excellent communication and symptom management skills are no more the exclusive domain of the palliative care specialist than vaccines and antibiotics are to the infectious disease specialist; however, as with vaccines and antibiotics, it is our charge to create a set of ‘‘best practices’’ for their use. Within our program at Boston Children’s Hospital/DanaFarber Cancer Institute, we strive for some degree of standardization of our initial consultation. Using a template within our EMR, we aim to assess 10 symptoms and address 4 key domains in our formulation: goals of care, care planning, symptom management, and support for the child and family. However, we currently have no system to measure our ad-
herence to this format, and sometimes even question the relevance of such a comprehensive assessment for every patient. Balancing the goal of performing a comprehensive evaluation with the individual needs of the patient and providing quality care in the available time can be challenging. Should we strive to ‘‘stick to the script’’ or allow the conversation to drift to areas most important to the individual family at that time? The answers to these questions are as diverse as the patients we serve and the individual clinicians that we are. The field of PPC must continue to foster individual creativity and interdisciplinary collaboration while finding a way to incorporate standards of care that don’t stifle these qualities. Similarly, rigorous quality improvement requires a bit of fortitude. We need to be brave enough to measure ourselves, accepting that this measurement will initially reveal our weaknesses. Relying on years of experience or completion of a fellowship program should not be sufficient to know we are providing top-quality care to every patient, every time. We are all human beings and we sometimes overlook things. For example, at our program we have over 50 years of collective experience among our clinicians, yet we only have a 10% rate of assessing sleep. One of our fellows is now conducting an education project to improve our performance in this area. The importance of quality improvement is reflected in the most recent American Academy of Pediatrics (AAP) policy statement which lists an active quality improvement agenda as something that all programs should include.6 Perhaps the best means of finding the ‘‘right way’’ is to devise a set of core process and outcome measures that constitute high-quality PPC and continue to allow each team to design the program best suited to their practice setting and patient population. Within this context we can each allow our creativity and innovation to shine, confident that we are providing the highest-quality care for every child and family. References
1. Fizzola M, Miller EG: Referrals to a new pediatric palliative care team: Details of the first twelve months of operation. J Palliat Med 2014;17:585–588. 2. Feudtner C, Kang, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J: Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics 2011;127:1094–1101. 3. Vadeboncoeur CM, Splinter WM, Rattray M, Johnston DL, Coulombe L: A paediatric palliative care programme in
500
NOTES FROM THE EDITOR
development: Trends in referral and location of death. Arch Dis Child 2010;95:686–689. 4. Niswander L, Cromwell P, Chirico J, Gupton A, Korones D: Endof-life care for children enrolled in a community-based pediatric palliative care program. J Palliat Med 2014;17:589–591. 5. Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, Weissman D: Pediatric palliative care programs
501
in children’s hospitals: A cross-sectional national survey. Pediatrics 2013;132:1063–1070. 6. Section on Hospice and Palliative Medicine and Committee on Hospital Care: Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 2013;132: 966–972.
