Gwendolyn Phillips Coates kept checking the clock as she waited for her husband, Leander, to arrive for their lunch date. Since he was rarely late, she had a feeling in the pit of her belly that something was wrong. Her intuition proved correct: He had suffered a brain hemorrhage at home.
Over the course of the next week, Leander was placed on life support and Coates, then 49, had to decide whether life-sustaining measures would continue. After much thought, plenty of prayer and too many tears, she believed in her heart that he would not want to be in a vegetative state and made the painful decision to allow life support to be withdrawn.
But she would never be totally certain she did what he wanted because they had never discussed it.
That was in 2001, and that experience not only changed Coates’ life, it changed the Los Angeles-based pastor's ministry. As she discussed Christian living, Coates, now 68, says,“I began to talk to people about being prepared for the end of life.”
Part of being prepared is having an advance directive, a legal document that provides instructions on your health care should you be unable to speak on your own behalf. The types of decisions you would make include whether you would want to be resuscitated if your heart stopped beating, whether you would want to be put on a ventilator if your lungs stopped working and whether you would want a feeding tube inserted if you were unable to eat.
There are no right or wrong answers. The choices you make at age 40 may change when you are 70. And since we never know when we will need an advance directive, the earlier we have one the better.
“I began to talk to parishioners about being prepared for the end of life.”
Two basic components go into an advance directive: a living will and a durable power of attorney for health care. The living will spells out what you want done if you are incapacitated, and the durable power of attorney names a health care proxy, an individual who acts on your behalf.
“You’re basically saying what type of medical care would be acceptable to you if something serious were to go wrong, as well as naming the person who you put in charge of making those decisions on your behalf,” says Patricia Battles, a social worker and partner relations coordinator for Five Wishes, a Tallahassee, Florida-based organization that walks consumers through advance care planning and offers a template for advance directives.
States have different requirements for making an advance directive official. Some mandate that you have a witness when you sign one, while others require a signature from a notary. You can download free advance directive forms by state from aarp.org, plus get more info and instructions for filling out the forms.
Once you complete your advance directive, provide a copy to your designated proxy and your doctor, who will make it part of your medical record. Also, let other trusted family members or loved ones know where it is.
Studies show that we as Black Americans are less likely to have an advance directive than white Americans. Some of us may not know we need one because our doctor never brought it up, Battles says. For others, there is a mistrust of the medical system or a fear that talking about death can somehow speak it into existence, experts say.
Coates speaks with people regularly about the topic through her work as founder of God Answers Prayer International Fellowship of Churches. Many don’t want to make their loved ones uncomfortable by bringing up the topic, she says. But a little discomfort today can prevent tense situations tomorrow. “I’ve seen people fighting in waiting rooms, one person saying, ‘You know what mom wanted’ and the other saying, ‘They never said anything to me about it.’”
Not only should we make sure we have an advance directive, but we need to make sure our husbands, our parents, our aunties and our adult children do too. So how do we start such an awkward conversation?
The best time to do it is when everyone is healthy, says Battles.
I’ve seen people fighting in waiting rooms, one person saying, ‘You know what Mom wanted’ and the other saying, ‘They never said anything to me about it.'
I can vouch for that. After my dad was diagnosed with cancer, the time came for my family to discuss what type of care he wanted if his health continued to deteriorate, and it was one of the most nerve-racking conversations I’ve ever had in my life. Yet years later when my mom, who was healthy at the time, broached her advance directive with my sister and me, we nodded that it sounded great to us and went back to the conversation at hand.
Coates suggests tying advance care planning to a family event. For example, set aside time at a family reunion to memorialize the ancestors and then pass out advance directive forms that can be filled out at a later time.
Emphasizing how advance directives can prevent family squabbles may also encourage loved ones to create one. “Sometimes people don't want to do things for themselves, but they'll do it for their kids,” says Battles.
Your loved ones might not be ready to have this conversation when you first bring it up. If so, drop it — for now. “Maybe the right time is a year from now,” Battles says.
Also look for opportunities when people may be more open to the subject. For example, the COVID-19 crisis has given all of us a reality check about life’s fragility. This might be a good time for us to talk about what we would want if the unexpected happened.
"This document is a way to take control because it speaks for you when you can’t," Battles says.