Steve Connelly has mountain climbed, biked, rafted, surfed, skied and taken on any pulse-quickening challenge he could find, earning about 27 fractures for his efforts.
At 58, he is facing the first challenge that scares him – death.
Almost two years ago, he was diagnosed with type 4 pancreatic cancer. His wife looked for support and found someone who could help guide them: death doula Amy May. After having sessions with May every other week for the past year, the two can’t imagine this time without her.
There are death doulas and others who steward people through their final life stage all over the world, but Oregon has a particularly radical relationship with death.
In 1997, the state became the first to legalize physician-assisted death for people with terminal illnesses. It is now opening up the aid-in-dying option to out-of-state residents.
In 2020, Oregon became the first in the nation to legalize the use of psilocybin, or magic mushrooms, in supervised facilities. Fear of death is one of the mental health issues studies have shown psilocybin can treat.
Death doulas and volunteers with nonprofit organization End of Life Choices Oregon are working to shift people’s understanding of death: It’s not only an eventuality, it’s as fundamental a life event as birth. And like anniversaries, birthdays and holidays, many people will have some time to prepare.
May wants communities to engage with death not only as a medical event, but as a life event that can be meaningful, peaceful and even beautiful.
Connelly, a former middle school teacher known for his energy and spirited lectures, is still quick to laugh – loudly, with his whole body, folding over – and also quick to cry. His tears seem to sit behind his eyes, always at the ready.
“Sometimes I have to hide from the pain. I have painkillers that help blunt that, but sometimes I have to lean in to it and realize it’s just part of living,” Connelly said. “Everybody’s doing it.”
Opening up publicly about his journey toward the end is a final lesson the teacher wants to leave behind – one of grief and gratitude.
What does a death doula do?
When Connelly was first diagnosed, the doctor told him his case was treatable. He drove home feeling pretty good. He’d been on more dangerous adventures.
His wife, Becky Jones, did more research. Together, the couple of 31 years began to process that treatable doesn’t mean curable or survivable. In the weeks that followed, Connelly was often too scared to sleep. He’d reach for Jones’ hand at night.
“It felt really good to be there for him — to have him reaching out to me,” Jones said, tearing up.
About 14 years ago, the couple sought the support of a birth doula when Jones was pregnant. The concept of a death doula was new to them.
At the beginning, May helped them as they organized themselves – getting a will, putting Jones’ name on the house’s deed and making sure Connelly’s retirement money would go to her after he died.
While she’s not a lawyer, May is well-acquainted with death and the feelings, decisions and paperwork that accompany it. On top of being a death doula, May is a licensed clinical social worker and founder of the end-of life counseling program at White Bird Clinic in Eugene, Oregon.
For Connelly and Jones, she is a third party who cares but isn’t as emotionally entangled.
“It’s such a huge, huge relief to me to know my son and my wife will be financially okay. And that makes me feel way better about passing,” Connelly said, and then paused. “It doesn’t take away that I won’t be there for my son. That’s the hardest part.”
May doesn’t claim to make it okay. She’s someone her clients can be with when they’re not okay – when they’re overwhelmed, angry or scared.
“So much of the work is just being with those feelings,” May said. “We can’t change it, but how can we be with it?”
Connelly said he’s gotten better at that.
Providing options, support for people with terminal illnesses
Ani Sinclair, a retired kindergarten teacher, is comfortable with death. She’s not afraid of bringing it up at dinner parties. Sometimes she’ll host death cafés, gatherings for people to openly discuss death.
Sinclair was her mother’s caregiver as she died and described the experience as peaceful and beautiful. After that, she wanted to put her comfortability to use. She began volunteering several years ago and has since worked with a number of organizations providing counseling and end-of-life care. In 2017, she joined End of Life Choices Oregon, which provides free, personal and confidential support to people with big questions about how they can die.
“We give you the choices and we’re here to support you with whatever you choose,” Sinclair said.
It’s not unusual for a curious person to call once and never call again, she said. Other times, it becomes a longer-term relationship and volunteers visit clients’ homes in pairs.
“We walk with them,” Sinclair said. “We guide them through understanding the law — allowing them to choose their destination and timing.”
Sinclair does house visits, trains new volunteers and leads outreach efforts. She spreads the word that people have choices through presentations at retirement homes, medical groups and community centers.
People’s choices might include: medical aid in dying, voluntarily stopping eating and drinking, and hospice.
Qualifying for physician-assisted death
Oregon became the first in the nation to legalize physician-assisted death through the Death with Dignity Act a little more than 25 years ago. Since then, nine states have followed suit and seven others are considering it. It allows people with terminal illnesses to end their lives through self-administration of medication prescribed by a doctor for that purpose.
Sinclair and others who provide counsel about death options differentiate aided dying from suicide, even though the process was originally referred to as physician-assisted suicide.
“People should have a choice about how to end their suffering,” Sinclair said. “It’s not about ending their life. Their illness is taking their lives.”
The steps to participate can be cumbersome. The dying person must be considered mentally capable of making their own health care decisions and physically capable of taking the medication. Participants also must be diagnosed with a terminal illness by two doctors, meaning the doctors believe the illness would end their life in six months or less.
Not everyone who gets a lethal prescription uses it. As of January 2022, the most recent data available, 3,280 people had received prescriptions since Oregon’s Death with Dignity Act passed, and 2,159 people, or 66%, died from ingesting them.
If a person who qualifies is interested, volunteers will help them through the process. They will talk with clients about their values and what makes life worth living to help them figure out what they want. Participants consider factors such as comfort and independence.
Once someone has the medication, Sinclair said, volunteers encourage them to listen to their own body when deciding when they should take it.
A menu of options for dying
People with diseases like chronic obstructive pulmonary disease, or COPD, Parkinson’s, multiple sclerosis, dementia or neurological issues often don’t have firm timelines and so don’t qualify for medically-aided death. But they have another option.
They can voluntarily stop eating and drinking.
It doesn’t require a terminal prognosis. But it does take a lot of support. Without food or drink, people can die within days, but death more often comes in one to three weeks.
Another option volunteers point people toward is hospice care, a Medicare-covered assistance program for terminally ill people with fewer than six months to live. Health care professionals will bring their services and equipment to a person’s home. They’re experts in pain management and can ease some of the big questions people might have about what to expect. They typically do not provide around-the-clock support and may have big caseloads, but hospice is a resource many don’t realize they have.
“Comfort care is really what hospice is all about,” Sinclair said. “It’s about increasing the quality of their life rather than the quantity.”
Sinclair and other death counselors said they’ve found a reluctance to begin hospice care. People sometimes feel enrolling is giving up, they said, so they wait to get support.
“I worry about people who are suffering more than they need to because they don’t know the array of choices,” Leila Snow, another volunteer with End of Life Choices Oregon, said.
Without information, some begin to contemplate more brutal ways to take control of their life, including guns.
“I’m always delighted to… tell them ‘I have another idea for you to consider,’” Snow said.
Death counselors help terminal patients find strength
Snow became interested in death work in her 60s as more people she knew died and she found herself comfortable with the process. When she traveled to Mexico to help her cousin as he was dying, she said, there wasn’t hospice or other support services.
“It became very clear that I didn’t know enough,” Snow said.
When she came home, she trained to become an end-of-life doula, which is separate from her work with End of Life Choices Oregon. As a death doula, she offers to “walk alongside” people as they journey toward the end.
“And that walk is totally determined by them,” Snow said.
Some people want rituals and guided meditation or imagery, she said, while others just want to know what to expect from their body. Death doulas offer mental, emotional and spiritual help to clients and their community. There are about 500 death doulas throughout the state of Oregon and their services range in cost.
Often, they find out how their client envisions the final stage of their life and help them make it happen. These details can be as big as avoiding dying in a hospital and as little as the music they want playing when they pass.
“I’m a fervent advocate for whatever they need, whatever comes up,” May said.
When her mom died in 2011, May felt unprepared. She wasn’t always sure how to help or what to expect. Most upsetting, she wasn’t sure what her mom wanted.
“We had to make a lot of decisions based on what we thought she would want instead of being in a position to advocate for her wishes,” May said.
She decided to become the support person she didn’t have. This means encouraging conversations with clients and their families about wishes, values and legacy before they need to happen.
May said there’s a tendency to talk about death as a failure, if it’s talked about at all.
“For something that has a 100% success rate, the taboo in our society blows my mind,” she said.
No ‘battle’ or ‘fight’ to win when dying
People who work with dying people often hear the end-of-life process described with combative language such as “battle” and “fight.”
While words that conjure war imagery can be helpful to those taking on curable illnesses, it can make people facing the inevitable feel like they’re losing.
“That last phase of life is sacred,” May said. “There’s so much that can be missed when we’re fighting against it.”
She helps her clients find some power over the process. Often, people have more choices than they realize, such as when they want to die, how they die, where they die and who they want in their company.
May doesn’t claim to make death easy.
“Death is still scary, it still hurts,” May said. “It’s so hard to say goodbye.”
She doesn’t want to shy from the difficulty of death. Her hope is that by encouraging people to confront it, they experience the full range of feelings the process offers and not just the pain.
Greeting the end and ‘living every day’
Connelly’s cancer is progressing.
Soon, he and Jones will up their sessions with their death doula to once a week. With many of the logistics around his death figured out, the main topic they bring to May is their child.
Connelly didn’t expect parenting to be an issue that a death doula would help with, but then again, he didn’t really know what to expect at all.
“There’s a lot of layers to our work together,” May said. “Death’s reach is pretty expansive.”
Connelly has made plans to die in his home. He’s talked with End of Life Choices Oregon and qualifies for physician-assisted death. He is prepared to go that route if he decides it’s time.
His feelings change frequently. The emotions rise and subside. He’s become more comfortable letting them flow through him, and said that’s thanks to May.
“I don’t think I’m going to have time to write a book about it,” Connelly said, cracking a smile. “It is truly an amazing gift.”
Over time, much of his fear has dissipated. Grief remains.
He doesn’t want to leave his family. He’s not ready to die.
The other feeling that lingers is gratitude.
He spoke about all the adventures he’s been on and the places he’s been. Connelly is emotional when he talks about his years teaching. He said he found a “kindred interest” with students and recounted trips to the outdoors, endeavors to get them bikes, and starting a school garden.
“I was super, super lucky to teach the kids of this community,” Connelly said. “They were amazing.”
When he described the home he made in the Whiteaker neighborhood of Eugene, he popped up out of his seat to point out the window, gesturing at the people and nature around him.
“To live a good life, to be a humble human, you have to have gratitude,” Connelly said. “It sucks that I’m dying, but we are otherwise unbelievably blessed by really kind people around us, fabulous community and this wonderful place we live in.”
He’s glad for the chance to greet the end on his terms.
“I’ve not spent a single day since the prognosis dying,” Connelly said. “I’ve been living every day.”
Contact reporter Tatiana Parafiniuk-Talesnick at Tatiana@registerguard.com or on Twitter @TatianaSophiaPT.