Personal Advance Care Plan Document

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CDA Personal Advance Care Plan Document Project

Welcome to the Personal Advance Care Plan Project Wiki Site. This wiki will be used to manage the information necessary to support development of CDA R2 Implementation Guide that specifies how to create a patient generated document with content that expresses an individual's advance care plan. An advance care plan is a plan that is made in advance of when it may be needed. The Personal Advance Care Plan document will record (for the purpose of digital information exchange) a person's care goals, preferences, and priorities, the person's appointed healthcare agents, organ donation preferences, final arrangements, and other directives commonly reported in what the industry calls a person's "Advance Directives", "Living Will", "Healthcare Power of Attorney", etc. Examples of these type of documents, in paper form, are included below. The selected samples will inform and guide the template designs developed in this CDA Implementation Guide.

• Guiding principles used to manage the project, encourage collaboration, and focus the scope of the content to be included.
  
  • The PSS sets the scope and boundaries for the project
  • The document content requirements will be documented and preserved on this wiki to support ballot reconciliation and for future reference
    • Content requirements will be generated by analyzing actual examples readily in the United States, available on the internet,and considered to be a reputable reference resource by the steering committee
    • All samples will be considered by the industry team. Some samples may be determined to be out of scope or certain parts or aspects may be deemed out of scope.
  • Decision making over controversial topics will be postponed as long as is feasible for the project
    • Options will be developed using in a collaborative approach
    • Input will be sought from Patient Care (Co-sponsor)
    • Input will be sought from a panel of industry experts who are focused on the use case for personal advance care plan documents. This group will not be directly involved with the creation of CDA templates, nor will they deal with the particulars of the publishing formalism of a CDA Implementation Guide. A separate non-technical meeting will be convened to partition the discussion
    • Working sessions will be conducted with a technical team who will focus on IG publication and CDA template design.
    • Final decisions will be governed through Structured Documents (Project Sponsor)
  • Expression of goals, preferences and priorities will be formulated as standard questions, but responses will not be limited to specific coded answers. The objective is to allow a person to answer a "known" question in what ever way fits their intention. Questions shall be structured and vocabulary will be created as a part of this project. Answers may be standardized by implementers, but they won't have to be to conform to this specification. Answers will be structured, but specific vocabulary for answers will not be in scope for this project.
  • The structure of the document, sections, and entries and the semantics used within will be as aligned with the C-CDA R2.1 Care Plan Document templates as is possible.

Project Information

• Project Listservs: strucdoc@lists.hl7.org patientcare@lists.hl7.org

• Project Scope Statement (as of 9/10/2015): http://www.hl7.org/documentcenter/public/wg/structure/PSS_StrucDocs_IG_for_CDA_R2_ACP_R1_2015%20v20150910.docx
• PROJECT ID#: 8614

Meeting Times

Current Agenda

Conference Calls Technical Team conference call Meets every Tuesday at 3:00 PM Eastern Time for 1 hour. 9/15/2015 Meeting Cancelled due to conflict. Next meeting on 9/22. Participation Information Phone Number: +1 (770) 657-9270 Participant Passcode: 310940 Web Meeting Info Join the Meeting Lisa Nelson to Host Industry Team conference call Once a month on Tuesdays at 5:00 PM Eastern Time for 1 hour. September 15, 2015 October 20, 2015 Participation Information GoTo Meeting Conf#: +1 (224) 501-3412 Access Code: 227-809-629 Web Meeting Info Join the Meeting Lisa Nelson to Host

Agenda Items Current Agenda - Technical Team Project Guiding Principles Requirements Analysis and Documentation Content Analysis Volume 1 Topics [document Current Version of Volume 1] Volume 2 Topics [document Current Version of Volume 2] Current Agenda - Industry Team Industry Team Introductions Role of the Industry Team Project Overview Goal, purpose, tasks and timeline Project Use Case review Project Name Discussion Functional Requirements Content needed to facilitate envisioned functionality Vocabulary Discussion Open discussion of other guiding considerations for the project HL7 process  - optional participation for non-members (not required, but possible)

Past Minutes

• 2015 09 08 Minutes - Technical Team
• 2015 09 15 Minutes - Technical Team
• 2015 09 15 Minutes - Industry Team
• 2015 09 22 Minutes Addendum - Industry Team
• 2015 09 22 Minutes - Technical Team
• 2015 09 22 Minutes Addendum - Industry Team
• 2015 09 22 Minutes - Technical Team

Open Issues

Open Issues (Last updated 9/2)

ISSUE #	Date Entered	Summary of Issue	Existing Positions	Proposed Options	Comments
101	2015-08-15	Project title needs to be finalized	Many different points of view exist regarding the ideal title for this project Some feel the title needs to be short to be manageable while other would prefer a longer and more descriptive name Some feel the words "advance care plan" are misleading because they do not see the association to "Care Plan" documents. Others would prefer to see the words "Goals, Preference, and Priorities" in the title. Some feel the word "Patient" or the words "Patient Generated" would help to clarify that this document is a type of patient generated document. Others prefer the term "patient" not be used because individuals may create an advance care document when they are not sick and not a "patient". They argue the term "patient" is too limiting. Significant discussions on the SDWG listserve regarding the use of the word "patient" or "person" or "individual". Keith Boone has started a survey to ask for feedback. (Posted on Motorcycle Guy blog 2015-09-02)	The project title will be reviewed with the industry team and this issue will remain open as additional feedback is sought.	The present "working title" will be used until an option is developed that carries consensus support

Artifact Archive

Volume 1

• [Volume 1 - First Draft]

Template Design Discussions

• [Designs for ACP entry templates]

Reference Resources

Resource (Last updated 9/23)

ITEM #	Date Added	Resource Title	Description	Link
01	2015-09-08	The Commission on Law and Aging, American Bar Association. Giving Someone a Power of Attorney For Your Health Care: A Guide with an Easy-to-Use, Legal Form for All Adults	The form in this guide is a simple version of a Health Care Advance Directive. It allows you to choose someone to make health care decisions for you if you can't. If you name a health care agent when you are healthy, you will make sure that someone you trust can make health care decisions for you if you are injured or become too ill to make them yourself.	http://wiki.hl7.org/index.php?title=File:2011_ABA_Model_Directive.pdf
02	2015-09-08	The La Crosse Region Power of Attorney for Healthcare Document	A document developed to meet the legal requirements of WI, MN, and IA. This document provides a way for a person to create a power of attorney for healthcare that will meet the basic requirements of these states. Resource includes detailed instructions about how to complete the document.	http://wiki.hl7.org/index.php?title=File:12860_POAHC.lse.12.08.pdf
03	2015-09-08	Department of Veterans Affairs - VA Advance Directive Durable Power of Attorney for Health Care and Living Will	This advance directive form is an official document where you can write own your preferences for your health care. If someday you can't make health care decisions for yourself anymore, this advance directive can help guide the people who will make decisions for you.	http://wiki.hl7.org/index.php?title=File:Veterans_Administration_Form_Advance_Directive_%28July_2012%29.pdf
04	2015-09-08	Advance Directives for Health Care, Oklahoma Bar Association	The form is offered as a public service by the Oklahoma Bar Association. Permission is granted to reproduce without modification.	http://wiki.hl7.org/index.php?title=File:OklahomaAdvDirective2006.pdf
05	2015-09-08	MyDirectives.com Universal Advance Directive Document	A sample UADD document for a fictitious person, Roger McBee. The advance directive document includes expressions of his medical treatment goals and preferences. There is no guarantee that your medical care providers will follow all of your wishes, but one this is certain: if your advance medical directives cannot be quickly located and retrieved when needed, then medical care providers, your family and friends, will not be able to take your wishes into consideration when they make critical decisions regarding your treatment.	http://wiki.hl7.org/index.php?title=File:Roger_McBee_uADD_%288-20-2014%29.pdf
06	2015-09-08	5 Wishes Advance Directive Document	A document that allows you to record your wishes for: the person you want to make care decisions for you when you can't, the kind of medical treatment you want or don't want, how comfortable you want to be, how you want people to treat you, and what you want your loved ones to know.	http://wiki.hl7.org/index.php?title=File:5wishes.pdf
07	2015-09-08	Adams Living Will & Power of Attorney for Health Care Kit. Copyright 2009, TOPS Downers Grove IL 60515. Provided under license from the copyright holder, Nova Publishing Co	A resource I found at Staples which helps people make their own health care wished know, control the care they receive, and ensure death with dignity if you become incapacitated.	Available from www.tops-products.com
08	2015-09-08	Baylor Heart and Vascular Hospital, A Guide to Your Care	Our goal while you are a patient in our hospital is to help you experience the best possible outcome from your stay. For this to happen, everyone--you, your family and your health care team--must all work together and communicate clearly [..] You may be very sick and hard choices may need to be made about your treatment. Making those decisions can be difficult and emotions may be strong. We hope the information in this guide will ease your mind, make you feel comfortable communicating with your health care team about your treatment or any other issues, and enhance the experience of both you and your family.	http://baylorhearthospital.com/a-guide-to-your-care.html
09	2015-09-08	Example of document content that IS NOT IN SCOPE for this project, Physician Orders for Life-Sustaining Treatment (POLST).	First follow these orders, then contact the physician. This document is a Physician Order Sheet based on the person's current medical condition and wishes. Any section not completed implies full treatment for that section. Everyone shall be treated with dignity and respect. This is an example of a document this IS NOT a Patient Generated Document. Although it may be completed after taking a person's wishes into consideration, it is not an example of the type of Patient Generated Document that this CDA Implementation Guides specifies.	http://wiki.hl7.org/index.php?title=File:California_POLST_Form_%282010%29.pdf
10	2015-09-12	Compassion and Choices: the Good-to-Go Tool Kit	A set of forms for expressing a person's end of life choices	www.compassionandchoices.org
11A	2015-09-23	Center for Practical Bioethics - Caring Conversations Workbook for Adults		www.practicalbioethics.org
11B	2015-09-23	Center for Practical Bioethics - Courageous Conversations Workbook for Veterans		www.practicalbioethics.org>
11C	2015-09-23	Center for Practical Bioethics - Caring Conversations Workbook for Young Adults		www.practicalbioethics.org>
11D	2015-09-23	Center for Practical Bioethics - Durable Power of Attorney for Healthcare Decisions		www.practicalbioethics.org>
11E	2015-09-23	Center for Practical Bioethics - DNR for outside a hospital		www.practicalbioethics.org>
11F	2015-09-23	Center for Practical Bioethics - DNR for inside a hospital - includes a Physician Order		www.practicalbioethics.org>
11G	2015-09-23	Center for Practical Bioethics - Witness Rules for Ads in KS and MO		www.practicalbioethics.org>
12	2015-09-23	National Hospice and Palliative Care Organization: Not in scope to analyze every state's advance directives.	Includes links to state specific Advance Directives	http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1
13	2015-09-23	MedlinePlus articles about Advance Directives		https://www.nlm.nih.gov/medlineplus/advancedirectives.html
14	2015-09-23	Assorted articles about the use of Advance Directives		http://www.npsf.org/blogpost/1158873/200782/A-New-Nationwide-Patient-Safety-Concern-Related-to-Living-Wills-DNR-Orders-and-POLST-Like-Documents http://www.medscape.com/viewarticle/835645 http://www.medscape.com/viewarticle/842419 https://m.youtube.com/watch?v=S6XKv7MOuts health IT article on pros and cons http://www.healthitoutcomes.com/doc/the-pros-and-cons-of-emr-in-end-of-life-care-0001 Time to Get it Right at the End of Life Click http://www.medpagetoday.com/HospitalBasedMedicine/Hospitalists/53673 for the full story:
15	2015-09-23	Catholic Church: Supportive Care Coallition (Committed to Advancing compassionate, holistic, coordinated palliative care.) Stages and Tools for Goals of Care Conversations		http://supportivecarecoalition.org/wp-content/uploads/2015/08/Stages-and-Tools-8-14.pdf
16	2015-09-23	EthnoMed: Cultural Relevance in End-of-Life Care, P.R. Coolen, DNP, MN, RN, 2012.		https://ethnomed.org/clinical/end-of-life/Table1.pdf
16A	2015-09-23	EthnoMed: End-of-Life Care Cultural Assessment Models with Sample Scripts		https://ethnomed.org/clinical/end-of-life/Table1.pdf
17	2015-09-23	Prepare For Your Care	Educational Material to help people prepare to create an advance care plan	www.prepareforyourcare.org
18A	2015-09-23	The Conversation.org: Starter-Kit		http://theconversationproject.org/wp-content/uploads/2015/09/TCP_StarterKit_Final.pdf
18B	2015-09-23	The Conversation.org: Starter-Kit in Spanish	Spanish translation of the Starter-Kit information	http://theconversationproject.org/wp-content/uploads/2015/06/TCP-StarterKit-Guide-Spanish-v1.8.pdf
19	2015-09-23	The American College of Physicians: A 2-Pronged Approach to Advance Directives	The 2-Pronged approach suggests that there are type types of directives in an advance care plan: advance directives and current care directives. These distinction are offered to define this view of "two types of directives" “Advance directives ask patients to anticipate what kinds of medical treatment they would want if they lose the ability to speak for themselves and make decisions in the future, as with Alzheimer's or other conditions that cause cognitive impairment,” Dr. Quill said. There are 2 main kinds of advance directives: 1) living wills where patients set out particular treatments they would want or not want if they lose the ability to make decisions in the future, and 2) health care proxies where patients designate a person to represent them for medical decisions if they cannot participate themselves in the future. “Current care directives cover the kinds of treatments one would and would not want if they develop an acute medical problem right now. Would they want to have CPR or breathing tubes? How aggressive should treatment be in an emergency?” Dr. Quill said. A new potentially life-threatening diagnosis, complications from chronic illness, or a general worsening of health might prompt this discussion, he added.	http://www.acpinternist.org/archives/2015/09/advanced-directive.htm
20	2015-09-23	Healthwise: Advance Directives - What to Include.		http://www.emedicinehealth.com/advance_directive_what_to_include-health/article_em.htm

Content Requirements

Structure for documenting key content requirements - TBD