Yet few do it.
Nationally about 1 in 3 people have had such a conversation. Wright State University found in a survey five years ago that about 9% to 12% of adults in the Dayton area said they had their end-of-life wishes written down.
This can lead to family fights and feelings of guilt for family members trying to make the right decisions. Patients might not get the care they would have wanted if they could speak for themselves.
“Because the children who don’t know what their parents wishes are become traumatized,” said Kay Wyse, a medical social worker with Fidelity Home Health. “Waiting rooms in the hospitals are full of anxiety and tension and grief and fear, whereas once a family has processed this kind of conversation, the waiting rooms change immensely.”
There’s still grief, tears and loss. But it’s a very different feel, Wyse said.
Wyse promotes advanced care planning through a local initiative called Decide to Be Heard, started by Kettering Health, Premier Health and Ohio’s Hospice.
The coronavirus pandemic put this problem into sharper focus.
Thousands of Ohioans died and thousands of others at times were too sick to make their own care decisions. Some were young, got sick suddenly, and hadn’t had this kind of conversation before.
This left families around the region having to guess about how their loved one would feel about staying on a ventilator or whether they would want a minister called.
“... with COVID we have learned that young people need to be prepared,” Wyse said.
The conversation
People are advised to start with a conversation, not paperwork.
Facilitators with Decide to Be Heard help people have this conversation and ask people to think through their values and spiritual beliefs to get started.
“One of the questions that is a part of our facilitated conversation is ‘tell me what makes a good day?” said Lisa Henderson, VP of health initiatives at the Greater Dayton Area Hospital Association.
After the conversation, then fill out advanced directive documents.
This includes a document designating a health care power of attorney, which empowers whomever is named to make medical decisions if for people who can’t communicate. This also includes a living will that documents specific wishes regarding health care in areas like CPR, pain killers, feeding and hydration.
The forms can be completed by anyone over 18 who can make their own decisions. The forms need to be signed by a notary or two witnesses - a lawyer is not required - and can be found online through free sites like decidetobeheard.org or mydirectives.com by the Mayo Clinic.
“It’s important for everybody to have these conversations and then to revisit them as your health or circumstances might change,” Henderson said.
Family left guessing
From week to week at Kettering Health, Erika Sanso, the director of acute and transitional care, said she sees the same types of situations over and over again. People can’t find where directives are stored. Or they have the paperwork but aren’t sure they should follow what is written and are not sure how long that form has been sitting in a filing cabinet.
“They think that those directives might no longer apply, or they may not agree,” Sanso said.
Sometimes people skip having a conversation with family members and just complete needed paperwork. Sanso said she sees cases where a patient’s family member didn’t know they were named on paper as the health care power of attorney.
Phillip Clay of Springfield said he and his wife Ann talked about her wishes many times over years before she died in October 2020.
The topic was always an open issue between the two of them and with their children, he said. Their children are now adults and have spoken clearly about their end-of-life wishes.
“Dying is part of life so lets be open about it that way we can enjoy life better,” Clay, a retired psychologist, said.
How do you get the conversation started?
The Conversation Project, a nonprofit initiative, has free Conversation Guides online that can help you talk with the important people in your life about your – or their – wishes for care through the end of life.
They have specific guides at theconversationproject.org for different situations, like helping a person with dementia have a say in their care, or talking effectively with health care providers.
Some questions to consider include:
- What or who supports you during difficult times?
- What does a good day look like for you? What do you need to enjoy a good life — through the end of life?
- As a patient would you want to know only the basics about your condition and treatment? Or all the details?
- What are your concerns about medical treatments: that you won’t get enough care, or are you concerned you’ll get too much care?
- Who do you want (or not want) to be involved in your health care?
- Are there kinds of treatment you would want or not want (examples: resuscitation attempts, ventilation, feeding tube)?
- What do you need to address to feel more prepared (examples: finances, property, legal documents, relationships, health care situations)?
People can also get personal help in person or virtually with a facilitator in the Dayton area to talk about end-of-life wishes, through Decide to Be Heard. Go to decidetobeheard.org/seeking-a-facilitator/ or 937-424-2362.
Source: The Conversation Project
What are advanced directives?
After having an advanced planning conversation, advanced directives are legal documents that spell out choices for people in the event they become unable to make decisions for themselves. In Ohio, this can include:
• A living will, which allows people to write down their choices regarding medical care.
• A power of attorney that lets you choose a person as your Health Care Agent. This person is authorized to make health care choices for a patient if the patient themselves cannot.
How to create advanced care directives?
There are many options for creating this paperwork.
- Decidetobeheard.org has information on getting the conversation started and creating advance care directives.
- mydirectives.com; the website steps through questions and helps people create a plan.
- ohiohospitals.org, a service of the Ohio Hospital Association, provides advanced-care planning forms.
Source: Decide To Be Heard, Ohio Hospital Association
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