Tiffany Johnson is a death doula.
But the Oak Park resident insists that her work as an end-of-life educator isn’t as dire as the title might seem.
In fact, it can be both enlightening and beautiful.
Perhaps as much as the better-known birth doula.
“I am focused on the end-of-life experience,” said Johnson, who owns We Too Shall Pass, an LLC focused on advocacy for a dying person and their family. “I’m here to walk alongside of you in your journey so you’re not alone and your voice is heard.”
Johnson’s childhood prepared her for this work. Her father was slowly dying during her teen years, so she saw firsthand how hopes, needs and wishes intertwined.
As for her work, make no mistake.
“It can be hard, sure, but there is also a beauty in accepting what is inevitable,” she said. “I can speak to personal experience, and I love creating comfort for people.”
She added: “There is fear and anxiety associated with this time. Often people seek my support because they don’t want it to happen.”
That includes everything from a dying person’s bodily disposition, how they are remembered, even writing their own obituary. Part of her advocacy is working with hospice teams and funeral directors. She works in a dying person’s home, in nursing homes and assisted-living facilities.
Johnson had been a massage therapist since the mid-1990s, and studied art therapy prior to that, before becoming a death doula in 2017. In her role, she does a lot of pain management, but that’s just one facet of her work. An important part is learning about her clients’ faith journeys, and how that impacts the death experience.
Johnson said since the role of a death doula is relatively new, often people don’t realize her support exists. That’s why events she does called Death Over Dinners are crucial to helping people come to grips with the inevitable. They are potluck affairs, and participants from their 80s all the way to their 20s discuss the specific topics related to end of life, for example making advance directives.
There’s more. Johnson is a member of the Illinois End-of-Life Options Coalition, which is advocating for two bills in the Illinois legislature – one in the House and another in the Senate – that would legalize end-of-life aid in dying, which is legal in 10 states plus the District of Columbia. The coalition comprises ACLU of Illinois, Final Options Illinois and Compassion & Choices Action Network, a national organization that protects, educates and expands on end-of-life options.
The safeguards in such a scenario are many, she said. For example, a patient must be deemed terminally ill by two independent doctors, with a prognosis of six months or less. The patient must be mentally capable and able to self-administer the blend of medications that causes the patient to fall asleep with subsequent heart stoppage.
Since the bills were introduced into both chambers earlier this month, said Chloe King, senior campaign organizer for Compassion & Choices Action Network, the hope is to have the bill on Gov. Pritzker’s desk this spring.
Not surprisingly, views on end-of-life aid in dying can be both diverse and polarizing (see sidebar), but King and Johnson are both about open discussion around the topic.
“We’re not trying to convince anybody to do something they don’t want to do,” King said. “We connect with communities that have questions, so they have the facts, so they know what they are opposing.”
Added Johnson: “I welcome those conversations, personally. If there was a peaceful conversation about it, those objections would dissipate.”
Theological Views on Medical Aid in Dying
Medical aid in dying isn’t legal in Illinois, but the End-of-Life Options Act, or Senate Bill 9 and House Bill 1328, aims to change that.
“I would love if there would be hearings and it passed in the spring session,” said Chloe King, senior campaign organizer Compassion & Choices Action Network.
Not so fast, say leaders of Oak Park area faith communities.
“It’s kind of a slippery slope,” said the Rev. Carl Morello, pastor of two Catholic parishes, including St. Catherine of Siena-St. Lucy and St. Giles. “The church’s position has been to honor life from birth until natural death. But when people are in a terminal situation, we do support them in making the choice for hospice care.”
Rev. David Heim, interim pastor for Good Shepherd Lutheran Church, agrees with Morello that precedent in this case is worth examining theologically.
“If assisted dying begins to change that culture, people who are in a terminal situation, ‘I guess society expects me to take my life,’ that’s the slippery slope,” Heim said. “Christians continue to hold the idea that suffering isn’t pointless.”
Rabbi Adir Glick, Solomon Family Rabbinic Chair at Temple Har Zion in River Forest, said Judaism does not permit taking a life, either one’s own or someone else’s. But there may be a slight caveat.
“My goal is to support families with whatever they are going through with Jewish ethics, but I also understand we live in a different time,” he said. What if he had to counsel a terminally ill person contemplating aid in dying?
“I would leave it open-ended,” he said. “I would bring the Jewish value or ethic as a matter to consider, but I understand it is a very personal decision and a person must make the decision based on the wide scope of their situation.”
Rev. Emily Gage of Unity Temple adopts a similar view and points to a 1988 Unitarian Universalist Congregation statement affirming one’s right to die with dignity.
“I can’t speak for everybody in our congregation, but I believe the locus of decision-making should be within each person,” she said. “For me, it includes making decisions on how you would die, given the parameters of their terminal illness.”