Advances and Challenges in European Paediatric Palliative Care
Abstract
:1. Introduction
2. Key Aspects of Paediatric Palliative Care
- The number of children dying is small compared to adults, with many of the conditions being extremely rare, and many of the diagnoses specific to childhood.
- The time scale of children’s illnesses differs to that of adults. In children, palliative care may be required for only a few days, months or can in some cases extend over many years. Life-limiting conditions in children can be familial; therefore, they may affect more than one child in the family.
- The focus of care is not only the child, but it also embraces the whole family. Often parents are expected to become providers of healthcare for children with very complex needs, especially those who are technology-dependent. Paediatric palliative care can offer support in a situation where the parents and siblings are especially vulnerable.
- Despite a diagnosis of a life-limiting condition, the children continue to develop physically, emotionally and cognitively. Of particular concern are the child’s communication skills and their ability to understand their condition. Provision of education and play when a child is unwell is essential and education is a legal entitlement in many countries [2].
- Category 1:
- Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.Examples: Cancer, organ failures of heart, liver, kidney, transplant and children on long-term ventilation.
- Category 2:
- Conditions where premature death is inevitable, these may involve long periods of intensive disease-directed treatment aimed at prolonging life and allowing participation in normal activities. Children and young people in this category may be significantly disabled but have long periods of relatively good health.Examples: Cystic fibrosis, Duchenne muscular dystrophy and SMA Type 1.
- Category 3:
- Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.Examples: Batten disease, mucopolysaccharidoses and other severe metabolic conditions.
- Category 4:
- Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. Palliative care may be required at any stage and there may be unpredictable and periodic episodes of care.Examples: Severe cerebral palsy, complex disabilities such as following brain or spinal cord injury.
3. Service Development and Accessibility to Paediatric Palliative Care in Europe
4. Changing Populations
5. Communication and Decision Making with Children, Young People and Parents
6. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
- Feudtner, C.; Rosenberg, A.R.; Boss, R.D.; Wiener, L.; Lyon, M.E.; Hinds, P.S.; Bluebond-Langner, M.; Wolfe, J. 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. J. Pain Symptom Manag. 2019, 58, 909–917.e3. [Google Scholar] [CrossRef]
- A Guide to Children’s Palliative Care; Together for Short Lives: Bristol, UK, 2018.
- World Health Organization. WHO Definition of Palliative Care. 2011. Available online: http://www.who.int/cancer/palliative/definition/en/ (accessed on 7 April 2020).
- Noyes, J.; Edwards, R.T.; Hastings, R.P.; Hain, R.; Totsika, V.; Bennett, V.; Hobson, L.; Davies, G.; Humphreys, C.; Devins, M.; et al. Evidence-based planning and costing palliative care services for children: Novel multi-method epidemiological and economic exemplar. BMC Palliat. Care 2013, 12, 18. [Google Scholar] [CrossRef] [Green Version]
- International Association for Hospice and Palliative Care. Consensus-Based Definition of Palliative Care. 2018. Available online: https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/ (accessed on 10 September 2019).
- Arias-Casais, N.; Garralda, E.; Rhee, J.Y.; de Lima, L.; Pons-Izquierdo, J.J.; Clark, D.; Hasselaar, J.; Ling, J.; Mosoiu, D.; Centeno, C. EAPC Atlas of Palliative Care in Europe 2019; EAPC: Vilvoorde, Belgium, 2019. [Google Scholar]
- Levels and Trends in Child Mortality: Report 2017, Estimates Developed by the UN Inter-Agency Group for Child Mortality Estimation; United Nations Inter-Agency Group for Child Mortality Estimation (UN IGME): New York, NY, USA, 2017.
- Sidebotham, P.; Fraser, J.; Fleming, P.; Platt, M.W.; Hain, R. Patterns of child death in England and Wales. Lancet 2014, 384, 904–914. [Google Scholar] [CrossRef]
- Robinson, T.; Brown, H.; Norman, P.; Fraser, L.K.; Barr, B.; Bambra, C.L. The impact of New Labour’s English health inequalities strategy on geographical inequalities in infant mortality. J. Epidemiol. Commun. Health 2019, 73, 564–568. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- The Paediatric Intensive Care Audit Network (PICANet). Paediatric Intensive Care Audit Network Annual Report 2018; University of Leeds: Leeds, UK; University of Leicester: Leicester, UK, 2019. [Google Scholar]
- Plunkett, A.; Parslow, R.C. Is it taking longer to die in paediatric intensive care in England and Wales? Arch. Dis. Child. 2016, 101, 798–802. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Feudtner, C.; Friebert, S.; Jewell, J.; Friebert, S.; Carter, B.; Feudtner, C.; Hood, M.; Imaizumi, S.; Komatz, K.; Linebarger, J.; et al. Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. Pediatrics 2013, 132, 966–972. [Google Scholar]
- McDougall, C.M.; Adderley, R.J.; Wensley, D.F.; Seear, M. Long-term ventilation in children: Longitudinal trends and outcomes. Arch. Dis. Child. 2013, 98, 660–665. [Google Scholar] [CrossRef] [PubMed]
- Fox, D.; Campagna, E.J.; Friedlander, J.; Partrick, D.A.; Rees, D.I.; Kempe, A. National Trends and Outcomes of Pediatric Gastrostomy Tube Placement. J. Pediatr. Gastroenterol. Nutr. 2014, 59, 582–588. [Google Scholar] [CrossRef]
- Fraser, L.K.; Parslow, R. Children with life-limiting conditions in paediatric intensive care units: A national cohort, data linkage study. Arch. Dis. Child. 2017, 103, 540–547. [Google Scholar] [CrossRef] [Green Version]
- Finkel, R.S.; Mercuri, E.; Darras, B.; Connolly, A.; Kuntz, N.; Kirschner, J.; Chiriboga, C.A.; Saito, K.; Servais, L.; Tizzano, E.; et al. Nusinersen versus Sham Control in Infantile-Onset Spinal Muscular Atrophy. New Engl. J. Med. 2017, 377, 1723–1732. [Google Scholar] [CrossRef] [Green Version]
- Fraser, L.K.; Lidstone, V.; Miller, M.; Aldridge, J.; Norman, P.; McKinney, P.A.; Parslow, R.C. Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset. Palliat. Med. 2014, 28, 513–520. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Bluebond-Langner, M.; Beecham, E.; Candy, B.; Langner, R.; Jones, L. Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy. Palliat. Med. 2013, 27, 705–713. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Pollock, K. Is home always the best and preferred place of death? BMJ Br. Med. J. 2015, 351, h4855. [Google Scholar] [CrossRef] [PubMed]
- Bluebond-Langner, M.; Beecham, E.; Candy, B.; Langner, R.; Jones, L. Problems with preference and place of death for children too. BMJ 2015, 351, h6123. [Google Scholar] [CrossRef]
- Fraser, L.K.; Fleming, S.; Parslow, R.C. Changing place of death in children who died after discharge from paediatric intensive care units: A national, data linkage study. Palliat. Med. 2017, 32, 337–346. [Google Scholar] [CrossRef] [Green Version]
- Fraser, L.K.; Miller, M.; McKinney, P.A.; Parslow, R.C.; Feltbower, R. Referral to a specialist paediatric palliative care service in oncology patients. Pediatr. Blood Cancer 2010, 56, 677–680. [Google Scholar] [CrossRef]
- Harding, R. Children’s Palliative Care Outcome Scale. 2019. Available online: https://cordis.europa.eu/project/rcn/214364/factsheet/en (accessed on 1 October 2019).
- Horridge, K.A. Advance Care Planning: Practicalities, legalities, complexities and controversies. Arch. Dis. Child. 2014, 100, 380–385. [Google Scholar] [CrossRef] [Green Version]
- Feudtner, C. Ethics in the Midst of Therapeutic Evolution. JAMA Pediatr. 2008, 162, 854–857. [Google Scholar] [CrossRef]
- Bluebond-Langner, M.; Langner, R.; Clemente, I. Care of children with advanced illness. In Oxford Textbook of Palliative Medicine; Cherny, N., Fallon, M., Kaasa, S., Portenoy, R.K., Currow, D.C., Eds.; Oxford University Press: Oxford, UK, 2020. [Google Scholar]
- Bluebond-Langner, M.; Langner, R. Decision making in care and treatment of seriously ill children. In Oxford Textbook of Palliative Care for Children; Goldman, A., Rapoport, A., Meiring, M., Hain, R., Eds.; Oxford University Press: Oxford, UK, 2020. [Google Scholar]
- Hinds, P.S.; Oakes, L.L.; Hicks, J.; Powell, B.; Srivastava, D.K.; Spunt, S.L.; Harper, J.; Baker, J.N.; West, N.K.; Furman, W.L. “Trying to Be a Good Parent” As Defined By Interviews With Parents Who Made Phase I, Terminal Care, and Resuscitation Decisions for Their Children. J. Clin. Oncol. 2009, 27, 5979–5985. [Google Scholar] [CrossRef] [Green Version]
- American Academy of Pediatrics. Informed Consent, Parental Permission, and Assent in Pediatric Practice. Pediatrics 1995, 95, 314–317. [Google Scholar]
- Spinetta, J.J.; Masera, G.; Jankovic, M.; Oppenheim, D.; Martins, A.G.; Ben Arush, M.W.; Van Dongen-Melman, J.; Epelman, C.; Medin, G.; Pekkanen, K.; et al. Valid informed consent and participative decision-making in children with cancer and their parents: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr. Oncol. 2003, 40, 244–246. [Google Scholar] [CrossRef] [PubMed]
- Convention on the Rights of the Child; United Nations International Children’s Emergency Fund (UNICEF): London, UK, 1989.
- Day, E.; Jones, L.; Langner, R.; Bluebond-Langner, M. Current understanding of decision-making in adolescents with cancer: A narrative systematic review. Palliat. Med. 2016, 30, 920–934. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Coyne, I.; Amory, A.; Gibson, F.; Kiernan, G. Information-sharing between healthcare professionals, parents and children with cancer: More than a matter of information exchange. Eur. J. Cancer Care 2015, 25, 141–156. [Google Scholar] [CrossRef] [PubMed]
- Mclntosh, N.; Bates, P.; Brykcyznska, G.; Royal College of Pediatrics and Child Health: Ethics Advisory Committee. Guidelines for the ethical conduct of medical research involving children. Arch. Dis. Child. 2000, 82, 177–182. [Google Scholar]
- Ruhe, K.M.; Brancati-Badarau, O.; Brazzola, P.; Hengartner, H.; Elger, B.S.; Wangmo, T.; Swiss Pediatric Oncology Group (SPOG). Participation in pediatric oncology: Views of child and adolescent patients. Psycho Oncol. 2015, 25, 1036–1042. [Google Scholar] [CrossRef]
- Weaver, M.S.; Baker, J.N.; Gattuso, J.S.; Gibson, D.V.; Sykes, A.; Hinds, P.S. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer 2015, 121, 4416–4424. [Google Scholar] [CrossRef]
- Kelly, K.; Mowbray, C.; Pyke-Grimm, K.; Hinds, P.S. Identifying a conceptual shift in child and adolescent-reported treatment decision making: “Having a say, as I need at this time”. Pediatr. Blood Cancer 2016, 64, e26262. [Google Scholar] [CrossRef]
- Coyne, I.; Amory, A.; Kiernan, G.; Gibson, F. Children’s participation in shared decision-making: Children, adolescents, parents and healthcare professionals’ perspectives and experiences. Eur. J. Oncol. Nurs. 2014, 18, 273–280. [Google Scholar] [CrossRef] [Green Version]
- Hokkanen, H.; Eriksson, E.; Ahonen, O.; Salanterä, S. Adolescents with cancer: Experience of life and how it could be made easier. Cancer Nurs. 2004, 27, 325–335. [Google Scholar] [CrossRef]
- Bluebond-Langner, M.; Hargrave, D.; Henderson, E.M.; Langner, R. ‘I have to live with the decisions I make’: Laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses. Arch. Dis. Child. 2016, 102, 468–471. [Google Scholar] [CrossRef] [Green Version]
- Hauer, J. Caring for Children Who Have Severe Neurological Impairments; Johns Hopkins University Press: Baltimore, MD, USA, 2013. [Google Scholar]
- Dussel, V.; Kreicbergs, U.; Hilden, J.M.; Watterson, J.; Moore, C.; Turner, B.G.; Weeks, J.C.; Wolfe, J. Looking Beyond Where Children Die: Determinants and Effects of Planning a Child’s Location of Death. J. Pain Symptom Manag. 2009, 37, 33–43. [Google Scholar] [CrossRef] [PubMed]
- Kaye, E.C.; Kiefer, A.; Zalud, K.; Gattas, M.; Snyder, I.; Spraker-Perlman, H.; Baker, J.N. Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue. Pediatr. Blood Cancer 2018, 65, e27378. [Google Scholar] [CrossRef] [PubMed]
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Fraser, L.K.; Bluebond-Langner, M.; Ling, J. Advances and Challenges in European Paediatric Palliative Care. Med. Sci. 2020, 8, 20. https://doi.org/10.3390/medsci8020020
Fraser LK, Bluebond-Langner M, Ling J. Advances and Challenges in European Paediatric Palliative Care. Medical Sciences. 2020; 8(2):20. https://doi.org/10.3390/medsci8020020
Chicago/Turabian StyleFraser, Lorna K, Myra Bluebond-Langner, and Julie Ling. 2020. "Advances and Challenges in European Paediatric Palliative Care" Medical Sciences 8, no. 2: 20. https://doi.org/10.3390/medsci8020020
APA StyleFraser, L. K., Bluebond-Langner, M., & Ling, J. (2020). Advances and Challenges in European Paediatric Palliative Care. Medical Sciences, 8(2), 20. https://doi.org/10.3390/medsci8020020