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When I speak about being an end-of-life doula, people wonder if it isn’t depressing or morbid. Actually, the opposite is true. Finding meaningful work helping others navigate life’s most challenging transitions fills me with a sense of purpose greater than myself. I feel as though I am in the right place at the right time, being privileged to witness the awesome emotion, connection, and healing that can take place.
Merilynne Rush, End-of-Life Doula, MSHP, RN, BSN
Many people are familiar with birth doulas who support women before, during, and after childbirth. On the other end of the circle of life, a similar profession is emerging to serve the non-medical end-of-life care needs of dying people: death doulas, or end-of-life doulas (EOLD). To support people and their families through what can be an emotionally difficult time, end-of-life doulas help individuals and families facilitate advanced care planning, settle logistical affairs, create legacy projects, provide companionship and respite care, sit bedside, and access community resources. If requested, end-of-life doulas can be present for a dying person’s transition from life to death.
A commonly asked question is what is the difference between a hospice volunteer and an end-of-life doula? The most notable difference is their length of involvement. Hospice volunteers can only be involved with patients if they are enrolled in hospice. However, the average length of stay in hospice is about 14 days. So, while people are dealing with life-limiting illness much longer, they are on their own and not getting as much help as they could be.
Enter the end-of-life doula who works independently in the community. An EOLD can be contacted directly by someone who is facing end-of-life challenges and be involved with them for months or even years. And EOLDs generally have more training and a broader scope of practice.
Regardless of when people sign up for hospice care, EOLDs work alongside medical care providers and encourage the full use of available services. EOLDs are educated in palliative care and hospice services, and they can help people access these services sooner. Many types of professionals choose to enroll in EOLD training, including professionals with no previous healthcare experience.
While there is no federal, state or local oversight, many training organizations offer certification, including:
- The Dying Year
- Quality of Life Care
- Doulagivers Institute
- International End of Life Doula Association (INELDA)
- University of Vermont
Read on to learn about one woman’s professional journey of becoming a homebirth midwife, a labor and delivery nurse, a hospice nurse, and an end-of-life doula mentor and trainer.
Meet the Expert: End-of-Life Doula Merilynne Rush, MSHP, RN, BSN
Merilynne Rush holds an MS in hospice and palliative studies from Madonna University and a BSN from the University of Michigan. As an end-of-life doula trainer, she offers training, mentoring and certification for end-of-life doulas through The Dying Year. She is also a Respecting Choices® 1st Steps Facilitator Instructor.
Rush is President of the National End-of-life Doula Alliance (NEDA), sits on the End-of-life Doula Advisory Council of the National Hospice and Palliative Care Organization (NHPCO), and is a former board member of the National Home Funeral Alliance and the Green Burial Council. Rush also founded (and continues to facilitate) the Ann Arbor Death Cafe—part of a global community that gathers to discuss death.
Rush graciously agreed to an interview on her profession and advice for aspiring EOLDs.
Interview with Merilynne Rush, President of the National End-of-life Doula Alliance (NEDA)
How did you get started as an end-of-life doula (EOLD)?
I actually started without knowing I was doing it; I was doing what’s called ‘companion care.’ I had been a homebirth midwife, and then retired from that and did some other jobs for a while, one of them being a job in companion care. I enjoyed being with people and using my training as a hospice nurse and I really enjoyed being able to sit with people.
The term ‘end-of-life doula’ came into the mainstream about five years ago and I thought: ‘That’s what I’ve been doing!’ There weren’t many trainings at that time, so I put together a curriculum and started doing a training which is what I do through The Dying Year, my business. I had done the work before I even knew what to call it. And I still do the work and I’m mostly a trainer and mentor for other people now and I help end-of-life-doulas get started. I do some doula work still on the side and I also have many other ancillary skills that I bring to this work as many doulas do.
I’m a connector, so when I started my work as an end-of-life doula, I brought together as many people as I could to strengthen this profession in its beginning stages. I was one of the co-founders and now the current president of NEDA—the National End-of-Life Doula Alliance, which brings together all doulas and doula trainers.
Currently there is no oversight, no cohesive definition, no standardization to the profession. Standardization is important because both people who are wanting to hire a doula, and people who want to become a doula, want to know what it means. Currently, there is no consistency from one training to another. I worked with other end-of-life doula trainers to form NEDA and create a set of core competencies for end-of-life doulas.
What does a typical day or week as an EOLD look like?
One of the things that’s at the top on my list is whatever I can do that day to inspire or help educate the community. Not everybody knows what end-of-life doulas are or what they do, so I’m always working to get the word out. That includes a lot of outreach, posting something on Facebook, responding to comments, giving a webinar or a free talk, responding to an inquiry, asking if I can come and speak to an organization, or maybe signing up to go to a fair to walk around and talk to people. This outreach work ties in with my work experience as a nurse educator.
I’ll respond to calls, people who are clients and friends. People will call with immediate needs and say something like, ‘My sister is really sick and dying and we need to think about what we need to do to get ready.’ For these people, I’ll do a lot of jumping in and helping. I’ve become an expert in talking about these things, but the average person doesn’t talk about death. I’ve lived in the community of Ann Arbor, Michigan for 32 years, so I’m someone that people know and trust in this community.
People also reach out to me with less immediate, more long-term requests. For example, someone reached out to me and said, ‘I heard you speak about green burial a year ago and now my husband has cancer and we want to put our ducks in a row, can you help us?’ Sometimes people request help with projects, such as cleaning up areas of their house, getting affairs into order, or doing a legacy project—a physical form of doing life review.
Other services I provide during my time with people include listening, hand-holding, companionship, validating, and providing a safe space to talk about whatever their concerns are and trying figuring out what they need—advanced care planning, talking about what kind of healthcare they want, lining up a support person. I teach people to facilitate these conversations around dying and how to widen their circle of support, but I actually facilitate these conversations as well if needed.
How do EOLDs differ from birth, post-partum, or abortion doulas?
The doula model of care is the same whether you’re doing it at the beginning of life, middle of life, surgery, abortion, or end of life. Doulas don’t come in and say: ‘Here’s how to do it.’ The doula model of care is about being of service to you to help you do what’s important for you—not bringing our own views, our own values, our own ideas into it. We’re of service to you in however you need it.
Also in the doula model of care is providing resources and helping people coordinate. We don’t provide medical or clinical care at all. That’s an important thing. Even if you’re a nurse who has doula training, when you’re working as a doula, you don’t do medical care. You can be a nurse or an aide that is doula-informed, but if you’re working and hired and being paid to be an end-of-life doula, you can’t give medical advice.
As a trainer for EOLDs, what do you think the future holds for this profession?
It’s going to be fluid; it’s going to change. Educating the community takes time and it will be a while before people know that end-of-life doulas exist. That’s a huge learning curve. I think we really have to combine the work with other professions and be open to seeing how it changes, grows, and shifts. I do think it’s here to stay, but I’m not 100 percent sure of how it’s going to look. I do not think it’s going to be third-party reimbursed anytime soon.
I do think more hospices are going to want to bring on more people who have end-of-life doula training as volunteers, but I do think the future of it is going to be community end-of-life doulas: independent, freestanding, and accessible.
What are some memorable moments from your time as an EOLD?
My most recent experience was with a friend. She never called me her doula; I considered myself her doula.
I did advanced care planning with her; I helped her line up support; I helped her get all her paperwork in order; I helped her discuss with her closest neighbors and friends that were supportive; I helped her discuss plans with her daughter to get things lined up; and I was able to just go be with her because she was a friend. I could just call her up and say, ‘Hey can I come visit?’ and we would visit together, so I think that the doula work really informed me on how to be a good friend. I was able to be sitting with her when she was no longer lucid hours before she died because of all of the preparation work we did together over the course of a year.
That’s where the term ‘The Dying Year’ comes from: it’s embracing that this is a time of life—a stage of life—that we should prepare for it, and we should have resources to help us with it just like we do for having children, going through adolescence, getting divorced, retiring, we should be able to talk to other people about our experiences.
What advice do you have for people who want to pursue EOLD training?
I offer end-of-life doula training through The Dying Year which is very comprehensive and thorough, and meets the NEDA core competencies which I helped develop.
They should also go to the NEDA website and look at the list of end-of-life doula trainers. Anybody that they’re thinking of studying with should have a curriculum that covers the core competencies listed on the NEDA website.
Prospective end-of-life doulas should also be open to the fact that they might want to take more than one training. There are so many different styles, philosophies, and emphases. That’s a good thing. The more doulas there are, the more people there will be having doulas. It’s reasonable to expect that they might be interested in studying different styles and philosophies.
Is there anything else you’d like to share about the EOLD profession?
I’m also involved in doing academic research. We don’t have any academic research on end-of-life doulas, just anecdotal stories, so that’s an important piece that’s coming.
Rachel Drummond is a freelance writer, educator, and yogini from Oregon. She’s taught English to international university students in the United States and Japan for more than a decade and has a master’s degree in education from the University of Oregon. A dedicated Ashtanga yoga practitioner, Rachel is interested in exploring the nuanced philosophical aspects of contemplative physical practices and how they apply in daily life. She writes about this topic among others on her blog (Instagram: @oregon_yogini).