PACIO Advance Directive Interoperability Implementation Guide
2.1.0 - STU 2 United States of America flag

PACIO Advance Directive Interoperability Implementation Guide, published by HL7 International / Patient Empowerment. This guide is not an authorized publication; it is the continuous build for version 2.1.0 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/HL7/fhir-pacio-adi/ and changes regularly. See the Directory of published versions

Example Bundle: Example-McBee-Bundle1


Generated Narrative: Composition

Resource Composition "Example-McBee-PACPComposition1" (Language "en-US")

Profile: ADI Personal Advance Care Plan Composition

Version Number: 1

Data Enterer: See on this page: Patient/Example-McBee-Patient1

Effective Date: 2018-08-28 08:49:58-0400 --> (ongoing)

Informant: See on this page: RelatedPerson/Example-McBee-HealthcareAgent1

Participant: See on this page: RelatedPerson/Example-McBee-HealthcareAgent1

Performer: : Advance Directives, Inc.

identifier: urn:oid:2.16.840.1.113883.4.823.1.7124/20130607100315-CCDA-CCD

status: FINAL

type: Patient Personal advance care plan (LOINC#81334-5)

category: Advance directives (LOINC#42348-3)

date: 2018-08-28 08:49:58-0400

author: : author name in PDF attachment

title: Personal Advance Care Plan Document for Roger McBee

custodian: See on this page: Organization/Example-McBee-OrganizationCustodian1


Appointment of a Primary Healthcare Agent and Alternate Healthcare Agents

It is very important for you to discuss your medical treatment goals and wishes with your healthcare agent, your family, and your medical care providers. Keep in mind that advance medical directives are simply expressions of your medical treatment goals and preferences. There is no guarantee that your medical care providers will follow all of your wishes, but one thing is certain: If your advance medical directives cannot be quickly located and retrieved in a time of need, 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.

IF THIS PART OF THE uADD™ IS LEFT BLANK, I DO NOT WANT TO DESIGNATE A HEALTHCARE AGENT AT THIS TIME, AND I DO NOT WANT A DEFAULT HEALTHCARE AGENT DESIGNATED FOR ME UNDER APPLICABLE LAW. I TRUST THE DOCTORS AND NURSES TREATING ME TO MAKE MEDICAL TREATMENT DECISIONS REGARDING MY TREATMENT AND CARE.

I am appointing the person or persons below as my healthcare agent and, if applicable, as my alternate healthcare agent(s), and I am granting to each of them the legal authority to make medical treatment decisions on my behalf and to consult with my physician and others. The power to make medical treatment decisions that I am granting to my healthcare agent(s) is expressly subject to, and limited by, the choices that I have expressed elsewhere in my uADD. If my medical treatment choices are not clear, I am authorizing and directing my healthcare agent to make decisions in my best interests and based on what is known of my wishes.

Primary Healthcare Agent

The person I choose as my Primary Healthcare Agent is:

Sally Bobbins

SallyBobbins@example.com

[SELECTED to act as a healthcare agent on 3/23/2018, at 9:13 AM CST]

[As of 12/6/2019, at 1:11 AM CDT, a response is still PENDING]

First Alternate Healthcare Agent

If this healthcare agent is unable or unwilling to make medical treatment decisions for me, or if my spouse is designated as my primary healthcare agent and our marriage is annulled, or we are divorced or legally separated, then my next choice for a healthcare agent is:

S. Leonard Susskind (Friend)

ssuskind@example.com

[SELECTED to act as a healthcare agent on 3/23/2018, at 9:13 AM CST]

[ACCEPTED to act as a healthcare agent on 3/23/2018, at 9:14 AM CST]

My Healthcare Agent’s General Authority

Subject to my medical treatment choices expressed elsewhere in this uADD™ and applicable law that requires otherwise, I grant to my healthcare agent the power to make all choices and medical treatment decisions for me.

Here are some specific instructions that expand or limit the powers I have just granted to my healthcare agent(s):

  • If my healthcare agent's decisions conflict with my instructions, I want my healthcare agent's decisions to take priority.
  • If I cannot express my own wishes for medical treatment, I would like the doctors treating me, as well as my healthcare agent if I have chosen one, to make decisions based as much as possible and appropriate on my instructions below.
  • If at some point in the future I am declared incompetent, I DO NOT want to be allowed to override these preferences. I want my doctors to follow the preferences I express in this document.

Unless I have stated otherwise somewhere else in this uADD™, I understand that my healthcare agent may reconsider my medical treatment choices expressed above in light of my other instructions contained elsewhere in this uADD™ or new medical information.

Patient Goals, Preferences, and Priorities for Care Experience

MyDirectives® offers people a list of optional questions that can be answered by typing text in a text box or by uploading a video or audio file for each question. Only those questions answered by Roger Rienman McBee appear here. For a complete list of questions in My Thoughts, please visit www.MyDirectives.com.

In case I’m being cared for by a person(s) who doesn't know me very well, I’d like my following thoughts to be known.

My likes / joys: Here are some examples of the things that I would like to have near me, music that I’d like to hear, and other details of my care that would help to keep me happy and relaxed:

Like Bach, especially the cantatas. St. Martin in the Fields

How to care for me: If I become incapacitated and cannot express myself, here is what I would like to tell my healthcare agent, family and friends about how I would like for them to care for me:

I don’t like being treated like an object. I would like to be greeted like a person before working on me.

Please attempt to notify someone from my religion at the following phone number: (If I have included one)

Not Religious

My unfinished business: If it appears that I am approaching the end of my life, and I cannot communicate with persons around me, I would want my doctors and nurses, my family, and my friends to know about some unfinished business that I need to address:

I am awaiting a message from the Noble Committee. Please keep me alive if I look promising this year.

Goals, Priorities, and Preferences under certain health condition

My Advance Care Goals

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

  1. Being at peace with my God
  2. Dying at home
  3. Being able to feed, bathe, and take care of myself
  4. Being free from pain
  5. Resolving conflicts
  6. Being with my family
  7. Not being a financial burden to my family

If I am having significant pain or suffering, I would like my doctors to consult a Supportive and Palliative Care Team to help treat my physical, emotional and spiritual discomfort, and to support my family.

My Preferences in Specific Circumstances

In addition to the general advance care goals provided above, below are specific treatment preferences with respect to certain specific circumstances or situations.

If my health ever deteriorates due to a terminal illness, and my doctors believe I will not be able to interact meaningfully with my family, friends, or surroundings, I prefer that they stop all life-sustaining treatments and let me die as gently as possible. I realize that I will not receive life-sustaining treatments including but not limited to breathing machines, blood transfusions, dialysis, heart machines, and IV drugs to keep my heart working. I also realize that medical personnel will not attempt cardiopulmonary resuscitation (CPR), and they will allow me to die naturally.

If my response above indicates that I do not want life-sustaining treatments,

I expressly authorize my attending physician to withhold or withdraw artificial nutrition and hydration and instruct my healthcare agent (or, if I have not designated a healthcare agent, my default surrogate), my family and the doctors and nurses who are taking care of me to respect this request.

If I have a severe, irreversible brain injury or illness and can’t dress, feed, or bathe myself, or communicate my medical wishes, but doctors can keep me alive in this condition for a long period of time, I would like for them to keep trying life-sustaining treatments for 2 months.

Although I understand that, depending on the situation and circumstances, medical personnel may not be able to follow my wishes, here are my general thoughts on cardiopulmonary resuscitation (CPR):

I do not want CPR attempted.

I want my healthcare agent to make the decision, but if my chances are slim to none that I'll leave the hospital, even if they resuscitate me, then I absolutely do not want CPR.

Other Instructions

If it were possible to choose, here is where I would like to spend my final days:

At home.I would like to receive hospice care at home if possible.

Goals, Preferences and Priorities upon Death

Consent to Donate

I don’t want to donate my organs.

Autopsy

I want an autopsy if my doctor thinks it will help others.

Here are my thoughts on funeral or burial plans:

If I were to pass away: I have a plot. My wife has the details, also my secretary, Ms. Williams, will know.

Witnesses and Notary

I am emotionally and mentally competent to make this uADD. I understand the purpose and effect of this uADD, I agree with everything that is written in this uADD, and I have made this uADD knowingly, willingly and after careful deliberation.

Signature:Roger R. McBee
Date:8/28/2018

Statement of Witnesses

I declare that the person who signed this uADD, or who asked another to sign this uADD on his/her behalf, is the individual identified in the document, and he/she did so in my presence or otherwise provided satisfactory proof to me of his/her identity. I believe him/her to be of sound mind and at least 18 years of age. I personally witnessed him/her sign this document or ask the person indicated to do so, or I received proof of his/her identity that I believe is adequate, and I believe that he/she did so voluntarily. By signing this document as a witness, I certify that I am:

  1. At least 18 years of age.
  2. Not related to the person signing this document by blood, marriage or adoption.
  3. Not a healthcare agent appointed by the person signing this document.
  4. Not directly financially responsible for that person’s healthcare.
  5. Not a healthcare provider directly serving the person at this time.
  6. Not an employee (other than a social worker or chaplain), officer, director, or partner of a healthcare provider (or any parent organization of such healthcare provider) directly serving the person at this time.
  7. Not aware that I am entitled to or have a claim against the person’s estate.

Witness Number:
Signature:
Date:

Additional Document Content


2. http://www.example.org/fhir/Patient/Example-McBee-Patient1 (Patient/Example-McBee-Patient1)

Anonymous Patient Male, DoB: 1945-04-01 ( Social Beneficiary Identifier: United States Social Security Number#555-12-1246)


3. http://www.example.org/fhir/RelatedPerson/Example-McBee-HealthcareAgent1 (RelatedPerson/Example-McBee-HealthcareAgent1)

Primary Healthcare Agent

The person I choose as my Primary Healthcare Agent is:

Sally Bobbins (daughter)

SallyBobbins@example.com

[SELECTED to act as a healthcare agent on 3/23/2018, at 9:13 AM CST]

[As of 12/6/2019, at 1:11 AM CDT, a response is still PENDING]


4. http://www.example.org/fhir/RelatedPerson/Example-McBee-HealthcareAgent2 (RelatedPerson/Example-McBee-HealthcareAgent2)

First Alternate Healthcare Agent

If this healthcare agent is unable or unwilling to make medical treatment decisions for me, or if my spouse is designated as my primary healthcare agent and our marriage is annulled, or we are divorced or legally separated, then my next choice for a healthcare agent is:

S. Leonard Susskind (Friend)

ssuskind@example.com

[SELECTED to act as a healthcare agent on 3/23/2018, at 9:13 AM CST]

[ACCEPTED to act as a healthcare agent on 3/23/2018, at 9:14 AM CST]


5. http://www.example.org/fhir/Consent/Example-McBee-HealthcareAgentConsent (Consent/Example-McBee-HealthcareAgentConsent)

status: active

scope: Powers granted to healthcare agent [Reported]

category: Advance Directive

patient: Social Beneficiary Identifier: 555-12-1246, Roger Rienman McBee; Phone: +1(469)238-2858, Phone: +1(214)497-9529, rogerb@example.com; gender: male; birthDate: 1945-04-01

dateTime: 2020-08-03

Policies

-AuthorityUri
*https://www.michigan.gov/http://www.legislature.mi.gov/(S(tpnclc1ofteerx2x2dppcmdz))/mileg.aspx?page=GetObject&objectname=mcl-386-1998-V-5

provision

type: permit

actor

role: Primary healthcare agent [Reported]

reference: Bobbins Sally ; SallyBobbins@example.com

actor

role: First alternate healthcare agent [Reported]

reference: unrelated friend; Susskind S. Leonard ; ssuskind@example.com

action: Advance directive - request for intubation, Advance directive - request for tube feeding, Advance directive - request for life support

purpose: power of attorney


6. http://www.example.org/fhir/CarePlan/Example-McBee-PreferenceCarePlan1 (CarePlan/Example-McBee-PreferenceCarePlan1)

Generated Narrative: CarePlan

Resource CarePlan "Example-McBee-PreferenceCarePlan1"

Profile: ADI Preference Care Plan

status: ACTIVE

intent: PROPOSAL

category: Assessment and Plan of Treatment (US Core CarePlan Category Extension Codes#assess-plan), Goals, preferences, and priorities under certain health conditions [Reported] (LOINC#81378-2)

title: Care Plan for Unconscious, vegetative state, coma for McBee

subject: See on this page: Patient/Example-McBee-Patient1

addresses:

  • Unconscious, in a coma, or in a persistent vegetative state with little or no chance of recovery
  • Persistent vegetative state (SNOMED CT 24473007)
  • Irreversible coma (SNOMED CT 73453007)

supportingInfo:


7. http://www.example.org/fhir/Observation/Example-McBee-CareExperiencePreference1 (Observation/Example-McBee-CareExperiencePreference1)

My likes / joys: Here are some examples of the things that I would like to have near me, music that I’d like to hear, and other details of my care that would help to keep me happy and relaxed:

Like Bach, especially the cantatas. St. Martin in the Fields


8. http://www.example.org/fhir/Observation/Example-McBee-CareExperiencePreference2 (Observation/Example-McBee-CareExperiencePreference2)

How to care for me: If I become incapacitated and cannot express myself, here is what I would like to tell my healthcare agent, family and friends about how I would like for them to care for me:

I don’t like being treated like an object. I would like to be greeted like a person before working on me.


9. http://www.example.org/fhir/Observation/Example-McBee-CareExperiencePreference3 (Observation/Example-McBee-CareExperiencePreference3)

Please attempt to notify someone from my religion at the following phone number: (If I have included one)

Not Religious


10. http://www.example.org/fhir/Observation/Example-McBee-CareExperiencePreference4 (Observation/Example-McBee-CareExperiencePreference4)

My unfinished business: If it appears that I am approaching the end of my life, and I cannot communicate with persons around me, I would want my doctors and nurses, my family, and my friends to know about some unfinished business that I need to address:

I am awaiting a message from the Noble Committee. Please keep me alive if I look promising this year.


11. http://www.example.org/fhir/List/Example-McBee-PersonalPrioritiesOrganizer1 (List/Example-McBee-PersonalPrioritiesOrganizer1)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

  1. Being at peace with my God
  2. Dying at home
  3. Being able to feed, bathe, and take care of myself
  4. Being free from pain
  5. Resolving conflicts
  6. Being with my family
  7. Not being a financial burden to my family


12. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference1 (Observation/Example-McBee-PersonalInterventionPreference1)

If I am having significant pain or suffering, I would like my doctors to consult a Supportive and Palliative Care Team to help treat my physical, emotional and spiritual discomfort, and to support my family.


13. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference2 (Observation/Example-McBee-PersonalInterventionPreference2)

If my health ever deteriorates due to a terminal illness, and my doctors believe I will not be able to interact meaningfully with my family, friends, or surroundings, I prefer that they stop all life-sustaining treatments and let me die as gently as possible. I realize that I will not receive life-sustaining treatments including but not limited to breathing machines, blood transfusions, dialysis, heart machines, and IV drugs to keep my heart working. I also realize that medical personnel will not attempt cardiopulmonary resuscitation (CPR), and they will allow me to die naturally.


14. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference3 (Observation/Example-McBee-PersonalInterventionPreference3)

If my response above indicates that I do not want life-sustaining treatments,

I expressly authorize my attending physician to withhold or withdraw artificial nutrition and hydration and instruct my healthcare agent (or, if I have not designated a healthcare agent, my default surrogate), my family and the doctors and nurses who are taking care of me to respect this request.


15. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference4 (Observation/Example-McBee-PersonalInterventionPreference4)

If I have a severe, irreversible brain injury or illness and can’t dress, feed, or bathe myself, or communicate my medical wishes, but doctors can keep me alive in this condition for a long period of time, I would like for them to keep trying life-sustaining treatments for 2 months.


16. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference5 (Observation/Example-McBee-PersonalInterventionPreference5)

Although I understand that, depending on the situation and circumstances, medical personnel may not be able to follow my wishes, here are my general thoughts on cardiopulmonary resuscitation (CPR):

I want my healthcare agent to make the decision, but if my chances are slim to none that I'll leave the hospital, even if they resuscitate me, then I absolutely do not want CPR.


17. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference6 (Observation/Example-McBee-PersonalInterventionPreference6)

Although I understand that, depending on the situation and circumstances, medical personnel may not be able to follow my wishes, here are my general thoughts on cardiopulmonary resuscitation (CPR):

I want my healthcare agent to make the decision, but if my chances are slim to none that I'll leave the hospital, even if they resuscitate me, then I absolutely do not want CPR.


18. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference7 (Observation/Example-McBee-PersonalInterventionPreference7)

If it were possible to choose, here is where I would like to spend my final days:

At home.I would like to receive hospice care at home if possible.


19. http://www.example.org/fhir/Observation/Example-McBee-PersonalInterventionPreference8 (Observation/Example-McBee-PersonalInterventionPreference8)

Here are my thoughts on funeral or burial plans:

If I were to pass away: I have a plot. My wife has the details, also my secretary, Ms. Williams, will know.


20. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal1 (Goal/Example-McBee-PersonalGoal1)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Being at peace with my God


21. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal2 (Goal/Example-McBee-PersonalGoal2)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Dying at home


22. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal3 (Goal/Example-McBee-PersonalGoal3)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Being able to feed, bathe, and take care of myself


23. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal4 (Goal/Example-McBee-PersonalGoal4)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Being free from pain


24. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal5 (Goal/Example-McBee-PersonalGoal5)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Resolving conflicts


25. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal6 (Goal/Example-McBee-PersonalGoal6)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Being with my family


26. http://www.example.org/fhir/Goal/Example-McBee-PersonalGoal7 (Goal/Example-McBee-PersonalGoal7)

If I am so sick or seriously injured that I cannot express my own medical treatment preferences, and if I am not expected to live without additional treatment for my illness, disease, condition or injury, then I want my medical care team to know that these are the things that are most important to me:

Not being a financial burden to my family


27. http://www.example.org/fhir/Observation/Example-McBee-OrganDonationObservation1 (Observation/Example-McBee-OrganDonationObservation1)

Consent to Donate

I don’t want to donate my organs.


28. http://www.example.org/fhir/Observation/Example-McBee-AutopsyObservation1 (Observation/Example-McBee-AutopsyObservation1)

Autopsy

I want an autopsy if my doctor thinks it will help others.


29. http://www.example.org/fhir/Organization/Example-McBee-OrganizationCustodian1 (Organization/Example-McBee-OrganizationCustodian1)

Generated Narrative: Organization

Resource Organization "Example-McBee-OrganizationCustodian1"

Profile: US Core Organization Profile

identifier: United States National Provider Identifier/1234567893

active: true

name: MyDirectives.com

Contacts

-TelecomAddress
*+1(202)776-7700740 E. Campbell Rd. Suite 825 Richardson TX 75081 US