BEST COMPREHENSIVE RESOURCE FOR DEMENTIA END OF LIFE PLANNING
Dr. Barak Gaster
UW Professor of Medicine and a Primary/Internal Medicine Doctor
GUIDELINES AND FORMS: https://dementia-directive.org
Read JAMA essay about demntia goals of care conversations: https://jamanetwork.com/journals/jama/fullarticle/2662678?guestAccessKey=62c6fc8c-aad3-4f4f-8196-3f3f2c37de4a
Values Checklist and Guide: My Choices Near the Ending of Life
1. Most important of all to me when thinking about end of life choices are:
___maintain my dignity & integrity ___other_____________________________________________________________________
___reflecting my values & beliefs ___recognizing family & friends ___having a say about care needs ___able to do things I enjoy doing
___the ability to direct my life decisions ___making my own decisions
___maintaining my sense of independence ___receiving palliative (comfort) care & hospice
___relief of pain and suffering
___to die naturally at home, if possible ___live as long as possible no matter what
2. In terms of living through serious illness and the ending of life, I define quality of life as:
3. If I could choose where I would be when I am dying, I would want to be:
__ at home __ in the hospital __in the nursing home __other_________________
4. What do you think about life-sustaining treatment? This means any medication, medical procedure or device that could be used to keep you alive when you otherwise would naturally die. This would include such things as: Cardiopulmonary resuscitation (CPR), using a breathing machine, using mechanical means to maintain blood pressure and heart rate, antibiotics, getting food or water by medical device (tube feeding), and other invasive treatments. What would you want to have in each situation below?
• If you were near death with a terminal illness?
• If your brain's thinking function were destroyed?
• If you were moderately disabled by dementia e.g. Alzheimer's Disease?
5. What are some of the other things that are important to you?
__use __don’t use __use __don’t use __use __don’t use
__use __don’t use
___ nature of care should not devastate my family
___ to be pain free and comfortable
___ my spiritual care and well being
___ to be returned to my home land after I die, that being_________________________________ ___ other_________________________________________________________________________
6. Which family and friends would help you with your care when you are unable to care for yourself?
7. Do your loved ones know your wishes, values and beliefs about end of life care? __yes __no
8. Have you talked to your doctor about these issues? __ yes __ no
__ my religious beliefs and traditions
__ after death care issues
__ to be in a comfortable peaceful setting
Other Things to Consider Concerning My End of Life Wishes
(If you do not do this part now, it is a good idea to think about these things and complete later.)
9. I am a member of an organized church or religion? __yes __no
My specific faith, congregation or spiritual practice is ___________________________________
10. To help attend to my spiritual needs as death approaches, I would call upon:
11. When I am dying I would like my surroundings as follows and I would like to have with me these special possessions:
12. As I am near to the end of my life, I would like these people informed: 13. Following my death, I would like to also inform these people:
14. I have written or will write an announcement of death (obituary): ___yes ___no
15. My wishes for after-death care are for ___ natural death care _ burial ___cremation My wishes for memorial activity are as follows:
16. If I have made arrangements, the contact person/phone is_________________________
17. Other things important for someone to know about me, in the event that I become incapacitated or my death is close at hand?
18. ____________________________________ ____________________________________ (your signature/date) (optional - witness signature/date)
Please attach additional sheets if needed. When completed, copy and share this with your doctor, family and caregivers and make time for meaningful conversations in the process. It also is important to properly complete an Advance Health Care Directive (AHCD) and distribute that to people who may need to guide your care if and when you become unable to make your wishes known and honored. When completing the AHCD, we recommend that you attach to your AHCD this completed Values Checklist and Guide (or something similar) and note in AHCD under "Special Instructions:" see Values Checklist attached. Advance Health Care Directive forms are available without charge from physicians, hospitals, social service providers, care homes and others. Permission is herein granted for you to reproduce this for individual personal use. Professionals must have permission to reproduce and use.
© 10/96, 9/08 Susan Keller, Community Network (707) 539-2364 [email protected] www.CaringCommunity.org
IMPORTNAT DOCUMENTS. Please Print and Complete:
Advance-Directive Healthcare IQ
Advance-Directives FORMS, WA
Advance-Directives-Dementia FORMS, WA
Dear Family, End of Life Wishes and Directives Letter Template
Each deck has 36 cards. Thirty-five of the cards describe things that people often say are important when they are very sick or dying. The cards describe how people want to be treated, who they want near them, and what matters to them. One card is a "wild card." You can use this card to stand for something you want that isn't on any of the other cards.
To learn more please go to: http://www.gowish.org/article.php/how_to_play
The My Health Care Wishes App
(Google Play | Apple App Store)
Imagine having your wishes and those belonging to your loved ones stored in one place, just a click away. You can carry their health care wishes on your smartphone and they can carry your wishes on theirs.
If you have documented your health care wishes in any way, you don’t want them tucked away in a safety deposit box or in a file cabinet somewhere. Import and store them on your smartphone so they are there for medical decision-making anytime, anywhere. You can also include key family and medical contacts, insurance information, and any other health related information you want. Your information is protected because the data resides only on your smartphone, not on any server or cloud service.
The app offers unlimited storage and management of personal and family profiles and documents, including advance directives, living wills, health care powers of attorney, DNR orders, POLST documents (Physician Orders for Life-Sustaining Treatment), and related information. It is designed to revolutionize information sharing during a medical crisis so that your advance care documents and key medical information can be conveyed as a PDF and delivered to a hospital or physician in minutes.
The information is easily accessible to view, text, email, or fax no matter where you are. Always be there for each other, just in case.
You will have a digital library in your hand, containing your advance care plan and those of your spouse, parents, children, and anyone you care for. Your loved ones may be away at college, in a retirement community or nursing home, working in a different city, or under the same roof.
Think of it as the empowerment app that ensures that yours and your loved one’s voices can be heard when most needed.
- Unlimited storage of people profiles and documents
- Confidentiality of information is protected because the data resides only on your smartphone, not on any server or cloud service
- Email or fax stored documents to a health care provider — be prepared in case of emergency to advocate for your loved ones, no matter where you are
- Stores key contact information on primary and secondary proxies, and primary care physician
- Store additional details about you and your loved ones: specialists, emergency contacts, insurance, and medical conditions
- Click-to-call and click-to-email feature gives you an instant connection to those whose profiles you've stored
- Sync to your DropBox account to allow for easy importing and exporting of PDF documents
- Grabs contact information from your contacts list
- Summary of health care wishes can be shown or sent via text, fax, or email to health care providers
- PDF summary worksheet included for ease in collecting the information needed to customize a folder
- Allows editing and updating documents as you age and your health status changes
- Keeps track of document versions by date entered
- Wallet card download available
- ABA multi-state power of attorney toolkit PDF for use in most states
Resource tips and links to help you plan smart and effectively!