Don't Leave It To Your Family To Decide

Often times in my work as a hospice social worker, and now when playing The Death Deck, I spend a lot of time talking to people about their end of life wishes. In doing so, I regularly encounter the mindset, “Let my family decide, I don’t care.” At first glance, and to many people, this seems like a nice gesture. The assumption is that the individual is so easy going that they are willing to let others decide how to handle their end of life experience and what is done with their body.

Unfortunately, this type of thinking often leads to their family members being in stressful and complicated situations.

Imagine a scenario in which you ask your Mom where she wants to have her birthday dinner and she responds, “I don’t care, you decide.”

This doesn’t feel very helpful. While it might seem helpful to Mom that she is allowing her daughter to decide on the birthday dinner, her daughter is likely now put in a position of guessing where Mom would want to go for dinner. Now it’s become a complicated guessing game.

Next, imagine that Mom has four adult children. The children and their spouses together are trying to decide where Mom wants to go for dinner. Mom continues to say, “I don’t care.”

The adult children are now discussing in a group text which restaurant to choose.

“Mom loves that restaurant overlooking the water.”

“No, last time we went the waiter was rude and she said she doesn’t want to go back.”

“What? When did she say that? She didn’t tell me that.”

“I say we go to that Italian place instead.”

“You just want us to all go to that Italian place because they have free corkage and you’re cheap.”

“This isn’t about you, Bob, this is about Mom.”

“Well, Mom isn’t answering us, so we have to make a decision about this. I know her best, so I think I know where Mom wants to go.”

Making a decision on where to take Mom for her birthday dinner is complicated enough and can easily dissolve into an argument when it’s a large family with a lot of opinions. Imagine what the arguments might sound like when discussing Mom’s care.

“Mom hates nursing homes, she would want to be at home.”

“But, after her stroke, that seems like the best place for her."

Or after she dies, the conversations may sounds like this:

“Well, we know she wants to be buried because Dad is there.”

“Yeah, but Mom told me that she hates the thought of being in a coffin. She wants to be cremated, then buried next to dad.”

“We have to have an open casket so we can say Goodbye.”

“Are you kidding me? Mom hated open caskets. She thinks they’re morbid.”

Not all families argue about these situations, however all families struggle with what to do at these difficult moments when there is not a clear path laid out for them. During times of medical crisis or after a loved one dies, energy that would be spent being present for each other instead goes to making difficult and complex guesses about what the loved one would have wanted.

It is the best gift you can give to your loved ones to put your wishes in writing.

We recommend that every adult has at minimum:

• A Living Will
• A very specific Advance Directive that not only designates your surrogate decision maker but also speaks about your preferences and quality of life parameters.  A great example of one is found here (available for all states): https://prepareforyourcare.org/welcome
• Ongoing conversations with your family. Whenever possible, talk to each family member about your wishes. Playing The Death Deck is a great way to open up the topic in a conversational and accessible way.
• Update these documents as circumstances change.

It’s often when we avoid the topic of end of life that we think we don’t care. If you go through the process of completing these documents and having these conversations, you will find that you do indeed have ideas of what you want and don’t want. In the end, we all care what happens to us.