Basic aspects of pediatric palliative care
DOI:
https://doi.org/10.15574/PP.2019.79.40Keywords:
pediatrics palliative care, palliative care groups, death trajectory, basic symptoms, pain, integrated three level model, holistic approachAbstract
Main components of pediatric palliative care (PPC) and features of its render of service were reviewed in the article. Eleven categories of state which cased requirements in palliative care were presented. It is established that the most great contribution belongs for congenital anomalies, perinatal states, protein-energy malnutrition, meningitis and HIV/AIDS. Pediatric palliative group distinguishes with high heterogeneity due to wide age range; broad spectrum of nosology including rare diseases; difference in needs depending from age and development in ambulance, in hospital and at home environment. The definition of PPC and its aim were presented according of terminology of WHO, guiding palliative charities and a charter for the rights of the dying child. It is focused that differences of pediatrics palliative categories of states are based on child death trajectories and are responsible for needs in palliative services. Models of PPC and levels of providing, peculiarities of child hospice were discussed. The complete system of PPC is presented by an integrated three-level care: palliative approach, common palliative care, specialized palliative care. The features of PPC which were related with child, family, readiness of network of pediatrics institutions and training of physicians on the provision of palliative care for children were distinguished in details in the article. Also the peculiarity of PPC is the necessity of service coverage from the moment of determination of the diagnosis of incurable disease despite of predicted life span that must be provided at any site independently of model of health care institution and so long as needed and a start of palliative care does not indicate the support only at the end of life and a refusal of fight. The main concepts of management of basic syndromes were distinguished, especially attention was paid to the importance of pain assessment, pain level and control bedrock principles. General holistic approach when organizing PPC makes it possible to use all the possibilities for support of child's energy with life-limiting disease.No conflict of interest were declared by the authors.
References
Benini F, Vecchi R, Orzalesi M. (2014). A charter for the rights of the dying child. The Lancet. 383 (9928): 1547–1548. https://doi.org/10.1016/S0140-6736(14)60746-7.
Bergstrasser E. (2018). Paediatric Palliative Care: What is different in children compared to adults? Ther Umsch. 75 (2): 101–104. https://doi.org/10.1024/0040-5930/a000973; PMid:30022726.
Chiaretti A, Pierri F, Valentini P et al. (2013). Current practice and recent advances in pediatric pain management. Eur Rev Med Pharmacol Sci. 17 (l): 112–126.
Connor SR, Downing J, Marston JJ. (2017). Estimating the global need for palliative care for children: A cross-sectional analysis. J Pain Symptom Manag. 53: 171–177. https://doi.org/10.1016/j.jpainsymman.2016.08.020; PMid:27765706.
Connor SR, M.C. Sepulveda Bermedo. (2014). Global Atlas of Palliative Care at the End of Life. Worldwide Palliative Care Alliance: London, UK: 111. URL: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.
Downing J, Boucher S, Daniels A et al. (2018). Paediatric Palliative Care in Resource-Poor Countries. Children. 5: 27–39. https://doi.org/10.3390/children5020027; PMid:29463065 PMCid:PMC5835996.
Drake R. (2018). Palliative Care for Children in Hospital: Essential Roles. Children. 5 (2): 26. https://doi.org/10.3390/children5020026; PMid:29463062 PMCid:PMC5835995.
Eccleston C, Palermo TM, Williams AC. et al. (2014). Psychological therapies for the management of chronic and recurrent pain in children and adolescents. Cochrane Database Syst. Rev. 5. 5: CD003968. https://doi.org/10.1002/14651858.CD003968.pub4; PMCid:PMC5886855.
Feudtner C, Womer J, Augustin R et al. (2013). Pediatric palliative care programs in children's hospitals: A cross-sectional national survey. Pediatrics. 132: 1063–1070. https://doi.org/10.1542/peds.2013-1286; PMid:24190689
Friedrichsdorf SJ, Bruera E. (2018). Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive. Children. 5 (9): 120. https://doi.org/10.3390/children5090120; PMid:30200370 PMCid:PMC6162556.
Glaudemans JJ, Moll EP van Charante, Willems DL. (2015). Advance care planning in primary care, only for severely ill patients? A structured review. Fam Pract. 32 (1): 16–26. https://doi.org/10.1093/fampra/cmu074; PMid:25381010.
Hain R, Devins M, Hastings R, Noyes J. (2013). Paediatric palliative care: Development and pilot study of a «Directory» of life-limiting conditions. J BMC Palliat Care. 12: 43. https://doi.org/10.1186/1472-684X-12-43; PMid:24330676 PMCid:PMC4029745
Harrop EJ, Brombley K, Boyce K (2017). Fifteen minute consultation: Practical pain management in paediatric palliative care. Arch Dis Child. 102: 239–243. https://doi.org/10.1136/archdischild-2016-312522; PMid:28487434
Hauer J, Houtrow AJ (2017). Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System. Pediatrics. 139 (6): e20171002. https://doi.org/10.1542/peds.2017-1002; PMid:28562301.
Hauer J, Jones BL. (2019). Evaluation and management of pain in children. UpToDate. URL: https://www.uptodate.com/contents/evaluation-and-management-of-pain-in-children.
Hickman SE, Keevern E, Hammes BJ. (2015). Use of the physician orders for life-sustaining treatment program in the clinical setting: a systematic review of the literature. J Am Geriatr Soc. 63 (2): 341–350. https://doi.org/10.1111/jgs.13248; PMid:25644280.
Higgins KS, Birnie KA, Chambers CT et al. (2015). Offspring of parents with chronic pain: A systematic review and meta-analysis of pain, health, psychological, and family outcomes. Pain. 156: 2256–2266. https://doi.org/10.1097/j.pain.0000000000000293; PMid:26172553 PMCid:PMC4607610
Hobson A, Wiffen PJ, Conlon JA. (2015). As required versus fixed schedule analgesic administration for postoperative pain in children. Cochrane Database Syst Rev. 26; (2): CD011404. https://doi.org/10.1002/14651858.CD011404.pub2; PMid:25719451 PMCid:PMC6464683.
Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers. (2018). Geneva: World Health Organization: 96.
Knaul F.M. Farmer P.E., Krakauer E.L. et al. Commission on Palliative Care and Pain Relief Study Group Alleviating the access abyss in palliative care and pain relief: an imperative of universal health coverage (2018). On behalf of the Lancet. Lancet.. 391 (10128): 1391–1454. https://doi.org/10.1016/S0140-6736(17)32513-8.
Lassetter JH. (2006). The effectiveness of complementary therapies on the pain experience of hospitalized children. J Holist Nurs. 24: 196–208. https://doi.org/10.1177/0898010106289838; PMid:16880417
Lotz JD, Jox RJ, Borasio GD, Fuhrer M. (2013). Pediatric advance care planning: a systematic review. Pediatrics. 131. 3: 873–880. https://doi.org/10.1542/peds.2012-2394; PMid:23400610.
Mack JW, Wolfe J. (2016). Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr. Opin. Pediatr. 18: 10–14. https://doi.org/10.1097/01.mop.0000193266.86129.47; PMid:16470155
Malcolm C, Hain R, Gibson F et al. (2012). Challenging symptoms in children with rare life-limiting conditions: Findings from a prospective diary and interview study with families. Acta Paediatr. 101: 985–992. https://doi.org/10.1111/j.1651-2227.2012.02680.x; PMid:22452449
Mazur A, Radziewicz WI, Szczepanski T. (2013). Pain management in children. Ann Agricult Environ Medicine. 20. 1: 28–34.
Odell S, Logan DE. (2013). Pediatric pain management: the multidisciplinary approach. J Pain Res. 6: 785–790. https://doi.org/10.2147/JPR.S37434; PMid:24250232 PMCid:PMC3829620
Palliative and End-of-life Care: Alberta Health Services. (2014). Provincial Framework: 57.
Rietjens JA, Sudore RL, Connolly M et al. (2017). Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 18: 543–551. https://doi.org/10.1016/S1470-2045(17)30582-X.
Steele R, Siden H, Cadell S et al. (2014). Charting the territory: Symptoms and functional assessment in children with progressive, non-curable conditions. Arch Dis Child. 99: 754-762. https://doi.org/10.1136/archdischild-2013-305246; PMid:24833792
Together for Short Lives. Children's Palliative Care Definitions. URL: http://www.togetherforshortlives.org.uk/professionals/childrens–palliative_care_essentials/definitions.
Walco GA, Goldschneider KR (eds). (2008). Pain in Children: A Practical Guide for Primary Care.Springer Science & Business Media: 279. https://doi.org/10.1007/978-1-59745-476-6
Weaver M, Carter B, Keefer P et al. (2016). Essentials: Pediatric palliative care and hospice. Glenview IL: American Academy of Hospice and Palliative Medicine.
WHO Definition of Palliative Care for Children. URL: www.who.int/cancer/palliative/definition/en.
WHO Model List of Essential Medicines (20th list). (2017). Geneva: World Health Organization. URL: http://www.who.int/medicines/publications/essentialmedicines/en.
Wood F, Simpson S, Barnes E, Hain R. (2010). Disease trajectories and ACT/ RCPCH categories in paediatric palliative care. 24: 796–806. https://doi.org/10.1177/0269216310376555; PMid:20719816
Wren A, Ross A, D'Souza G et al. (2019). Multidisciplinary Pain Management for Pediatric Patients with Acute and Chronic Pain: A Foundational Treatment Approach When Prescribing Opioids. Children. 6 (2): 33. https://doi.org/10.3390/children6020033; PMid:30795645 PMCid:PMC6406753.
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