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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:

Meeting Times Current Agenda

Conference Calls

Technical Team conference call

Meets every Tuesday at 3:00 PM Eastern Time for 1 hour.

Next meeting on 2/2/2016

No meeting on 1/26/2016

No meeting on 2/16/2016

No meeting on 3/1/2016

No meeting on 3/15/2016

Meetings to prepare ballot reconciliation completed 3/15/2016

Change implementation review will be scheduled and announced through SDWG

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

Tuesdays at 5:00 PM Eastern Time for 1 hour. (As needed.)
September 15, 2015
October 20, 2015
November 17, 2015
January 19, 2016
June 21, 2016

Participation Information

Phone Number:Dial +1 (646) 749-3122
Access Code: 264-984-949

Web Meeting Info

Join the Meeting

Lisa Nelson to Host

Agenda Items

Current Agenda - Technical Team

  1. Ballot Reconciliation

Current Agenda - Industry Team

  1. Industry Team Review Introductions
  2. Project Review
  3. Update on HL7 Ballot and process
  4. Open discussion of other guiding considerations for the project

Past Minutes

Open Issues

Open Issues (Last updated 3/22/2016)

ISSUE # Date Entered Summary of Issue Existing Positions Proposed Options Comments
1 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)
During the HL7 F2F, this issue was further discussed without arriving at a general consensus. Additional arguments were made for keeping the word "Directives" in the title of the project as this is key to connecting to the currently most associated concept of "Advance Directives". Scott Brown further provided three key issues to consider when selecting the Project title:

  • 1. “Consumer” or “Personal” — this is consumer-generated or person-generated, non-clinical information that is in line with Meaningful Use Stage 3 — Objective 6, Measure 3, so words like “consumer” or “personal” — or even “non-clinician/clinical” — would be appropriate.
  • 2. “Emergency, Critical and Advance” vs. “Advance” — In the healthcare space, the terms “advance” (as in, “advance directive” — something you do in advance) and “advanced” (as in, “advanced illness” — a condition experienced by individuals when many older, more traditional/conservative physicians believe is the only time that an advance directive is appropriate) are often confused. Most importantly, the information included is this document is important in situations other than those addressed by traditional advance directives (i.e., terminal illness or traumatic brain injury resulting in a permanent vegetative state). The information in this document is important any time a person becomes a patient and cannot communicate with caregivers or the care team. Consequently, terms like “emergency” and/or “critical” would be appropriate to add to the name of the project. Again, the information that will be included in this document is broader than just the traditional notion of “advance” directives.
  • 3. “Care Plan” vs. “Directives”— Advance directives traditionally only include living wills (patient choices with respect to specific life-sustaining treatments), medical powers of attorney (choosing healthcare agents and enumerating their powers), and sometimes Do-Not-Resuscitate Orders. The information this document will capture is much broader — patient goals, preferences and priorities; wishes for hospice care; wishes for palliative care; organ donation; autopsy; etc. Consequently, the term Advance “Directives” would insufficiently describe the contents and, in a worst-case scenario, it would be misleading to clinicians who see the document exists but don’t realize that it contains all of the additional information listed. Advance “Care Plan” is broader in scope and more appropriate in this instance. In addition, the term “advance directives” has a negative connotation because of its history of failure as either a quality of care improvement tool or a cost containment tool.
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

Closed Issues (Last updated 4/11)

ISSUE # Date Entered Summary of Issue Existing Positions Proposed Options Comments
3 2016-03-22 I would like to be able to include some additional concepts for the three levels of Health Care Power of attorney and if they have accepted their role. The ballot changes will fix the entry-level templates in the Healthcare Agent Section. For privacy reasons, it will be better not to repeat the person's choices in the header (and hence could be indexed into a registry). We will remove reference to the Healthcare Agent participations in the header. Moving this to a closed issue.
2 2016-03-24 Use of the classCode for ASSEMBLER to be used with the device participant is not yet available in CDA R2.0 This solution was proposed in the DPROV specification and has been included in CDA R2.1. Is there some way to create an extension to allow this use now under CDA R2.0? Guidance from SDWG will be sought on how to address this need. The guidance on the issue within HL7 has not reached consensus. Until C-CDA adopts a different position on how to represent a system used to create a document, this PACP IG will not move toward adopting guidance from the DPROV IG. The PACP IG will continue to use the device author as is specified in C-CDA.
4 2016-03-22 I would like to be able to further constrain the Patient Generated Document header, and only include additional constraints that are not in the Patient Generated Document header:

clinicalDocument.code => constrain to the LOINC Code for Patient Generated Personal Advance Care Plan Document. => constrain to only allow "SELF" => don't allow the system to be documented as the author, require this information to go in a participation with typeCode=DEV and classCode of Assembler

The PACP header will further constrain the Patient Generated Document header template to restrict to SELF. We will not alter the current constraints on
5 2016-03-22 We need to clarify if the Document template further constrains the header template or if the Document template "contains" the header template. Guidance from Templates Workgroup and SDWG was sought on how to address this need. It doesn't matter which way you look at this. We will go with the interpretation used previously in SDWG work on C-CDA and the document template will imply the header template.

Artifact Archive

Ballot Reconciliation Spreadsheet

Tracking Progress on Implementation of Comment Resolutions


January 2016 Submitted Ballot Materials

Volume 1 DRAFTS

Volume 2 DRAFTS

Sample Document DRAFTS

Design Discussions

Template Design Discussions

Reference Resources

Resource (Last updated 10/23)

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.
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.
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.
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.
05 2015-09-08 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.
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.
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

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.
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.
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
11A 2015-09-23 Center for Practical Bioethics - Caring Conversations Workbook for Adults
11B 2015-09-23 Center for Practical Bioethics - Courageous Conversations Workbook for Veterans>
11C 2015-09-23 Center for Practical Bioethics - Caring Conversations Workbook for Young Adults>
11D 2015-09-23 Center for Practical Bioethics - Durable Power of Attorney for Healthcare Decisions>
11E 2015-09-23 Center for Practical Bioethics - DNR for outside a hospital>
11F 2015-09-23 Center for Practical Bioethics - DNR for inside a hospital - includes a Physician Order>
11G 2015-09-23 Center for Practical Bioethics - Witness Rules for Ads in KS and MO>
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
13 2015-09-23 MedlinePlus articles about Advance Directives
14 2015-09-23 Assorted articles about the use of Advance Directives

health IT article on pros and cons

Time to Get it Right at the End of Life

Click 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
16 2015-09-23 EthnoMed: Cultural Relevance in End-of-Life Care, P.R. Coolen, DNP, MN, RN, 2012.
16A 2015-09-23 EthnoMed: End-of-Life Care Cultural Assessment Models with Sample Scripts
17 2015-09-23 Prepare For Your Care Educational Material to help people prepare to create an advance care plan
18A 2015-09-23 The Starter-Kit
18B 2015-09-23 The Starter-Kit in Spanish Spanish translation of the Starter-Kit information
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.
20 2015-09-23 Healthwise: Advance Directives - What to Include.
21 2015-10-23 Research on advance directives and advance care planning Advance Directives and Advance Care Planning: Report to Congress, prepared under contract #HHS-100-03-0023 between the U.S. Department of Health and the RAND Corporation (August 2008).
22 2015-10-23 Research on advance directives and advance care planning Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Institute of Medicine. Washington, D.C.: The National Academies Press (September 2014).
23 2015-10-23 Research on consumer attitudes towards ECA care planning: Final Chapter: Californian’s Attitudes and Experiences with Death and Dying. California HealthCare Foundation (February 2012).
24 2015-10-23 Research on consumer attitudes towards ECA care planning: Kaiser Health Tracking Poll: September 2015. The Henry J. Kaiser Family Foundation (September 30, 2015).
25 2015-10-23 Research on consumer attitudes towards ECA care planning: Value-Based Payments Require Valuing What Matters to Patients. J Lynn, A McKethan and AK Jha. JAMA, Vol. 314, No. 14 (published online September 17, 2015).
26 2015-10-23 Research on consumer attitudes towards ECA care planning: A Better End of Life. D Kendall and E. Quill. Third Way Report (published online September 29, 2015).

Content Requirements

Structure for documenting key content requirements - TBD