If you ask any end-of-life doula or hospice worker, they will tell you that caring for the dying is all about the journey. For many doulas, that journey is determined by the patient, or client, and their family. As end-of-life care providers, we are simply guides. Our job is to help families and clients navigate their path through the death process in a way that is designed uniquely for and by them. Legacy work is an important step in many clients’ journeys.
A legacy project is a project or process that helps clients honor the lives they have lived as they approach death. Legacy work is an opportunity for clients to begin a review of their lives and calls in the participation of family and other loved ones. In a life review, death doulas work with their clients as they reflect on memories, achievements, and regrets. Clients often identify the experiences and individuals that matter most to them, and their death doula helps them determine a form through which they can preserve these special memories. Doulas may also use life review to help clients work through unanswered questions and find peace before they face the end of life.
Following life review, legacy projects emerge in many forms, including memory or photo albums, or recorded stories in paper, audio, or video journals. Some clients leave a handprint in plaster, while others want to create a blanket from their favorite clothing garments. Others still might write their own memorial service to alleviate a potential burden on loved ones after their death. Finally, legacy work can also be an opportunity for clients simply to make peace with their own journey.
Susan V. Bosak from The Legacy Project explains the impact it can have:
The giving and receiving of legacies can evoke, all at once, the entire spectrum of basic human emotions: hope, longing, regret, anxiety, fear, dread, jealousy, bitterness, rage, a sense of failure, a sense of accomplishment, pride, contentment, joy, gratitude, humility, love. When you start thinking about legacies, no matter what your age or state of health, you take stock – of your possessions, and also of your accomplishments and disappointments. You take stock of what you’ve learned from what you’ve done in the past, what you’re doing now, and what you still hope to do. With varying levels of awareness, individuals also inevitably reflect on the people, work, ideas, commitments, and social institutions that have given their lives shape and meaning.
What does a legacy project look like?
A legacy project is meant to reflect the life of the client and can consist of anything that meets the client’s needs. The project is limited only by the vision of the client and the availability of resources. As a death doula, our job is to help “map” out the project and gather needed materials like cameras, journals, photos, family members and friends and, yes, even crafting supplies.
Sometimes clients have an idea of what they want their legacy project to be, but often legacy work feels like a daunting task to take on, and clients need help getting started. This is one of the many reasons that it is important for end-of-life doulas to get to know their clients. It is difficult to guide someone if we don’t know what direction they want to go.
For instance, a teacher may be interested in leaving behind a scholarship or donating money or books to a library. In this case, helping the client might look like helping to organize a fundraiser or put them in contact with people who can.
Another client may love gardening; their death doula could help establish a memorial garden or arrange to donate a memorial bench to their favorite park. Other ideas that have proven successful in the past are making stuffed animals from a client’s loved one’s favorite clothing, helping the client write letters to their loved ones, or journaling about the lessons they have learned while traveling through life.
The possibilities are endless and always meaningful.
How do death doulas integrate legacy projects into other types of care at the end of life?
Assisting clients and families in creating a legacy project is a great way to further understand clients’ wishes and needs.
Death doulas can assist with bereavement by helping work through fears and concerns about the final days. Because the doula has created a special bond with the family, they have unique insight into how the family functions, as a unit and as individuals, allowing them to offer the appropriate support when needed. While this is also something that members of the hospice care team can do—such as social workers, chaplains, and bereavement professionals—the doula is not limited by Medicare regulations and is therefore able to spend more time with the family. End-of-life doulas serve as great coordinators between families and hospice providers, as doulas can fill in the gaps for the hospice team and together, the patient and family are able to receive optimal care at the end of life.
Are death doulas trained to lead clients through legacy work?
Death doulas often receive specialized training to work with clients at the end of life. Many doulas earn a certification requiring testing, an internship, or a practicum depending prior to working with clients.
Unfortunately, there is currently no regulatory board to monitor training, but there are many qualified schools, online and in person, as well as reputable doula organizations and coalitions to help guide clients to recommended doulas in their area.
The International End of Life Doula Association (INDELDA) is just one of these associations; they make it their mission to train compassionate doulas who are qualified to provide end-of-life care. INELDA offers the following training courses to help prepare doulas for legacy work: Early Grief Work, Reprocessing the Journey, Guided Imagery, Meaning and Legacy Work, and Active Listening. View the full INELDA training library on their website for more information.
End-of-life doulas leave a lasting impact on clients and their families. Serving as a guide through an individual’s final journey is an incredible honor and one that should not be taken lightly. This honor also comes with a responsibility for all death doulas to reach out to everyone and anyone who will listen. By educating ourselves and others, we can open the eyes of the world around us and expose more people to the beautiful gift of allowing patients to “map out” their final journey and live life to the fullest until their final breath.
