Main Article Content
values, advance care planning, end-of-life care, shared decision making, medical decision making
Background: We report the development and pilot-testing of a values history tool to support patients and their substitute decision makers (SDMs) in advance care planning.
Methods: Tool development was an iterative, multi-phase process involving expert input, literature review, patient input, and beta-testing with 35 laypersons. In a single-center, before-after pilot study, we assessed the acceptability, clarity, and potential utility of the tool.
Results: Participants (n=6; 3 patients and 3 SDMs) rated the tool as clear (4.7/5), worthwhile (4.7/5), and said it did not cause distress (4.7/5).Tool completion and discussion resulted in better understanding of patient values (mean 4.5 on a 5-point scale) and helped build understanding between patient and SDM (4.3/5). Participants
Conclusions: Based on development involving content experts, patients, and laypersons, we conclude that our tool has face and content validity. Our pilot study suggests it merits evaluation in larger studies to further evaluate its utility.
2. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274:1591-8.
3. Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y, et al. Defining priorities for improving end-of-life care in Canada. CMAJ. 2010;182:E747-E752.
4. Sinuff T, Dodek P, You JJ, Barwich D, Tayler C, Downar J, 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.
5. 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.
6. Law Commission of Ontario. Improving the Last Stages of Life: Discussion Paper. Toronto, May 2017. http://www.lco-cdo.org/wp-content/uploads/2017/05/LCO-Last-Stages-of-Life-Discussion-Paper-1.pdf. Accessed 27 Jan 2018.
7. Bernacki, RE., Block SD. Communication about Serious Illness Care Goals: A review and Synthesis of Best Practices. JAMA Internal Med. 2014;174:1994-2003.
8. College of Physicians and Surgeons of Ontario. Policy Statement #6-16 Planning for and Providing Quality End-of-Life Care. Toronto, May 2016. http://www.cpso.on.ca/cpso/media/documents/policies/policy-items/end-of-life.pdf. Accessed 27 Jan 2018.
9. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166:493-7.
10. You JJ, Dodek P, Lamontagne F, Downar J, Sinuff T, Jiang X, et al. What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ. 2014;186:E679-87.
11. Heyland DK, Heyland R, Dodek P, You JJ, Sinuff T, Hiebert T, et al. Discordance between patients' stated values and treatment preferences for end-of-life care: results of a multicentre survey. BMJ Support Palliat Care. 2017;7:292-9.
12. Justin RG. The value history: A necessary family document. Theor Med. 1987;8:275-82.
13. Abhyankar P, Bekker HL, Summers BA, Velikova G. Why values elicitation techniques enable people to make informed decision about cancer trial participation. Health Expect. 2011;14 Suppl 1:20-32.
14. Scheunemann LP, Arnold RM, White DB. The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness. Am J Resp Crit Care Med. 2012;186:480-6.
15. Doukas DJ, McCullough LB. The values history. The evaluation of the patient’s values and advance directives. J Fam Pract. 1991;32:145-53.
16. Lambert P, Gibson JM, Nathanson P. The values history: an innovation in surrogate medical decision-making. Law Med Health Care. 1990;18:202–12.
17. American Bar Association Commission on Law and Aging. Consumer’s Tool Kit for Health Care Advance Care Planning: Tool #2. Are some conditions worse than death? Second edition. Washington DC, 2005. Available at: http://vaelderlaw.com/global_pictures/consumer_tool_kit_bk.pdf. Accessed 27 Jan 2018.
18. Fagerlin A, Pignone M, Abhyankar P, Col N, Feldman-Stewart D, Gavaruzzi T, et al. Clarifying values: an updated review. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S8.
19. Witteman HO, Scherer LD, Gavaruzzi T, Pieterse AH, Fuhrel-Forbis A, Chipenda Dansokho S, et al. Design features of explicit values clarification methods: a systematic review. Med Decis Making. 2016;36:453-71.
20. Canadian Hospice Palliative Care Association. Advance Care Planning in Canada: National Framework. Ottawa, January 2012. http://www.advancecareplanning.ca/wp-content/uploads/2016/08/ACP-Framework-2012-ENG.pdf. Accessed 27 Jan 2018.
21. Heyland DK, Pichora D, Dodek P, Lamontagne F, You JJ, Barwich D, et al. The development and validation of a questionnaire to audit advance care planning. J Palliative Care Med. 2012;2:119.
22. 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. 2010;340:c1345.
23. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-73.