August 14, 2019

In a Washington Post perspective, ICU nurse Andrea Useem shares her struggle to write an advance directive—despite her intimate understanding of how important such documents are for families who must make end-of-life decisions for a loved one.

Download URMC's conversation prompts to start improving end-of-life care for patients

A daunting task

When it comes to writing end-of-life directives, "I of all people should know how to do this," Useem writes. "As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known."

For instance, she recalls the case of an adult son who had to decide whether his mother, who was unconscious, would want to live the rest of her life connected to a ventilator.

"Pray for me that she dies before I have to make a decision," the man told Useem.

If the woman had made her end-of-life decisions known to her son before she grew ill, Useem writes, her son would've at least had "the peace of mind of carrying out her wishes," according to Useem.

But despite her savvy, Unseem confesses, "The form remains incomplete." She writes, "I just can't bring myself to translate my well-informed preferences into a legal document."

Why most people struggle with advance directives

Useem is far from the only person struggling to put her end-of-life wishes into words.

In fact, a 2017 study led by researchers at the University of Pennsylvania found that only one-third of Americans have an advance directive.

So why, Useem asks, is end-of-life planning "so difficult"?

For a lot of people, especially those who do not work in health care, the biggest barrier to advance-care planning is understanding the process, Useem writes.

An advance directive usually includes two elements, Useem explains. One is naming a health care surrogate, who is "an adult who is legally empowered to make medical decisions for you when you can't make them for yourself." The other is creating a living will, which "offers you a way to say in advance what sorts of medical interventions you would want," according to Useem.

However, the problem with advance directives is that they rarely incorporate the complexity of the real-life medical decision-making that is required at the end of a patient's life, according to G. Kevin Donovan, director of Georgetown University's Pellegrino Center for Clinical Bioethics.

So how do you actually write an advance directive?

Because it's so hard to translate real-life decisions into an advance directive, experts advise that patients focus on two things: "naming the right person as your health care decision-maker but also talking in depth with that person about what's important to you," Useem writes.

When you name someone as your health care surrogate, "You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet," according to Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System.

Physician Jessica Nutik Zitter, said that for her, the real end-of-life planning "happens on Friday nights at the dinner table, when I talk with my family … what I would want at the end of my own life, even when my sons are rolling their eyes."

But despite her willingness to talk about end-of-life planning, Zitter said that, even as a health care professional "who deals with death every day, I don't want to think about my own end, it makes me very sad."

One way to push past this barrier, according to Useem, is to frame "end-of-life planning as a service to loved ones."

She explains, "I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure. ... The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son," Useem writes.

"This idea is also what finally motivated me to overcome my own hesitations," Unseem writes. So, in June, Useem finally filled out an advance directive. "I wrote I don't want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped," she said.

As for "[t]alking about my wishes over dinner with my kids? I'm not there yet," Useem writes. "Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you" (Useem, Washington Post, 8/12).

Next, get URMC's end-of-life conversation prompts

When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

Download URMC's conversation prompts to start improving end-of-life care for patients.

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