User Research

Interview with a Doula

End-of-life (EOL) doulas are non-medical professionals who aid individuals at the end of their life, shepherding them into death, advocating on their behalf. EOL doulas are not licensed funeral directors, therefore they cannot perform any deathcare preparation (cleaning, embalmment, transportation). However, they can advise the family how to perform such duties at home and connect them with the proper people to assist in the job. This distinction is important and is directed by state law.

I spoke with three end-of-life doulas: Merilynne Rush, Lifespan Doulas founder and president of the National End-of-Life Doula Alliance (NEDA), Suzanne O’Brien, founder of Doulagivers and vice president of the NEDA, and Chad Lewis, a reiki master, ordained minister, and trained end-of-life doula.

Communities have really necessitated this profession. Merilynne has observed that people are simply dissatisfied with how funerals are conducted; as a response, she also runs a After Care and Green Funeral business in addition to her doula education services, fully injecting herself and her talents into an industry in need of innovation.

Without validation, grief cannot happen. Doula care is based on the client’s values and goals, even if those differ from values cherished by the doula. Chad spoke of his ability to be the person his client needs, providing empathy and understanding to everyone regardless of background or financial status. He and many other doulas strive to work on a healing basis, and take the time to support clients no matter the circumstances. We all deserve someone to help us.

By the time death comes into a person’s life, it’s often too late for preparedness. People panic and are burdened by the difficult decision making and emotional struggle that lies ahead. EOL doulas help families prepare and create a celebration of transition. Consider other important life events­—the birth of a child, a wedding, or even a retirement. All require months of preparation and planning to make each occasion a smooth transition. Why are we not striving to make the most universal and final event of our lives as smooth and comfortable as possible? We cannot control how and when we die, but why not attempt to plan the pieces that we can control? Why not prepare our friends and families by discussing information that could aid or guide them through what might be some of the worst days of their lives?

My conversations with end-of-life doulas have continued. Merilynne has become a frequent contact of mine who has connected me with many other individuals who work within the end-of-life industry. I will continue using my new-found doula community as expert advisors throughout this project.

Survey Results

I reached out to my own community seeking individuals with stories to share. My goal was to gather insight about the grieving behaviors my social media contacts.

Expression of Grief: Interesting results came from questions surrounding how social media has helped express or process the loss. Participants indicated that social media is "warm" or "real", unlike the coldness of a grave or urn. It's also a way to release sadness, notify other people that a death has occurred, and allow others to "hear" their emotion.

Advocacy: Survey participants also use social media as a platform for advocacy, such as to raise awareness on suicide prevention or gun violence.

Continued Bonds: Participants indicated they use private thought and prayer and talking out loud as primary methods to communicate with their departed loved ones. In this sample, social media was surprisingly not as popular of a tool used to communicate directly to the deceased.

Hashtags: I was interested in the reason behind including hashtags on posts, such as #rip, #funeral, or #grief. Survey respondents indicated that using a hashtag makes it easier to connect with others with similar experiences, increase the virality or spread of the post, and to catalog posts of the same topic for reference.