We each deserve to spend the last months, weeks, days, and hours of our lives in an environment that makes us feel empowered, human, and whole. But doing so requires frank conversations about death, which many of us struggle to have, even with ourselves. According to a 2018 national survey by the Conversation Project, only 32% of people have discussed their wishes for end-of-life care, even though 92% believe it’s important to have those discussions.

When we do manage to have those discussions, the systems around death and dying are complex and often exhausting to navigate, meaning many people who are terminally ill or dying end up with unmet needs, even when their support system is doing everything they can. 

Those situations are where a death doula—also called an end-of-life doula—can be helpful to have.

What is a death doula?

A death doula is a companion and guide through the end-of-life process. Their primary client is the dying person, though they also work with other members of the family, community, or care teams. Many death doulas take on small caseloads, allowing them to meet with clients more often and for longer sessions than care providers with intense caseloads or family caregivers with multiple responsibilities may be able to.

Death doulas provide six areas of support:

• Presence: Acting as a nurturing, calming companion.
• Emotional support: Being there for patients to talk to, being the person who doesn’t shy away from talking about death.
• Information sharing. Educating on relevant topics as needed.
• Proactive guidance. Anticipating patient needs and planning accordingly.
• Resources connection: Referring out to appropriate providers and community resources.
• Comfort measures: Using non-medical means to ease physical discomfort. 
• Logistical support: Including household help, coordinating community care, etc. 

Why might you work with a death doula?

Since wants and needs at the end of our life are as unique as each of us, there are many reasons why you might engage a death doula. Common ones include:

• You want the assistance of a compassionate guide when having those difficult conversations about death and end-of-life planning with yourself, or with someone else.
• You’re unsure how to start planning your end-of-life care and want help navigating the process. 
• You have a limited support system and want a companion through your final months, weeks, or days. 
• You want more companionship, emotional support, comfort measures, or logistical support than hospice, caregivers, or the other members of your care team have the capacity to provide. 
• You want someone to help plan and/or participate in your vigil. 
• You have knowledge, stories, etc. you want to pass on and need help with legacy planning/projects, which have been shown to increase patient and caregiver wellbeing. 
• You want help planning your deathbed ecosystem; where you pass away, who is present, what the room looks, sounds, and smells like. You have every right to cultivate a deathbed ecosystem that brings you comfort, peace, even joy.
• You’re nowhere near death but you want to be on the safe side by planning proactively. 

How to choose a death doula

Currently, death doula work is not heavily regulated. Organizations like the National End-of-Life Doula Association and the Internation End-of-Life Doula Association offer certifications in order to lend a degree of consistency and accountability for doulas. But certification isn’t legally required for someone to advertise as one.

When contacting a death doula, you can ask if they’re certified, and by who, and what training they’ve undergone; in Oregon, the Peaceful Prescence Project is commonly used and well-regarded. You can also familiarize yourself with the death doula scope of practice; that way, you can identify if a death doula is offering services outside their capacity to provide. 

It can help to spend time thinking about what death doula services you want, as the exact services offered can vary between providers. Knowing what matters most to you in your end-of-life care makes it easier to find a death doula who’s a good fit. 

You can find more advice on selecting a death doula at NEDA. If you decide to work with a death doula, you can use the NEDA “Find a Doula” directory or this state-by-state directory to find one near you. 

Written by contributor Sam Wall, LMSW NEDA-Proficient, and trained in death doulaship through the Peaceful Presence Project. You can visit Sam’s website for more information here: https://morningstardeathdoula.com/about/