Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

The Lancet Oncology

Volumn 18, Issue 9, 2017, Pages e543-e551

  Rietjens, Judith A C ^a   Sudore, Rebecca L ^b,c   Connolly, Michael ^d   van Delden, Johannes J ^e   Drickamer, Margaret A ^f,g   Droger, Mirjam ^a   van der Heide, Agnes ^a   Heyland, Daren K ^h   Houttekier, Dirk ⁱ   Janssen, Daisy J A ^j,k   Orsi, Luciano ^l   Payne, Sheila ^m   Seymour, Jane ⁿ   Jox, Ralf J ^o,p   Korfage, Ida J ^a  

^a ERASMUS MEDICAL CENTER   (Netherlands)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c SAN FRANCISCO VETERANS AFFAIRS MEDICAL CENTER   (United States)

^d UNIVERSITY COLLEGE DUBLIN   (Ireland)

^e UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

^f UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^g YALE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^h QUEEN S UNIVERSITY   (Canada)

ⁱ VRIJE UNIVERSITEIT BRUSSEL   (Belgium)

^j CIRO Centre of Expertise for Chronic Organ Failure   (Netherlands)

^k MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^l CARLO POMA HOSPITAL   (Italy)

^m LANCASTER UNIVERSITY   (United Kingdom)

ⁿ UNIVERSITY OF SHEFFIELD   (United Kingdom)

^o UNIVERSITY OF MUNICH   (Germany)

^p LAUSANNE UNIVERSITY HOSPITAL   (Switzerland)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ADVANCE CARE PLANNING; AUSTRALIA; CANCER PALLIATIVE THERAPY; CANCER RESEARCH; CLINICAL DECISION MAKING; CLINICAL PRACTICE; CONSENSUS; CONSENSUS DEVELOPMENT; EUROPE; EUROPEAN; FAMILY DECISION MAKING; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HUMAN; INTERNATIONAL COOPERATION; MEDICAL EXPERT; MEDICAL SOCIETY; NORTH AMERICA; OUTCOME ASSESSMENT; PERSONALIZED MEDICINE; PRIORITY JOURNAL; REVIEW; DELPHI STUDY; HEALTH PERSONNEL ATTITUDE; PALLIATIVE THERAPY;

ADVANCE CARE PLANNING; ATTITUDE OF HEALTH PERSONNEL; CONSENSUS; DELPHI TECHNIQUE; HUMANS; PALLIATIVE CARE;

EID: 85030423963     PISSN: 14702045     EISSN: 14745488     Source Type: Journal    
DOI: 10.1016/S1470-2045(17)30582-X     Document Type: Review

References (77)

1. Brinkman-Stoppelenburg, A, Rietjens, JA, van der Heide, A, The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 28 (2014), 1000–1025.
2. Houben, CH, Spruit, MA, Groenen, MT, Wouters, EF, Janssen, DJ, Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 15 (2014), 477–489.
3. Johnson, S, Butow, P, Kerridge, I, Tattersall, M, Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology 25 (2016), 362–386.
4. Sudore, RL, Lum, HD, You, JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 53 (2017), 821–832.
5. Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life, 2015, The National Academies Press, Washington, DC.
6. Conroy, S, Fade, P, Fraser, A, Schiff, R, for the Guideline Development Group. Advance care planning: concise evidence-based guidelines. Clin Med 9 (2009), 76–79.
7. National End of Life Care Programme. Capacity, care planning and advance care planning in life limiting illness. http://www.ncpc.org.uk/sites/default/files/ACP_Booklet_June_2011.pdf, June 2011 (accessed April 7, 2017).
8. Schrijvers, D, Cherny, NI, Group, EGW, ESMO Clinical Practice Guidelines on palliative care: advanced care planning. Ann Oncol 25:suppl 3 (2014), iii138–iii142.
9. Billings, JA, Bernacki, R, Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Intern Med 174 (2014), 620–624.
10. Barclay, JS, Blackhall, LJ, Tulsky, JA, Communication strategies and cultural issues in the delivery of bad news. J Palliat Med 10 (2007), 958–977.
11. De Vet, E, Brug, J, De Nooijer, J, Dijkstra, A, De Vries, NK, Determinants of forward stage transitions: a Delphi study. Health Educ Res 20 (2005), 195–205.
12. Biondo, PD, Nekolaichuk, CL, Stiles, C, Fainsinger, R, Hagen, NA, Applying the Delphi process to palliative care tool development: lessons learned. Support Care Cancer 16 (2008), 935–942.
13. Francke, AL, Smit, MC, de Veer, AJE, Mistiaen, P, Factors influencing the implementation of clinical guidelines for health care professionals: a systematic meta-review. BMC Med Inform Decis Mak, 8, 2008, 38.
14. Australian Medical Association. Position statement on end of life care and advance care planning. https://ama.com.au/system/tdf/documents/AMA_position_statement_on_end_of_life_care_and_advance_care_planning_2014.pdf?file=1&type=node&id=40573, 2014 (accessed April 7, 2017).
15. Jones, J, Hunter, D, Consensus methods for medical and health services research. BMJ 311 (1995), 376–380.
16. Linstone, HA, Turoff, M, The Delphi method: techniques and applications, 1975, Addison-Wesley, Boston.
17. van der Steen, JT, Radbruch, L, Hertogh, CM, et al., for the European Association for Palliative Care. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 28 (2014), 197–209.
18. Parker, SM, Clayton, JM, Hancock, K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 34 (2007), 81–93.
19. Fried, TR, Bullock, K, Iannone, L, O'Leary, JR, Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc 57 (2009), 1547–1555.
20. Fried, TR, Redding, CA, Robbins, ML, Paiva, A, O'Leary, JR, Iannone, L, Stages of change for the component behaviors of advance care planning. J Am Geriatr Soc 58 (2010), 2329–2336.
21. Bernacki, RE, Block, SD, for the American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 174 (2014), 1994–2003.
22. Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, McIntyre, L, Tulsky, JA, Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284 (2000), 2476–2482.
23. Weiner, JS, Cole, SA, Three principles to improve clinician communication for advance care planning: overcoming emotional, cognitive, and skill barriers. J Palliat Med 7 (2004), 817–829.
24. Mack, JW, Weeks, JC, Wright, AA, Block, SD, Prigerson, HG, End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 28 (2010), 1203–1208.
25. Messinger-Rapport, BJ, Baum, EE, Smith, ML, Advance care planning: beyond the living will. Cleve Clin J Med 76 (2009), 276–285.
26. Silveira, MJ, Kim, SY, Langa, KM, Advance directives and outcomes of surrogate decision making before death. N Engl J Med 362 (2010), 1211–1218.
27. Sehgal, A, Galbraith, A, Chesney, M, Schoenfeld, P, Charles, G, Lo, B, How strictly do dialysis patients want their advance directives followed?. JAMA 267 (1992), 59–63.
28. Sulmasy, DP, Hughes, MT, Thompson, RE, et al. How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. J Am Geriatr Soc 55 (2007), 1981–1988.
29. Wendler, D, Rid, A, Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med 154 (2011), 336–346.
30. Sudore, RL, Fried, TR, Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med 153 (2010), 256–261.
31. Glaudemans, JJ, Moll van Charante, EP, Willems, DL, Advance care planning in primary care, only for severely ill patients? A structured review. Fam Pract 32 (2015), 16–26.
32. Teno, JM, Gruneir, A, Schwartz, Z, Nanda, A, Wetle, T, Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 55 (2007), 189–194.
33. Hickman, SE, Nelson, CA, Moss, AH, Tolle, SW, Perrin, NA, Hammes, BJ, The consistency between treatments provided to nursing facility residents and orders on the physician orders for life-sustaining treatment form. J Am Geriatr Soc 59 (2011), 2091–2099.
34. Clayton, JM, Hancock, K, Parker, S, et al. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psychooncology 17 (2008), 641–659.
35. Sanders, JJ, Robinson, MT, Block, SD, Factors impacting advance care planning among african americans: results of a systematic integrated review. J Palliat Med 19 (2016), 202–227.
36. Baker, ME, Economic, political and ethnic influences on end-of-life decision-making: A decade in review. J Health Soc Pol 14 (2002), 27–39.
37. Patel, K, Janssen, DJ, Curtis, JR, Advance care planning in COPD. Respirology 17 (2012), 72–78.
38. Bullock, K, The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care 7 (2011), 83–98.
39. Szmuilowicz, E, El-Jawahri, A, Chiappetta, L, Kamdar, M, Block, S, Improving residents' end-of-life communication skills with a short retreat: a randomized controlled trial. J Palliat Med 13 (2010), 439–452.
40. Fallowfield, L, Jenkins, V, Farewell, V, Saul, J, Duffy, A, Eves, R, Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. Lancet 359 (2002), 650–656.
41. Cavalieri, TA, Latif, W, Ciesielski, J, Ciervo, CA Jr, Forman, LJ, How physicians approach advance care planning in patients with mild to moderate Alzheimer's disease. J Am Osteopath Assoc 102 (2002), 541–544.
42. Back, AL, Arnold, RM, Baile, WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med 167 (2007), 453–460.
43. Stewart, F, Goddard, C, Schiff, R, Hall, S, Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families. Age Ageing 40 (2011), 330–335.
44. Hickman, SE, Keevern, E, Hammes, BJ, Use of the physician orders for life-sustaining treatment program in the clinical setting: a systematic review of the literature. J Am Geriatr Soc 63 (2015), 341–350.
45. Detering, KM, Hancock, AD, Reade, MC, Silvester, W, The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ, 340, 2010, c1345.
46. Molloy, DW, Guyatt, GH, Russo, R, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 283 (2000), 1437–1444.
47. 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 53 (2005), 290–294.
48. Chan, HYL, Pang, S, Let me talk—an advance care planning programme for frail nursing home residents. J Clin Nurs 19 (2010), 3073–3084.
49. Kirchhoff, KT, Hammes, BJ, Kehl, KA, Briggs, LA, Brown, RL, Effect of a disease-specific advance care planning intervention on end-of-life care. J Am Geriatr Soc 60 (2012), 946–950.
50. Song, MK, Kirchhoff, KT, Douglas, J, Ward, S, Hammes, B, A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery. Med Care 43 (2005), 1049–1053.
51. Litzelman, DK, Inui, TS, Griffin, WJ, et al. Impact of community health workers on elderly patients' advance care planning and health care utilization: moving the dial. Med Care 55 (2017), 319–326.
52. Austin, CA, Mohottige, D, Sudore, RL, Smith, AK, Hanson, LC, Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med 175 (2015), 1213–1221.
53. Jain, A, Corriveau, S, Quinn, K, Gardhouse, A, Vegas, DB, You, JJ, Video decision aids to assist with advance care planning: a systematic review and meta-analysis. BMJ Open, 5, 2015, e007491.
54. Robinson, L, Dickinson, C, Bamford, C, Clark, A, Hughes, J, Exley, C, A qualitative study: professionals' experiences of advance care planning in dementia and palliative care,‘a good idea in theory but…’. Palliat Med 27 (2013), 401–408.
55. Auriemma, CL, Nguyen, CA, Bronheim, R, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med 174 (2014), 1085–1092.
56. van der Steen, JT, van Soest-Poortvliet, MC, Hallie-Heierman, M, et al. Factors associated with initiation of advance care planning in dementia: a systematic review. J Alzheimers Dis 40 (2014), 743–757.
57. Malcomson, H, Bisbee, S, Perspectives of healthy elders on advance care planning. J Am Acad Nurse Pract 21 (2009), 18–23.
58. Janssen, DJA, Spruit, MA, Schols, JMGA, et al. Predicting changes in preferences for life-sustaining treatment among patients with advanced chronic organ failure. Chest 141 (2012), 1251–1259.
59. Janssen, DJA, Spruit, MA, Schols, JMGA, van der Sande, FM, Frenken, LA, Wouters, EFM, Insight into advance care planning for patients on dialysis. J Pain Symptom Manage 45 (2013), 104–113.
60. Mullick, A, Martin, J, Sallnow, L, An introduction to advance care planning in practice. BMJ, 347, 2013, f6064.
61. Flo, E, Husebo, BS, Bruusgaard, P, et al. A review of the implementation and research strategies of advance care planning in nursing homes. BMC Geriatr, 16, 2016, 24.
62. Kirkpatrick, JN, Hauptman, PJ, Goodlin, SJ, Bundling informed consent and advance care planning in chronic cardiovascular disease: we need to talk. JAMA Intern Med 175 (2015), 5–6.
63. Dow, LA, Matsuyama, RK, Ramakrishnan, V, et al. Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol 28 (2010), 299–304.
64. Lamont, EB, Siegler, M, Paradoxes in cancer patients' advance care planning. J Palliat Med 3 (2000), 27–35.
65. Gott, M, Gardiner, C, Small, N, et al. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med 23 (2009), 642–648.
66. Wilson, DM, Cohen, J, Deliens, L, Hewitt, JA, Houttekier, D, The preferred place of last days: results of a representative population-based public survey. J Palliat Med 16 (2013), 502–508.
67. Yung, VY, Walling, AM, Min, L, Wenger, NS, Ganz, DA, Documentation of advance care planning for community-dwelling elders. J Palliat Med 13 (2010), 861–867.
68. Skinner, I, Smith, C, Jaffray, L, Realist review to inform development of the electronic advance care plan for the personally controlled electronic health record in Australia. Telemed J E Health 20 (2014), 1042–1048.
69. Johnson, M, Attree, M, Jones, I, Al Gamal, E, Garbutt, D, Diagnosis, prognosis and awareness of dying in nursing homes: towards the Gold Standard?. Int J Older People Nurs 9 (2014), 95–105.
70. Ke, LS, Huang, X, O'Connor, M, Lee, S, Nurses' views regarding implementing advance care planning for older people: a systematic review and synthesis of qualitative studies. J Clin Nurs 24 (2015), 2057–2073.
71. Bausewein, C, Daveson, BA, Currow, DC, et al. EAPC White Paper on outcome measurement in palliative care: improving practice, attaining outcomes and delivering quality services—recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med 30 (2015), 6–22.
72. Sabatino, CP, The evolution of health care advance planning law and policy. Milbank Q 88 (2010), 211–239.
73. Seymour, J, Advance care planning for the end of life: an overview. Thomas, K, Lobo, B, (eds.) Advance care planning in end of life care, 2011, Oxford University Press, Oxford, 16–27.
74. Jünger, S, Payne, SA, Brine, J, Radbruch, L, Brearley, SG, Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: recommendations based on a methodological systematic review. Palliat Med, 2017 published online Feb 1. DOI:10.1177/0269216317690685.
75. Johnson, AP, Hanvey, L, Baxter, S, Daren, K, for the Canadian Researchers at the End of Life Network. Development of advance care planning research priorities: a call to action. J Palliat Care 29 (2013), 99–106.
76. Howard, M, Bonham, AJ, Heyland, DK, et al. Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study. BMJ Open, 6, 2016, e010375.
77. Sudore, RL, Heyland, DK, Barnes, DE, et al. Measuring advance care planning: optimizing the advance care planning engagement survey. J Pain Symptom Manage 53 (2017), 669–681.