A Shared Vision for a Positive End of Life Experience

 Blog published by NFDA.org

Written by Marggie Hatala, RN, CEOLD


I opened my emails as I began my day. I noticed an unfamiliar email address, and quickly scanned it to find a community member reaching out, looking for guidance about how to navigate the difficult waters of her mother’s terminal disease. Not asking for medical advice; rather seeking emotional support, how to talk to her mother, how to find a peaceful way forward with conflicting opinions from her adult siblings. I felt her pain, I’ve been there personally and have since made this work my own mission. As a Life Doula, I’ve transformed my passion for working with those at the end of their physical life as a hospice nurse into my greatest joy, holding space for people and helping to guide them through this very difficult time.

The word doula means someone that offers non-medical, holistic support in body, mind, emotion, and spirit. Most often used in conjunction with pregnancy and birthing a spirit into our world, doula has also become synonymous with support through serious, terminal disease and end of life as the spirit prepares to journey from this world. My work also specializes long before these medical events occur and includes aging, decline, and those with chronic conditions. I prefer to support people as they begin to grasp their mortality, as their bodies cue them that their lives are changing with limitations, that their function most likely will continue to decline. My background as an RN allows me extensive knowledge and comfort with these issues, yet my role as a doula is to use this awareness to merely guide, to help the client and their loved ones to acknowledge the reality of the situation, and to help encourage the very deep spiritual questions that reside silently in our hearts. For more information about the End of Life Doula Profession, visit https://www.nedalliance.org/

I pressed the reply button and offered some words of compassion and understanding to this woman. Aware that she is facing anticipatory grief, and most likely her siblings as well, I understood that each person goes into their own emotional silo during this intense time. Coming from a very large family that spans almost 20 year age difference with my own siblings, I felt complete empathy. I shared how my own family arranged ongoing discussions, and how we agreed to handle immediate and long-term care decisions for each of my parents. During that time, I realized for the first time how our ages effected our perspective and appreciated my brothers and sisters for where each of us was. I can say that we learned a lot about respect for one another and how to work as a team as my mother entered hospice care and through her death. Later, we handled my father’s decline and death like a true team, realizing that my family shines our best during these times.

My email went on to encourage a phone call between us, there is nothing like a conversation that allows me to offer information and support to potential clients. More importantly it’s what is said between the lines that allows me to ask open-ended questions, to pull out the person’s deeper questions and emotions. This woman did choose to work with me individually during her mother’s hospice journey, rather than bringing the entire family on board. Our current admission to hospice is very often too short for a doula to really get involved with the entire family, yet by meeting virtually with this woman I established a support system for her, a sounding board for all she was going through, for her powerful emotions as she faced her mother’s final hours, and as her own mortality became apparent as well. We met several times in the final week before her mother’s passing and continued our conversations through the next two months beyond.

A few of the things that I was able to guide her towards as her mother entered her active dying stage was to reach out to the funeral director of their choice, to finalize the plans for her mother’s celebration of life. I also helped her to guide her family to share their memories, to gather mementos for the celebration of life, to write an obituary and to create eulogies. Time was short so these were not completed before her mother passed, yet the process of healing between the siblings was well in place. By remembering their mother, they found common ground. Their love and laughter replaced tension about medical decisions. Their mother’s last day found them all surrounding her hospital bed in the home they had grown up in. Their memories shared, long forgotten family stories caused tears and laughter. These later formed the written words needed for her legacy and were shared with the funeral director so that the memorial could be prepared with true loving testament for their mother.

This living “wake” is one of the most special times within a family, and I am always heartened when families are able to spend these final hours in the presence of their loved ones in this way. Our current Covid-19 restrictions cause my heart to hurt because the beauty of these moments rarely happen. Creative ways to replace it virtually often become the only route for this cherished ritual that allows a welcome substitute.

My work as a Life Doula always includes the entire intimate circle of my client. Often the client is the ill person, but also by just walking with one of these siblings, the entire family benefitted and certainly their dying mother was ushered into the next phase of life peacefully and surrounded by the love of her family. My work is deeply spiritual, supporting the spirit of the client which is all about drawing out her deepest needs. In this case it was to find a path within a large family, and to find peace within her own self as her mother passed. During the bereavement period I used my experience with grief support to guide her towards resolution of many memories, her fears that she hadn’t done enough for her mother, and similar things. I use reflective writing often to help my clients to journal privately in complete safety to express their most honest feelings and thoughts. We all have many socially unacceptable things that we need to express, and writing allows these to leave our hearts and never be shared with others unless we choose to do that.

In a recent blog posted on www.funeralone.com, I found tangible ways for the funeral industry and the doula profession to coordinate their expertise. As we transform our individual focus from our own services to serving our clients holistically, sharing referrals and service to the same client changes the vision for each profession. Here is a brief quote from that blog:

Applying this at your funeral firm: Offer up a small and meaningful closing ritual service of sorts with your families a month after the death to extend your level of service and help them on their journey of grief. You can do this with an EOL Doula on staff, a celebrant, grief counselor or one of your fellow funeral directors. 

Many Doulas have become referral partners with estate planning attorneys and funeral directors. In our time of offering enriched support for our individual clients, working as a team with our own specialized professional expertise truly offers holistic support. Our clients’ needs are met with our own professional guidance and referred to the others on our team for their own specialized expertise. This is my passion and heartfelt mission: to help each person to have the best final chapter of their lives. With professional guidance and planning in every way, they are supported as their aging spurs their decline, as their chronic condition requires more management, and certainly as their end of life walk carries them into hospice care and death.

Imagine these teams formally in place. No longer segmented in competitive silos. Our world has truly been transformed in the past year and I hope that we can reach out, form referral partnerships, with our client’s total needs as our guide. My work can be done virtually as well as in person. This allows me to be available beyond my geographic area. I look forward to these partnerships and working together seamlessly for our shared clients.


For more information about my work as a Life Doula and/or Nurse Advocate with Ikor Life Care Management, visit https://ikormidwest.com/