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Original article

Vol. 153 No. 12 (2023)

The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities

  • Stefan Mitterer
  • Karin Zimmermann
  • Günther Fink
  • Michael Simon
  • Anne-Kathrin Gerber
  • Eva Bergsträsser
DOI
https://doi.org/10.57187/s.3498
Cite this as:
Swiss Med Wkly. 2023;153:3498
Published
08.12.2023

Summary

BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce.

AIMS: The present study’s first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably.

METHODS: A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC.

RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients.

CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.

References

  1. Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012 Apr;129(4):e923–9. 10.1542/peds.2011-2846 DOI: https://doi.org/10.1542/peds.2011-2846
  2. Fraser LK, Gibson-Smith D, Jarvis S, Norman P, Parslow RC. Estimating the current and future prevalence of life-limiting conditions in children in England. Palliat Med. 2021 Oct;35(9):1641–51. 10.1177/0269216320975308 DOI: https://doi.org/10.1177/0269216320975308
  3. Jennessen S, Burgio NM. Erhebung der Prävalenz von Kindern und Jugendlichen mit lebensbedrohlichen und lebensverkürzenden Erkrankungen in Deutschland (PraeKids). 2022. https://doi.org/10.18452/24740. accessed 08.11.2022. https://edoc.hu-berlin.de/handle/18452/25451
  4. Norman P, Fraser L. Prevalence of life-limiting conditions in children and young people in England: time trends by area type. Health Place. 2014 Mar;26:171–9. 10.1016/j.healthplace.2014.01.002 DOI: https://doi.org/10.1016/j.healthplace.2014.01.002
  5. Nageswaran S, Hurst A, Radulovic A. Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis. Am J Hosp Palliat Care. 2018 Apr;35(4):690–6. 10.1177/1049909117739852 DOI: https://doi.org/10.1177/1049909117739852
  6. Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, et al. Redefining Palliative Care-A New Consensus-Based Definition. J Pain Symptom Manage. 2020 Oct;60(4):754–64. 10.1016/j.jpainsymman.2020.04.027 DOI: https://doi.org/10.1016/j.jpainsymman.2020.04.027
  7. World Health Organization. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers. 2018. pp. 5–9. [], https://apps.who.int/iris/handle/10665/274561
  8. Gesundheitsobservatorium S. Gesundheit in der Schweiz - Kinder, Jugendliche und junge Erwachsene: Nationaler Gesundheitsbericht 2020. 2020: p. 323. accessed 29.03.2022. https://www.bfs.admin.ch/bfs/de/home.assetdetail.14147105.html
  9. Amstad H. Palliative Care für vulnerable Patientengruppen: Konzept zuhanden der Plattform Palliative Care des Bundesamtes für Gesundheit. 2020. accessed 14.04.2022. https://www.plattform-palliativecare.ch/arbeiten/zugang-zu-palliative-care-fuer-vulnerable-gruppen-verbessern
  10. Bundesamt für Gesundheit und Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und -direktoren, Rahmenkonzept Palliative Care Schweiz. Eine definitorische Grundlage für die Umsetzung der «Nationalen Strategie Palliative Care». 2014. accessed 09.01.2023. https://www.bag.admin.ch/bag/de/home/strategie-und-politik/nationale-gesundheitsstrategien/strategie-palliative-care/grundlagen-zur-strategie-palliative-care/rahmenkonzept-palliative-care.html
  11. Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. J Pain Symptom Manage. 2022 May;63(5):e529–43. 10.1016/j.jpainsymman.2021.12.031 DOI: https://doi.org/10.1016/j.jpainsymman.2021.12.031
  12. Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics. 2013 Dec;132(6):1063–70. 10.1542/peds.2013-1286 DOI: https://doi.org/10.1542/peds.2013-1286
  13. Bergsträsser E, Abbruzzese R, Marfurt K, and Hošek M, Konzept Pädiatrische Palliative Care University Children’s Hospital Zurich. 2010. Version 2015. accessed 17.10.2022. https://docplayer.org/29201365-Konzept-paediatrische-palliative-care-autoren-palliative-care-pd-dr-med-eva-bergstraesser-und-ppc-team.html
  14. Wächter M, Bommer A. Mobile Palliative-Care-Dienste in der Schweiz - Eine Bestandsaufnahme aus der Perspektive dieser Anbieter. 2014. accessed 21.09.2021. https://www.palliative.ch/de/fachbereich/aktuell/grundlagendokumente/
  15. Bundesamt für Gesundheit und Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und -direktoren, Nationale Strategie Palliative Care 2010–2012. 2009. accessed 12.01.2022. https://www.bag.admin.ch/dam/bag/de/dokumente/nat-gesundheitsstrategien/strategie-palliative-care/nationale-strategie-palliative-care-2010-2012.pdf.download.pdf/10_D_Nationale_Strategie_Palliative_Care_2010-2012.pdf
  16. Furrer MT, Grünig A, Coppex P. Finanzierung der Palliative-Care-Leistungen der Grundversorgung und der spezialisierten Palliative Care (ambulante Pflege und Langzeitpflege). 2013. accessed 06.08.2021. https://www.bag.admin.ch/bag/de/home/strategie-und-politik/nationale-gesundheitsstrategien/strategie-palliative-care/versorgung-und-finanzierung-in-palliative-care/finanzierung-der-palliative-care.html
  17. Liechti L, Künzi K. Stand und Umsetzung von Palliative Care in den Kantonen: Ergebnisse der Befragung der Kantone und Sektionen von palliative ch 2018. 2019. accessed 06.08.2021. https://www.bag.admin.ch/bag/de/home/strategie-und-politik/nationale-gesundheitsstrategien/strategie-palliative-care/grundlagen-zur-strategie-palliative-care/befragung-der-kantone-zu-palliative-care.html
  18. De Pietro C, Camenzind P, Sturny I, Crivelli L, Edwards-Garavoglia S, Spranger A, et al. Switzerland: health system review. Health Syst Transit. 2015;17(4):1–288.
  19. Bundesamt für Gesundheit. Health insurance: Co-payment for persons resident in Switzerland. 2020 accessed 14.01.2022; Available from: https://www.bag.admin.ch/bag/en/home/versicherungen/krankenversicherung/krankenversicherung-versicherte-mit-wohnsitz-in-der-schweiz/praemien-kostenbeteiligung/kostenbeteiligung.html
  20. Invalidenversicherung, Leistungen der Invalidenversicherung (IV) für Kinder und Jugendliche. 2022. 4.16-22/01-D. accessed 14.01.2022. https://www.ahv-iv.ch/p/4.16.d
  21. Bundesgesetz über die Invalidenversicherung. Art. 14 Kostenvergütung für stationäre Behandlungen. 1959 (01.01.2022). accessed 14.01.2022. https://www.fedlex.admin.ch/eli/cc/1959/827_857_845/de
  22. Groeneveld EI, Cassel JB, Bausewein C, Csikós Á, Krajnik M, Ryan K, et al. Funding models in palliative care: lessons from international experience. Palliat Med. 2017 Apr;31(4):296–305. 10.1177/0269216316689015 DOI: https://doi.org/10.1177/0269216316689015
  23. Feudtner C, Faerber JA, Rosenberg AR, Kobler K, Baker JN, Bowman BA, et al. Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey. J Pain Symptom Manage. 2021 Sep;62(3):593–8. 10.1016/j.jpainsymman.2021.01.007 DOI: https://doi.org/10.1016/j.jpainsymman.2021.01.007
  24. Earp JA, Ennett ST. Conceptual models for health education research and practice. Health Educ Res. 1991 Jun;6(2):163–71. 10.1093/her/6.2.163 DOI: https://doi.org/10.1093/her/6.2.163
  25. Brady SS, Brubaker L, Fok CS, Gahagan S, Lewis CE, Lewis J, et al.; Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium. Development of Conceptual Models to Guide Public Health Research, Practice, and Policy: Synthesizing Traditional and Contemporary Paradigms. Health Promot Pract. 2020 Jul;21(4):510–24. 10.1177/1524839919890869 DOI: https://doi.org/10.1177/1524839919890869
  26. Deber R, Hollander MJ, Jacobs P. Models of funding and reimbursement in health care: a conceptual framework. Can Public Adm. 2008;51(3):381–405. 10.1111/j.1754-7121.2008.00030.x DOI: https://doi.org/10.1111/j.1754-7121.2008.00030.x
  27. Bowen GA. Document analysis as a qualitative research method. Qual Res J. 2009;9(2):27–40. 10.3316/QRJ0902027 DOI: https://doi.org/10.3316/QRJ0902027
  28. Dalglish SL, Khalid H, McMahon SA. Document analysis in health policy research: the READ approach. Health Policy Plan. 2021 Feb;35(10):1424–31. 10.1093/heapol/czaa064 DOI: https://doi.org/10.1093/heapol/czaa064
  29. Okoli C, Pawlowski SD. The Delphi method as a research tool: an example, design considerations and applications. Inf Manage. 2004;42(1):15–29. 10.1016/j.im.2003.11.002 DOI: https://doi.org/10.1016/j.im.2003.11.002
  30. Dalkey N, Helmer O. An experimental application of the Delphi method to the use of experts. Manage Sci. 1963;9(3):458–67. 10.1287/mnsc.9.3.458 DOI: https://doi.org/10.1287/mnsc.9.3.458
  31. Barrett D, Heale R. What are Delphi studies? Evid Based Nurs. 2020 Jul;23(3):68–9. 10.1136/ebnurs-2020-103303 DOI: https://doi.org/10.1136/ebnurs-2020-103303
  32. Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000 Oct;32(4):1008–15. 10.1046/j.1365-2648.2000.t01-1-01567.x DOI: https://doi.org/10.1046/j.1365-2648.2000.t01-1-01567.x
  33. Loughlin KG, Moore LF. Using Delphi to achieve congruent objectives and activities in a pediatrics department. J Med Educ. 1979 Feb;54(2):101–6. 10.1097/00001888-197902000-00006 DOI: https://doi.org/10.1097/00001888-197902000-00006
  34. Whitman NI. The committee meeting alternative. Using the Delphi technique. J Nurs Adm. 1990;20(7-8):30–6. 10.1097/00005110-199007000-00008 DOI: https://doi.org/10.1097/00005110-199007000-00008
  35. McKenna HP. The Delphi technique: a worthwhile research approach for nursing? J Adv Nurs. 1994 Jun;19(6):1221–5. 10.1111/j.1365-2648.1994.tb01207.x DOI: https://doi.org/10.1111/j.1365-2648.1994.tb01207.x
  36. Diamond IR, Grant RC, Feldman BM, Pencharz PB, Ling SC, Moore AM, et al. Defining consensus: a systematic review recommends methodologic criteria for reporting of Delphi studies. J Clin Epidemiol. 2014 Apr;67(4):401–9. 10.1016/j.jclinepi.2013.12.002 DOI: https://doi.org/10.1016/j.jclinepi.2013.12.002
  37. Degen E, Liebig B, Reeves E, Schweighoffer R. Palliative Care in der Schweiz. Die Perspektive der Leistungserbringenden. 2020. accessed 13.08.2021. https://www.palliative.ch/fileadmin/user_upload/palliative/fachwelt/B_Aktuell/200608_Palliative_Care_in_der_Schweiz_-_die_Perspektive_der_Leistungserbringenden.pdf
  38. Bundesamt für Gesundheit und Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und -direktoren, Stand und Umsetzung von Palliative Care in den Kantonen Ende 2011. 2012. accessed 21.09.2021. https://www.bag.admin.ch/bag/de/home/suche.html#kantone%20stand%20umsetzung%20palliative%20care%202012
  39. Wyss N, Coppex P. Stand und Umsetzung von Palliative Care in den Kantonen 2013. 2013. accessed 21.09.2021. https://www.bag.admin.ch/bag/de/home/suche.html#kantone%20stand%20umsetzung%20palliative%20care%202012
  40. Bundesamt für Gesundheit und Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und -direktoren, Nationale Strategie Palliative Care 2013–2015. 2012. accessed 13.08.2021. https://www.bag.admin.ch/bag/de/home/strategie-und-politik/nationale-gesundheitsstrategien/strategie-palliative-care.html#-163315092
  41. Bundesamt für Gesundheit. Bessere Betreuung und Behandlung von Menschen am Lebensende: Bericht des Bundesrates in Erfüllung des Postulates 18.3384 der Kommission für soziale Sicherheit und Gesundheit des Ständerats (SGK-SR) vom 26. April 2018. 2020. accessed 06.08.2021. https://www.bag.admin.ch/dam/bag/de/dokumente/cc/bundesratsberichte/2020/bessere-betreuung-am-lebensende.pdf.download.pdf/200918_Bericht_Po_183384_Lebensende.pdf
  42. Franziska S. Das SwissDRG-System und die Finanzierung der palliativmedizinischen Versorgung. palliative ch - Finanzierung, 2016. 2-2016. accessed 13.08.2021. https://www.palliative.ch/de/fachbereich/zeitschrift/archiv/
  43. Gudat H. Ist das Vergütungssystem der SwissDRG AG für spezialisierte Palliative Care geeignet? Die Pro-Position. palliative ch - Finanzierung, 2016. 02-2016. accessed 13.08.2021. https://www.palliative.ch/de/fachbereich/zeitschrift/archiv/
  44. Borasio GD. Ist das Vergütungssystem der SwissDRG AG für spezialisierte Palliative Care geeignet? Die Kontra-Position. palliative ch - Finanzierung, 2016. 2-2016. accessed 13.08.2021. https://www.palliative.ch/de/fachbereich/zeitschrift/archiv/
  45. Swiss DR. Beschluss des Verwaltungsrats der SwissDRG AG: Abbildung der palliativmedizinischen Behandlung im SwissDRG Tarifsystem. 2016. accessed 13.08.2021. https://www.swissdrg.org/de/ueber-uns/verwaltungsrat/kommunikation
  46. Gudat H. Der Wert des Lebensendes: am Beispiel der Finanzierung der stationären spezialisierten Palliative Care in der Schweiz. Ther Umsch. 2018 Jul;75(2):127–34. 10.1024/0040-5930/a000978 DOI: https://doi.org/10.1024/0040-5930/a000978
  47. Pelant D, McCaffrey T, Beckel J. Development and implementation of a pediatric palliative care program. J Pediatr Nurs. 2012 Aug;27(4):394–401. 10.1016/j.pedn.2011.06.005 DOI: https://doi.org/10.1016/j.pedn.2011.06.005
  48. Motion 20.4264. Für eine angemessene Finanzierung der Palliative Care. 2020. accessed 13.10.2022. https://www.parlament.ch/de/ratsbetrieb/suche-curia-vista/geschaeft?AffairId=20204264
  49. Pirson M, Dramaix M, Leclercq P, Jackson T. Analysis of cost outliers within APR-DRGs in a Belgian general hospital: two complementary approaches. Health Policy. 2006 Mar;76(1):13–25. 10.1016/j.healthpol.2005.04.008 DOI: https://doi.org/10.1016/j.healthpol.2005.04.008
  50. Cots F, Mercadé L, Castells X, Salvador X. Relationship between hospital structural level and length of stay outliers. Implications for hospital payment systems. Health Policy. 2004 May;68(2):159–68. 10.1016/j.healthpol.2003.09.004 DOI: https://doi.org/10.1016/j.healthpol.2003.09.004
  51. Mehra T, Müller CT, Volbracht J, Seifert B, Moos R. Predictors of High Profit and High Deficit Outliers under SwissDRG of a Tertiary Care Center. PLoS One. 2015 Oct;10(10):e0140874. 10.1371/journal.pone.0140874 DOI: https://doi.org/10.1371/journal.pone.0140874
  52. Baumann F, Hebert S, Rascher W, Woelfle J, Gravou-Apostolatou C. Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care. Children (Basel). 2021 Jun;8(6):523. 10.3390/children8060523 DOI: https://doi.org/10.3390/children8060523
  53. Haines ER, Frost AC, Kane HL, Rokoske FS. Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature. Cancer. 2018 Jun;124(11):2278–88. 10.1002/cncr.31265 DOI: https://doi.org/10.1002/cncr.31265
  54. Williams-Reade J, Lamson AL, Knight SM, White MB, Ballard SM, Desai PP. Paediatric palliative care: a review of needs, obstacles and the future. J Nurs Manag. 2015 Jan;23(1):4–14. 10.1111/jonm.12095 DOI: https://doi.org/10.1111/jonm.12095

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