Implementing advance care planning in routine nursing home care: The development of the theory-based ACP+ program

English version

Autoři: Joni Gilissen ^aff001; Lara Pivodic ^aff001; Annelien Wendrich-van Dael ^aff001; Chris Gastmans ^aff002; Robert Vander Stichele ^aff003; Liesbeth Van Humbeeck ^aff004; Luc Deliens ^aff001; Lieve Van den Block ^aff001
Působiště autorů: End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium ^aff001; Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven (KUL), Brussels, Belgium ^aff002; Department of Pharmacology, Ghent University, Gent, Belgium ^aff003; Department of Geriatric Medicine, Ghent University Hospital, Gent, Belgium ^aff004; Department of Public Health and Primary Care, Ghent University, Gent, Belgium ^aff005; Department of Family Medicine and Chronic Care, and Department of Clinical Sciences, Vrije Universiteit Brussel (VUB), Brussels, Belgium ^aff006
Vyšlo v časopise: PLoS ONE 14(10)
Kategorie: Research Article
prolekare.web.journal.doi_sk: https://doi.org/10.1371/journal.pone.0223586

Souhrn

Background

While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice.

Objectives

We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner.

Design

To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling.

Setting and participants

Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer.

Methods

The work was carried out by means of 1) operationalization of key intervention components–identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes–into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis.

Results

The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning.

Conclusions

The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.

Klíčová slova:

Physicians – Allied health care professionals – Nurses – Reflection – Dementia – Palliative care – Nursing homes – Verbal communication

Zdroje

1. Rietjens JAC, Sudore RL, Connolly M, Delden JJ van, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18: e543–e551. doi: 10.1016/S1470-2045(17)30582-X 28884703

2. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage. 2017;53: 821-832.e1. doi: 10.1016/j.jpainsymman.2016.12.331 28062339

3. Royal College of Physicians of London. Concise guidance to good practice: A series of evidence-based guidelines for clinical management. Number 12: Advance Care Planning National Guidelines. Royal College of Physicians of London; 2009.

4. Pivodic L, Smets T, Van den Noortgate N, Onwuteaka-Philipsen BD, Engels Y, Szczerbińska K, et al. Quality of dying and quality of end-of-life care of nursing home residents in six countries: An epidemiological study. Palliat Med. 2018;32: 1584–1595. doi: 10.1177/0269216318800610 30273519

5. Vandervoort A, Houttekier D, Vander Stichele R, van der Steen JT, Van den Block L. Quality of Dying in Nursing Home Residents Dying with Dementia: Does Advanced Care Planning Matter? A Nationwide Postmortem Study. Montazeri A, editor. PLoS ONE. 2014;9: e91130. doi: 10.1371/journal.pone.0091130 24614884

6. World Health Organization, editor. World report on ageing and health. Geneva, Switzerland: World Health Organization; 2015.

7. Van den Block L, Albers G, Pereira S, Onwuteaka-Philipsen B, Pasman R, Deliens L. Palliative Care for Older People. A Public Health Perspective. 1st ed. Oxford University Press; 2015.

8. Daaleman TP, Williams CS, Preisser JS, Sloane PD, Biola H, Zimmerman S. Advance Care Planning in Nursing Homes and Assisted Living Communities. J Am Med Dir Assoc. 2009;10: 243–251. doi: 10.1016/j.jamda.2008.10.015 19426940

9. Harrison KL, Adrion ER, Ritchie CS, Sudore RL, Smith AK. Low Completion and Disparities in Advance Care Planning Activities Among Older Medicare Beneficiaries. JAMA Intern Med. 2016;176: 1872–1875. doi: 10.1001/jamainternmed.2016.6751 27802496

10. Andreasen P, Finne-Soveri UH, Deliens L, Van den Block L, Payne S, Gambassi G, et al. Advance directives in European long-term care facilities: a cross-sectional survey. BMJ Support Palliat Care. 2019; doi: 10.1136/bmjspcare-2018-001743 31113800

11. Vandervoort A, Houttekier D, Van den Block L, van der Steen JT, Stichele RV, Deliens L. Advance Care Planning and Physician Orders in Nursing Home Residents With Dementia: A Nationwide Retrospective Study Among Professional Caregivers and Relatives. J Pain Symptom Manage. 2014;47: 245–256. doi: 10.1016/j.jpainsymman.2013.03.009 23796587

12. Nys H, Hansen B. Wilsverklaringen.be: Wegwijs in het web van wilsverklaringen 2.0. Ethische Perspectieven. [Advance directives: Guide 2.0. Ethical Perspectives]. 2015.

13. Law concerning patient rights [Internet]. Belgian Official Collection of the Laws 2002. Available: http://www.health.belgium.be

14. The Belgian Act on Euthanasia of May, 28th 2002. 2002 pp. 182–188.

15. Dixon J, Karagiannidou M, Knapp M. The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion. J Pain Symptom Manage. 2018;55: 132-150.e1. doi: 10.1016/j.jpainsymman.2017.04.009 28827062

16. Martin RS, Hayes B, Gregorevic K, Lim WK. The Effects of Advance Care Planning Interventions on Nursing Home Residents: A Systematic Review. J Am Med Dir Assoc. 2016; doi: 10.1016/j.jamda.2015.12.017 26861748

17. Walczak A, Butow PN, Bu S, Clayton JM. A systematic review of evidence for end-of-life communication interventions: Who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99: 3–16. doi: 10.1016/j.pec.2015.08.017 26404055

18. Gilissen J, Pivodic L, Smets T, Gastmans C, Vander Stichele R, Deliens L, et al. Preconditions for successful advance care planning in nursing homes: A systematic review. Int J Nurs Stud. 2017;66: 47–59. doi: 10.1016/j.ijnurstu.2016.12.003 27987411

19. Goodman C, Sharpe R, Russell C, Meyer J, Gordon A, Dening T, et al. Care home readiness: a rapid review and consensus workshops on how organisational context affects care home engagement with health care innovation. 2017; Available: https://vuh-la-uhra.herts.ac.uk/handle/2299/18200

20. Overbeek A, Korfage IJ, Jabbarian LJ, Billekens P, Hammes BJ, Polinder S, et al. Advance Care Planning in Frail Older Adults: A Cluster Randomized Controlled Trial. J Am Geriatr Soc. 2018; doi: 10.1111/jgs.15333 29608789

21. in der Schmitten J, Lex K, Mellert C, Rothärmel S, Wegscheider K, Marckmann G. Implementing an advance care planning program in German nursing homes: results of an inter-regionally controlled intervention trial. Dtsch Ärztebl Int. 2014;111: 50. doi: 10.3238/arztebl.2014.0050 24612497

22. Morrison RS, Chichin E, Carter J, Burack O, Lantz M, Meier DE. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. J Am Geriatr Soc. 2005;53: 290–294. doi: 10.1111/j.1532-5415.2005.53116.x 15673354

23. Aasmul I, Husebo BS, Flo E. Description of an advance care planning intervention in nursing homes: outcomes of the process evaluation. BMC Geriatr. 2018;18. doi: 10.1186/s12877-018-0713-7 29370766

24. Gilissen J, Pivodic L, Gastmans C, Vander Stichele R, Deliens L, Breuer E, et al. How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change. BMC Geriatr. 2018;18: 47. doi: 10.1186/s12877-018-0723-5 29444645

25. Moore GF, Evans RE. What theory, for whom and in which context? Reflections on the application of theory in the development and evaluation of complex population health interventions. SSM—Popul Health. 2017;3: 132–135. doi: 10.1016/j.ssmph.2016.12.005 29302610

26. Ajzen I. From Intentions to Actions: A Theory of Planned Behavior. In: Kuhl J, Beckmann J, editors. Action Control: From Cognition to Behavior. Berlin, Heidelberg: Springer Berlin Heidelberg; 1985. pp. 11–39. doi: 10.1007/978-3-642-69746-3_2

27. Craig P, Deippe P, Macintyre S, Michie S, Nazareth I. Medical Research Framework’s Guidance on Developing and Evaluating Complex Interventions: New Guidance. [Internet]. Medical Research Council (MRC); 2008. Available: http://internationalmidwives.org/assets/uploads/documents/News%20Archive%202011/News%20Archive%202010/Research%20Methods%20and%20Reporting.pdf

28. Moore G, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, et al. Process evaluation of complex interventions. UK Medical Research Council (MRC) guidance. UK Medical Research Council (MRC); 2012.

29. Ampe S, Sevenants A, Coppens E, Spruytte N, Smets T, Declercq A, et al. Study protocol for ‘we DECide’: implementation of advance care planning for nursing home residents with dementia. J Adv Nurs. 2014; n/a-n/a. doi: 10.1111/jan.12601 25534007

30. Chan HY, Pang SM. Let me talk—an advance care planning programme for frail nursing home residents: An advance care planning programme for frail nursing home residents. J Clin Nurs. 2010;19: 3073–3084. doi: 10.1111/j.1365-2702.2010.03353.x 21040013

31. Cornally N, McGlade C, Weathers E, Daly E, Fitzgerald C, O’Caoimh R, et al. Evaluating the systematic implementation of the ‘Let Me Decide’ advance care planning programme in long term care through focus groups: staff perspectives. BMC Palliat Care. 2015;14. doi: 10.1186/s12904-015-0051-x 26531317

32. Hanson LC, Reynolds KS, Henderson M, Pickard CG. A quality improvement intervention to increase palliative care in nursing homes. J Palliat Med. 2005;8: 576–584. doi: 10.1089/jpm.2005.8.576 15992199

33. Korfage IJ, Rietjens JAC, Overbeek A, Jabbarian LJ, Billekens P, Hammes BJ, et al. A cluster randomized controlled trial on the effects and costs of advance care planning in elderly care: study protocol. BMC Geriatr. 2015;15. doi: 10.1186/s12877-015-0087-z 26198573

34. Levy C, Morris M, Kramer A. Improving End-of-Life Outcomes in Nursing Homes by Targeting Residents at High Risk of Mortality for Palliative Care: Program Description and Evaluation. J Palliat Med. 2008;11: 217–225. doi: 10.1089/jpm.2007.0147 18333736

35. Livingston G, Lewis-Holmes E, Pitfield C, Manela M, Chan D, Eleanor C, et al. Improving the end-of-life for people with dementia living in a care home: an intervention study. International Psychogeriatrics; 2013.

36. Meller AE, Caplan GA. Let someone else decide?: Development of an advance care planning service for nursing home residents with advanced dementia. Dementia. 2009;8: 391–405. doi: 10.1177/1471301209104981

37. Molloy W, Guyatt G. Systematic implementation of an Advance Directive Program in Nursing Homes. A Randomized Controlled Trial. JAMA. 2000;283.

38. Smets T, Onwuteaka-Philipsen BBD, Miranda R, Pivodic L, Tanghe M, van Hout H, et al. Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries. BMC Palliat Care. 2018;17. doi: 10.1186/s12904-018-0297-1 29530091

39. Rothärmel S, Mellert C, Rixen S, Hammes BJ, Briggs L, Wegscheider K, et al. A complex regional intervention to implement advance care planning in one town’s nursing homes: Protocol of a controlled inter-regional study. BMC Health Serv Res. 2011;11: 1. doi: 10.1186/1472-6963-11-1 21199575

40. Houben C, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA. Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis. J Am Med Dir Assoc. 2014;15: 477–489. doi: 10.1016/j.jamda.2014.01.008 24598477

41. Deliens L, Gendt CD, Haene ID. Advance Care Planning: overleg tussen zorgverleners, patiënten met dementie en hun naasten [Internet]. Brussel: Koning Boudewijnstichting; 2009. Available: http://www.kbs-frb.be/uploadedFiles/KBS-FRB/05)_Pictures,_documents_and_external_sites/09)_Publications/PUB1873-ACP-NL-(1).pdf

42. Piers R, Albers G, Gilissen J, De Lepeleire J, Steyaert J, Van Mechelen W, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17. doi: 10.1186/s12904-018-0332-2 29933758

43. Van Mechelen W. Vroegtijdige Zorgplanning. Richtlijn, Versie: 1.0. Federatie Palliatieve Zorg Vlaanderen vzw; 2014 Jun.

44. Sekhon M, Cartwright M, Francis JJ. Acceptability of healthcare interventions: an overview of reviews and development of a theoretical framework. BMC Health Serv Res. 2017;17. doi: 10.1186/s12913-017-2031-8 28126032

45. Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348: g1687–g1687. doi: 10.1136/bmj.g1687 24609605

46. De Gendt C, Bilsen J, Stichele RV, Deliens L. Nursing home policies regarding advance care planning in Flanders, Belgium. Eur J Public Health. 2010;20: 189–194. doi: 10.1093/eurpub/ckp121 19726590

47. Caplan GA, Meller A, Squires B, Chan S, Willett W. Advance care planning and hospital in the nursing home. Age Ageing. 2006;35: 581–585. doi: 10.1093/ageing/afl063 16807309

48. Ramsbottom K, Kelley ML. Developing Strategies to Improve Advance Care Planning in Long Term Care Homes: Giving Voice to Residents and Their Family Members. Int J Palliat Care. 2014;2014: 1–8. doi: 10.1155/2014/358457

49. Vanderstichelen S, Cohen J, Wesemael YV, Deliens L, Chambaere K. Volunteer involvement in the organisation of palliative care: A survey study of the healthcare system in Flanders and Dutch‐speaking Brussels, Belgium. Health Soc Care Community. 2018; doi: 10.1111/hsc.12666 30325557

50. Schickedanz AD, Schillinger D, Landefeld CS, Knight SJ, Williams BA, Sudore RL. A Clinical Framework for Improving the Advance Care Planning Process: Start with Patients’ Self-Identified Barriers: BARRIERS TO THE ADVANCE CARE PLANNING PROCESS. J Am Geriatr Soc. 2009;57: 31–39. doi: 10.1111/j.1532-5415.2008.02093.x 19170789

51. Sudore RL, Heyland DK, Lum HD, Rietjens JAC, Korfage IJ, Ritchie CS, et al. Outcomes that Define Successful Advance Care Planning: A Delphi Panel Consensus. J Pain Symptom Manage. 2017; doi: 10.1016/j.jpainsymman.2017.08.025 28865870

52. Baker R, Camosso-Stefinovic J, Gillies C, Shaw EJ, Cheater F, Flottorp S, et al. Tailored interventions to address determinants of practice. Cochrane Database Syst Rev. 2015; CD005470. doi: 10.1002/14651858.CD005470.pub3 25923419

53. Powell BJ, Beidas RS, Lewis CC, Aarons GA, McMillen JC, Proctor EK, et al. Methods to Improve the Selection and Tailoring of Implementation Strategies. J Behav Health Serv Res. 2017;44: 177–194. doi: 10.1007/s11414-015-9475-6 26289563

54. Gilissen J, Pivodic L, Smets T, Gastmans C, Vander Stichele R, Deliens L, et al. Preconditions for succesful advance care planning in nursing homes: a systematic review. Int J Nurs Stud. 2016;

55. Bleijenberg N, de Man-van Ginkel JM, Trappenburg JCA, Ettema RGA, Sino CG, Heim N, et al. Increasing value and reducing waste by optimizing the development of complex interventions: Enriching the development phase of the Medical Research Council (MRC) Framework. Int J Nurs Stud. 2018;79: 86–93. doi: 10.1016/j.ijnurstu.2017.12.001 29220738

56. Hoddinott P. A new era for intervention development studies. Pilot Feasibility Stud. 2015;1. doi: 10.1186/s40814-015-0032-0 27965814

57. Froggatt K, Edwards M, Morbey H, Payne S. Mapping palliative care systems in long term care facilities in Europe. PACE Work Package 1 and EAPC Taskforce Report. UK: Lancaster University; 2016 Feb.

58. Ribbe MW, Ljunggren G, Steel K, Topinková E, Hawes C, Ikegami N, et al. Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing. 1997;26 Suppl 2: 3–12.

59. Li S, Middleton A, Ottenbacher KJ, Goodwin JS. Trajectories Over the First Year of Long-Term Care Nursing Home Residence. J Am Med Dir Assoc. 2018;19: 333–341. doi: 10.1016/j.jamda.2017.09.021 29108886

60. Whitehead AL, Sully BGO, Campbell MJ. Pilot and feasibility studies: Is there a difference from each other and from a randomised controlled trial? Contemp Clin Trials. 2014;38: 130–133. doi: 10.1016/j.cct.2014.04.001 24735841

61. Abbott JH. The Distinction Between Randomized Clinical Trials (RCTs) and Preliminary Feasibility and Pilot Studies: What They Are and Are Not. J Orthop Sports Phys Ther. 2014;44: 555–558. doi: 10.2519/jospt.2014.0110 25082389