Palliative Care in the Pediatric Population
Main Article Content
Abstract
RESUME
This is a proposed literature review to demonstrate the main interventions carried out by healthcare professionals in pediatric palliative care (PPC) based on current studies. It aims to show the methods used in palliative care programs and the results obtained. Methodology: The study searched for articles on PPC and end-of-life (EoL) care in the pediatric population using the CAPES study platform. Twenty articles were found in this selection. Results: With the continuous advancement of oncological treatments, many studies are conducted on the pediatric population, with special attention to palliative care. Many of the issues addressed are not only about the treatment itself but also about understanding the factors involving healthcare professionals, families, and patients. Multidisciplinary work has been extremely relevant to improving the quality of life of pediatric patients, for the development of shared care plans, and for promoting an understanding among both patients and families about palliative treatment. Research shows that patients referred to palliative care undergo fewer invasive interventions than patients who are not referred. Moreover, the psychological aspect of families within palliative care shows a better understanding of the treatment and better acceptance of the prognosis.
Conclusion: Approaches to this treatment are still diverse, and referral methods are still scarce and nonspecific; however, interventions proposed by specialized palliative care groups have proven to be extremely effective.
Keywords:
Pediatric Palliative Care, End-of-Life Care, Healthcare Professionals, Multidisciplinary Approach, Quality of Life, Invasive Interventions, Family Psychological Impact
Article Details
How to Cite
ROSENSCHEG, Marcelen.
Palliative Care in the Pediatric Population.
Medical Research Archives, [S.l.], v. 12, n. 7, july 2024.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/5493>. Date accessed: 21 dec. 2024.
doi: https://doi.org/10.18103/mra.v12i7.5493.
Section
Review Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
1. Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric Palliative Care in Oncology. J Clin Oncol. 2020 Mar 20;38(9):954-962. doi: 10.1200/JCO.18.02331.
2. Kaye EC, Weaver MS, DeWitt LH, Byers E, Stevens SE, Lukowski J, Shih B, Zalud K, Applegarth J, Wong HN, Baker JN, Ullrich CK; AAHPM Research Committee. The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review. J Pain Symptom Manage. 2021 May;61(5):1060-1079.e2. doi: 10.1016/j.jpainsymman.2020.12.003.
3. Chelazzi, C., Villa, G., Lanini, I. et al. The adult and pediatric palliative care: differences and shared issues. J Anesth Analg Crit Care 3, 1 (2023). https://doi.org/10.1186/s44158-023-00085-8
4. William B Ventres, Leslie A Stone, Johanna F Shapiro, Cynthia Haq, Jéssica R B Leão, Donald E Nease, Liz Grant, Stewart W Mercer, John C M Gillies, Pablo González Blasco, Maria Auxiliadora C De Benedetto, Graziela Moreto, Marcelo R Levites, Jennifer E DeVoe, William R Phillips, Jane M Uygur, Thomas R Egnew, Colette S Stanley, Storylines of family medicine V: ways of thinking—honing the therapeutic self, Family Medicine and Community Health, 12, Suppl 3, (e002792), (2024). https://doi.org/10.1136/fmch-2024-002792
5. Palliative care. World Health Organization. https://www.who.int/health-topics/palliative-care
6. Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, Hoydich ZP, Ikejiani DZ, Klein-Fedyshin M, Zimmermann C, Morton SC, Arnold RM, Heller L, Schenker Y. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA. 2016 Nov 22;316(20):2104-2114. doi: 10.1001/jama.2016.16840.
7. Lo DS, Hein N, Bulgareli JV. Pediatric palliative care and end-of-life: a systematic review of economic health analyses. Rev Paul Pediatr. 2022 Jan 5;40:e2021002. doi: 10.1590/1984-0462/2022/40/2021002.
8. Chong PH, De Castro Molina JA, Teo K, Tan WS. Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program. BMC Palliat Care. 2018 Jan 3;17(1):11. doi: 10.1186/s12904-017-0267-z.
9. Peláez Cantero MJ, Morales Asencio JM, Navarro Marchena L, Velázquez González MDR, Sánchez Echàniz J, Rubio Ortega L, Martino Alba R. End of life in patients under the care of paediatric palliative care teams. Multicentre observational study. An Pediatr (Engl Ed). 2021 Jul 21:S1695-4033(21)00222-8. Spanish. doi: 10.1016/j.anpedi.2021.06.012.
10. Bertaud, S., Brightley, G., Crowley, N. et al. Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children’s palliative care service over 14 years. BMC Palliat Care 22, 177 (2023). https://doi.org/10.1186/s12904-023-01302-5
11. Bolognani M, Morelli PD, Scolari I, Dolci C, Fiorito V, Uez F, Graziani S, Stefani B, Zeni F, Gobber G, Bravi E, Tateo S, Soffiati M. Development of a Perinatal Palliative Care Model at a Level II Perinatal Center Supported by a Pediatric Palliative Care Network. Front Pediatr. 2021 Jan 15;8:574397. doi: 10.3389/fped.2020.574397.
12. Salins N, Hughes S, Preston N. Palliative Care in Paediatric Oncology: an Update. Curr Oncol Rep. 2022 Feb;24(2):175-186. doi: 10.1007/s11912-021-01170-3.
13. Pediatric Palliative Care in Oncology: Basic Principles. by Franca Benini 1,*ORCID,Irene Avagnina 1,Luca Giacomelli 2,Simonetta Papa 2,Anna Mercante 3 and Giorgio Perilongo 3. Cancers 2022, 14(8), 1972; https://doi.org/10.3390/cancers14081972.
14. Maggie M. Rogers, MPH; Sarah Friebert, MD; Conrad S.P. Williams, MD; Lisa Humphrey, MD; Rachel Thienprayoon, MD, MSCS; Jeffrey C. Klick, MD. Pediatric Palliative Care Programs in US Hospitals (2021) 148 (1): e2020021634. https://doi.org/10.1542/peds.2020-021634.
15. Ghoshal A, Salins N, Damani A, Deodhar J, Muckaden M. Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit. Indian J Palliat Care. 2016 Jul-Sep;22(3):266-73. doi: 10.4103/0973-1075.185031.
16. Pediatric palliative care in the community. Erica C. Kaye MD, Jared Rubenstein MD, Deena Levine MD, Justin N. Baker MD, Devon Dabbs BBA, Sarah E. Friebert MD. First published: 07 May 2015 https://doi.org/10.3322/caac.21280
17. Wager, J., Kubek, L.A., Brenner, M. et al. Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care. BMC Palliat Care 21, 185 (2022). https://doi.org/10.1186/s12904-022-01078-0
18. Riera-Negre L, Hidalgo-Andrade P, Rosselló MR, Verger S. Exploring critical factors in pediatric palliative care in Latin America: A scoping review. Glob Public Health. 2024 Jan;19(1):2306473. doi: 10.1080/17441692.2024.2306473.
19. Grüneberg ES, Ramos-Guerrero J, Pastrana T. Challenges in the Provision of Pediatric Palliative Care in Mexico: A Cross-Sectional Web-Based Survey. J Palliat Care. 2024 Jan;39(1):58-67. doi: 10.1177/08258597211062767.
20. Ruiz-Gil T, Ródenas-Rigla F. Quality of Care in Pediatric Palliative Care: A Scoping Review. Children (Basel). 2023 Dec 13;10(12):1922. doi: 10.3390/children10121922.
21. Zhang A, Bing L, Mi Q, Zhou F, Wang J. Pediatric Palliative Care for Children with Cancer in a Children's Tertiary Hospital in China: Six-Year Experience of a Pediatric Palliative Care Service. Palliat Med Rep. 2021 Jan 6;2(1):1-8. doi: 10.1089/pmr.2020.0030.
22. Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships Khaliah A. Johnson, MD, FAAP; Alexis Morvant, MD, FAAP; Kristin James, LCPC; Lisa C. Lindley, PhD, RN, FPCN, FAAN. Pediatrics (2021) 148 (5): e2021049968. https://doi.org/10.1542/peds.2021-049968
23. Stoesslein S, Gramm JD, Bender HU, Müller P, Rabenhorst D, Borasio GD, Führer M. "More life and more days"-patient and care characteristics in a specialized acute pediatric palliative care inpatient unit. Eur J Pediatr. 2023 Apr;182(4):1847-1855. doi: 10.1007/s00431-023-04813-8.
24. Análisis descriptivo de la sedación paliativa en una Unidad de Cuidados Paliativos Pediátricos. Descriptive analysis of palliative sedation in a pediatric palliative care unit. panelIñigo de Noriega a, Manuel Rigal Andrés b, Ricardo Martino Alba b. Anales de Pediatría, Volume 96, Issue 5, 2022, Pages 385-393, ISSN 1695-4033, https://doi.org/10.1016/j.anpedi.2021.01.005.
25. Children with medical complexity and pediatric palliative care: Data by a respiratory intermediate care unit. Serena Caggiano MD, Martino Pavone MD, Claudio Cherchi MD, Maria Giovanna Paglietti MD, Alessandra Schiavino MD, Francesca Petreschi MD, Maria Beatrice Chiarini Testa MD, Renato Cutrera MD, PhD … See fewer authors . First published: 12 December 2022 https://doi.org/10.1002/ppul.26278
26. Divisic A, Avagnina I, De Tommasi V, Santini A, Brogelli L, Giacomelli L, Benini F. The use of medical cannabis in pediatric palliative care: a case series. Ital J Pediatr. 2021 Nov 21;47(1):229. doi: 10.1186/s13052-021-01179-1.
27. The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis. Anna Santini,corresponding author 1 , * Irene Avagnina, 1 Anna Marinetto, 1 Valentina De Tommasi, 1 Pierina Lazzarin, 1 Giorgio Perilongo, 2 and Franca Benini. Front Psychol. 2022; 13: 858812. doi: 10.3389/fpsyg.2022.858812
28. Avagnina I, Santini A, Maghini I, Salamon E, Papa S, Giacomelli L, Perilongo G, Agosto C, Benini F. A pilot study on sports activities in pediatric palliative care: just do it. BMC Palliat Care. 2023 Apr 19;22(1):45. doi: 10.1186/s12904-023-01164-x.
29. Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop. Feudtner, Chris et al. Journal of Pain and Symptom Management, Volume 58, Issue 5, 909 - 917.e3.
2. Kaye EC, Weaver MS, DeWitt LH, Byers E, Stevens SE, Lukowski J, Shih B, Zalud K, Applegarth J, Wong HN, Baker JN, Ullrich CK; AAHPM Research Committee. The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review. J Pain Symptom Manage. 2021 May;61(5):1060-1079.e2. doi: 10.1016/j.jpainsymman.2020.12.003.
3. Chelazzi, C., Villa, G., Lanini, I. et al. The adult and pediatric palliative care: differences and shared issues. J Anesth Analg Crit Care 3, 1 (2023). https://doi.org/10.1186/s44158-023-00085-8
4. William B Ventres, Leslie A Stone, Johanna F Shapiro, Cynthia Haq, Jéssica R B Leão, Donald E Nease, Liz Grant, Stewart W Mercer, John C M Gillies, Pablo González Blasco, Maria Auxiliadora C De Benedetto, Graziela Moreto, Marcelo R Levites, Jennifer E DeVoe, William R Phillips, Jane M Uygur, Thomas R Egnew, Colette S Stanley, Storylines of family medicine V: ways of thinking—honing the therapeutic self, Family Medicine and Community Health, 12, Suppl 3, (e002792), (2024). https://doi.org/10.1136/fmch-2024-002792
5. Palliative care. World Health Organization. https://www.who.int/health-topics/palliative-care
6. Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, Hoydich ZP, Ikejiani DZ, Klein-Fedyshin M, Zimmermann C, Morton SC, Arnold RM, Heller L, Schenker Y. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA. 2016 Nov 22;316(20):2104-2114. doi: 10.1001/jama.2016.16840.
7. Lo DS, Hein N, Bulgareli JV. Pediatric palliative care and end-of-life: a systematic review of economic health analyses. Rev Paul Pediatr. 2022 Jan 5;40:e2021002. doi: 10.1590/1984-0462/2022/40/2021002.
8. Chong PH, De Castro Molina JA, Teo K, Tan WS. Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program. BMC Palliat Care. 2018 Jan 3;17(1):11. doi: 10.1186/s12904-017-0267-z.
9. Peláez Cantero MJ, Morales Asencio JM, Navarro Marchena L, Velázquez González MDR, Sánchez Echàniz J, Rubio Ortega L, Martino Alba R. End of life in patients under the care of paediatric palliative care teams. Multicentre observational study. An Pediatr (Engl Ed). 2021 Jul 21:S1695-4033(21)00222-8. Spanish. doi: 10.1016/j.anpedi.2021.06.012.
10. Bertaud, S., Brightley, G., Crowley, N. et al. Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children’s palliative care service over 14 years. BMC Palliat Care 22, 177 (2023). https://doi.org/10.1186/s12904-023-01302-5
11. Bolognani M, Morelli PD, Scolari I, Dolci C, Fiorito V, Uez F, Graziani S, Stefani B, Zeni F, Gobber G, Bravi E, Tateo S, Soffiati M. Development of a Perinatal Palliative Care Model at a Level II Perinatal Center Supported by a Pediatric Palliative Care Network. Front Pediatr. 2021 Jan 15;8:574397. doi: 10.3389/fped.2020.574397.
12. Salins N, Hughes S, Preston N. Palliative Care in Paediatric Oncology: an Update. Curr Oncol Rep. 2022 Feb;24(2):175-186. doi: 10.1007/s11912-021-01170-3.
13. Pediatric Palliative Care in Oncology: Basic Principles. by Franca Benini 1,*ORCID,Irene Avagnina 1,Luca Giacomelli 2,Simonetta Papa 2,Anna Mercante 3 and Giorgio Perilongo 3. Cancers 2022, 14(8), 1972; https://doi.org/10.3390/cancers14081972.
14. Maggie M. Rogers, MPH; Sarah Friebert, MD; Conrad S.P. Williams, MD; Lisa Humphrey, MD; Rachel Thienprayoon, MD, MSCS; Jeffrey C. Klick, MD. Pediatric Palliative Care Programs in US Hospitals (2021) 148 (1): e2020021634. https://doi.org/10.1542/peds.2020-021634.
15. Ghoshal A, Salins N, Damani A, Deodhar J, Muckaden M. Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit. Indian J Palliat Care. 2016 Jul-Sep;22(3):266-73. doi: 10.4103/0973-1075.185031.
16. Pediatric palliative care in the community. Erica C. Kaye MD, Jared Rubenstein MD, Deena Levine MD, Justin N. Baker MD, Devon Dabbs BBA, Sarah E. Friebert MD. First published: 07 May 2015 https://doi.org/10.3322/caac.21280
17. Wager, J., Kubek, L.A., Brenner, M. et al. Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care. BMC Palliat Care 21, 185 (2022). https://doi.org/10.1186/s12904-022-01078-0
18. Riera-Negre L, Hidalgo-Andrade P, Rosselló MR, Verger S. Exploring critical factors in pediatric palliative care in Latin America: A scoping review. Glob Public Health. 2024 Jan;19(1):2306473. doi: 10.1080/17441692.2024.2306473.
19. Grüneberg ES, Ramos-Guerrero J, Pastrana T. Challenges in the Provision of Pediatric Palliative Care in Mexico: A Cross-Sectional Web-Based Survey. J Palliat Care. 2024 Jan;39(1):58-67. doi: 10.1177/08258597211062767.
20. Ruiz-Gil T, Ródenas-Rigla F. Quality of Care in Pediatric Palliative Care: A Scoping Review. Children (Basel). 2023 Dec 13;10(12):1922. doi: 10.3390/children10121922.
21. Zhang A, Bing L, Mi Q, Zhou F, Wang J. Pediatric Palliative Care for Children with Cancer in a Children's Tertiary Hospital in China: Six-Year Experience of a Pediatric Palliative Care Service. Palliat Med Rep. 2021 Jan 6;2(1):1-8. doi: 10.1089/pmr.2020.0030.
22. Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships Khaliah A. Johnson, MD, FAAP; Alexis Morvant, MD, FAAP; Kristin James, LCPC; Lisa C. Lindley, PhD, RN, FPCN, FAAN. Pediatrics (2021) 148 (5): e2021049968. https://doi.org/10.1542/peds.2021-049968
23. Stoesslein S, Gramm JD, Bender HU, Müller P, Rabenhorst D, Borasio GD, Führer M. "More life and more days"-patient and care characteristics in a specialized acute pediatric palliative care inpatient unit. Eur J Pediatr. 2023 Apr;182(4):1847-1855. doi: 10.1007/s00431-023-04813-8.
24. Análisis descriptivo de la sedación paliativa en una Unidad de Cuidados Paliativos Pediátricos. Descriptive analysis of palliative sedation in a pediatric palliative care unit. panelIñigo de Noriega a, Manuel Rigal Andrés b, Ricardo Martino Alba b. Anales de Pediatría, Volume 96, Issue 5, 2022, Pages 385-393, ISSN 1695-4033, https://doi.org/10.1016/j.anpedi.2021.01.005.
25. Children with medical complexity and pediatric palliative care: Data by a respiratory intermediate care unit. Serena Caggiano MD, Martino Pavone MD, Claudio Cherchi MD, Maria Giovanna Paglietti MD, Alessandra Schiavino MD, Francesca Petreschi MD, Maria Beatrice Chiarini Testa MD, Renato Cutrera MD, PhD … See fewer authors . First published: 12 December 2022 https://doi.org/10.1002/ppul.26278
26. Divisic A, Avagnina I, De Tommasi V, Santini A, Brogelli L, Giacomelli L, Benini F. The use of medical cannabis in pediatric palliative care: a case series. Ital J Pediatr. 2021 Nov 21;47(1):229. doi: 10.1186/s13052-021-01179-1.
27. The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis. Anna Santini,corresponding author 1 , * Irene Avagnina, 1 Anna Marinetto, 1 Valentina De Tommasi, 1 Pierina Lazzarin, 1 Giorgio Perilongo, 2 and Franca Benini. Front Psychol. 2022; 13: 858812. doi: 10.3389/fpsyg.2022.858812
28. Avagnina I, Santini A, Maghini I, Salamon E, Papa S, Giacomelli L, Perilongo G, Agosto C, Benini F. A pilot study on sports activities in pediatric palliative care: just do it. BMC Palliat Care. 2023 Apr 19;22(1):45. doi: 10.1186/s12904-023-01164-x.
29. Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop. Feudtner, Chris et al. Journal of Pain and Symptom Management, Volume 58, Issue 5, 909 - 917.e3.