How I Began My End-of-Life Doula Journey

By Lindsey Warren of Journey With Compassion

One of my first teachers.

I am Lindsey Warren, an end-of-life doula with specialities in complementary holistic modalities including Reiki and music.  I am also a community educator for natural and home burial as well as a Wayfinder™ supporting those wishing to use Vermont’s Act 39 Medical Aid In Dying as an end of life option. I provide logistical, emotional and in-person support from the planning phase, through the eligibility process as well as support on Dignity Day.  I have a Masters Degree in Music and came to death doula work first via bedside music for the dying and then chose to pursue certification through University of Vermont Larner College of Medicine End-of-Life Doula training program.  I live in Coventry, Vermont and I support people in person and virtually through my business, called Journey With Compassion. Here is the story of my journey:

One of the first questions people often ask me is “What led you to become a death doula?”  There are many paths that have brought me into the realm of compassionate care for those at the end of life. It didn’t start the moment I began my training with the University of Vermont’s End of Life Doula program.  Seeds were planted early in my youth: I have pre-school memories of helping my mother deliver meals on wheels. I can remember the comforting smell of the food wafting around as I fell asleep in my car seat, and then waking up and visiting with lots of nice people that weren’t my grandparents, but still happy to see me. From this experience, I learned the joy of spending time with elders in my community.  I also have early memories as a 5-year old of saying goodbye to my Papaw beside his open casket. My mother leaned over him and kissed his cheek and whispered goodbyes. This taught me that death is a part of the cycle of life and that grief is a part of love. 

In my teen years I would play piano and sing at assisted living facilities, or go to nursing home visits with my church Sunday school class. This helped me normalize what it is like to be in a care facility.  Later, I helped care for many family members recovering from surgery or navigating dementia and Alzheimer's. This gave me a closer look at the challenges and struggles of aging and my understanding and compassion grew.  I saw how music was an immense force for good, alleviating sadness, loneliness, and providing comfort and happiness.  

When in college, I have beautiful memories of holding hands with my mother and singing over my Granny as she was in the stages of active dying. It was a gift to be able to say goodbye. And it was a gift to learn how to let someone know that it is ok to let go and die.  This experience taught me that death is a special, sacred time, albeit difficult.  And it helped remove some of the fear around death that we all experience.  I wish I had known then what I know now as a death doula.  I would have stayed longer and known other ways that I could have tended to my family and offered comfort at the end. Another important connection for me at this time was learning what hospice is and seeing what a huge help it was for my whole family. I will always hold hospice workers in highest regard and with deepest appreciation.

I majored in music in college but also encountered Buddhism through classes at the university and later in the community. Bringing mindfulness and meditation into my life was an important part of learning self-care, and little did I know that I would be able to offer these skills to people to help manage anxiety and pain at the end of life. While in graduate school I experienced the loss of another grandparent. My experience in Buddhism helped to anchor me with the understanding that suffering and loss is inevitable and everything is impermanent. My upbringing in Christianity also shaped my understanding of compassion. Later I explored spirituality through many other traditions and training programs and my broad background helps me to welcome and honor clients from all traditions.

 In my young-adult years I experienced death in many ways, shapes and forms. The deaths of other family members and close mentors, unexpected losses of friends from accidents and suicide, as well as the death of relationships, health, career and identity.

 All of these were formative moments that allowed me to have a relationship with loss and death.   After choral conducting and teaching voice and piano lessons for 25 years, I began taking stock of what had felt meaningful in my life. I realized that the times I had been called to make music bedside felt deeply meaningful. I also recognized that I had a level of ease and comfort to these situations due to my background. I wasn’t sure at that point what a death doula was, but I simply formed a plan to figure out how to bring more bedside music to the world. I was deeply impacted by a book by a Vermont author Islene Runningdeer called “The Musician Healer.” It helped me see that the moments I have been offering bedside music to the dying were important not only to me personally, the family that was gathered, but to the fabric of society. The world needs more compassionate holistic care as we all journey towards a sacred time of transition. We can be held by many compassionate modalities on our healing journey towards death. 

I knew I wanted to expand my skills and add more tools to my tool box. So to learn how to better care for myself and others, I enrolled in Reiki training with Dawn Hancy of Essential Arts VT, shamanic practitioner studies and then the UVM end of life doula certification program.

At this point, you may be thinking “well, you have mentioned death doula multiple times but have not yet explained what it is.” Here’s your textbook definition from the National End-of-life Doula Alliance: A death doula, aka end-of-life doula, is someone trained to provide non-medical, holistic support to individuals and families during life’s final transition. From diagnosis through active dying and beyond, doulas offer comfort measures, advocacy, and guidance to help create a meaningful and peaceful end-of-life experience. Working within established ethical standards, doulas focus on compassionate care that honors the dying person’s wishes and supports their loved ones through this important journey.

Today, I wear many hats as a doula.  I facilitate conversations about life and death, including home burial and vigil planning, preparation help with items on an end-of-life preparation checklist.  I am an open ear for processing the complex emotions that arise during the end of life.  I can guide people through life review sessions to help grapple with the meaning of one’s life.  I aid people in legacy work such as preparing letters to give to loved ones or assembling a scrap book or gifts.  Sometimes I simply sit and hold someone’s hand in silence, or listen to hopes and wishes, or read comforting poetry and books. And sometimes i am offering respite and sitting vigil, offering comfort care with those that are at the threshold. 

I offer a holistic approach to the end of life, death and grief with care of body, mind, and spirit through complementary modalities that I mentioned earlier: Reiki, sound healing, music and aromatherapy and other herbal supports help clients manage anxiety and pain and bring comfort. With the aid of tuning forks, and my frame drum, I can guide someone on a meditative journey to process angst, and when in the active dying stage my instruments and singing voice help to calm agitation and breathing patterns through a scientific principle called entrainment.

As a community educator I hold workshops and in-home training on topics such as natural burial, Dying 101, Bedside care for the dying at home, Resources, support and end of life choices such as Medical Aid in Dying, self-care and compassion. My role as a Wayfinder leans on my doula skills, but is an additional hat that I wear. I am trained by both Patient Choices Vermont and Academy of Aid in Dying to help people navigate complex logistics and emotions as they pursue choosing to exit peacefully with dignity at a time of their choosing under VT’s Act 39 law.  Regardless of what hat I am wearing I am passionate about helping people understand the range of choices they have in end–of-life and empowering them to have a well supported death on their terms.

Sometimes I see examples of how we, in our society, can easily turn away from the harsh realities of aging, and death until it sneaks up on us. Our world is full of distractions from technology, and many families are dispersed and no longer living intergenerationally. Often we miss the exposure and the opportunity to really contemplate death and what it means to us emotionally, spiritually and even understanding what it means physically. 

My parting thoughts are to encourage you to turn towards these realities. I commend you for showing up and considering these topics. Continue to learn about the process ahead. Attend death cafes and have conversations with friends and family to de-stigmatize the topic. Take time to consider your values and wishes. How do you want to be cared for? What are your priorities and what are your limits? What do you value? And after you consider these things, I encourage you to document your wishes in Advance Directives.  When you can get the preparation out of the way, you gift a roadmap to your loved ones, and then you are freed up to truly live fully and die peacefully.  My hope for you is that you will feel well supported as you approach this inevitable time of life and that you will journey with compassion and peace.