Table 1 Overview of Tools Reviewed
Tool Name | Description | Studies published on the piloting and evaluation of the tool | URL |
|---|---|---|---|
1. Five Wishes Advance Directive | Living will that allows users to select an SDM and easily organize their psychosocial EOL care preferences in conjunction with their medical treatment preferences, by selecting items from pre-populated lists. | Chovan, 2007; Wiener et al., 2008 | https://fivewishes.org/shop/order/product/five-wishes-advance-directive |
2. Respecting Patient Choices: Information Booklet, Planning Guide, and Advanced Care Plan (Aged Care) | The Information Booklet contains general guidance on advanced care planning using clinical vignettes and FAQ-style questions. The Planning Guide offers space to write reflections on quality of life as well as medical treatment. The Advanced Care Plan (Aged Care) is a formalized directive which prompts the user to record general values, EOL care goals, and specific psychosocial and medical care preferences. | Detering et al., 2014; Seal, 2007, Silvester et al., 2013; | Tool provided via network of research collaborators. |
3. Graphic Values History Tool | This tool is highly visual and accessible as it illustrates each reflective prompt by an accompanying symbol or graphic. It is divided into 5 different sections, guiding users to consider themes related to quality of life, value ‘tradeoffs’, considering whether certain health conditions are worse than death, the impact of their decisions on others, and their religious/spiritual/cultural beliefs. | Tool provided via network of research collaborators. | |
4. Speak Up: Advance Care Planning Workbook | Workbook which carefully defines ACP and emphasizes its importance, while providing reflective prompts, space to indicate one’s substitute decision-maker (SDM), and opportunities to write down thoughts and wishes about EOL care. | ||
5. Your Life Your Choices | Workbook that uses case examples, legal and medical information, and thought-provoking questions and interactive written exercises to encourage users to think about and communicate their EOL preferences, while emphasizing the importance of ultimately documenting them. | https://www.elderguru.com/downloads/your_life_your_choices_advance_directives.pdf | |
6. American Bar Association: Tool Kit for Health Care Advance Planning | This “Kit” is composed of 10 different tools, purposefully structured to guide users through selecting an SDM, considering their values, indicating and communicating EOL care preferences, and ensuring decision-makers understand these choices via a “quiz”. | ||
7. Finding Your Way: Medical Decisions When They Count Most | Informational booklet that uses case vignettes, medical and general information, and reflective questions to prompt the user to consider what they value in terms of their life and end-of-life treatment, culminating by encouraging the creation of advance directives. | https://coalitionccc.org/wp-content/uploads/2014/02/Finding-Your-Way-English.pdf | |
8. Your Conversation Starter Kit | Workbook that provides users with interactive prompts regarding their personal and life values, and carefully guiding them through communicating their EOL preferences. | Lum et al., 2016 | |
9. Alberta Health Services: Conversations Matter | Booklet designed to get users thinking and learning about their own health circumstances, and considering and communicating their EOL care preferences, via case vignettes, information about advance care planning, and guidance about documentation in directives. | https://myhealth.alberta.ca/Alberta/AlbertaDocuments/conversations-matter-guide-english.pdf | |
10. Dying with Dignity: Advance Care Planning Kits | Logically ordered information piece, specific to provincial jurisdiction, that takes users through understanding personal psychosocial directives, considering personal values, considering medical priorities, why an SDM should be named, talking to this person, and finally recording advance directives and SDM designations. | https://www.dyingwithdignity.ca/download_your_advance_care_planning_kit | |
11. Dying Matters: Resources | Series of eye-catching leaflets on various EOL topics. A sample of 13 were reviewed which emphasized the importance of advance care planning and promoted conversations on the subject, using examples, checklists, information and guidance. | ||
12. My Voice: Advance Care Planning Guide | Workbook that provides information about ACP, illustrated by case vignettes, and culminates in an opportunity for users to record general beliefs, values, and wishes, and to complete legally binding representation forms and an advance directive. | https://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-AdvanceCarePlanningGuide.pdf | |
13. The Critical Conditions Planning Guide | Workbook that uses case vignettes and exercises to encourage users to discuss their EOL wishes, and to reflect on and record their life values and preferences, ultimately guiding them in the completion of an advance directive. | ||
14. Acclaim Health | Document that provides guidance and information about EOL care planning while emphasizing its importance, and encouraging users to identify and communicate their preferences and values. | Tool provided via network of research collaborators. | |
15. Begin The Conversation | Purposefully structured 7-step workbook that encourages patients to reflect on, communicate and formally record their medical and psychosocial preferences for EOL care, by presenting information and statistics about the importance of advance care planning, and reflective exercises. | ||
16. Compassion and Choices: My End-of-Life Decisions – An Advance Planning Guide and Toolkit | Workbook that provides information about decision-making and directives, includes values exercises, and emphasizes communication, in order for users to ultimately complete several advance directive documents. | ||
17. Deathwise: End-of-Life Binder Worksheets | Tool that guides users to consider and communicate their values, and that offers opportunity to record various important personal information including healthcare wishes, memorial service and obituary preferences, contact information of loved ones, and more. | http://deathwise.wpengine.com/wp-content/uploads/2013/08/End-of-Life-Binder-Worksheets.pdf | |
18. Stanford Letter Project: What Matters Most | Short letter template for patients to send to their physician, outlining key values and EOL care preferences, as intended to be kept in their medical records. | http://med.stanford.edu/content/dam/sm/letter/documents/Letter-English.pdf | |
19. Speak Up Ontario: Thinking about my wishes for future health care | Short workbook that uses interactive exercises to prompt users to think about their values, wishes and preferences for EOL, with a medical focus. It emphasizes the importance of communicating these thoughts with one’s SDM and others. | https://www.speakupontario.ca/wp-content/uploads/2018/07/ACP-Patient-Template-En-SpeakUp-Ontario.pdf | |
20. Winnipeg Regional Health Authority: Advance Care Planning | Workbook encouraging care planning by providing information and prompting users to reflect on and communicate their values and beliefs, and to ultimately complete an enclosed advance directive. | ||
21. Nova Scotia Health Authority: Advance Care Planning Patient & Family Guide | Workbook that provides extensive information about medical treatments, decision-making, and directives, and guides users through values exercises, culminating in the creation of a directive including both psychosocial and medical preferences. | http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/1942.pdf | |
22. Honoring Choices Minnesota: Choose Your Agent, Sample Values Statements, Health Care Directive, and Guide to Completing Your Directive | Series of information packages that prompt the patient to choose an SDM, think about their values for EOL care, and use those values to complete an advance directive including both medical and psychosocial components, with extensive guidance. | https://www.honoringchoices.org/tools-resources/how-to-start | |
23. Advance Care Planning: A Catholic, Faith-Based Perspective | Information booklet that provides users with guidance about making EOL decisions in keeping with the teachings of the Catholic Church. It encourages reflection and communication, and offers opportunity to record a directive involving psychosocial as well as medical aspects of care. | https://www.chabc.bc.ca/wp-content/uploads/2017/05/ACP-document.pdf | |
24. Baycrest: Advance Care Planning-Making Your Health Wishes Known | Tool that provides important guidance about EOL care planning and decision-making, while using vignettes and information to subsequently prompt the patient to think about, speak about, and record what is important to them. | https://www.baycrest.org/Baycrest_Centre/media/content/form_files/ACP_MAKING-WISHES-KNOWN.pdf | |
25. The College of Family Physicians of Canada: Advance Care Planning Resource for Patients | Short document directed at patients that explains advanced care planning and what the role of an SDM is. It urges communication with family, friends, and medical professionals, prompts users to start thinking about their psychosocial and medical wishes for the end of their life, and recommends documentation. | ||
26. Northern Ireland Palliative Care Tools & Guidance: Advance Care Planning - Your life and your choices: plan ahead, Your Checklist for Planning Ahead, My Advance Decision to Refuse Treatment (ADRT), and Record my Wishes | Collection that provides users with extensive guidance about why, how, and with whom to plan ahead, through information, vignettes, and exercises, culminating in the opportunity to record wishes as reflections as well as in legally binding documents. | ||
27. Michael Garron Hospital: Advance Care Planning Workbook | Workbook that defines and promotes advanced care planning and encourages users to learn about their health, choose an SDM, think about their values and wishes via a writing exercise, and share their wishes with family and healthcare providers. | https://www.tehn.ca/sites/default/files/file-browser/acp_workbook_mgh_final_feb_2016.pdf | |
28. Perth and Smith Falls District Hospital: Advance Care Planning in Ontario | Step-by-step workbook that provides information and reflective questions to prompt users to think about their preferences, learn about their health, choose an SDM, while highlighting the importance of ultimately sharing and recording their wishes. | ||
29. Healthy New Hampshire: Advance Care Planning Guide | Guidebook that provides reflective questions and extensive information about advance care planning, encouraging the careful selection of an SDM via an interactive exercise, and culminates in the completion of an advance medical directive. | https://www.healthynh.com/images/PDFfiles/advance-directives/2017_ACPG_Final.pdf | |
30. Making Choices Michigan: Advance Directive- Durable Power of Attorney for Healthcare (Patient Advocate Designation) | Advance directive that focuses on documentation including the appointment of an SDM and the recording of both medical and psychosocial care preferences. It urges the importance of communicating with the selected SDM. | ||
31. Got Plans? Your Advance Care Planning Guide | Simple guidebook that prompts and describes the selection of an SDM, encourages reflection and communication via thought-provoking questions, and guides the user to go on to document wishes in an advance directive. | http://compassionatecarenc.org/wp-content/uploads/2017/04/GotPlansGuide_031017.pdf | |
32. Utah Commission on Aging: Tool Kit for Advance Healthcare Planning | Series of 10 tools that are systematically laid out, using exercises, information and advice, to prompt users to select their SDM, consider and communicate their medical and psychosocial wishes, and ensure their SDM understands, via an ‘IQ Test’. It culminates in an advance medical directive. | https://ucoa.utah.edu/_resources/documents/directives/tool-kit-2012.pdf |