While birth doulas are widely known among expecting mothers, end-of-life doulas are a newer service –– albeit one that’s growing in popularity. End-of-life doulas are typically either clinicians, like nurses or social workers, or individuals who had negative experiences with a loved one’s death. What they share is a deep commitment to normalizing the lifecycle event that no one likes to face but everyone experiences.
Jane Dornemann, an end-of-life doula practicing in Durham, North Carolina, says there are deep commonalities between doulas who support birth and those who guide families through death and dying.
In her own experience, Dornemann lost her mother at 58 in what she calls “a bad death.” Because she had never seen anyone die before, she didn’t know what was or wasn’t normal. “I didn’t know what questions to ask. I wasn’t getting very good communication from the doctors. If I had known what I know now, I would have prevented some things from happening,” she says.
She had a similar reaction years later when she gave birth to her son, and the delivery didn’t go as planned. “I saw a lot of similarities where doctors were doing things to me without telling me or asking. I didn’t know where my agency was or that I could say no, ask questions and make decisions,” she says.
Dornemann researched healthcare in general while reflecting on what went wrong and stumbled upon end-of-life doulas. She completed her training in 2018 and has been supporting clients and their families through the process of death ever since. She’s intimately seen how helpful it is for families to have a guide through the emotions, memories and bureaucratic mess of death. “Death has become in our culture a medicalized event, but it’s primarily a communal, social event and personal event. It takes a village to raise a kid, and it’s the same for helping someone die,” she says.
3 essential traits to successfully become an end-of-life doula
Once you’ve determined your passion for end-of-life care, Dornemann identifies three crucial skills for becoming a successful end-of-life doula.
Active listening
Active listening doesn’t come naturally, but it’s central to the job. “We may think we’re good listeners, but often, we’re forming responses in our minds while the other person is still speaking. As a doula, your goal is to clear your mind, focus entirely on your client and listen without an agenda,” says Dornemann.
Objectivity
End-of-life doulas must constantly practice objectivity and avoid being judgmental. It’s natural to have personal beliefs about death, but as a doula, your role is not to impose your culture or judgments on your clients. Instead, you help clients explore and advocate for their choices without influencing them.
Resourcefulness
Public awareness is still growing, and the role of an end-of-life doula is not covered by Medicare or insurance. Many new doulas finish their training full of enthusiasm, only to be disappointed when clients don’t immediately appear. Building a practice requires proactive outreach and connection-building with senior centers, places of worship, aging care facilities, and other community resources. Success as a doula means creating relationships and raising awareness about your services, often from the ground up.
4 tips for starting a new end-of-life doula practice
In her six years in the field and through building a practice in two states, Dornemann has gathered lessons learned and mistakes to avoid. Following are her tips for launching a new end-of-doula practice.
Choose reputable training programs
Since there is no licensing body for end-of-life doulas, it is important to choose a reputable training organization. Look for courses that partner with or are associated with well-established organizations like the National Hospice and Palliative Care Organization.
Some training programs offer ongoing support, such as forums or Facebook groups where doulas can exchange ideas. Ensure the program not only teaches doula work but also provides business-building guidance.
Gain experience with death first
Taking an end-of-life doula course online alone isn’t enough. Before launching an independent practice, it’s crucial to accumulate practical experience with patients at the end of life.
Volunteering with a hospice agency is a great way to develop hands-on experience. Most hospices welcome trained volunteers with in-home hospice care or at inpatient facilities, allowing you to work with individuals in various stages of dying.
Build a strong digital presence
In most cases, your target audience is adult children of terminally ill individuals. Make sure your website explains your services clearly, showcases your experience and testimonials and makes it easy for potential clients to reach out.
Create tailored service packages
When determining your pricing, it helps to design service packages. Dornemann divided hers up first by stages, including pre-death, vigil (active dying) and post-death work. Today, she offers packages in different categories, such as legacy projects and end-of-life paperwork, depending on clients’ needs.
3 mistakes to avoid in your end-of-life doula practice
Don’t step out of your scope of practice
Even if you have a clinical background, stay within your scope of practice as an end-of-life doula if that’s the role you’re hired to do. This matters for compliance issues and your professional liability insurance coverage.
To avoid overstepping, Dornemann recommends clarifying your role with clients early on with a signed scope of practice document that clearly outlines what you do and don’t do. This protects both you and your clients by setting clear expectations.
Don’t offer your opinions
Death is an introspective time, but your job is only to listen. Your opinions about death or the afterlife have no relevance to your client. Even proactively sharing information readily available online can be problematic. For example, if your client is considering voluntarily stopping eating and drinking (VSED) or medically assisted dying, you cannot send them a link for information. “Once you start helping someone get information, and an adult child finds out that there’s someone who’s been helping them, you’re getting in some scary territory of maybe influencing their decision,” says Dornemann.
Don’t share your knowledge without qualifying your statements
As an end-of-life doula, it’s common for clients to ask about medical and legal decisions. You can share what you know but always qualify those statements. To protect yourself legally and ethically, clarify that they need to consult a licensed attorney or medical provider in those areas. Doing this in writing with a contract upfront can also help avoid misunderstandings.
Click here to learn more about professional liability insurance for end-of-life doulas.
