Integrating Palliative Care by Virtue of Diplomacy; A Cross-sectional Group Interview Study of the Roles and Attitudes of Palliative Care Professionals to Further Integrate Palliative Care in Europe

Document Type : Original Article

Authors

1 Department of IQ healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

2 Erasmus School of Health Policy & Management, Health Service Management and Organisation, Erasmus University Rotterdam, Rotterdam, The Netherlands

3 International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster, UK

4 Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany

5 Department of Radiation-Oncology and Palliative Medicine, University Hospital Gasthuisberg, Leuven, Belgium

6 Faculty of Medicine, Institute of Family Medicine, University of Pécs Medical School, Pécs, Hungary

7 Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

Abstract

Background
Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Europe choose different structures to integrate care, they face similar challenges when it comes to creating trust and aligning visions, cultures and professional values. This paper sets out to answer the following research question: what roles and attitudes do palliative care professionals need to adopt to further integrate palliative care in Europe?
 
Methods
As part of the European Union (EU)-funded research project InSup-C (Integrated Supportive and Palliative Care). (2012-2016), 19 semi-structured group interviews with 136 (palliative) care professionals in 5 European countries (Germany, the United Kingdom, Belgium, the Netherlands, Hungary) were conducted. A thematic analysis was conducted.
 
Results
Integration of palliative care calls for diplomatic professionals that can bring a cultural shift: to get palliative care, with its particular focus on the four dimensions (physical, psychological, social, spiritual), integrated into historically established medical procedures and guidelines. This requires (a) to find an entrance (for telling a normative story), and (b) to maintain and deepen relationships (in order to build trust). It means using the appropriate words and sending a univocal team message to patients and being grateful, modest, and aiming for a quiet revolution with curation oriented healthcare professionals.
 
Conclusion
Diplomacy appears to be essential to palliative care providers for realizing trust and what can be defined as normative integration between palliative and curative and/or chronic medicine. It requires a practical wisdom about the culture and goals of regular care, as well as keeping a middle road between assimilating with values in regular medicine and standing up for the basic values central to palliative care.

Keywords


  1. World Health Organization (WHO). WHO Definition of Palliative Care. WHO; 2019.
  2. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678
  3. Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721-1730. doi:10.1016/s0140-6736(13)62416-2
  4. Ewert B, Hodiamont F, van Wijngaarden J, et al. Building a taxonomy of integrated palliative care initiatives: results from a focus group. BMJ Support Palliat Care. 2016;6(1):14-20. doi:10.1136/bmjspcare-2014-000841
  5. Janse B, Huijsman R, Fabbricotti IN. A quasi-experimental study of the effects of an integrated care intervention for the frail elderly on informal caregivers' satisfaction with care and support. BMC Health Serv Res. 2014;14:140. doi:10.1186/1472-6963-14-140
  6. Seamark D, Blake S, Brearley SG, et al. Dying at home: a qualitative study of family carers' views of support provided by GPs community staff. Br J Gen Pract. 2014;64(629):e796-803. doi:10.3399/bjgp14X682885
  7. van der Eerden M, Csikos A, Busa C, et al. Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study. BMC Palliat Care. 2014;13(1):52. doi:10.1186/1472-684x-13-52
  8. May P, Garrido MM, Cassel JB, et al. Prospective cohort study of hospital palliative care teams for inpatients with advanced cancer: earlier consultation is associated with larger cost-saving effect. J Clin Oncol. 2015;33(25):2745-2752. doi:10.1200/jco.2014.60.2334
  9. Raijmakers NJH, de Veer AJE, Zwaan R, Hofstede JM, Francke AL. Which patients die in their preferred place? a secondary analysis of questionnaire data from bereaved relatives. Palliat Med. 2018;32(2):347-356. doi:10.1177/0269216317710383
  10. Meeussen K, Van den Block L, Echteld MA, et al. End-of-life care and circumstances of death in patients dying as a result of cancer in Belgium and the Netherlands: a retrospective comparative study. J Clin Oncol. 2011;29(32):4327-4334. doi:10.1200/jco.2011.34.9498
  11. Fahy N, McKee M, Busse R, Grundy E. How to meet the challenge of ageing populations. BMJ. 2011;342:d3815. doi:10.1136/bmj.d3815
  12. Gardiner C, Gott M, Ingleton C. Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review. Br J Gen Pract. 2012;62(598):e353-362. doi:10.3399/bjgp12X641474
  13. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med. 2013;368(13):1173-1175. doi:10.1056/NEJMp1215620
  14. Clark D. Between hope and acceptance: the medicalisation of dying. BMJ. 2002;324(7342):905-907. doi:10.1136/bmj.324.7342.905
  15. Groeneveld EI, Cassel JB, Bausewein C, et al. Funding models in palliative care: lessons from international experience. Palliat Med. 2017;31(4):296-305. doi:10.1177/0269216316689015
  16. Janse B, Huijsman R, de Kuyper RD, Fabbricotti IN. Do integrated care structures foster processes of integration? a quasi-experimental study in frail elderly care from the professional perspective. Int J Qual Health Care. 2016;28(3):376-383. doi:10.1093/intqhc/mzw045
  17. den Herder-van der Eerden M, van Wijngaarden J, Payne S, et al. Integrated palliative care is about professional networking rather than standardisation of care: a qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries. Palliat Med. 2018;32(6):1091-1102. doi:10.1177/0269216318758194
  18. Randall F, Downie RS. The Philosophy of Palliative Care: Critique and Reconstruction. Oxford: Oxford University Press; 2006.
  19. Frey JH, Fontana A. The group interview in social research. Soc Sci J. 1991;28(2):175-187. doi:10.1016/0362-3319(91)90003-m
  20. Kitzinger J. Qualitative research. Introducing focus groups. BMJ. 1995;311(7000):299-302. doi:10.1136/bmj.311.7000.299
  21. den Herder-van der Eerden M, Ebenau A, Payne S, et al. Integrated palliative care networks from the perspectives of patients: a cross-sectional explorative study in five European countries. Palliat Med. 2018;32(6):1103-1113. doi:10.1177/0269216318756812
  22. den Herder-van der Eerden M, Hasselaar J, Payne S, et al. How continuity of care is experienced within the context of integrated palliative care: a qualitative study with patients and family caregivers in five European countries. Palliat Med. 2017;31(10):946-955. doi:10.1177/0269216317697898
  23. World Health Organization (WHO). WHO Definition of Palliative Care. WHO; 2018. http://www.who.int/cancer/palliative/definition/en/.  Accessed September 20, 2018.
  24. Valentijn PP, Schepman SM, Opheij W, Bruijnzeels MA. Understanding integrated care: a comprehensive conceptual framework based on the integrative functions of primary care. Int J Integr Care. 2013;13:e010. doi:10.5334/ijic.886
  25. van der Klauw D, Molema H, Grooten L, Vrijhoef H. Identification of mechanisms enabling integrated care for patients with chronic diseases: a literature review. Int J Integr Care. 2014;14:e024. doi:10.5334/ijic.1127
  26. Fabbricotti I. Taking care of integrated care: Integration and fragmentation in the development of integrated care arrangements. Int J Integr Care. 2007;7(1). doi:10.5334/ijic.179
  27. Braun V, Clarke V. What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Health Well-being. 2014;9:26152. doi:10.3402/qhw.v9.26152
  28. Corbin J, Strauss A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 3rd ed. Los Angeles, Calif: SAGE Publications; 2008.
  29. Morgan DL. Successful Focus Groups: Advancing the State of the Art. Newbury Park, Calif: SAGE Publications; 1993.
  30. Annas J. Being virtuous and doing the right thing. Proceedings and Addresses of the American Philosophical Association. 2004;78(2):61-75. doi:10.2307/3219725
  31. Whetstone JT. A framework for organizational virtue: the interrelationship of mission, culture and leadership. Bus Ethics. 2005;14(4):367-378. doi:10.1111/j.1467-8608.2005.00418.x
  32. Williams JP. Subcultural Theory: Traditions and Concepts. Cambridge, UK: Polity Press; 2011.
  33. Goddard M, Mason AR. Integrated care: a pill for all ills? Int J Health Policy Manag. 2017;6(1):1-3. doi:10.15171/ijhpm.2016.111
  34. Harvey G, Dollard J, Marshall A, Mittinty MM. Creating the right sort of ship to achieve integrated care: a response to recent commentaries. Int J Health Policy Manag. 2019;8(5):317-318. doi:10.15171/ijhpm.2019.04
  35. Harvey G, Dollard J, Marshall A, Mittinty MM. Achieving integrated care for older people: shuffling the deckchairs or making the system watertight for the future? Int J Health Policy Manag. 2018;7(4):290-293. doi:10.15171/ijhpm.2017.144
  36. Collins A, McLachlan SA, Philip J. Communication about palliative care: a phenomenological study exploring patient views and responses to its discussion. Palliat Med. 2018;32(1):133-142. doi:10.1177/0269216317735247
  37. Ateş G, Ebenau AF, Busa C, et al. "Never at ease" - family carers within integrated palliative care: a multinational, mixed method study. BMC Palliat Care. 2018;17(1):39. doi:10.1186/s12904-018-0291-7

Articles in Press, Corrected Proof
Available Online from 23 November 2020
  • Receive Date: 13 October 2019
  • Revise Date: 03 October 2020
  • Accept Date: 14 October 2020