Many people in the United States avoid talking about death, but this causes problems when it comes to end-of-life care. April 16 is National Health Care Decision Day, an initiative to educate people and providers about the importance of planning how we want to spend the last days of our lives.

At the University of Utah, an organization on campus aims to shine a light on the conversations and legal documents that express your wishes and alleviate anxiety for your loved ones left to make those decisions for you.

“End-of-life discussion isn’t talking about death. It’s talking about how you want to live toward the end of life,” said Brian Zenger, co-director of the U of U Health chapter of No One Dies Alone (NODA), a national organization that provides volunteers to sit with patients who are dying in the hospital alone. “It’s always too early until it’s too late. There’s no optimal time to do this. But the best time to have these conversations is when you’re not dealing with death itself.”

No one dies alone

Three or four patients per month die alone at the university hospital, according to U of U Health. Though nurses and doctors do what they can, their schedules make it difficult to provide comfort. NODA connects trained volunteers to patients who want someone with them as they transition from life to death. The volunteers sit with patients for three-hour shifts to be present, like a family member would be.

“Lots of times the patients aren’t conscious or talking. I’ll introduce myself, say what I’m there for and try to match their breathing patterns to feel connected with the patient. Then I’m just quiet,” said Zenger, who is working toward a combined doctorate of medicine and philosophy in biomedical engineering. “You’ll go through peaceful moments and suffering anguish with these patients. I think that describes the process of death. The patients are teetering between the two.”

Since beginning the Utah chapter in 2017, NODA has helped between 30 and 40 patients through the death process. The organization does monthly volunteer trainings with social workers, ethics scholars, and hospital chaplains to talk about the nuances of understanding death. Participants get together every few months to check in with each other.

“That’s equally as powerful as sitting with patients,” said Zenger. “In this culture, we don’t think about death. It’s beautiful to see people who sit and interact with one another and find a community that they can talk about it with.”

Legalize end-of-life wishes

This month, NODA is beginning to train volunteers to inform folks about having conversations with their loved ones, including how to prepare advanced directives.

An advanced directive is a legal document that lays out instructions regarding an individual’s end-of-life care. If you’re unable to communicate, do you want to be intubated? A feeding tube? Receive CPR? Advanced directives also assign a proxy, an individual who is responsible for making your medical decisions.

“I’ve seen families struggle. They say, ‘I don’t know what they want me to do.’ There’s a lot of pain and suffering associated with that. But if you have the conversation, it makes it much easier,” said Zenger.

NODA is preparing more than advanced directives. They take folks through “The Five Wishes,” which allow the person to express the following:

• The person you want to make care decisions when you are unable.
• The kind of medical treatment you do and don’t want.
• How comfortable you want to be.
• How you want people to treat you.
• What you want your loved ones to know.

The District of Columbia and 42 states consider “The Five Wishes” a legal document. Utah is not one of them. Find Utah’s advanced directives resources here. Regardless, “The Five Wishes” help families talk about what is vital to you at the end of your life.

“For me, if I couldn’t go outside, that’s probably it. For some people, it’s eating their favorite food, or doing their favorite activity. It’s seeing someone get married, meeting a first grandchild,” said Zenger. “We want to target those goals so as the end gets closer, you have a better idea about the care that will help you achieve those goals.”

For information on making your end-of-life wishes legal, click here. Also, U of U Health lets you upload your advanced directives into your MyChart account.

“This is a discussion about how you want to live your life,” Zenger said. “It’s not a morbid topic. It’s a celebration of life.”