I鈥檓 25. Most people my age don鈥檛 think about death, let alone how they would like to die. Except for the occasional bag of M&Ms I consume, I鈥檓 mostly healthy.
But three years ago, my grandmother passed away, and through watching her death 鈥� it was a difficult one 鈥� I started questioning things. There had to be a more comfortable, peaceful way to die. That鈥檚 why when I learned there鈥檚 a process for planning and documenting your preferences for how you die, I wanted to try it for myself.
Most people want to live and die on their own terms. But having the death one wants requires having a conversation about wishes and putting them in writing: how much medical intervention you want, whom you want visiting you, where you want to be cared for.
It鈥檚 called advance care planning. A lot of Americans are putting it off till they鈥檙e older ... or not doing it at all. About two-thirds of adults in the U.S don鈥檛 have an advance care plan, according to a , even though and will pay doctors to have these conversations and fill out advanced directives documenting end-of-life wishes with patients.
In 2015, had an advance directive.
I learned that you don鈥檛 need a doctor to help you write an advance care plan. I met up with Karen Walker, a trained advance care planning facilitator in a coffee shop in Evansville, Indiana, one rainy Friday afternoon. Over coffee, Walker talked me through my own wishes.
鈥淓ven though I鈥檓 younger, I want to have some sort of direction in my life in case something were to happen,鈥� I told her.
Walker reassured me. She knows what it鈥檚 like to be close to someone without a plan. Her late husband, Gene Culiver, didn鈥檛 have one either.
It just never came up, and then it was too late.
After having a heart attack, Gene was seriously ill for several years. In his final days, his lungs filled with fluid and his kidneys failed. He became unable to communicate.
Then, the decisions came: Walker and her husband鈥檚 family had to decide if he would be put on dialysis for the rest of his life, uncertain of how much longer he would live even with the treatment. They decided against the dialysis; he died in September 2013 at age 77.
鈥淲e had lots of conversations sitting in our living room after we retired and moved to New Harmony. And we talked about a lot of things, but one of the things we did not talk about was advance care planning,鈥� Walker said.
And now that her husband鈥檚 gone, she鈥檚 still wonders sometimes if she chose correctly for him.
鈥淚t was a relatively easy decision at the time, but it left me with a lot of guilt because we鈥檇 never had the conversation and I never knew for sure if I had done the right thing,鈥漌alker said
After that, Walker, 74, who is retired, created her own advance care plan and now volunteers to help others do the same.
Walker is part of a growing effort in the medical community to encourage people of all ages to have end-of-life planning conversations. She was trained in end-of-life planning with a grassroots movement called New Harmony Conversations. This group works to increase end-of-life conversations in the local community in New Harmony, Indiana.
One way to possibly change the culture is to get people to engage in these conversations when they鈥檙e young, said Indiana University School of Nursing Professor Dr. Susan Hickman.
Hickman also serves as a faculty member for , curriculum and certification program that trains facilitators to have end-of-life conversations and fill out advance directives or for those with terminal illness in Indiana, called Physician Order of Scope of Treatment (POST) forms.
Hickman said if people start having these conversations when they鈥檙e young, they鈥檙e more likely to update them when they鈥檙e older, and it鈥檚 more likely to matter.
鈥淩eally part of shifting the culture is to start normalizing those conversations; to have discussions about goals and values and preferences be a normal thing that happens in a variety of settings,鈥� Hickman said.
That way, she said, you鈥檒l be better prepared for a crisis.
鈥淎nd [it] becomes easier for people when they are faced with really difficult decisions to act,鈥� she said. 鈥淚t鈥檚 not the first time anyone's ever asked them what they want.鈥�
At the coffee shop, Walker posed a hypothetical: I鈥檓 in a car accident. How should the doctors treat me?
鈥淭he doctors believe there is little chance you will recover the ability to know who you are or who you are with. Would you want to continue medical treatment to keep you alive, or would you want to stop medical treatment?鈥� she asked.
And I realized, yeah, I do want treatment. In case of crisis, I want my family to fight for me.
As I found out, advance care directives are more than just a 鈥渄o not resuscitate鈥� form.
鈥淲hat cultural, religious, spiritual or personal beliefs, if any, do you have that might help you chose the care you want or do not want?鈥� Walker asked.
But many people don鈥檛 want to think about their death. Even if they do, having an advance care plan might mean they don鈥檛 get any care at all near the end of their life. That鈥檚 not true 鈥� advance care directives can specify that a patient wants to do everything possible to save their life.
Once I finished my conversation, Walker handed me the notes she had taken. I knew what the next step was: Call my dad.
I explained to him what I had decided:What I consider to be a good day, who I want my health care agent to be to make medical decisions for me if I am unable to, and things I would like and not like to have in the room along with treatments.
As I finished, I had just one more question for him.
鈥淚 have to ask, do you have an advance care plan?鈥�
鈥淣o,鈥� he said.
鈥淗ave you thought about getting one?鈥� I asked.
鈥淣ot until you mentioned it, but I guess it would be a good idea.鈥�
So I got some clarity about my vision for the end of life, and maybe my dad might soon, too. Not because he鈥檒l pursue it on his own 鈥� it鈥檚 not something he would bring up with his doctor naturally. But now that I鈥檝e created an advance care directive, I plan to pester my whole family about their own at the Thanksgiving dinner table.
These conversations didn鈥檛 always come naturally, but now it鈥檚 something you can count on us discussing around the dinner table this holiday season.
This story was produced by Side Effects Public Media, a news collaborative covering public health.
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