By Jeri Glatter January 11, 2017
One of the cornerstones of the work of an end of life doula is opening the door to deeper communication. Often a dying person feels the need to protect their loved ones emotionally by choosing to keep their fears, concerns or worries to themselves. Through this silence they hope to spare their loved ones increased sadness or discomfort. The result can be that the dying person feels very alone as they make the journey through the end stage of their illness. Doulas have a unique opportunity to allow a dying person to share their innermost thoughts and feelings because they don’t have a previous emotional history. Still, opening the door requires active listening coupled with skillful inquiry.
Recently, during a wonderful journey I shared with a dying woman, I saw again the amazing gift of opening the door. This woman had been diagnosed with cancer two years before our meeting, and both she, and her family, had fought “the good fight.” Courageously they had opposed what they saw as their foe with all of what the medical community has to offer. Together they had fiercely embraced the concept of being a survivor of this disease and fought hard to secure that outcome. But finally they realized that goal was out of reach and called on hospice to help bring greater comfort. That is when I was privileged to meet this family.
During my second visit I had the opportunity to ask the family if they had discussed dying with their loved one. With wide-eyes they responded that they had never brought up the word, or the possibility of death. Although they were a close family that talked openly about most things, they had become soldiers in the battle against illness two years earlier and adopted a militant refusal to mention the word “death”—it would have meant allowing the possibility of defeat. Now they found themselves at this new juncture and didn’t know how to begin a conversation about dying.
As doulas, we know that without opening the door to talk about dying many other things go unspoken: words of love, forgiveness, or gratitude. My end of life doula training has also taught me that the willingness to meet people in their vulnerability, and to walk alongside them as they travel the path toward death, are keys to some of the profound places the dying can journey. Often, greater understanding is uncovered while this new terrain is examined. This process can deliver the dying person to acceptance, comfort, peace, emotional and spiritual healing, and ease.
As my second visit with this dying woman and her family continued I found the opportunity to ask the woman: “What do you think is going on around you and with you?” After all, her world had suddenly changed, she was sitting in a bed that had been placed in the middle of her living room. New people were attending to her, all kinds of medical supplies had been delivered to her home, and now I was there, another new face in this unfamiliar circumstance that she found herself. I loved her quiet assessment, as she looked around the room and summoned the courage to say the words: “Well, I have cancer. Did you hear that I have cancer?” I told her: “… Yes, I know you have cancer.” As my honest confirmation about her illness settled in the room, I asked her a second question: “What do you think that means?” Once again she took her time before she answered: “Well, I guess it means I am going to die.” She paused and I waited to see if she had more to say. Then she added: “Have you heard that I am going to die?” I let her question hang in the air for a moment. Then I answered: “Yes, I have heard that you are going to die.” Behind me I heard the sounds of soft tears falling on the faces of her loved ones as I asked: “What do you think happens when you die?” She exhaled a long breath and ended the exhalation by pointing a single finger upward, and answering: “Up there, I will go up there.” My final question during this part of the conversation was: “And what is up there?” Her face became light-filled with a magnificent and joyful smile as she said: “I will be with my mom and dad.” Those were the words that brought the family physically closer, as they lovingly came and sat beside her, reaching for her hands, wiping tears away, they said they didn’t know that she thought that she would be with her parents. The door had been opened and the stories, the legacy of her parents, who they had been, the grandparents they had been, and all of the love and joy this family held began rushing through. Laughter followed as they shared memories, and made guesses at what would be said during that first reunion.
Opening the door to deeper communication became the doorway for a beautiful and meaningful process as they walked together courageously and lovingly toward her death. Through the simplicity of asking open-ended questions, and requesting clarification of each answer, the conversation had begun. The love that this family had for one another became the catalyst for continued truthful communication. There would be no more holding back of emotion, no more fear of talking about dying. It was such a joy for me to see once again the magic of opening the door and how much this deepens the experience for everyone. I often review this story to remind myself how important it is to listen well and find the right moment to gently ask a question that might open the door to something very meaningful. I see in this story a reflection of the notes I made from my training, a kind of checklist: speak the truth, never turn away, accept what I hear, and demonstrate the faith that the dying person has the ability to face any struggle. I remain in awe of the richness of the INELDA training, and grateful for these beautiful, fulfilling experiences I have as an end of life doula.