Shelby Krillen trained as a nurse, but after decades of working in hospitals in Richmond, she was ready to make a change. While helping care for a friend dying of cancer, Krillen was moved by how peaceful and loving her friend’s final moments were. She found herself wondering why everyone couldn’t have a similar experience. Krillen has since been certified as a Death Doula by the International End of Life Doula Association (INELDA), and makes it her mission to help families create meaningful end-of-life transitions. She talks with Legacy Navigator about why a “good death” is so important.
Legacy Navigator: Well, I’m just going to start off with the big question – what in the world is a “Death Doula?” It sounds ghoulish.
Krillen: When people ask me what I do I have kind of an elevator pitch. First, I ask, “Do you know what a birthing doula is?” Generally people are familiar with that, so then I say, “Ok, what a birthing doula does to support the birthing mother, I do for the person dying and the caregiver. I support them while they are dying so they can have the death they want.” And people either walk away, quickly, or they ask me more questions.
Sometimes I’ve heard it called an “End of Life Coach” or “End of Life Doula.” When I first got started I called myself a Death Midwife. My friends all laughed and jokingly called me the Angel of Death.
Q: Got it. So, where did this idea come from?
A: It’s part of what people are calling the “Conscious Dying” movement. I attribute this to Baby Boomers. I mean, 30 years ago this was the generation that took back birthing. They said, “My body knows what to do, this is a natural process. I don’t want to lie on a table and be over-medicated. I want to be with my family and be comfortable.”
Death isn’t the opposite of life. It’s the opposite of birth. Both are part of the same spectrum of life.
Q: How did you get into this field? How did you even know it existed?
A: I’ve been an intensive-care nurse for 20 years. About seven years ago, I started feeling this frustration with the deaths I saw around me at work. For every 10 bad deaths, I’d see one good death…
Q: Hold on. “Good” death?
A: Yes, exactly. Say you have two mothers dying in the hospital, surrounded by their families. In one room you can feel the warmth, love and support. Yes, there are tears and sadness, but it’s a loving situation that has a certain weight and beauty.
In the other room, the feeling is cold, uncomfortable, sterile. People aren’t talking. I’d walk in and want to walk right back out immediately. I saw that a lot in the ICU.
So, I started marinating on this. Why the difference? Everyone should have this wonderful warm feeling, why don’t they?Q: Great question. What’s the secret to a good death?
A: What I boiled it down to is talking openly about the elephant in the room. This goes both ways. Sometimes the family wants to talk about the coming death but the patient doesn’t. Or the patient wants to, but family cuts them off and says something like, “Don’t talk that way.”
This fragile bubble of hope we live in, when it gets popped, there is this this anxiety and pain that doesn’t need to be there.
Death and dying is sad, but it shouldn’t be scary. It’s sacred. We need to talk about death, it’s the last taboo in our culture. When we don’t talk about it we are setting ourselves up for a bad death.
Q: How exactly do you get people talking about death?
A: I’ll meet with clients once a week, or every other week, depending on how rapid the end of life process is. We do a lot of life review work. It’s a natural thing as humans to go over our life when the end is coming. But at a lot of times the thinking is disorganized and no meaning is extracted.
Sometimes I’ll ask hard questions about regrets, shame, and unfinished business. I’ll ask big open-ended questions like, “What events in your life shaped who you are right now? What did you learn when you fell short in life? Tell me about direction changes in your life, what events or decisions changed your life trajectory?” Talking allows people to work through that.
Q: That sounds pretty heavy. What if someone isn’t ready to get that deep?
A: Oh, it can definitely be a struggle. Not everyone is ready. All I can do is open a door, I can’t make someone walk through it.
But we also do what I call “legacy work,” and that’s more physical, or project-based. For example, one of my clients was very politically active in the ‘70s and ‘80s. She had a wealth of friends from all walks of life. Instead of reaching out to them one by one, she emailed all of them and asked for stories of times they had shared. The stories started flowing in from her entire life spectrum and my client got to remember the impact she had on so many people.
She and her daughter would read them together every night, and not only did my client get to reconnect with people, and revisit meaningful times in her life, but her daughter learned so much about her mother.
Her daughter put the letters in a huge binder. At her death, the client wanted the memory book read to her. And now her daughter has this notebook that she can share with her own children.
The legacy work gives people something to do so they aren’t sitting there watching television, waiting for death to come. Some tell me that it gives them a reason to get up in the morning.
Q: So, are you physically there with the family when someone dies?
A: Yes, when active dying comes, I visit daily. Some families are pretty strong with it, they are taking shifts and they don’t really have any questions for me. Others are like deer in the headlights. I have to be there to help hold the space for them because they are trying to hold the space for their loved ones.
Before that time, I help create a vigil plan, which is like a birth plan but the opposite. How do you see your death? Most of my clients want to pass away at home. So, we want to make sure the room is culturally appropriate. For example, Jewish people may want their feet facing toward the door. We choose music, lighting. One client wanted a pink light for a warm glow in the room so she wouldn’t look ashy.
Dying is a sacred time, so I ask the client how we can make it sacred. One woman wanted everyone to take off their shoes before coming into the room.
Once someone dies, rituals are very important for the people who have cared for and labored with the dying person. We may select poems or letters to be read. We may say a prayer over the body.
I continue to visit for three to six weeks afterwards. The people laboring with the deceased person usually want to talk about their experience. Not in a sad way, but just remembering things. Sharing things they saw that others may not have noticed at the time. It’s such a fog, a haze, when someone is dying. People want to touch base afterwards.
Q: What is the future of end-of-life coaching? Is this something we’ll all be doing in ten years?
Actually, people are starting to have more awareness about it. I would love in 10 years to say I’m a Death Doula and most people would know what I’m talking about.
Today, an oncologist tells a patient there’s no more that they can do for treatment, then they just turn the patient loose. And the patient is otherwise healthy, so it’s too early for hospice. Then this patient just wanders around, and misses an amazing opportunity to do this life review work.
We are making a little progress. Doctors are being reimbursed by insurance companies now for having end-of-life conversations with patients.
Doctors may suggest that a patient talk with a chaplain. And years ago a minister might have met these needs. But I met with a group of student chaplains recently and asked if they train for this in seminary. They don’t. In seminary, they learn what scriptures to read at death, but not how to sit and share space with people who are dying. The student chaplains I spoke with said they don’t feel very equipped for that.
I hope we can strip away the taboo of this topic. There is a big crack in our care for death and dying, and I’d love to fill it.