It’s time to talk about advance directives

August 13, 2020

Pamela was no stranger to planning for the end of life. She had already paid for her burial plot and funeral service. She had even started working on a will. Then in June 2018, she got the news that would change her life, she was diagnosed with COPD and severe emphysema.

“That’s when I realized I needed to do something because I had so much to do and very little time,” said Pamela, 62, who asked that we not use her last name. “Even now, I don’t fear death, but at the same time I like having answers to the questions I may have.”

Some of those questions may be: do I want my life prolonged, do I want to be put on a ventilator, do I want to be resuscitated.

By completing an advance directive, Pamela was able to provide the answers that would ensure she lived out her life on her terms. It is part of what is called advanced care planning, or end of life planning, and it is one aspect of aging that many people choose to avoid.

As a member of Community Care’s Program of All-Inclusive Care for the Elderly (PACE), Pamela received guidance on completing the necessary forms to guarantee that her wishes are granted when the time comes. While there are a few types of advance directive, the most important is the power of attorney for health care.

This is a legal document that allows a person to choose someone to carry out their wishes should they become unable to do so themselves. Many families assume they can make decisions for a family member. However, Wisconsin does not allow this. The only way to authorize someone to make decisions on your behalf is to have a power of attorney for health care.

While advance directives have been around for about 30 years, it is still something many people would rather not talk about, especially African Americans and Latinos.

While this was not the case for Pamela, who is African American, studies show that African Americans are less likely than other ethnic groups to complete advance directives. The reasons can include cultural and religious objections, distrust of the health care industry, or low health care literacy.

Community Care, a local non-profit and expert in long term care, is dedicated to helping its members overcome these obstacles. For more than 40 years, they’ve helped their members – vulnerable elders and adults with disabilities – live independently within the community. As a charter member of Honoring Choices Wisconsin, an initiative of the Wisconsin Medical Society, Community Care works to make advance care planning a routine part of the aging process. Community Care employees are trained to work with members on advance care planning as soon as they enroll.

“The whole goal is to make sure our members still have their voice even if they’re no longer able to say what their wishes are,” said Christine Peterson Watts, Community Care’s Palliative Care Ethics Manager. “It’s the only way to honor a person’s wishes and have their voice throughout their life.”

For Pamela, who was born and raised in Milwaukee, having an advance directive provides peace of mind for her and her family. It lays out clearly what she wants done and what she does not want done at the end of her life. After her experience, she has a message for anyone who might be on the fence about completing an advance directive.

“You don’t know when your number is up, only God knows,” Pamela said. “Don’t wait until it’s too late.”

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