No One Likes Talking About Death, But Here Are 5 Reasons You Should Do It Anyway
When most people talk about death, what often comes up is an awkward conversation about how we'd want our family to "pull the plug" if we ever became a "vegetable," and that’s the end of it. But what if you got in a serious, paralyzing accident on the way home from work today? Who would make your health care decisions for you? And would that person feel confident that he was making the decisions you would have made?
That’s the goal of advance care planning, a process of communicating and documenting your wishes for end-of-life care. Medicare recently announced it will cover appointments specifically to help patients make these kinds of plans. It’s hard enough to wrangle face time with a doctor, but Medicare patients previously had the opportunity for such counseling only at their initial physical exams. As of January 1, 2019, some 55 million patients will have greater access to physicians who can help guide these conversations.
And it's not just the elderly or sick who should be having these tough conversations. "Technically, anyone 18 and older should be thinking about this," says Bud Hammes, PhD, a clinical ethicist at Gundersen Health System in La Crosse, WI, who directs the system's Respecting Choices advance care planning program. Not quite sure you can stomach talking about death when you're in good health? Here are 5 reasons to open up and start the conversation:
1. Filling out an advance directive isn't enough.
An advance directive, a legal document in which you name a health care agent to make decisions for you and carry out your wishes for end-of life care, is just part of the equation. Hammes works with families struggling to make decisions on behalf of a loved one. Before his hospital started focusing on advance care planning, he would sometimes work with families that had no idea their loved one had filled out an advance directive. And because the family wasn't involved in the planning process, they would often try to override the document, not believing it actually reflected their family member's wishes.
While advance directives are important (and are easy to complete with online tools such as MyDirectives), they should be the final step in a process that requires deep reflection and ongoing, open conversations with family and loved ones, Hammes says.
"The process of planning itself is the most important," he says. "The decision-making and the reflection that goes on in considering these things—in asking yourself, 'At what point would a change in health status be so bad that I would want the goals of health care to change?'are telling."
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2. Sometimes the obvious person is the wrong person.
A few years ago, Hammes was walking a couple in their 30s through the advance care planning process. When it came time to choose a health care agent to carry out their wishes, it was a no-brainer: They would pick each other. But when Hammes started asking the husband probing questions about what he would want done if he suffered a severe brain injury and would never recover, he was very clear about not wanting any treatment to keep him alive in that state, including use of a feeding tube. The wife, who felt removing a feeding tube would be against her religious values, said she wouldn't feel comfortable making that decision on his behalf. In this case, naming a close friend who the husband felt could handle making that decision was a better choice for everyone involved.
The moral of this story is that sometimes the obvious choice isn't the right choice, says Hammes. Before naming someone to make decisions on your behalf, it’s important to ask: Is the person willing to have this responsibility; is he willing to have a conversation with you about what's important to you; do you trust him to carry out your wishes and make difficult decisions in very stressful situations; and is he willing to carry out your decisions even if he many not fully agree with them or completely share your values?
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3. This isn't just about how you die.
What matters most at the end of life may not have anything to do with health care, says end-of-life researcher Joanne Lynn, MD, author ofHandbook for Mortals. "People could tell their decision-maker that they very much want to keep their business intact, or they want to keep the ranch intact, or they want to preserve assets for their disabled son. People have priorities that are not merely medical," she says. These goals and values can be included in an advance directive.
One of the main reasons people avoid talking about end-of-life care is the vulnerability it requires, says Hammes. "We're asking people to tell other family members some of the most important values and goals that they have," he says. "I think these conversations are much more intimate and make people much more vulnerable than we sometimes realize. But as the couple who disagreed over a feeding tube illustrates, having the conversation can ensure your values are known and respected should the unthinkable happen."
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4. You can make things much, much easier on your family.
At the end of the day, advance care planning is as much about your family as it is about you. Being very clear and leaving no gray area about your wishes and your values can help better guide your family through a difficult time, explains Hammes. For example, instead of saying you wouldn't want to be kept alive if you become a vegetable, which expresses a value but has no standard universal medical meaning, actually describe what this state means to you, such as not being able to take care of yourself, being bed-bound, or not knowing who you are or who other people are.
"You need to identify what loss of what capacity would make you say, 'If I lost these abilities, the goal of my medical treatment would be simply to keep me comfortable,' " Hammes says.
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5. There are people who are trained in how to do this.
Aside from feeling vulnerable, Hammes says the other main reason people may avoid talking about death is they simply don’t know what to talk about. Through Respecting Decisions, Hammes and his team have trained "facilitators" to walk people through the advance care planning process, similar to how a financial advisor would walk someone through planning for retirement.
"Most of us realize that the options that might be considered are complicated, and even those of us who have a high level of education won't just look at a brochure or read a magazine and feel like we did enough to prepare for our financial future," says Hammes. "We think the same kind of truth is here, too."
While there isn't yet a tool for locating Respecting Decisions facilitators near you, Hammes has trained people in every state, and many hospital systems have people on staff who are knowledgeable about advance care planning.
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