Changing the Narrative of Pediatric Death and Dying

Photo: Toula Saratsis and her daughter Angelica.

The story of a bereaved parent serving as an End-of-Life Doula and Home Funeral Guide.

The following is an excerpt from an article by Toula Saratsis featured in the 60th issue of the Pediatric E-Journal, a quarterly publication compiled by the NHPCO Pediatric Advisory Council. The theme of this issue is “Care Throughout the Dying Process.” Read the complete Pediatric E-Journal and access other resources at nhpco.org/pediatrics.

Pathima, mathima
Old Greek saying that we are supposed to learn from what happens to us.

Witnessing my daughter Angelica’s final rite of passage reframed the experience of death and dying into a beautiful ritual of love and honor. The preparation for that moment made it possible for the acceptance of its reality to unfold peacefully. We surrounded her with the support she needed for the natural labor of dying. Cheering her on until the last breath at nearly 7 years old was a continuation of tapping into an intuitive energy. Thus, empowering my child to live fully with purpose since her first metabolic crisis at 3 days old. This is when my journey as an End-of-Life Doula (EOLD) began.

Angelica’s life-limiting condition required the child-rearing responsibility of guidance to cross the threshold without fear. This pragmatic perspective recognized that my child needed to feel safe and understood. A holistic approach to nurturing her well-being powered our family through carrying the burden of anticipatory grief. There was an ever-present fear that today may be the last time we embrace her. I learned that control is what we make of it. Dignity and resilience provided the foundation for forging ahead into the path of unknowns towards a certain ending.

Children experience life with a wisdom that they may not be able to articulate. That is when holding space without judgement allows them to process and share how they feel and what they need in their own timing. Listening to what my child wanted did not always resonate with what I had hoped for. Caregiving is a sacrifice to personal thoughts of what should be.

Reflecting on the proving grounds of following my own child’s wishes gave incredible insight into the delicate balance of diplomacy. Angelica rejected the idea of returning to invasive procedures after a harrowing final round of medical treatments. Subsequent doubt and confusion that caused my own intuition to waver came from outside pressure to consider saving her. I explained to her the choices and possible outcomes. She understood quality of life and the implications of each scenario. The concise response of my primarily nonverbal child obligated me to honor the final phase. Her clear “NO” and knit eyebrows signaled the invitation of hospice care. Curative care was no longer an option for Angelica.

Angelica appeared well and continued daily activities with resilience in those final months. Changes appeared slowly at first, which frustrated her, prompting anger. A shift in parenting happened when I had to witness my child’s decline. She was dying and wanted companionship through new feelings. The distinct memory of sitting quietly beside her after a tantrum compelled me to instinctively hold space. Her anger subsided and she looked at me with such sadness. We sat together in silence with my arm around her. Then I spoke to her in Greek which she preferred for moments like this. “Ela mou, Mommy knows you are sad because you don’t feel good. You will not get better. I am sorry agape mou. Mommy will help.” This exchange was a pivotal experience as she approached the time of transition.

Parents need the same validation of acknowledgment for what is normal for them. They follow a similar route knowing that it will continue without the physical presence of their beloved child. The EOLD serves as a participant observer that provides non-medical and non-judgmental support for families to help them control their own narrative. Being present for what is most important to them involves coaching for what is to come. The EOLD advocates on behalf of their wishes and needs when strength is depleted or the focus elsewhere.

Becoming an end-of-life practitioner seamlessly blended into surviving as a bereaved parent. There was an undeniable force that gravitated me to this calling. The doula model of care encompasses the essence of palliative care to rely on intuition, poise, and empathy. Our role is to empower families by being proactive, creative, and solution oriented. Facilitating difficult conversations confronts the complexity of relationships and situations to connect with what is best for the child. An EOLD works together with other professionals by sharing our observations and expertise, bringing something different to the table.

[…]

I strongly feel my daughter’s spirit in this work. Repurposing lessons learned from caring for her influences how I speak my truth and inspire others to find their own voice. As End-of-Life Doulas, it is our professional purpose to network, form partnerships, and collaborate with mainstream systems to complement existing services in the palliative and death care continuums. Advocacy parallels activism to validate and normalize the needs of the dying and their loved ones. A great love and respect for my child loss tribe and other dedicated end-of-life professionals is a beautiful relationship of reciprocity that naturally contributes to a positive approach to death, dying, and bereavement. Our collective motivation to seek understanding for achieving a meaningful final rite of passage is the process for a narrative of change.

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Download the 60th issue of NHPCO’s Pediatric E-Journal,