Amanda, our hospice nurse, answered the door when I rang the doorbell, showed me where to leave my shoes and escorted me into the den, where I found Faiz’s mother, Haima, sitting on the floor. Haima apologized that the air conditioner was out again, for the second time in a week. Within minutes, my slacks and blouse stuck to my skin, and the air in the den felt heavy despite a frantic fan and the open window in the breakfast room.
Haima was cradling two-year-old Faiz in her lap, her close-cropped hair uncovered, the first time I had seen her without a headscarf; she seemed vulnerable and exposed. Sweat trickled down her chest. Little Faiz was listless and weak in his mother’s arms, wearing only a diaper. He never lifted his head, but he did lift his left arm, randomly, just as his legs also moved occasionally without obvious intention. His left eye, affected by the tumor, protruded from its orbit, swollen and red, so large that the lid could not close; his right eye was closed. His belly was hugely distended, much more so than at my last visit ten days ago; still, he had clearly lost more weight. Faiz had looked reasonably well-nourished at that first visit; but this time, loose skin on his arms, legs, and face made him look like an old man. He had lost both subcutaneous fat and muscle. Haima commented on his perfect skin, warm and smooth, as she stroked his cheek. His brow was unfurrowed: he looked peaceful and comfortable in her arms.
After a few pleasantries, I began my assessment. “Haima, is Faiz still nursing?”
“No, he hasn’t been able to for the last several days... I miss that, because he used to nurse all night long, snuggled right next to me in bed.”
“Is he drinking at all?”
Another hesitation... “Only a little carrot juice from a syringe, just a few ounces all day yesterday.” Tears now coursed down her cheeks... I paused before speaking again.
“Is he having trouble swallowing when you put the juice in his mouth?”
“I’m not sure, it just seems to collect in the back of his throat. But he hasn’t been coughing.”
I worried that Faiz was already too weak to cough, too weak to protect his airway. But watching him, he wasn’t struggling to breathe, at least not yet.
I thought back to the day I first met this family three months ago, when Faiz was still in the hospital, recently diagnosed with an aggressive cancer. His chance of cure at the time of diagnosis was quite low, so low that after discussion with the oncology team, his parents decided not to proceed with the recommended course of chemotherapy to be followed by an aggressive surgical procedure. The team was not accustomed to parents’ refusing treatment. After additional conversations, the lead physician convinced the parents to accept one round of chemotherapy, in the hope that it might make Faiz feel better. From the oncologist’s perspective, Faiz tolerated the chemotherapy “well.” In the parents’ eyes, though, the treatment was excruciating: he developed high fevers and relentless diarrhea, stopped eating, and cried every time a staff member walked into the room. All of that seemed “normal” to the oncologist, of course. Adding to the parents’ distress was their separation from their three-year-old daughter, who was not allowed to visit while Faiz’s blood counts were so low.
The parents’ decision to forego recommended care violated the treatment team’s expectations, so his physician consulted the hospital ethics committee and Children’s Protective Services (CPS). The couple had to explain their reasoning to a gathering of ethicists and were required to submit to an evaluation and a home visit from a CPS case worker. In both instances, the parents told me during my hospital visit, they felt they were on trial, that their most deeply held values were being questioned. His voice slightly raised and pressured, Ahmed said he felt an undertone of racial and religious bias. In the end, luckily, the parents’ values and decisions prevailed. Haima and Ahmed were appreciative, pleased they could focus their attention on Faiz’s comfort with support from our home hospice team.
Ahmed was still angry about those early interactions when I met with the parents at my first home visit: his jaw was clenched and his speech clipped as he revisited their experience in the hospital. He knew he’d told me their story before, even referred to our first meeting; but still, their experience was clearly burning a hole in his stomach. Haima was mostly silent that day as she listened to her husband, rocking Faiz and crooning to him, her head covered, her eyes attentive. Their three-year-old daughter, Farah, played quietly with her baby doll on the rug at her mother’s feet, occasionally reaching up to pat her brother’s head.
When Ahmed finished talking, I assured both parents that the treatment decision they had made for their son was all the evidence I needed to know how much they loved Faiz. Ahmed’s body visibly relaxed. I assured them our team was going to focus on Faiz’s comfort, that we would work with them to find the best dose for his pain medicine: whatever it took to keep him comfortable, while still hoping he could be awake enough to interact with them. I assured them that they would always have the final say about any recommendations I offered. We spoke for a few minutes about what changes in Faiz’s condition I thought we might see in the coming days and about options for feeding him if he got too weak to eat. Then I performed a quick exam and left the home.
Now, ten days later, I didn’t need a stethoscope to know that Faiz’s heart was racing; his chest wall was so thin I could see his pulse bounding through the skin. He was obviously dehydrated already. No respiratory distress, thank goodness, but it was clear that he was declining fast. After we reviewed his symptoms and his medication log, Amanda left. Haima and I sat silently on the floor. A few moments later, I commented on the wedding photo on the wall. Haima looked stunning in her white dress and veil, Ahmed, in a suit, handsome and proud.
Haima began to speak, nodding toward the picture. “How did I get from there to here? How am I supposed to get through this?” As she processed aloud the upcoming death of her son, she spoke of her Islamic faith, about her extended family back home in Nigeria, about how she needed to talk with her mother by phone multiple times a day. She quoted her mother as saying: “Haima, you are older than I am, because I have never lived through something like this.” She credited her mother for helping her stay grounded. A recent immigrant to the United States, Haima was isolated and alone, with no close friends and no family members locally except her husband. As she imagined Faiz’s impending death, Haima told me she found comfort in reading her Koran every day, assured to know that Faiz would soon go with Allah “to a better place, without sickness or suffering.” She was silent again for a moment, looking down at Faiz.
Between the den and the kitchen was a play area that Haima had assembled for Faiz and his Farah, with neatly organized toys and books, close enough for her to watch them while she cooked. Haima described how she had set up the space, then showed me videos on her phone of the two children playing together, as recently as July, when Faiz was first diagnosed with the rapidly growing cancer. I saw the two toddlers “cooking” and playing house, Farah protective and loving. Then Haima asked me to accompany her upstairs, cradling her sleeping son in her arms, to show me the room she had personally painted and decorated in anticipation of Faiz’s growing independence, complete with a new toddler bed and inspirational sayings inscribed on the walls. “And now look...” she said as she gazed down at Faiz.
Back downstairs, we were silent again. I had the sense that Haima had more to say, so I just sat. She rocked back and forth slowly, gently, rhythmically, as though to comfort a fussy baby, but Faiz was barely responsive. I willed myself to be still, hoping to match Haima’s calmness in my own body. I willed myself to remain silent, practically biting my tongue to avoid releasing a string of useless platitudes. Tolerating silence is hard, but my silence was necessary to give Haima the space she needed. I breathed in and out, slowly, with intention. And waited.
After a few minutes, Haima began talking again, and this time her thoughts were focused on her gratitude: grateful that our team had been able to control Faiz’s pain, grateful that he would soon be relieved of the burden of illness, grateful that he was able to be at home, grateful for her husband’s love and support. Haima told me she firmly believed that anger at Faiz’s fate would only make losing him harder, so she had chosen to focus on her gratitude. She said it again: “I choose gratitude, and I feel more peaceful.”
How could she be so calm as Faiz approached death, in the face of such profound anticipatory grief? Her strong faith contributed, no doubt. I could also see that Haima’s mindful focus on gratitude made it possible for her to control her thoughts and emotions, to manage her despair and anger, to be calm and present to Faiz during his final days. I was in awe of this young mother’s strength and courage and considered myself a humble student to the lessons she taught me at this visit.
It's been several years now since Faiz died, only a day or so after my visit. Haima’s lesson about gratitude has influenced all of my hospice interactions since that day, as I attempt to model the power of gratitude to affect emotions during even the darkest times. When I take the time to voice my gratitude with a patient and family about their difficult situation, it seems to shift the conversation; patients and families often share with me the aspects of their lives that have comforted them, given them strength, eased their journey. And then, it seems to me, we all touch that sliver of peace and breathe a little deeper.