Some people may feel overwhelmed or confused when approaching the topic of advance care planning, but the subject doesn’t have to be intimidating. Plenty of resources are available to help individuals create a plan and talk to their loved ones about their care-related wishes.
Two innovative tools seek to provide assistance to caregivers and family members during this often emotional and challenging time.
As Mother Teresa’s legal counsel, Five Wishes founder Jim Towey volunteered and spent a lot of time at the bedsides of men dying from AIDS. During this time, he realized that while it’s important for people to create plans about who will make their medical decisions if they’re unable, it’s also important to address topics such as comfort, spirituality and forgiveness. This led him to create Five Wishes 25 years ago, and in the years since, the organization has distributed more than 41 million copies of his advance care planning platform.
The Five Wishes document can be used as a legally binding advance directive focusing on five main topics:
- The person I want to make care decisions for me
- The kind of medical treatment I want or don’t want
- How comfortable I want to be
- How I want people to treat me
- What I want my loved ones to know
Five Wishes President Joanne Eason said most other advance directive documents include their first two “wishes” of designating a health care agent and what medical treatments an individual wants or does not want. But the Five Wishes document goes beyond those items and allows people to provide instructions on comfort, including how much pain management they want.
In addition, the “how I want people to treat me” section allows individuals to leave their wishes regarding spiritual readings, music, who’s allowed to visit, etc. The last “wish” allows people to list how they want to be remembered, including what adjectives people should remember them by as well as funeral, burial or cremation instructions.
The Conversation Project
An initiative of the Institute for Healthcare Improvement, The Conversation Project offers online conversation guides and an audio-visual guide focused on medical care, not finances, inheritance or funeral planning.
Pamphlets are available that cover everything from choosing (and being) a health care proxy and talking to a health care team to caring for loved ones with Alzheimer’s and dementia and being prepared in the time of COVID-19.
The guides frame the conversations positively by asking someone to explain their idea of a good day and the type of care they’d want if they could no longer experience one. These guides are not legally binding but help families have the important conversations necessary in order to ensure an individual’s last wishes are met.
Topics to include in advanced care planning discussions
An individual’s wishes for medical care is always top of the list for these types of discussions, including who should make decisions on their behalf if they’re unable. It’s also important to discuss how an older adult wants to be medically treated—including at what point they want treatment to stop, if they want to be resuscitated if their heart stops, and if they wish to be put on a ventilator.
Caregivers should also make sure they know their loved one’s personal information such as birthdays, marriage dates and a list of assets, and have access to insurance information and account passwords.
How to start advance care planning
Advance care planning often begins with an advance directive. Ensure your loved one’s medical wishes are up-to-date and that the document is located somewhere easily accessible in case it’s needed. The advance directive should not be kept in a safe, Eason said, but should instead be given to doctors and an individual’s health care agent, as well as kept somewhere in the individual’s home where loved ones can access it.
For those looking to broach the topic of advance care planning with loved ones, Eason recommends using pop culture to start that conversation. She recommended that saying something like “I saw a movie last night, and it made me think about if I were in the hospital, would you know what I want?” can be a less intimidating way to start the conversation.
Another way to approach the topic is through a game. Patient advocate Althea Halchuck lists a number of games people can try to convey advance care planning information in a painless way. These games include the Hello Game that poses questions like, “Who haven’t you talked with in more than six months that you would want to talk with before you died?” Another game suggestion is Go Wish, which provides 36 cards that players sort into stacks by level of importance, ranking the top 10 to determine what wishes are most important to the individual.
“It always seems too soon to have these conversations until it’s too late,” said Kate DeBartolo, senior director of The Conversation Project. “Encourage people to have them early and often at the kitchen table and not in the ICU. It could be on a walk, on a car trip, sometime when you have a chance to talk about it beforehand. A crisis is a hard time to learn. That’s what we’re trying to avoid.”
Eason also said if someone isn’t comfortable thinking about medical care yet, they could start by discussing topics such as comfort and how people should treat them—working up to the medical care conversation later. The Five Wishes website also includes a number of resources – including book and podcast recommendations – for those approaching the process.
“I understand that this can be a difficult conversation,” Eason said. “Every difficult conversation is intimidating, and it’s important to just really think about if something happened to you, who’s going to have your voice? That’s the most important thing.”