A Collaborative Event
The Meditation Room at Providence Place - a peaceful space created by Jane Whitlock and her colleagues for residents and their families, especially those who are dying and their loved ones.
As I waited in the lobby at Providence Place, a senior living community in Minneapolis, for my meeting with Jane Whitlock, I heard bits of an excited conversation between two people about someone withdrawing money from their bank account and going to the casino. Later in Jane’s office, she explained that she was talking to a family member of a Providence Place resident who is dying and planning to go to the casino one last time. She could not have been happier for them. Jane is a death doula and that is what her work is all about: helping people embrace death by taking back the power to choose how they live as they die and pass with as much peace as possible.
The International End of Life Doula Association defines a death doula as someone who provides comfort, companionship and guidance to those planning for death, diagnosed with a terminal illness or facing imminent death. Jane is on the board of End in Mind, whose mission is to empower people to proactively prepare for their death, so they are inspired to live a more fearless and intentional life today. She responded to an email I sent to the organization hoping to speak with someone about hope and the end of life. I was thrilled when she agreed to meet with me. I was intrigued when I saw in her email signature line, “Death is a collaborative event.”
Transformed
Before our meeting, I watched a highly viewed Ted Talk Jane did in 2018 about what her partner's death taught her about life. Rob passed away on Christmas Day 2013 only a few months after being diagnosed with cancer. After his death, she and her two sons, who were nine and thirteen at the time, took an eight month road trip to visit family, friends and as many beautiful places as they could while grieving and working to heal. By the time they returned home, Jane knew she’d been transformed.
In 2015, she enrolled in a death doula certification program. At that time, programs like the one she was in, which she describes as very practical, were in their infancy. Since then, death doula programs, including the one she was in, have come a long way. After that, she went to what she describes as “boot camp for end of life work” at Our Lady of Peace Hospice where she was a volunteer death doula. Her first paid position was at Carondelet Village before moving to Providence Place to create their End of Life program from the ground up. Today, she is one of two death doulas that works there while also working with clients in her private practice.
100% Honest
Jane says many terminally ill people are not asked what their hopes and fears are around the experience of dying and death and there is a lot of loneliness tied to that. She can only imagine how awful it must be to know what is going to happen yet have no one ask you about it. Equally harmful is when the medical staff doesn’t inform a terminally ill patient what is happening to them as they are dying. One of the things Jane loves most about her work is being 100% honest with the terminally ill people she works with because they deserve no less.
Her commitment to honesty inspired her to create a ritual that she uses whenever she says goodbye to a person she believes she is seeing for the last time. She shakes their hand with her left hand and says, “This may be the last time I see you. I hope it is not, but just in case it is, I want you to know I will remember you.” It is a simple gesture that honors the person by being truthful and keeps her from carrying around unresolved grief because she didn’t get to say goodbye.
To-do List
When working with someone either at Providence Place or in her private practice, Jane helps them understand that there is much they can do to personalize their death experience and make it how they want it to be. Together they figure out what the work is and create a to-do list. The list can include addressing fear about dying, anxiety about what happens after death, addressing unresolved stuff in their heart and or things they want to do, like going to the casino one last time. And then like any to-do list, they work on checking things off of it. Jane makes no judgement about what is on the list. It is up to her to meet people where they are at and let them set the pace for their work together. At Providence Place, a social worker and chaplain often help with to-do lists.
It’s also important that Jane be present in her work, but the intensity of it can make that difficult. Early on, she learned how to replenish her energy in between seeing people, so she could be fully present for each one. At an end of life conference in Duluth, Minnesota, she met Frank Ostaseski, author of The Five Invitations: What Death Can Teach Us About Living Fully. She asked him how to best refresh her energy as she moved from person to person. He recommended that before entering someone’s room, she take a deep breath and figure out which side the hinges are on the door she is about to open. Doing that in the few moments she has helps ground her and reset her head and heart for the person whose room she is about to enter.
Consequences of Resistance
People resist thinking of themselves at the end of life, even if they are in hospice. When Jane visits someone who just entered it, she makes a point of asking, how does it feel? How are the people in their life feeling about it? She can tell by their answers whether they are in a place of resistance or open to embracing their end of life. As a doula, she has no judgement about how someone does or does not face their death. She is there to give options, which they can reject. But she has seen the good that can happen when people are open to embracing death. At Providence Place, she helps people create a vigil plan for when they are actively dying, usually three to seven days before their death. It can include prayers and or poems they want read aloud in their room or music they want played. Staff follow the plan as a way to honor their connection to the person and celebrate and comfort them.
Jane shared an experience she had with a Providence Place community member, who was deeply religious and terrified to die. Her beliefs brought her no comfort and she was unwilling to embrace and tussle with death. In Western culture, death is often resisted, and Jane sees the consequences of that resistance frequently in her work. Too many people have the mentality of “Do everything to keep me alive,” which means they end up in an ICU being kept alive on a ventilator. Jane believes there is much we can learn about embracing death from Indigenous and Eastern cultures.
There are many reasons people resist death, and Jane touched on three of them during our conversation:
We resist getting old and the changes that come with it.
Humans are tribal but we are living at a time when we are very fractured. It’s isolating us and a lot of people are lonely.
People have lost their connections to ancestral rituals that helped them celebrate life and death and make meaning of them as a result of withdrawing from religious and civic institutions.
Live Better Lives
Jane Whitlock - Death Doula Jane
Photo Credit: Jane Whitlock
In the last ten years, hospice care has become increasingly for-profit and focused heavily on relieving physical symptoms with less support for the emotional and spiritual side of death. This troubles Jane, because it reduces people to a collection of symptoms. People who want to deliver quality care to the terminally ill are still drawn to the field, but they are stretched thin. A few years ago, a hospice nurse cared for about twelve patients. Today, that number can be upwards of 22. When time with patients is reduced, it becomes all about managing their medications and not about getting to know the person. At a time when end of life healthcare has become impersonal for many, death doulas can make the end of life journey personal and help the terminally ill know they are more than just their physical symptoms.
The Afterlife of Billy Fingers: How My Bad Boy Brother Proved to MeThere’s Life After Death is a book Jane uses with people who are afraid of what happens after death. The author, Annie Kagan, was contacted by her older brother Billy, after he was hit by a car and died. Billy lived a troubled life but shared a detailed account of his afterlife journey where he is healed, joyful, surrounded by love and at peace. For Jane, the book re-enforces her belief that we come from love and we return to love.
A lot of people think death is something that happens to them and that they have no control over it when in reality we can choose to make our death experience what we want it to be. Jane wishes people would think about working with a death doula as they do a financial planner, but that is probably a long way off. But she is hopeful that we can create a culture where we all live better lives because death is a natural part of it.
Learn More
Visit Death Doula Jane to learn more about Jane’s work and working with her.
Visit End In Mind to learn how to live a more fearless and intentional life while planning for your end of life.
