The education that end-of-life doulas receive can make a significant impact on their ability to support terminally ill patients’ nonmedical needs.

Doula training programs vary across the country, which can result in diverse end-of-life experiences and significant misunderstandings about the role of these professionals, according to Kacie Gikonyo, a long-term care registered nurse and founder of Death Doula School.

Doulas need greater exposure to training in certain key areas such as goals-of-care communication and business acumen, Gikonyo indicated.

“Being a doula takes a different type of confidence to be able to sit with dying people over and over again,” Gikonyo told Hospice News. “You have to learn boundaries, be spiritually comfortable and be able to have hard conversations in difficult situations in this type of work. There’s not really any teaching of the business side of things. And, a lot of people need more support and education, because there are parts of death that can be scary and doulas are very unprepared to handle.”

Doula training keys

Demand for doula training has swelled alongside the growing aging population with a wide range of nonmedical needs, Gikonyo stated. But the education that these professionals often receive does not sufficiently encompass the multitude of aspects involved in the dying process, she stated. This has resulted in knowledge gaps that can dampen quality and impact staff retention.

These issues inspired the launch of Death Doula School in 2023, she stated.

Death Doula School is an end-of-life doula training program that operates across the United States. The Cleveland-based school offers 16 doula training modules and began by serving students across the United States before expanding into Canada in 2024. The training program has since grown to reach students in Israel, South Africa and Spain.

“A lot of the doula training out there is really poor at preparing a doula for all of the parts of death, which can leave people floundering,” Gikonyo said. “They don’t get taught about the business side of things. We want to send people out there fully prepared for all the beautiful and ugly parts so that once their education is finished they can hit the ground running with more support.”

Having business training included in doula education can lead to better understanding about the different payment mechanisms, referral processes and ways to grow and expand these professionals’ services.

End-of-life doula education should also include more clinical components to familiarize professionals with the medical aspects of dying, Gikonyo stated. Though their roles are focused on nonmedical support, understanding how terminally ill conditions can progress helps families manage a loved one’s various physical and emotional needs.

Doulas need a wider lens around the different types of facility- and community-based settings where hospice patients are able to receive care, according to Gikonyo. For instance, these professionals need training on how each care setting differs in rules, regulations and safety protocols.

Other key components include training doulas on both adult and pediatric hospice care delivery, estate and funeral planning, burial and cremation options, legal processes, bereavement and supporting the needs of a person’s pets.

Teaching doulas about the importance of self-care and mental health support is key to their sustainability in end-of-life care, Gikonyo said. These professionals are able to spend a longer period of time with patients and families compared to clinicians, and this can lead to higher levels of burnout and compassion fatigue among these professionals.

Doulas have unique skillsets and diverse interests, but empathy and compassion are the most important to possess, said Shaena Whitney, director of volunteer services at Angel Hands Hospice and Palliative Care.

Doulas can be trained to support a patient transitioning to hospice in several ways, Whitney indicated. Among these is having doulas assist with marketing or become part of a hospice’s bereavement or palliative care team.

“From bringing doulas onto the marketing team, to going the extra mile in the bereavement program, to the quality of the palliative care program … Everything is so patient-focused,” Whitney told Hospice News in an email. “The benefits are truly endless. Families feel less alone, patients find comfort in being seen beyond their illness, and volunteers discover a deeper sense of purpose. Some use creative skills to design flyers or keep our community connected, while others bring the gift of listening and presence. Each contribution, no matter the form, strengthens the hospice experience with dignity, love, and care that reaches far beyond the bedside.”

Training needs and impacts

Having better trained doulas can result in patients receiving more empathetic and consistent care, according to Whitney.

Texas-based Angel Hands Hospice and Palliative Care is led by managing partners Johny Chacko, founder, and Arti Patel-Cheadle, administrator. The hospice provider recently expanded its volunteer-based doula program. Among the goals is to develop a doula-certification training program.

Though doula volunteers undergo training in the basic policies and procedures mandated by hospice regulations, it’s “not enough” to sufficiently educate these professionals, Whitney said. Having peer-based guidance and support is crucial.

“Our training is doula-informed, not a formal doula certification, though that’s our long-term goal,” Whitney said. “It gives them insight into what a doula would do in certain situations and the tools to do so themselves, so they are better prepared.”

Deeper integration of trained doulas could go a long way toward improved outcomes, said Dr. John Loughnane, CEO of Present For You LLC. The organization provides end-of-life doula services and companionship for individuals with serious illness. It currently serves Virginia, Maryland, Massachusetts and Washington D.C., and is seeking to expand in New York.

Present for You in 2022 formed a collaboration with Virginia-based Goodwin Hospice, which is part of the nonprofit senior living and health care organization Goodwin Living. The organization provides doula services to the hospice through a supportive staffing model. The hospice’s foundation supports these services at no cost to patients and their families. Thus far nearly 2,000 doula visits have been provided to Goodwin Hospice patients through the model.

A missing component of many doula education programs is basic health screening tools to assess patients’ anxiety, depression or difficult physical symptoms, Loughnane stated. Engaging these professionals in trauma-informed care approaches is also crucial, he said.

More consistent and expanded doula training opportunities are needed, he said. Building a stronger foundation of trained doula professionals would require change at regulatory and reimbursement levels. If payment structures existed to support their education, doulas could develop a better understanding of hospice eligibility and the common barriers that prevent improved access, Loughnane indicated.

“Doula training is absolutely varied and doesn’t have a standard core curriculum,” Loughnane told Hospice News. “A lot of the training is understanding how hospice and our medical systems work and how doulas are integrated and augmented into them. We really see the value in standardizing doula training with medical understanding. Doulas may not have a lot of patient experiences, so it’s spending a lot of time going over communication techniques, how to be present and really putting that framework of feedback in place. We need to pay to train them, which creates an expectation of accountability and sustainability.”