Difficult Conversations: Completing Advance Directives with Five Wishes
Much like a “Last Will and Testament” directs where your possessions go after you pass away, an Advance directive, such as a “Living Will,” is a written document that describes your wishes for medical care in the event an individual has a terminal illness with little chance of returning to a quality life.
For our loved ones with Alzheimer’s or Dementia, such a document is critical since we know the disease will eventually rob them of their ability to make decisions.
Five Wishes is a unique publication that serves as a guide to completing a Living Will, making the process easier.
Making decisions about advanced directives for a loved one with Alzheimer’s or Dementia can be an emotionally complex and deeply challenging process. As dementia progresses, individuals gradually lose the capacity to make informed decisions about their own care, placing family members and caregivers in the difficult position of having to interpret their wishes and values. Completing a Five Wishes document in advance can help you navigate their care during a difficult time.
Five Wishes
Five addresses medical wishes, as well as personal, emotional, and spiritual needs. It allows your loved one to choose the person who will make medical decisions on their behalf if they are unable to, specify the type of medical treatment they desire or wish to avoid, communicate their desired level of comfort, express how they prefer to be treated, and share important information for their loved ones.
The Five Wishes document is available in either a digital copy ($7.50) or a printed copy ($5.00). It is legally binding in all 50 states and is available in 30 different languages. You can also order a starter kit, which includes five printed copies and a conversation guide, for $20.00. Please note pricing reflects cost as of 2025 and is subject to change.
For more information on the Five Wishes document visit https://www.fivewishes.org/.
Practical Strategies to Navigate the Conversation about Completing Advance Directives:
As a caregiver, discussing end-of-life care with a loved one is one of the most challenging conversations you can have. Your loved one may refuse to engage in the conversation or become emotionally overwhelmed and withdrawn.
Here are some strategies to use when discussing Advance Directives with your loved one:
Choose the Right Time and Setting
Choose a time when your loved one is most alert and relaxed.
Create a calm environment by eliminating distractions (e.g., turn off the TV, silence phones, sit face-to-face).
Involve Trusted People
Include familiar caregivers or family members who bring a sense of safety.
Allow them to engage in the conversation to reinforce understanding and provide emotional support.
If they resist the conversation entirely, you sense they cannot participate fully, or it appears to be triggering upset, you may need to make these decisions differently. Please discuss with your NAN Navigator what steps you can take. Often, your loved one’s primary care provider can also be of assistance in this situation.
Introduce the Topic Slowly
Break it down into small steps
Go at your loved one’s pace. If using Five Wishes, focus on one wish at a time. If needed, take breaks.
Prioritize the most time-sensitive wishes (e.g., medical decisions) if attention span is limited.
Use Simple, Clear Language
Break down terms that may be difficult for your loved one to understand.
Use yes/no or either/or questions rather than open-ended ones.
Example: Instead of “What kind of care do you want?” try “Would you prefer to be at home or in a hospital if you get very sick?”
Validate Their Feelings
Acknowledge past comments your loved one has made. Reminisce gently to help anchor the conversation emotionally.
Example: “You always said you didn’t want machines keeping you alive. Is that still how you feel?”
Take time to validate their emotions if they become upset.
Example: “I know this is hard to talk about. It is hard for me too, but I value your input and want to honor your wishes. Do you want to take a break, or should we continue?”
Use Visual Aids or Examples
Utilize relatable examples and experiences to illustrate choices for your loved one.
For example: "Remember how your friend, Ms. Jen, had a hospice nurse at home? Would that feel comforting to you?"
Have a copy of Five Wishes or another Advance Directive document available for review.
Consider writing out the key decisions that need to be made.
For example:
Is there someone you would want to help make decisions for you if you could not?
Do you want to stay at home or go to the hospital if you get sick?
When the time is right, should we ask Hospice to come like they did for dad?
Be Patient with Repetition and Confusion
Repeat the information calmly if needed.
Redirect gently or repeat the question in a different way.
Document Their Choices Promptly
If they clearly express a wish, write it down immediately in the Five Wishes document. If possible, include a trusted person to serve as a witness.
If a trusted person is not available, consider recording conversations, with consent, for reference or doing a video call.
For example: “Mom, I want to make sure I do not forget anything you say, so I am going to put my phone on record. Is that okay?”
Revisit Later if Needed
Have multiple conversations as needed
If they become tired or upset, stop and resume another day
And remember, your NAN Navigator is here to support you and is available to guide you through the process.
