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Redefining How We Approach End-of-Life Planning and Care: Profile of Death Doula Jane Whitlock

Doula derives from the Greek word for a female servant. In recent decades, it has been become professionalized by individuals of all genders who offer support and comfort to people during pregnancy and, more recently, to those who are dying. Doulas do not have a medical role. Instead, death doulas, sometimes called end-of-life doulas or death midwives, provide a dying person and their family with emotional, physical, and psychological support.

Jane’s Path to Becoming a Death Doula
In her “first life,” Jane Whitlock was a social studies teacher and athletic director. Her husband was a principal. Their whole life was school. At 47, her husband was diagnosed with kidney cancer. It was unexpected. And, four months later, he died, spending his last two months in hospice care. Although Jane’s experience with hospice was overwhelmingly positive, she recalls she still felt overwhelmed by the intensity of the demands on her during this period. Jane felt ill equipped to be both a caregiver to her husband and to their young children who were about to lose their father. Jane recounts she felt like she had to be a “soldier” throughout that difficult time.

After her husband passed away, Jane’s outlook on life began to change. As she processed her own grief, Jane became interested in the role of a death doula through her own self-study on issues surrounding death. As a death doula, Jane emphasizes she wants to give others permission to not have to “soldier on.” She sees herself as the person “who opens the door” to help others deal with their grief and process a terminal diagnosis so they can prepare for their final moments of life. While it can be difficult, Jane says her work as a doula gives her a profound gratitude and reminds her life is precious, and to be grateful for the time she has.

The Role of Death Doulas in Hospice Care
According to Jane, the average stay for a hospice patient is 11 to 17 days. Unsurprisingly, this can be an intensely emotional experience for patients and their families, and medical providers are often unable to help them process their emotions during this period. This is where doulas step in as a resource to help patients and their “tribe”—their circle of family and friends—as they navigate this difficult time. Doulas provide nonmedical support to help ease the transition for the terminally ill and their families as they prepare for and experience death. As described by Jane, a death doula’s role varies greatly depending on the individual needs of the client, their anxieties, and what stage they are at in their end-of-life process. Jane might receive an initial call shortly after a terminal diagnosis or hours after a loved one’s death.

One of a doula’s major roles is to help patients prepare for their final moments by discussingwith them how they would like to spend their last days, whether in a hospital or home setting. Doulas help clients think through who they want around them and plan out the details of their final setting, such as whether they want to hear music or be led through a mediation; whether they want to have someone hold their hand; and any rituals, either religious or secular, they want performed. As the final moment approaches, doulas help their client’s navigate other difficult or unknown aspects of the end of life, such as discussing what symptoms a client might display, explaining unknown terminology used as the end of life approaches, and working towards an acceptance of death. Jane will often counsel loved ones about common stages of death; she might also sit with families during a hospice meeting and ask about what symptoms they can expect to see down the road. Jane helps clients and loved ones redirect their focus so they can make the most of the time they have left. Jane has also been a respite resource for family members who do not want to leave their loved ones alone in hospice. She might bring a home-cooked meal or visit the ill person to allow their family to have a chance to care for themselves.

Doulas also help after their client’s death. This can include, for example, assisting with funeral planning and bereavement. Doulas might support the deceased’s loved ones as a “grief companion,” and help them talk about and normalize their grief and come up with rituals to mark difficult anniversaries.

For Jane, she sees her most important role as being “an emotional lighthouse” for clients and their families. “There are all these issues they may or may not see coming, so to be this calm presence in the room that they can look to and just be like, we’ve got this, we’ve talked about it, we will figure it out.” By providing a calm presence that people can look to, Jane helps them to be present and feel comfortable and connected to their loved ones in their final moments.

The role of death doulas is only now developing, and hospice organizations are often cautious about allowing doulas to participate in end-of-life care in their facilities. Jane acknowledges this is an understandable position, since doulas currently have no form of professional accreditation or official connection to hospice. Jane, however, has built up trust and credibility with a local hospice over many years of volunteering.

Jane says she sometimes feels she is stepping on other people’s toes—be it the Chaplain or the hospice social worker—but Jane believes, “To do my job, I can’t have a job to do.” Nonetheless, she is very clear she does not see her role as medical or in any way at odds with hospice staff. Further, she does not believe the doula’s role is to advocate for families or insert themselves into conversations with medical staff: “Bottom line, we are not medical.” Instead, Jane sees her role as a doula as being someone who can reinforce hospice’s messages to its clients and help client’s and their family members feel comfortable during an often-traumatic period. When Jane initially meets with a client, her job is not to elicit specific information, it is to listen and to help the dying person “discern what they want and communicate that to their tribe.”

Twin Cities Doula Community and Training
Jane says there are many ways to come to this work. She recommends hospice volunteering as the best entry into the field of becoming a death doula. She leads a group of mentees with whom she discusses case studies. Some local hospice facilities in the Twin Cities have begun to offer volunteer doula training programs and Jane hopes that, in the future, death doulas can continue to grow as a profession and begin to have fulltime positions in hospice programs. Jane is a founding member of the Minnesota Death Collaborative, which strives to provide those interested in end-of-life planning with comprehensive resources and education. Local doulas regularly meet to share their experiences about the work they are doing. There are also peer support groups.

There is, as of yet, no centralized regulatory body for doulas. A number of organizations, however, offer training and certification programs. The National End of Life Doula Alliance has developed a core competency program that could become a professional standard of practice for doulas. In April 2019, the organization developed an assessment that tests a variety of practical skills. Those who pass receive a badge. Jane estimates at this point approximately 1,000 people have taken it, and her hope is that this will bring standardization and credibility to doulas who want to work with hospice.

Doulas and Elder Law Practice
Jane compared the legal work in elder care planning as similar to the palliative care she provides. Jane sees death doulas as another “portal to planning for end of life.” Like elder law attorneys, doulas are often more helpful to families if they are involved well before a death occurs. Jane believes it is important for terminally ill individuals to begin thinking about the death they want to have, and how they can get there. Clients need to have plans laid out for them before they become too ill to make important decisions regarding their preferred care and end-of-life process.

A doula may also be a helpful resource for practitioners to recommend to “solos”—clients who do not have children or partners. Jane has helped these sort of clients make plans for the type of support they will need as they approach the end of their life. Often these plans involve the companionship and support of doulas, who can be a stand-in for children or other family members. Jane also sees the doula as being helpful to families who are providing care to loved ones with Alzheimer’s or dementia, which can be difficult for families to navigate alone. Jane has received some recent referrals from elder law attorneys in Minnesota, particularly after speaking at the Elder Law Institute this past fall. She has also begun to collaborate with local funeral homes as an additional resource for those who are beginning to make their end-of-life plans.

Additional Resources
For those interested in learning more about death doulas and the work they do, Jane suggests getting involved with the Minnesota Death Collaborative or attending one of the monthly meetings at the Twin Cities Death Café. She also recommends the book The Beginner’s Guide to The End: Practical Advice for Living Life and Facing Death, by Dr. BJ Miller, a palliative care specialist. And, of course, there is YouTube; you can find a funny and touching discussion by Jane about her own transformation to being a death doula. Search “What I Learned About Life from Death Jane Whitlock” on YouTube for her 2018 TEDxMinneapolis talk.

Kathleen Hoffman and Jon Hoffman
Jonathan.Hoffmann@courts.state.mn.us
Ms. Hoffmann has a background in civil litigation, and has also practiced in elder law and special needs planning. She formerly clerked for the Hon. Tracy Smith at the Minnesota Court of Appeals, and graduated cum laude from the University of Minnesota. Mr. Hoffmann also graduated from the University of Minnesota, and is currently a law clerk for the Hon. Hilary Lindell Caligiuri in Hennepin County District Court. Mr. and Mrs. Hoffmann met in law school and were married in 2018.
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