Advocate Supports “Equal Fanfare” for Both Birth and Death
It Can Happen at Any Time to Anyone
“Earlier this year, I had a new patient – a man in his 40s who had just been diagnosed with diabetes,” explains Kay Wyse, MSW, a social worker with Premier Health’s Fidelity Health Care who is trained to lead advance care planning discussions. “As I do with all my patients, I met with him in his home, provided details about his illness, and then asked him about his end-of-life wishes and plans. Quite firmly, he told me to come back another time for that conversation.”
Passionate about these discussions, Wyse persisted. “We finally talked about his plans, and I put his official wishes into his medical record,” recalls Wyse, who received her training through an Ohio-based program called Decide to be Heard. “Three weeks later, my heart went cold when I learned that he was in the hospital with COVID-19.”
Fully recovered now, Wyse’s patient has become an advocate for end-of-life planning. “He realizes that life is unpredictable, and he feels very blessed,” Wyse says.
Why Are These Conversations So Important?
The COVID-19 pandemic has made many families painfully aware of the importance of having end-of-life discussions, says Richard Gregg, MD, an intensive care specialist at Kettering Health Network in Ohio. In just one example of the impact of COVID-19, the West Virginia Center for End-of-Life Care experienced three times more calls than normal in the early months of COVID-19, according to a recent study published in the Journal of Pain and Symptom Management.1
“Unfortunately, the moment of crisis is not the time for these family discussions,” says Dr. Gregg, who serves on the Leadership Council of Decide to be Heard (D2BH), an organization dedicated to educating healthcare providers and the community about advance care planning. “In my work, I see how difficult it is for families if they haven’t had an end-of-life conversation with their loved one. I have to ask them, ‘If Mom were sitting here right now, what would she say?’”
The challenge is that different members of a family may think they know the answer to this question, says Wyse, but they often disagree. “Everyone thinks they know best, but if a person’s wishes are not on paper, the final decisions can be very hard on families,” she says.
Dr. Gregg and Wyse believe D2BH is relevant and personal for families across the country.
What Is Decide to be Heard?
Ohio’s Hospice launched Decide to be Heard (D2BH) as an initiative in 2015 to start a conversation in the community about plans for care at the end of life. “This initiative leveraged a key message of the research completed by Ohio’s Hospice through focus groups and surveys,” said Craig Schrolucke, sr. director of mission engagement and communications for Ohio’s Hospice. “Not making plans is a decision or, as the tagline for the campaign suggests, indecision is a decision.”
As a hospice provider, Ohio’s Hospice saw firsthand the importance of planning for care at the end of life. Care teams would often hear families struggle with the decisions they were faced with about the care of their loved ones. “’We never talked about it’ or ’I don’t know what mom would want me to do’ were common responses from focus group members,” Schrolucke said.
At about the same time, following the 2015 University of Dayton and Miami Valley Health Care Symposium, members of the greater Dayton healthcare community gathered to build a conversation and plans to garner support for end-of-life care planning. Ohio’s Hospice lent its work to build out the brand and message of D2BH with these community partners.
D2BH now operates through a partnership involving Kettering Health Network, Premier Health, Ohio’s Hospice, and the Greater Dayton Area Hospital Association (GDAHA).2 These four entities, along with the University of Dayton and Wright State University, make up a community-based steering committee providing support and guidance for the initiative. These partnering groups based their program on Respecting Choices®, an internationally recognized system focused on “person-centered care that is guided by the best scientific evidence and is aligned with an individual’s goals and values.”3
As a scientist, Dr. Gregg was a proponent of using the Respecting Choices model because it is “evidence-based. They offer five specific promises to those who participate,” he says.
- We will initiate the conversation.
- We will provide assistance with advance care planning.
- We will make sure plans are clear.
- We will maintain and retrieve plans.
- We will appropriately follow plans.4
He believes the consistency of the approach and the commitment to clarity help to ensure that these promises are fulfilled.
Through D2BH, the community has access to both online resources for having end-of-life conversations and the opportunity to schedule a conversation with a trained facilitator. In addition, the site offers resources for those interested in facilitator training.
What Is Advance Care Planning?
The National Institute on Aging, part of the National Institutes of Health, describes advance care planning as “learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know — both your family and your healthcare providers — about your preferences.”5
These preferences are put into an advance directive, a legal document that is only used if someone is unable speak for themselves because of illness or injury.
Advance care plans and advance directives outline individual choices about CPR (cardiopulmonary resuscitation), the use of a ventilator, artificial nutrition (tube feeding), and comfort care to support quality of life.
“This is a very important point,” Wyse says. “Some people are afraid they are giving away their power with an advance directive. But this document is actually worthless unless you cannot speak for yourself. It’s only for those times when you are incapacitated.”
Who Should Plan for End of Life, and How Do These Conversations Begin?
According to a recent study published in Health Affairs, only one-third of Americans have completed an advance care directive to outline their wishes,6 even though most adults say they would prefer to die at home.7 Even among those who participated in the study who were severely or terminally ill, fewer than 50 percent had created an advance directive.8
“In my opinion, the best place for these conversations to begin is in a primary care physician’s office,” says Paula Thompson, president and CEO of Fidelity Health Care. “Ideally, doctors would approach the subject during an annual physical with a patient – at any age – or when a patient is diagnosed with an illness. They would then refer their patient to an expert who is trained to guide these conversations with families.”
Thompson explains that COVID-19 also gives doctors a new and timely opportunity to suggest advance care planning. “COVID-19 has made it very clear that early conversations and decisions are needed so that patients and families are not having these difficult conversations in a crisis and healthcare providers aren’t caught in the middle of unclear patient wishes,” she says.
Wyse uses cues from her interviews with patients and even photos, art or memorabilia in their homes to approach patients where they are. “If they have a chronic disease, I ask them what they know about it,” Wyse says. “I help them make a list of questions for their doctor.”
If her patients have a good understanding of this, she moves on to discussions about their experience with death, perhaps through the loss of a friend or loved one. “But I don’t just talk with people who have a chronic disease or those who are older,” she says. “My kids have advance directives! This is important for everyone.”
Wyse also advises patients that advance care planning is just as much for your family as it is for you. “It is a gift you can give to your family – relieving their stress at a very difficult time,” she says. “And it should be done early. Don’t wait until you are ill or getting older. Now is the time.”
“Equal Fanfare” for End of Life
When Wyse went to her training session as a facilitator, she admits to being skeptical. “I have been a social worker for 40 years. I thought I knew how to have these conversations,” she recalls. “But I realized that I had a lot to learn. Now, I’ve had more than 200 conversations with patients and their families. I do about one per day. I believe these conversations are vital. I like knowing that I’m doing something really worthwhile.
“Think about all we do for babies even before they are born,” she continues. “We have gender reveal parties, we paint the nursery, we develop birthing plans and engage doulas. At the other end of life, though, we are silent. I believe we should give the end of our lives equal fanfare. Everyone deserves a dignified death.”
Visit DecideToBeHeard.org or contact Lisa Henderson at firstname.lastname@example.org or 937.424.2362 if you would like to:
- Schedule a conversation with a trained facilitator for you and your family.
- Learn more about becoming a volunteer facilitator yourself.
Resources for Starting Your Conversation
Decide to Be Heard
CEO BrandWeavers for Health
Donna L. Arbogast
President and Principle
Donna Arbogast & Associates LLC
Kay Wyse, MSW
Premier Health, Fidelity Health Care
Richard Gregg, MD
Intensive Care Specialist
Kettering Health Network
Senior Director of Mission Engagement and Communications
President and CEO
Fidelity Health Care
Vice President, Health Initiatives
Greater Dayton Area Hospital Association