Discordance between patients' stated values and treatment preferences for end-of-life care: Results of a multicentre survey

BMJ Supportive and Palliative Care

Volumn 7, Issue 3, 2017, Pages 292-299

  Heyland, Daren K ^a,b   Heyland, Rebecca ^a   Dodek, Peter ^c   You, John J ^d   Sinuff, Tasnim ^e,f   Hiebert, Tim ^g   Jiang, Xuran ^a   Day, Andrew G ^a  

^a KINGSTON GENERAL HOSPITAL   (Canada)

^b QUEEN S UNIVERSITY   (Canada)

^c ST PAUL S HOSPITAL   (Canada)

^d MCMASTER UNIVERSITY   (Canada)

^e Sunnybrook Health Sciences Centre   (Canada)

^f UNIVERSITY OF TORONTO   (Canada)

^g WINNIPEG REGIONAL HEALTH AUTHORITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

AGED; CANADA; DEATH; DECISION MAKING; EMERGENCY CARE; FEMALE; HUMAN; INTERNAL CONSISTENCY; MACHINE; MAJOR CLINICAL STUDY; MALE; MULTICENTER STUDY; PROSPECTIVE STUDY; QUESTIONNAIRE; TERMINAL CARE; ATTITUDE TO DEATH; CLINICAL TRIAL; COMMUNICATION BARRIER; MIDDLE AGED; NEOPLASM; ONTARIO; PALLIATIVE THERAPY; PATIENT PREFERENCE; PROCEDURES; PSYCHOLOGY; VERY ELDERLY;

AGED; AGED, 80 AND OVER; ATTITUDE TO DEATH; COMMUNICATION BARRIERS; DECISION MAKING; FEMALE; HUMANS; MALE; MIDDLE AGED; NEOPLASMS; ONTARIO; PALLIATIVE CARE; PATIENT PREFERENCE; PROSPECTIVE STUDIES; SURVEYS AND QUESTIONNAIRES; TERMINAL CARE;

EID: 85037059398     PISSN: 2045435X     EISSN: 20454368     Source Type: Journal    
DOI: 10.1136/bmjspcare-2015-001056     Document Type: Article

References (28)

1. Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. Washington DC: National Academies Press, 2014.
2. Heyland DK, Dodek P, Mehta S, et al., Canadian Critical Care Trials Group and Canadian Researchers at End of Life Network (CARENET). Admission of the very elderly to the intensive care unit: family members' perspectives on clinical decision-making from a multicenter cohort study. Palliat Med 2015;29:324-35.
3. Perkins HS. Controlling death: the false promise of advance directives. Ann Intern Med 2007;147:51-7.
4. Auriemma CL, Nguyen CA, Bronheim R, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med 2014;174:1085-92.
5. Heyland DK, Frank C, Groll D, et al. Understanding cardiopulmonary resuscitation decision-making: perspectives of seriously ill hospitalized patients and family members. Chest 2006;130:419-28.
6. Volicer L, Cantor MD, Derse AR, et al., National Ethics Committee Of The Veterans Health Administration. Advance care planning by proxy for residents of long-term care facilities who lack decision-making capacity. J Am Geriatr Soc 2002;50:761-7.
7. Galambos CM. Preserving end-of-life autonomy: the Patient Self-Determination Act and the Uniform Healthcare Decisions Act. Health Soc Work 1998;23:275-81.
8. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision-making. Ann Intern Med 2010;153:256-61.
9. Sinuff T, Dodek P, You JJ, et al. Improving End-of-Life Communication and Decision-making: the development of a conceptual framework and quality indicators. J Pain Symptom Manage 2015;49:1070-80.
10. Janis IL, Mann L. Decision-making: a psychological analysis of conflict, choice, and commitment. New York: The Free Press, 1977.
11. Heyland DK, Barwich D, Pichora D, et al., ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med 2013;173:778-87.
12. Pattison M, Romer AL. Improving care through the end of life: launching a primary care clinic-based program. J Palliat Med 2001;4:249-54.
13. Heyland DK, Pichora D, Dodek P, et al. The development and validation of a questionnaire to audit advance care planning. J Palliative Care Med 2012;2:119.
14. Winter L, Parks SM. Family discord and proxy decision makers' end-of-life treatment decisions. J Palliat Med 2008;11:1109-14.
15. Légaré F, Kearing S, Clay K, et al. Are you SURE?: Assessing patient decisional conflict with a 4-item screening test. Can Fam Physician 2010;56:e308-14.
16. Abhyankar P, Bekker HL, Summers BA, et al. Why values elicitation techniques enable people to make informed decisions about cancer trial participation. Health Expect 2011;14(Suppl 1):20-32.
17. https://www.makingyourwishesknown.com/
18. https://prepareforyourcare.org/
19. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision-making before death. N Engl J Med 2010;362:1211-18.
20. Frank C, Pichora D, Suurdt J, et al. Development and use of a decision aid for communication with hospitalized patients about cardiopulmonary resuscitation preference. Patient Educ Couns 2010;79:130-3.
21. Volandes AE, Paasche-Orlow MK, Barry MJ, et al. Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ 2009;338:b2159.
22. Austin CA, Mohottige D, Sudore RL, et al. Tools to promote shared decision-making in serious illness: a systematic review. JAMA Intern Med 2015;175:1213-21.
23. Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011;(10):CD001431.
24. Jain A, Corriveau S, Quinn K, et al. Video decision aids to assist with advance care planning: a systematic review and meta-analysis. BMJ Open 2015;5:e007491.
25. You JJ, Dodek P, Lamontagne F, et al., ACCEPT Study Team and the Canadian Researchers at the End of Life Network (CARENET). What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ 2014;186:E679-87.
26. You JJ, Fowler RA, Heyland DK, Canadian Researchers at the End of Life Network (CARENET). Just ask: discussing goals of care with patients in hospital with serious illness. CMAJ 2014;186:425-32. http://www.thecarenet.ca for current JUST ASK tools (accessed 10 Aug 2015).
27. Scheunemann LP, Arnold RM, White DB. The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness. Am J Respir Crit Care Med 2012;186:480-6.
28. Bernacki RE, Block SD, 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 2014;174:1994-2003.