By Nancy Glass
Her voice was loud and insistent: “Michael, get up! GET UP! Open your eyes and GET UP! GET UP NOW, Michael. I COMMAND YOU, in the name of God, GET UP!”
Michael wasn’t going to open his eyes. I knew that. But I’ve gotten ahead of myself: I need to go back to the beginning.
The first time I visited Michael’s home for his initial hospice evaluation, his mother, Leila, told me she had named him after the Archangel Michael in covenant with God—a phrase she repeated many times—in gratitude for learning she would finally bear a son after years of infertility treatment. All these years, she had been proud as he grew into a tall, handsome, muscular young man. She was proud of his academic record, his athletic abilities, his deep faith, and his kindness to other students. Then two years ago, his illness began suddenly with unrelenting headaches, followed by nausea and vomiting, and then finally, trouble with his balance. Their trip to the emergency room one evening resulted in Michael being diagnosed with a large brain tumor, soon followed by two major surgeries, aggressive chemotherapy, and radiation treatments. Michael had faced his diagnosis with courage and had accepted the therapies without complaining. He had gone back to school, but he couldn’t play football anymore. Still, all in all, he did “well” for several months.
But just the week before, after Michael underwent a repeat MRI scan for worsening vision, the oncologist told Leila and Michael the tumor was growing, and that there were no further curative treatments to offer. His oncologist told me that Leila listened patiently, then told the doctor she remained convinced God would save her son, and that Michael’s recovery would glorify God, showing everyone God’s power and grace. For this reason, she had been reluctant to accept the hospice team into her home, since Michael “wasn’t dying.” She accepted the referral, though, hoping the weekly nurse visits would reduce the frequency of their trips to the medical center. Before I could even go into his room, Leila insisted on telling me — with pressured, staccato speech — about Michael’s Most Valuable Player trophy in his role as a defensive tackle for his high school football team, about how strong he was, about his deep faith and his conviction that he would soon be healed. She told me she wouldn’t let anyone come into the house if they were not Christian and couldn’t share her faith in his healing. I was raised in a traditional Protestant home, and I certainly wished for Michael’s recovery, even wished that faith could be a powerful enough factor, but I knew this cancer was a bad actor. I mumbled something affirmative in response, then bit my lip.
As I entered his room, I saw a large adolescent boy slumped down into his wheelchair, facing my direction with unseeing eyes. Michael was now completely blind from tumor recurrence, and his legs were paralyzed from tumor metastasis to his spinal cord. This much I already knew from reading his hospital chart. I knew he had metastases in his lungs now too, and I could already see from the doorway that he was working hard to breathe. Leila stood protectively beside Michael. After I introduced myself, I began my assessment.
“Michael, are you feeling short of breath?”
“No, ma’am; I’m okay.”
His lung sounds were wet and wheezy, and his respiratory rate of thirty breaths a minute did not sound like “I’m okay” to me. I had the impression he was answering what he knew his mother wanted to hear. Soon after this exchange, Leila went to the kitchen to prepare a kale smoothie with vitamins for Michael, every teen’s dream snack. As soon as she was out of earshot, Michael asked me softly, “How much longer is this going to drag on?” Then, without waiting for an answer: “Why is God punishing me? I’ve been praying every day, but nothing’s changing. What could I have done that was so bad?” I was just telling him that nothing he did caused his cancer when Leila returned with the kale smoothie, chatting about Michael’s great appetite, how the smoothies were shrinking his cancer, and how he needed to get back to the gym to prepare for football season. I looked at her with raised eyebrows, looked at Michael, and back to Mom. “Wow”, I thought to myself, “This is going to be really hard”. Michael slumped lower in his wheelchair, withdrawing from the conversation. I concluded my exam and asked a few more questions, concerned that Michael’s respiratory distress was likely to worsen quickly; then I reviewed the use of the morphine we’d ordered for his breathlessness with Leila before I left. I felt sad and frustrated that I hadn’t been able to establish a workable connection with Leila and worried that Michael was going to suffer an unnecessarily difficult death.
As I stepped outside the house, his stepfather, returning from work, stopped me. We introduced ourselves; then he immediately spoke of his concern: “Doc, I don’t know what to do. The rest of our family all sees that Michael’s dying, but my wife keeps talking like he’s going to get up and walk.”
“I know,” I said, “I’m worried too. Michael knows what’s happening with his body. I think all we can do right now is support Michael and Leila. We can’t force her to see what she isn’t ready to see. In the meantime, his nurse will visit at least twice a week and check in with Leila every day or so by phone. Let’s stay in touch, okay?”
Sure enough, within days, we had to transfer Michael to our inpatient unit to manage his breathlessness more aggressively. Leila was exhausted from being up with him almost constantly. I adjusted his medications so he was able to breathe more comfortably, and the nurses kept a close eye on him through the evening, while Leila caught a much-needed nap. At about three o’clock in the morning, Leila pushed the call button, asking Michael’s nurse to come to check him, saying that his breathing had changed.
In fact, Michael was not breathing at all. He was dead. No heart rate, no breathing. When the nurse told Leila he had passed, she became angry: “He is NOT dead. He is ASLEEP!” She began shaking his shoulders, slapping him across his cheeks, and yelling at him.
“Michael, wake up. Open your eyes. Take a deep breath. I know you are sleeping. Wake up. Wake up. God is not ready for you.” She began praying loudly and demanded that the nurse leave the room. Her prayers were shrill, repetitive, insistent, and audible even through the closed door all the way to the nursing station.
“God, I made a covenant with you for Michael’s life. He cannot die. He is not dead. “Wake up, Michael. God has a plan for you. He promised me.”
Twenty minutes later, hearing more voices, the nurse re-entered the room to find a cell phone propped by each of Michael’s ears, as female voices prayed and begged him to wake up. At the same time, Leila climbed up onto the bed and began performing CPR on Michael — I can only imagine that scene — blowing her breath into his mouth and pounding on his chest with futile, jerky motions, all the while praying aloud, demanding that God give Michael back to her.
The charge nurse had already called me to come in to help because they were unable to reach Leila’s husband. After another half hour or so, we were finally able to awaken him and told him that Michael had died. He contacted Leila’s pastor, and the two of them came to the hospice. Our team—the nurse, the social worker, the hospice chaplain, and I— all huddled outside the door, wondering what to do next, while her husband and pastor tried to comfort Leila. It was several hours before they persuaded her to go to the pastor’s home to be with his wife and mother; the pastor promised to stay with Michael’s body until the funeral home arrived. Finally, leaning on her husband and the pastor, Leila allowed herself to be led out of the building.
For many patients and families, religious faith provides hope and comfort during times of uncertainty. In this case, however, it seemed to me that Leila’s powerful faith served as a kind of resistance, keeping her from connecting with Michael and allowing them to find some peace together as he died. She made Michael feel guilty for not praying hard enough, and he internalized the feeling that he had somehow deserved this fate. How lonely he must have felt, not being able to express his deepest feelings as his body changed. It was also sad that Leila refused to let the hospice team have open conversations with him. Was he afraid to die, afraid of God’s wrath? Or was he able to achieve some measure of peace with the idea of meeting his Savior face-to-face? The hardest part for me after his death was that she never responded to our bereavement counselor’s attempts to reach her over the next year, never answered my calls, and never responded to any member of the team’s voicemails or texts. Years later, I still wonder if Leila was able to sustain her faith in the face of what she saw as God’s broken promise. Did she come to an acceptance of Michael’s death as His will? Or did this enormous loss rend her faith irreparably?
Sadly, I’ll never know.
It’s been my experience that most individuals with a strong faith and engagement in a faith community are eventually able to make the transition from anger and questioning to acceptance of their loss as God’s will, a transition that may be strengthened if the survivors’faith community includes strong cultural ties as well, as it did in Leila’s case. Those whose faith does not include regular attendance of services or participation in a community of believers may have a harder time holding onto their faith in the face of a tremendous loss like the death of a child. Each family’s experience is unique. Regardless, the path of grief is a long and circuitous one in which the yearning for the deceased never goes away. Hopefully, in time, the mourner creates a new life that encompasses the love for, and memory of, the beloved.
Dr. Nancy Glass is currently Distinguished Emeritus Professor of Pediatrics at Baylor College of Medicine and Texas Children’s Hospital. During her long career, she practiced pediatric critical care medicine, pediatric anesthesiology and pain management, and pediatric hospice and palliative care. Now retired from active clinical practice, she continues to teach on end of life topics, mentors young students and physicians, and guides narrative medicine sessions for medical students. She recently received her MFA in Writing from the Vermont College of Fine Arts. She lives in Houston with her husband, enjoys classical music, and is an avid birdwatcher.