Communication Beyond the Living: Incorporating Signs that Death Is Approaching

Just shy of my 24th birthday I began my first full-time job as a hospice social worker. During my graduate degree program I worked in a variety of hospital systems and prior to that worked with at-risk youth in a transitional shelter. When I was encouraged by a supervisor to pursue hospice as a career path based on my desire to connect with my patients and families on a more meaningful level, I wondered, “What do I know about working with people who are dying?” Looking back I can tell you that, at least initially, I knew very little. My new colleagues were wonderful teachers, but I learned the most from the patients and families I worked with. Margaret, one of the first patients I followed from hospice admission to death, is one of my most treasured teachers.

Margaret (name and some details changed for confidentiality purposes) had Alzheimer's and lived in an assisted living facility specialized for dementia care. She was 78. Margaret was fairly active, and every time I visited her she was wandering about the hallways. Margaret was a wonderful storyteller, and my time with her was often filled with stories from her childhood, warm smiles, and holding her hands. Her spirit was soft and I felt my life was enriched in caring for her. One day I arrived at the facility and walked through the hallways to try and find her as I usually did. She was almost never found in her room, let alone lying in her bed. Yet on that day that is where I found her. After talking with the nurses, they described to me a sharp decline in the past 24 hours, and Margaret was now in bed, wearing oxygen, and eating and drinking very little.

Initially during that visit I fretted over Margaret in her bed. “Would you like a sip of water?” I asked, holding a cup to her lips. “No, Ms. Margaret, you need to wear your oxygen,” I said as I gingerly helped hook the oxygen tubes behind her ears and the nasal cannula back into her nose. She was not happy with me. Finally, after maybe the third time assisting her with putting her oxygen back on, Margaret turned to me looking right into my eyes, “They said, No More.” I froze in my tracks. ‘They?’ Who was Margaret talking about? In preparation for this job I had read stories about the phenomenon that people who are dying may see and talk with loved ones who had died before them, yet I was still caught off guard for the lesson Margaret needed me to learn that day. “Okay Margaret,” I said to her as I settled into a chair by her bed, resolved to simply ‘be present.’

Sitting next to Margaret's bed, I watched her interact with others in the room, others that only she could see. Her oxygen tubes now lay off to the side of the bed, and I watched her turn her head towards various places around the room, just as someone might if they were surrounded by loved ones talking around them. I often wish I had kept my notes from my visit that day, jotting down her comments, along with names and places and past events from her life. It seemed she was reminiscing and so happy to be talking with people she had not seen in a long time. Though ‘present’ for her interactions, it was like I was not there at all, or rather that it was she who was nearly somewhere else.

About 20 minutes later Margaret's daughter arrived in her room. We talked about the changes that had occurred in the past 24 hours, and Margaret's daughter immediately assisted her in reattaching the oxygen tubes and nasal cannula. She held the cup of water to Margaret's lips, just as I had, yet Margaret was less resistant and took the requested sips. Margaret was no longer lost to those surrounding her bedside, but present again, there, with her daughter. The words to adequately describe the change in Margaret's presence failed me then and now, but it was almost as though her daughter's arrival brought Margaret back into the room. Not knowing quite how to share my observations with Margaret's daughter, instead I told her about the names and places her mom had mentioned. Her daughter smiled and told me who each of the names belonged to, beloved family members who had died long before. Her daughter likely thought Margaret was talking about them, much as she had talked about other things in my prior visits, vividly recalling events from her childhood. Yet, this was very different from that, but I lacked the confidence and skill in describing how or why during that moment.

Within 48 hours Margaret was dead, permanently joining whatever it is that awaited her after her death. Afterwards, I wondered what I might have done differently in order to talk more frankly with her daughter about what I had observed. Could she have found meaning or comfort in it? What was my role as the social worker to perhaps educate her about this common end-of-life phenomenon and what it might tell us about Margaret's approaching death? Another equally important lesson I learned as a young hospice social worker was that there is no way to predict the exact timing of someone's death, regardless of all the signs that may accompany the process. However, there is often comfort found in understanding and observing the process in preparation for when death does occur. Margaret helped me find my words in talking about something I had never experienced before. And while I wish I'd found those words a bit sooner, in order to share them with Margaret's daughter, I am grateful to her for the patients and families I served after her, allowing them insight into the communication that occurred beyond the living, and how sometimes it takes simply being present in order to provide the most comfort.