“More than 90% of the people think it’s important to talk about their loved ones’ and their own wishes for end-of-life care.
Less than 30% of people have discussed what they or their family wants when it comes to end-of-life care.”
(Source: National Survey by The Conversation Project 2013)
One conversation can make all the difference.
Silver Lining Discussions
Phyllis T* and her family had never talked about end-of-life care wishes until at age 64, she was diagnosed with early stage Alzheimer’s. The conversation was very hard for everybody because none of them wanted to face the reality, but they all knew that waiting to make certain decisions would surely mean that Phyllis would not be able to participate in the conversation, something that would have made the whole situation far worse.
In preparation for their discussion, they each downloaded a free Starter Kit from The Conversation Project— a non-profit organization founded by award-winning columnist Ellen Goodman to help people talk about end-of-life wishes before it’s too late.
Phyllis and her family found the “Where I Stand Scales” helpful in understanding how she wanted to be treated as a patient, how long she wanted to receive medical care, and how involved she wanted her husband and daughter to be in that care when she could no longer act in her own best interests.
It took a crisis before Phyllis and her family started talking about end-of-life care. However, this kit can be useful for everyone. Thinking about end-of- life care issues can take a while, and talking about them can take practice, so it’s easier for everyone to do so before there’s a pressing reason to have the discussion.
FidSafe Tip®: Consider downloading The Conversation Project Starter Kit and using it as an aid to know where you or loved ones stand on a range of care issues. You can then store and share the kit with others via FidSafe®.
Once a person has decided what type of care they want at the end of life and communicated those wishes with loved ones, The Conversation Project’s Starter Kit suggests preparing the following documents:
Advance Care Planning (ACP): the process of thinking about your wishes.
Advance Directive (AD): a document that describes your wishes.
Health Care Proxy (HCP): person you trust to act on your behalf if you are unable to make health care decisions or communicate your wishes. In some states, this is called the Durable Power of Attorney for Health Care.
Living Will: specifies which medical treatments you want or don’t want at the end of your life, or if you are no longer able to make decisions on your own (e.g. with Alzheimer’s).
Having these documents is only half the battle. Making them available to caregivers when they need them is equally important. So, in Phyllis’s case, once they had created these documents, her husband uploaded the documents to FidSafe and shared them with their daughter and son-in-law.
- Consider giving your filled-out Starter Kit to your attorney to draft these documents. You can share it with him or her via FidSafe.
- Ask your attorney to give you digital copies of each prepared document to save you from having to scan them. Then upload a copy of those to FidSafe.
- Tell loved ones that you have created these documents and then share them via FidSafe.
Sharing such documents can serve as a way to further your family discussion and make sure that caregivers can find them when they need them.
Look for articles on other aspects of end-of-life planning in the coming months. Please tell us whether you found this article useful.
*Phyllis’s story illustrates how someone in her situation may use the Conversation Starter Kit to spur a conversation and further planning. However, she and her family are a fictional account of the author’s research. Any resemblance to people living or dead is merely coincidental.