Background Globally recommended in healthcare policy, Shared Decision- Making (SDM) is also central to international policy promoting community palliative care. Yet realities of implementation by multi-disciplinary healthcare professionals who provide end of life care in the home are unclear. Aim To explore multi-disciplinary healthcare professionals perceptions and experiences of Shared Decision-Making at end of life in the home.Design Qualitative design using focus groups, transcribed verbatim and analysed thematically.Setting/Participants A total of 43 participants, from multidisciplinary community-based services in one region of the UK were recruited.Results Whilst the rhetoric of Shared Decision-Making was recognised, its implementation was impacted by several interconnecting factors, including 1) conceptual confusion regarding Shared Decision-Making, 2) uncertainty in the process and 3) organisational factors which impeded Shared Decision-Making. Conclusions Multiple interacting factors influence implementation of Shared decision-making by professionals working in complex community settings at the end of life. Moving from rhetoric to reality, requires future work exploring the realities of Shared Decision-Making practice at individual, process and systems levels.
Bibliographical noteReference text: 1. Légaré F and Thompson-Leduc P. Twelve myths about shared decision making. Patient Educ Couns. 2014; 96 (3): 281-286. doi: 10.1016/j.pec.2014.06.014. Epub 2014 Jul 3.
2. Harter M, Elwyn G and van der Weijden T. Policy and Practice developments in the implementation of shared decision making: an international perspective. Z.Evid. Fortbild. Qual. Gesundh. Wesen (ZEFQ) 2011; 10: 229-233.
3. Frosch DL, Moulton BW, Wexler RM et al. Shared decision-making in the United States: Policy and implementation activity on multiple fronts. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen. 2011; 105(4): 305-312.
4. Department of Health. Liberating the NHS: An Information Revolution. 2011. London: DoH.
5. General Medical Council. Treatment and care towards the end-of-life: Good practice in decision-making. 2011. London: GMC.
6. Nursing and Midwifery Council. The Code: Standards of conduct, performance and ethics for nurses and midwives. http://www.nmc-uk.org/Documents/Standards/The-code-A4-20100406.pdf (2015, accessed 2 April, 2015).
7. National Youth Mental Health Foundation. Evidence Summary: Shared decision making (SDM) for mental health – what is the evidence? A Report by the Centre of Excellence in Youth Mental Health, http://www.headspace.org.au (2015, accessed, 1 July, 2015).
8. Charles C, Gafni A and Whelan T. Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science and Medicine 1997; 44(5): 681-692.
9. Makoul G and Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns 2006; 60(3): 301–312.
10. Barry MJ and Edgman-Levitan S. Shared decision making– the pinnacle of patient-centred care. N Engl J Med 2012; 366(9): 780–781.
11. National Health Service Right Care Shared Decision Making Programme and Capita Group. Measuring shared decision making: a review of research evidence, http://www.rightcare.nhs.uk/wp-content/uploads/2012/12/Measuring_Shared_Decision_Making_Dec12.pdf (2012, accessed 2 February 2013).
12. Addicott R and Dewar S. Improving choice at end-of-life: a descriptive analysis of the impact and costs of the Marie Curie delivering choice programme in Lincolnshire. 2008; London: King’s Fund.
13. Kane HL, Halpern MT, Squiers LB et al. Implementing and evaluating shared decision making in oncology practice. CA Cancer J Clin 2014; 64(6):377–88.
14. Légaré F, Stacey D, Brière N et al (2014). An interprofessional approach to shared decision making: an exploratory case study with family caregivers of one IP home care team. BMC Geriatrics 14:83 doi: 10.1186/1471-2318-14-83.
15. Elwyn G, Frosch D, Thomson R et al. Shared Decision Making: A Model for Clinical Practice. J Gen Intern Med 2012; 27(10):1361–7. doi: 10.1007/s11606-012-2077-6
16. Joseph-Williams N, Elwyn G and Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 2014; 94(3):291–309.
17. Légaré F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff. 2013; 32(2):276–84.
18. Gravel K, Legare F and Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals’ perceptions. Implement Sci 2006; 1: 16.
19. Belanger E, Rodriguez C and Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliative Medicine, 2011; 25: 242–261.
20. European Association for Palliative care. Promoting palliative care in the community: producing a toolkit to improve and develop primary palliative care in different countries internationally. Report of the European Association of Palliative Care (EAPC) Taskforce in Primary Palliative Care ISBN: 978-88-98472-06-2. http://www.eapcnet.eu (accessed 1August 2014).
21. Légaré F, Ratté S, Gravel K et al. Barriers and facilitators to implementing shared decision making in clinical practice: Update of a systematic review of health professionals' perceptions. Patient Educ Couns 2008; 73(3):526–35.
22. Belanger E, Rodriguez C, Groleau, D et al. Initiating decision making conversations in palliative care: An ethnographic discourse analysis. BMC Palliative Care 2014; 13: 63.
23. Peterson KJ. Shared decision making in health care settings: A role for social work. Soc Work Health Care 2012; 51(10): 894-908.
24. Stacey D, Legare F, Pouliot S et al. Shared decision-making models to inform an interprofessional perspective on decision-making: A theory analysis. Patient Educ Couns 2010; 80: 164-172.
25. Légaré F, Stacey D, Brière N et al. A conceptual framework for interprofessional shared decision making in home care: Protocol for a feasibility study. BMC Health Serv Res 2011; 11: 23. doi: 10.1186/1472-6963-11-23.
26. Dogba MJ, Menear M, Stacey D et al. The evolution of an interprofessional shared decision-making research program: Reflective case study of an emerging paradigm. International Journal of Integrated Care 2016;16(3):4. doi: http://doi.org/10.5334/ijic.2212.
27. Légaré F, Ratte S, Stacey D et al. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database Syst Rev. 2010(5):CD006732. doi: 10.1002/14651858.CD006732.pub2
28. Légaré F, Politi MC, Drolet R et al. Training health professionals in shared decision-making: An international environmental scan. Patient Education and Counseling 2012; 88 (2), 159-169.
29. Berger S, Braehler E, Ernst J. The health professional-patient-relationship in conventional versus complementary and alternative medicine. A qualitative study comparing the perceived use of medical shared decision-making between two different approaches of medicine. Patient Educ Couns 2012; 88(1):129–37.
30. Politi MC and Légare F. Physician’s reactions to uncertainty in the context of shared decision-making. Patient Educ Couns 2010; 80(2): 155-157.
31. Müller-Engelmann M, Keller H and Donner-Banzhoff N et al. Shared decision-making in medicine: the influence of situational treatment factors. Patient Educ Couns 2011; 82 (2): 240-246. 10.1016/j.pec.2010.04.028.
32. Pavlish C, Brown-Saltzman Km Fine A et al. A culture of avoidance: voices from inside ethically difficult clinical situations. Clin J Oncol Nurs 2015; 15(2):159-65. doi: 10.1188/15.CJON.19-02AP.
33. Burges-Watson D, Thomson RT and Murtagh MJ. Professional centred shared decision-making: Patient decision aids in practice in primary care. BMC Health Services Research 2008; 8:5.
34. Munday D, Petrova M. and Dale J. Exploring the experiences and perceptions of general practitioners and community nurses in discussing preferences for place of death with terminally ill patients. British Medical Journal 2009; 339: 2391.
35. Elit L, Charles C, Gold I, et al. Women’s perceptions about treatment decision-making for ovarian cancer. Gynecologic Oncology 2003; 88: 89-95.
36. Murray MH, O’Connor AM, Fiset V et al. Woman’s decision-making needs regarding place of care at end-of-life. Journal of Palliative Care 2003; 19(3): 176-184.
37. McGuire AL, McCullough LB, Weller SC, et al. Missed expectations? Physicians’ views of patients’ participation in medical decision-making. Med Care 2005; 43(5): 466–470.
38. Walczak A, Butow PN, Davidson PM et al. Patient perspectives regarding communication about prognosis and end-of-life issues: How can it be optimised? Patient Educ Couns 2013; 90: 307-314.
39. Elias, R. The broader social context of decisions: perspectives on shared decision-making in the multidisciplinary low clearance clinic. British Renal Society Making the Marginal Mainstream Conference 2009, http://www.britishrenal.org/Abstracts/Abstracts-2009.aspx (accessed 20th August 2016).
40. Stirling C, Lloyd B, Scott J et al. A qualitative study of professional and client perspectives on information flows and decision aid use. BMC Medical Informatics and Decision-making 2012; 12: 26.
41. Washington, KT, Oliver Parker D, Gage AL et al. A multi method analysis of shared decisions making in hospice interdisciplinary team meetings including family caregivers. Palliative Medicine 2016; 30(3): 270-278.
42. Curtis JR and White DB. Practical guidance for evidence-based ICU family conferences. Chest 2008; 134(4): 835–843.
43. Gomes B, Calanzani N and Higginson I. Reversal of the British trends in place of death: Time series analysis 2004-2010. Palliative Medicine 2012; 26(2): 102-107.
44. Worldwide Palliative Care Alliance. The Global Atlas of Palliative Care at the End-of-life, http://www.thewpca.org/resources/global-atlas-of-palliative-care/ 2014 (accessed 1 June 2014).
45. Krueger RR and Casey MA. Focus groups: A practical guide for applied research. 5th Ed. 2014, Los Angeles: Sage.
46. Seymour J, Bellamy G, Gott M, Ahmedza SH and Clark D. Using focus groups to explore older people’s attitudes to end-of-life care. Ageing and Society 2002; 22(4), 517-526.
47. Munn JC, Dobbs D, Meier A et al. The end-of-life experiences in long term care: five themes identified from focus groups with residents, family members and staff. The Gerontologist 2008; 48(4), 485-494.
48. Dening KH, Greenish W, Jones L et al. Barriers to providing end-of-life care for people with dementia: A whole system qualitative study. BMJ Supportive and Palliative care 2012; 2, 103-107.
49. Morgan DL. The Focus Group Guidebook 1998; Thousand Oaks: Sage.
50. Patton M. Qualitative research and evaluation methods. 4th Ed. 2015, Thousand Oaks, CA: Sage.
51. Goodman C and Evans C. Focus groups. In K Gerrish & J Lathlean, The Research Process in Nursing 7th Ed. 2015; UK: Wiley Blackwell.
52. Parlett M and Hamilton D. Evaluation as illumination: A new approach to the study of innovative programs 1972; Files.eric.ed.gov/fulltext/ED167634.pdf. (accessed 12 June 2017)
53. Stake RE. Multiple Case-study Analysis 2006, New York: The Guilford Press.
- Shared decision-making
- palliative care
- end-of-life care
- home care
- focus group.