THE HAIRBRUSH | Heather Isaacs
I was finishing my charting for the day when my team manager called about a patient with uncontrolled symptoms. None of the routine comfort medications seemed to be having any effect. Rather, over the past few days his condition had deteriorated into a state of terminal agitation that was worsening even as his meds were being titrated up. The patient, who was also a combat veteran, had destroyed property in his own home the previous night while hallucinating a re-enactment of his wartime experience decades before. The concerns about safety in the home for both the patient and his spouse were rapidly mounting. As a result, the hospice team had proposed an immediate two-part response: The doctor would prescribe phenobarbital, a powerful sedative, while a chaplain would also visit to assess for any psycho-spiritual causes to the patient’s terminal agitation.
Because the patient had initially declined chaplain visits, I had not yet met him in the week or two he had been on our hospice services. However, by the time I was re-introduced as an option, his family was frantic, exhausted and open to trying anything—including bringing in a chaplain. Could I go? my manager asked. I was already approved for overtime, she said. I agreed to go although the expectation for my visit already seemed far outside my capacity to meet. The phenobarbital had already been ordered and was due to arrive not long after I did. I did not want to be set up as some kind of miracle worker, but I was grateful, too, that the spiritual component of this man’s suffering was being considered.
I had been a hospice chaplain long enough to know there are types of suffering in the dying process that resist palliation despite a hospice team’s best medical and spiritual technologies. From what I have witnessed, this kind of untouchable pain is mercifully the less common, if not absolutely rare, occurrence in the phenomenon of terminal agitation. But the vicarious trauma of witnessing even one person endure the seemingly untreatable suffering that I am describing can leave a terrible imprint on the psyche of any caregiver and can still be felt for months and years afterwards.
On that particular day, I was still haunted and distressed by the death of another patient a couple of weeks earlier who had died inside one of the most intractable bouts of terminal agitation I had ever witnessed. I felt like a failure as a chaplain after having worked intensively with her for eight months, only to watch her enter a state of pure panic at the end of her life then stay there. I made daily visits with the nurses who were making multiple visits a day. Yet, despite all this care, she remained locked in a state of anguish and fear; she could not apparently see, feel or hear us as she battled invisible terrors alone. We spent hours at her bedside trying every medication and meditation available to help her find some measure of comfort and peace. It was one of the few times in my career when I emptied everything available to me in my own toolkit and saw everyone around me do the same. Then, empty-handed, we all stared into the bottom of an abyss we did not understand and watched as someone we cared for fall into it.
Still saturated in the trauma residue of this last case, I took a longer beat to walk up the driveway when I arrived at the home of my new patient. I wanted to be present to whatever was needed in this moment, not as a reaction to the past.
As a non-medical hospice worker, I had come to associate phenobarbital as a medication utilized to treat terminal agitation during the very last days or hours of a person’s life. So, when I entered the home, I was expecting to meet a man who was actively dying. Instead, he was conscious and ambulatory, pacing back and forth across his room from the bed to the bathroom, a repetitive urge to urinate pushing him out of bed to the bathroom over and again even as he became utterly wearied from the effort.
The patient appeared oblivious to my presence when I introduced myself. I sat with his wife for a time to build some rapport while, down the hallway, two of our hospice nurses worked out a shift change for continuous care and discussed the addition of phenobarbital to the medication list. I began to doubt whether I would be able to offer any support to the patient directly as it seemed clear his urinary urgency was the most pressing symptom. But then, on his third or fourth trip to the bathroom, he just stayed there. Everything got quiet and still from inside the bathroom. It did not sound like he was using the toilet to relieve himself, only to sit on it like a chair. I could not see any sign of him until, through the crack in the open door, a hairbrush appeared like an extender of his hand. From where he was sitting, he reached across the gap to flip the light switch off with it. The bathroom went dark.
I don’t remember exactly when I consulted with his hospice nurse. But seeing the patient reach with the hairbrush to turn off the light raised new questions for me: What was he reaching for by reaching for the darkness? Was it for privacy? Rest? Something else? Stepping into the kitchen, I asked the nurse about having a bit more time with the patient before beginning the phenobarbital as ordered. We were new colleagues and, in that moment, she looked at me like I might be her number one barrier to helping this man get the help he needed. Admittedly, in all my years of hospice work, I could not remember a time when I had directly questioned a medication order in real time. All I had to offer when I called the medical director to make the request was an intuition based on what I saw unfolding in the bathroom with the hairbrush.
With more time granted, I returned to the patient’s bedroom, crouched down next to the bathroom door and re-introduced myself through an open space of no more than six inches. We could not see each other, but we could talk.
I established he had known chaplains while he was in the service although he was not religious himself. Then he said, “I’ve been expecting you.” The likeliest meaning to this phrase is that his family told him the chaplain was coming. But the way he said it felt mysterious and filled with meaning.
“Do you know what is happening?” I asked.
“I’m dying,” he said.
“Yes, that’s why I’m here and why the nurses are here. We want to help make this a little easier for you and your family.” And I asked him if he had concerns about dying.
“I’m worried about my wife,” he said. They had been together for over fifty years. And now his wife was showing early signs of dementia. Though their children were very supportive and involved in her care, there was no way around the difficult reality that lie ahead for his wife after he died. We talked more about this. He had long served as a protector to his family and before then as a soldier. His reality—that he would no longer be able to protect anyone, much less the person he was most devoted to in this life—was almost unbearable to him now.
Contrary to recent reports, I found him remarkably lucid. The patient seemed to sense this, too. He said, “I don’t know why you’re able to understand me when no one else has.” I told him it was part of my job and that this was why I was here. I acknowledged his fears for his wife and the impossible position he was in.
I offered what I could, saying: “There are times in life where we are pushed to an edge against our will and the only option we have is to trust. Trust that the love you and your wife shared in life will continue to sustain her even after you are gone. Do you trust that?”
He paused then said, “Yes, I do.” He sat in the silence for a few moments longer before adding, “I’m ready to go now.” Another moment later, he began to describe the presence of others with him in the room. He didn’t know who they were. I asked if he trusted “them” too, and he said yes. He didn’t know who they were but he trusted them. Not only was he ready to go, he said, but he was ready to go with them.
Amazingly, he then shared that his wife’s deceased mother was also present and that he could see how she was there to help her daughter through this. Not only could he now trust his love to stay with her but he could also trust that her own mother’s love was with her, too.
And with this declaration, he confirmed once again he was “ready to go.” He asked for his wife and children to be called to his bedside. Not only was he ready, he was ready to go right then and he wanted to say good-bye to all of his loved ones at the same time. He got up from the toilet, walked back to his bed, and lay down. Given the surreal intensity and speed with which everything was happening, I wondered whether he would actually die that night. Instead, after his children arrived to the home and he said all of his good-byes to them, he simply rested through the night without needing any additional medications.
He didn’t die that night or the next. He lived for another two weeks during which time he continued to do the hard work of letting go. At times, he entered into similar periods of agitation, sometimes re-living his wartime experience as the mental containers that once compartmentalized those memories began to loosen and break apart.
What was different though was that he did not get stuck in the same terrible mental storms as before. With education and support, his family and hospice team became better able to understand the way he was trying to release the traumas of his past and to communicate his needs and concerns in the present. The phenobarbital was not needed and the routine comfort meds were enough to keep him comfortable. Those two weeks were not easy for any of them but the time they shared was also full of loving and meaningful exchanges in which the patient was more consciously able to participate as he prepared with his loved ones for the most difficult task of his life.
He did not appear to need anything more from me after that first encounter. What had been true for him before we met remained true afterwards: he was not a person inclined to lean on a chaplain for support. As a result, in those last days my attention turned towards supporting his wife and family. Nevertheless, I believe what he said to me that night, as I awkwardly crouched by his bathroom door, is true: I was the first person in days who had been able to understand what he’d been trying to say. This ability was a skill cultivated over years spent in liminal spaces with others traversing the distance between life and death, some of whom were caught in the limbo of terminal agitation for reasons that often seemed connected to trauma histories. I had learned to listen for the strange communications at the end of life, to believe a hairbrush could mean something more than a hairbrush.
But this is not some kind of exact science. People are not puzzles to be solved or problems to be fixed; rather, across our life spans and regardless of our capacities within them, we remain human beings whose lives are intertwined with meaning and mystery and always deserve witnessing, curiosity, and care. Whatever skill can be cultivated to support others at this threshold between life and death, none of us hold a magic key to another’s healing and peace, a lesson I have also continued to learn, sometimes painfully.
Believing though that meaning remains present regardless of the mystery that holds it—even if it appears as dream-like fragments or remains all together hidden or distorted through the lens of trauma—may be a choice or an act of faith. But it is one for which experience has taught me may be a vital component in supporting others in their dying process, when all other interventions fail, the usual comforts are no longer welcome, and all we are left with in the end is trusting that somehow our presence mattered.
Heather Isaacs has worked as a chaplain for nearly 20 years, primarily in hospice settings. She is a per-diem Chaplain at UCSF Health and Chaplain/Consultant at Mettle Health, which provides telehealth palliative care. Isaacs’ practice of spiritual care is about holding space for people at critical turning points in their lives and supporting them in alignment with their deepest values and beliefs, spiritual and/or religious traditions or personally-defined worldviews. In addition to writing at heatherisaacs.com, she is part of an improv comedy group and also imagines ways of narrating stories through puppetry and song. She makes her home in the San Joaquin Valley with her partner and his children not far from where she grew up.