IOWA CITY — Syndy and Jim Conger know talking about death is difficult.
When Syndy was trained to be a facilitator for the Honoring Your Wishes program, which encourages people to think about and record their wishes for their deaths, she and her husband realized they needed to have their own discussions about that difficult topic.
“One thing we discovered — we had never sat down and talked about these questions with each other in all our years of marriage,” Jim said.
Questions in the Honoring Your Wishes program range from what songs or readings you would prefer at your funeral to whether you would like to be an organ donor to under what conditions life-prolonging procedures such as feeding tubes should be stopped.
Iowa City Hospice launched Honoring Your Wishes in 2010, based on a similar initiative in La Crosse, Wisc. Efforts there have garnered national attention — some 96 percent of people who die there have a directive or similar document. The number nationwide is closer to 25 percent, according to the American Journal of Preventive Medicine.
In Iowa City, more than 40 local organizations and businesses have become involved with Honoring Your Wishes. Program partners range from the Iowa City Senior Center to Mercy Hospital in Iowa City to employers such as ACT and churches that include New Song Episcopal, which the Congers attend.
But the program is about more than checking boxes, said Jane Dohrmann, Honoring Your Wishes director. Facilitators ask people to consider their beliefs and values, to reflect on what makes life worth living to them, to think about where they would like to die — at home or in a facility — and to decide whether they would want medical interventions such as CPR if their heart stops.
Those questions are complex, and the answers can range greatly from person to person and sometimes depend on circumstances. A healthy person may have different considerations than someone with a terminal illness, for example, and a young person may have different views than someone who has lived a long life.
Facilitators ask participants to think about these issues and record them on an Advance Care Directive form. They also are asked to name someone they trust as a health care agent to act on their behalf if they are unable to make or vocalize their own choices.
The Advance Care Directive, once notarized, is a legal document that directs health care providers on end-of-life issues. The directives can be updated at any time as the participant’s life circumstances change.
Though Hospice is leading the program, it shouldn’t be something just for people who know they are nearing the end of their lives, Dohrmann said.
Events such as car accidents or sudden illnesses can happen to anyone, after all, no matter what their age or current level of health.
“We want to create a cultural change, where these conversations are a part of life, because the reality is most of us may have a time in our lives where we cannot communicate,” she said. “But it does not come easily in our culture to have these conversations.”
Honoring Your Wishes also promotes a document called an IPOST — Iowa Physician Orders for Scope of Treatment. Unlike Advance Care Directives, which are designed for anyone to use and are wide in scope, IPOSTs are directives for the frail and elderly, or adults and children with life-limiting diseases or chronic health conditions.
They cover under what circumstances resuscitation efforts such as CPR or other interventions should be used.
IPOSTs are tracked by Johnson County Emergency Services, which can flag them for first responders to follow if a call for service is to an address with an IPOST.
“This really is a systemwide approach to ensure people get the care they want,” Dohrmann said.
IPOSTs require a physician’s signature, but anyone in the community can fill out an Advance Care Directive with the help of a trained facilitator. Free appointments with facilitators can be made at Mercy Hospital in Iowa City and the Iowa City Senior Center.
Ideally, the form would be entered on a patient’s health care chart, and copies would be given to the designated health care agent — often a relative — and others who may need to make decisions on someone’s behalf if the person is incapacitated. Conversations with the health care professional and other loved ones also are encouraged as part of the process.
Having those conversations and having your wishes on paper can lift a burden from loved ones who may otherwise agonize about whether they’re doing the right thing, said Margaret Reese, president of the Mercy Hospital Foundation.
“It’s a tremendous gift to the people who care about you,” she said.
Her own mother died earlier this year, and Reese and her siblings had to make a lot of tough decisions. So she said she made her own children sit down with her as she filled out her Advance Care Directive. It wasn’t an easy conversation.
“None of them have wanted to have these conversations with me, but they had them,” she said. “I don’t want them to suddenly wonder, oh gosh, what would Mom want? What is the right thing to do?”
She said having health care providers such as Mercy on board is important to Honoring Your Wishes’s goals. The default in a hospital setting is to continue interventions as long as possible — but that may not always be what people want for themselves, especially if, for example, they have a terminal illness or would be living in pain.
“Everybody knows how they want to live their lives, and the respect and dignity they want to have,” she said. “That needs to continue as they progress through their lives. “They need to have a say in how they live until their life ends.”