Planning for end-of-life scenarios can be an uncomfortable for families but as the largest portion of area population passes age 60, experts warn more of these tough conversations need to take place.
Only 9 to 12 percent of adults in the Dayton area have their end-of-life wishes written down, according to a Wright State University survey, compared to about 1 in three people in the U.S. who have some type of advanced care directives spelling out what kind of medical treatment they want.
Without these plans, if someone is in an accident or too sick to speak for themselves, their loved ones are left guessing and dealing with the guilt over whether they made the right call. It also allows families to avoid costly medical procedures and family fights.
About 1 in 4 people in the region are projected to be over the age of 60 by 2020. About 1 in 3 people will be older than 60 by 2030.
A Dayton-area pilot program is pushing for anyone over the age of 18 to have a conversation about what they would want if they were unable to advocate for themselves.
Doctors offices with Kettering Health Network and Premier Health are among pilot sites where patients are asked if they would like to have an advanced planning conversation. Patients can meet for free with one of the trained facilitators who will walk them through structured conversations either one-on-one or with family members. By the end of the three pilot phases, residents will be able to meet with 96 facilitators.
The conversations get personal, getting into what a person says makes their life worth living, what their spiritual beliefs are and if they know someone who died who didn’t get the kind of end-of-life care they would have wanted.
The facilitators dig into what people mean in common statements like “I wouldn’t want to be a burden.” Wouldn’t want family responsible for their day-to-day home care? Wouldn’t want a spouse landed with a big medical bill?
“So if you couldn’t speak for yourself, your health care agent has more than just the authority to make decisions,” said Sarah Hackenbracht, director of the Greater Dayton Advance Care Planning Initiative. “They have a sense of what you would want, so if they had to make certain decisions, they know what would be acceptable to you.”
Because while some people would want a hospital to do every procedure it can, many people would want doctors to stop, Hackenbracht said.
“They may not want all of those life saving measures if its going to mean that recovery has them hooked up to multiple machines and they don’t know who is around them and they’re not able to go home and they don’t know where they are, they don’t know who they are,” Hackenbracht said.
The information from these conversations are shared with the person’s health care provider team as well so everyone understands what the patient wants. The next step would be a living will or formally naming someone a person’s health care power-of-attorney.
The guided conversations with the facilitators are an important first step instead of just signing forms, said Hackenbracht.
“In many instances, there are (family members) who don’t find out that they’re the health care agent until they’re faced with a decision,” she said.
Officials with the program, sponsored by Kettering Health, Ohio’s Hospice and Premier Health, are preparing to expand to add more pilot sites in the community.
While the push for advanced care planning was started to avoid families making agonizing decisions for loved ones, there’s also billions of Medicare spending to be saved by people only getting the health care that they want.
In La Crosse, Wisc., about 96 percent of the town has an advanced directive and there’s less spent on end-of-life care in the town than anywhere else in the country.
With more than a quarter of all Medicare spent on the last six months of patients’ lives, Jeff Lycan, Ohio’s Hospice vice president of mission advocacy, said its important to think about what kind of care people want and benefit from.
“Part of what we think about is how do we identify those patients that are going to die better, and how do we utilize the resources to help them have a comfortable death better so we don’t spend a lot of time utilizing costly resources that have little benefit towards sustaining life for those individuals,” he said.
Promoting end-of-life planning has at times been a touchy subject politically.
When the Affordable Care Act was being considered by Congress, Medicare had wanted to include new billing codes for patients to talk a physician about end of life care on the government’s dime.
But the proposal to let doctors bill for these end-of-life counseling sessions got caught up in the furor over the Affordable Care Act and were labeled “death panels” amid a firestorm of controversy over the mistaken belief that the sessions would lead to government sponsored euthanasia to save cash.
But two years ago, the Centers for Medicare and Medicaid added those billing codes without much fuss.
About 575,000 end-of-life care plan sessions were billed by Medicare beneficiaries in 2016, the first year of the new billing codes, according to Kaiser Health News. That’s almost double the 300,000 sessions that were predicted for the first year.
“The ‘death panel’ piece at that time was pretty much water under the bridge,” Lycan said. “I think part of what that points to is that the barrier around having these discussions had eroded because we understand politically for our future that we need better planning.”
What is advanced care planning?
It’s the process of understanding what health care choices you might have to make, reflecting on what kind of goals or values you have like spiritual or cultural beliefs, and discussing those choices with those who need to know the plan if you can no longer speak for yourself, like a provider and a health care agent. Trained facilitators in in the Dayton area can help you have an advanced planning conversation alone or with the person you’d like to be your health care agent.
What is an advanced directive?
After starting the advanced planning conversation, advanced directives are legal documents that spell out your choices if you were unable to make decisions for yourself. In Ohio, it comes in two legal forms:
• A living will, which allows you to write down what choices you want for your future medical care.
• A power of attorney that lets you choose a person as your Health Care Agent. If you no longer can make your own health care choices, this person will make them for you according to your wishes.
When should I update these plans and forms?
It’s wise to review these forms every few years or if you experience: the death of a family member or friend, a divorce, become ill with a serious health problem, have a health issue that becomes worse, move to another state or start to spend a lot of time in another state.
Want to learn more?
To schedule an advanced planning conversation, go to Decidetobeheard.org and click on Seeking a Facilitator to pick a time or contact Sarah Hackenbracht at firstname.lastname@example.org.