by Sunita Puri
“Maybe then what you are saying makes sense,” Mary said, shaking her head. “If he isn’t going to live no matter what you do, if his heart stops, then the best we can do is just let him go in peace.”
I thought then of the other musings I’d written about in my diary, the difference between Eva’s miraculous recovery and Steven’s miraculous survival, and the smaller, everyday miracles that humans themselves were capable of. Could it be miraculous when people keep going even when the odds are stacked against them? Could it be miraculous to accept a situation no matter what the outcome? I’d written.
Though we’d actually hoped to talk about issues aside from CPR, this felt like the right time to close the meeting. “I think you are making a good decision for Jack,” I said quietly, acknowledging how difficult this conversation had been. “We can still hope for the miracle of him waking up and being himself again. But it is also a miracle that he is still here with us after everything he has gone through. And I’m not sure that would have happened without your love.”
Steven avoided my gaze. “Thank you,” he whispered.
* * *
My father returned from the catheterization lab groggy but smiling. They had discovered a 90 percent blockage of one of his coronary arteries, which was now held open with a stent. “He was joking with us almost the whole time,” the cardiologist told me. “We had to tell him to stop so that we could focus on his heart.” My father looked up at him just then and asked, “Hey, are there free refills on the morphine?”
My mother wiped her eyes and placed her hand on his chest, right over the photograph of Lord Ganesha. “Thank you,” she said to the picture, pressing her hand into his chest and closing her eyes.
“I saw my heart,” my father told me. “I saw all the images after they put the dye in me. It was so beautiful, beating there on a screen. I even saw where the problem was. It was just a blocked-up pipe and they unclogged it.”
My face crumpled, eyes squeezed shut, mouth tense and breath held, exhaling as tears of relief spilled onto my shirt. I shooed away the thoughts that had filled my mind when he was in the catheterization lab, preparing me for the possible reality of life without my father.
“But weren’t you scared? How could you have been joking with them?” I asked between sobs.
“Nope,” he said. “God was with me the whole time.” He patted the photo of Lord Ganesha. “Nothing would go wrong.”
“But what if it had? What if something did go wrong?”
My father looked at me, laughing again. “If He had wanted to take me, I would have been gone when I first had the chest pain. Instead, the chest pain was His warning, and now I am fixed,” he told me. “But if this was my time to go, then it would have been okay. He would have made sure to take me fast, not let me linger around here,” he said, pointing to the ceiling.
“But I wouldn’t have been okay. I would never be okay again if you were gone,” I said through my tears. How is it so easy for him to say this, like his death wouldn’t be a big deal? Why does he think that rationale and logic could somehow make loss more bearable?
“Well, then you would only suffer more if you couldn’t find a way to accept rather than fight against reality, and I wouldn’t want you to suffer like that,” my father replied, again using his Mr. Socrates voice. “It doesn’t mean giving up or giving in. But it means that you see what you can and cannot change, and learn to be okay with that. Acceptance is really a spiritual lesson. It’s something we need God to help us with.”
“Okay, Ashok, no more talking about this,” my mother said, pulling his blanket up to cover his chest. “You need to rest.”
“My manager has spoken,” my father said, smiling. “See? I have even learned to accept that I have to do what she says.”
* * *
After our conversation, Jack’s parents watched over the next five days as he got a bit sicker before getting better, watching his blood pressure and heart rate, looking for signs that he might try to speak. I examined Jack every day to make sure he was comfortable. The morning before he was discharged back to his facility, Mary asked if she could talk to me.
“You and Dr. Nguyen told us things nobody wants to hear and I was very angry at you both,” she confessed. “But I talked to my family about it. I guess I understand now that if I told you to put him through those things, like CPR, I think he would only get hurt, not get better because he is so weak.”
“It is really hard to come to that realization,” I said. “Especially about your own child.”
“Yes,” she said as she stroked Jack’s face. “But I just have to accept whatever God’s plan for him is.”
“My father has always told me that learning acceptance is one of the hardest parts of living,” I said, thinking back to our conversation after his catheterization. “And accepting this awful situation has got to be some of the hardest work you’ve ever done.”
“Your father is right,” she said, wiping her face. “And it is hard to know what you should accept and what you should fight. That is where you let God guide you.”
And maybe this is what faith is all about—having a way to understand and accept and endure the most incomprehensible things that happen to us. Having faith didn’t have to mean subscribing to a certain set of religious beliefs or praying to a deity or going through elaborate rituals in a church or temple or mosque. Maybe it meant surrendering the complete control we assume we have over our lives, and instead opening to the idea that another force, benevolent and mysterious, looked after us. Maybe it meant practicing acceptance of whatever life brings our way. And maybe it also meant remembering that our sorrows and joys, just like our bodies, were temporary.
I watched Mary redo the braid in Jack’s hair and spray citrus air freshener on his pillow. His eyes looked watery. I wondered, as she did, if he was crying. I asked her if we could fill out a form called a POLST (Physician Order for Life Sustaining Treatment) that would travel with Jack back to his care facility. The form was a way of letting Jack’s caregivers and emergency responders know that when Jack died, we would focus on keeping him pain free and comfortable rather than performing CPR to jump-start his heart. “Can he still come to the hospital if he gets sick?” Mary asked. “Yes, of course,” I told her. “But it is important to keep in mind what we talked about. We may not have the tools we need to help him fight another infection here, but even if we do not, he can always come back here and we will do whatever we can to keep him comfortable and well cared for.”
Mary nodded. “Doctor, will you pray for him?” she asked timidly. I willed myself not to tear up. She was asking me to care for her son—and, indirectly, for her—in a very specific way, one that drew on my humanity, not my profession. She was asking me to remember him after he left the hospital in a few hours. Her request felt more serious than requests patients and families had made of me in the past; this wasn’t a request for Hail Mary chemotherapy or another CT scan to identify a problem. This was a request for a blessing.
“Of course I will pray for him and for you and Steven,” I said, giving her a hug. I felt the stiffness of her hairspray-lacquered bob against my face, and inhaled the scent of the citrus spray on Jack’s pillow. Later that day, the Gayatri ran through my mind as I watched the paramedics transfer him from his hospital bed into a transport gurney, careful not to dislodge his feeding tube or his tracheostomy. That was the last time I’d see Jack and his parents. One of the hardest parts of seeing patients in the hospital was that I rarely knew what happened to them once they left, especially when I rotated from one hospital to the next. Please protect Jack and give his parents the strength to let him be at peace when it is his time to go, I wrote in a letter that I kept on my altar that night, right next to a figurine of Lord Ganesha and an illustration of Goddess Durga that my grandmother had given my mother, who’d passed it on to me.
* * *
I would run into Dr.
Nguyen about a month after Jack left the hospital, when I had moved on to another rotation. We attended a lecture at the Stanford campus and caught up afterward. She would tell me that she had learned that Jack had died recently in the emergency room. He had contracted another infection shortly after returning to the nursing home. His temperature rose and his blood pressure plummeted. The nursing home staff called the paramedics, who’d reassured Mary and Steven that Jack would get better once he got antibiotics and fluids at the hospital. But as they lifted Jack onto a gurney, his heart, initially racing at a rate of 120, suddenly slowed to the 30s. Jack’s heart stopped, and Mary and Steven asked the paramedics to do whatever they needed to do to save their son. One of the emergency room notes mentioned that Mary had torn up the POLST we’d filled out and signed together.
The team of doctors and nurses in the emergency room tried for an hour to restart his heart with chest compressions, shocks, and doses of epinephrine pushed through his IV. He died there in that room, several floors below the ward where Dr. Nguyen and I had discussed how little benefit and how much suffering CPR would cause him.
I imagined Jack’s wrinkle-free face, his braid, his pillow and quilt, covered with the necessary clutter of emergency situations: IVs and their sterile wrapping, smatters of blood from the placement of central lines or collection of labs, wires dangling from cardiac monitors and the ventilator. I winced as I thought of what he went through, of what must have caused his mother to tear up the form meant to protect him from exactly this situation. I wished that he’d died in the middle of the night, in between nursing shifts, so that he could have gone in peace. I hoped for his parents’ sake that they would remember him by how he looked the day or week before he died, not how he looked at the end.
“Why would they put him through that?” I wondered when Dr. Nguyen told me the news. “I really thought we’d helped them to make the right decision.”
“It’s hard to say. People panic. Parents panic,” she told me. “But you should remember that we did help them, even though the outcome wasn’t what we hoped for him. It’s like doing a surgery that didn’t fix a patient. The work was still important.”
I didn’t find comfort in Dr. Nguyen’s words. I couldn’t understand how she was so calm and collected about this. All our work ultimately didn’t do a thing for Jack, I thought angrily. It was as though we hadn’t been involved at all. What had all of those conversations meant if Jack’s parents stuck to their original plan? I longed for the days when I could diagnose cirrhosis or lymphoma, treat pneumonias and heart attacks, even if it meant that this was all I did for thirty hours straight every third or fourth night. Though I’d sometimes felt ambivalent about my work, I at least felt useful. These days, I felt like I could throw myself into conversations with patients and the outcome wouldn’t necessarily change. What was I supposed to take away from this?
“Remember what we talked about early in your rotation?” Dr. Nguyen asked when I ran into her again the following week. “We have our plans as doctors. But what if God has another plan for our patients? How would you feel if you could say to yourself that you did everything you could but you couldn’t control what ultimately happened to Jack?”
I thought about Dr. Nguyen’s words that evening as I boiled capellini and stirred a pot of tomato sauce I’d made from scratch. It struck me that I might practice palliative care, but I was just as vulnerable as my colleagues in other fields to the illusion of control over the outcome of every situation I encountered. If other doctors believed they could fix a situation no matter how dire, I thought I could get patients to make and stick to the “right” decisions about the most tender time in their lives. I thought of my father’s words, and of Cheryl Strayed’s essay. Perhaps here, by way of my chosen subspecialty, was the opportunity to learn more about surrender and acceptance, and to see that our belief in control was a false story we told ourselves to make life and its unexpected sorrows survivable. Yet acceptance wasn’t acquiescence. Could there be salvation, comfort, in relaxing my tight grip on life, letting it unfold as it would both for myself and for my patients, knowing that I’d played my part? I reread what I’d written about the nature of miracles and practiced saying to Jack’s parents: “Could it be accepting a situation no matter what the outcome?”
And I realized that, in order to keep doing this work, this applied to me, too.
Seven
GASP
On Monday mornings in fellowship, I had a welcome break from seeing patients in the hospital. Instead, I saw patients in our palliative medicine clinic at the Palo Alto veterans hospital. Our clinic was on the second floor of a cream-colored building. I’d see patients in a nondescript exam room furnished sparsely with a gray examination table, desk, and computer. There might have been a lone poster of the human body’s anatomy on the white wall. In this sterile space, I’d talk with my patients about the messiest of their emotions, the way their symptoms contaminated and constrained their lives.
The list of patients we saw was small but growing. Unlike many of the patients I saw in the hospital, many of my clinic patients were still able to walk and talk and be themselves. We spoke when they wore their own clothes instead of hospital gowns. I treated their pain before it was so severe that they ended up in the hospital. I talked with them over time about life with their illness and their desired goals and quality of life should they suddenly become sicker. By the time I was called to care for patients in the hospital, many were close to dying from cancer or heart failure or liver disease. But my clinic patients—who were sick, but not sick enough to require hospitalization—needed my help living well.
I met Dave on an August morning, about a month after fellowship began. Dave had emphysema—a chronic, irreversible lung disease caused by years of smoking. He suffered from terrible shortness of breath, despite the inhalers and medications he took religiously. As his breathlessness worsened, his appetite waned and he became more fatigued, sleeping through his alarm and sometimes going to bed well before dusk. His primary care doctor referred him to our clinic hoping that we could help ease the sensation Dave called “that feeling of drowning on land.” The electronic referral request also mentioned that his doctor had tried unsuccessfully to talk to Dave about what he would want for himself as his emphysema worsened; he wondered if we could assist with that conversation, too.
While most patients feared excruciating pain, there was something about air hunger, that sensation of breathlessness, that struck me as a different form of profound suffering. Seeing a patient panting, mobilizing sinewy neck muscles to gasp for the largest breath possible, is a struggle for me. My internal medicine training kicked in as I scrolled through Dave’s chart: Could his heart failure have contributed to his struggle to breathe? Did he have a blood clot in his lungs because he had been more sedentary recently? Should I order a CT scan of his lungs and an ultrasound of his heart? I wrote down my preliminary thoughts just as I had in residency, reminding myself that in order to be an effective palliative care doctor and treat his symptoms, I needed to understand and treat their causes.
Dave thought I was much younger than I am, and addressed me with the affection of a father: “You must not even have been born when Bush Senior was president! No way you could know much about the Vietnam War, but I fought there, and they would give us cigarettes. I loved my cigarettes. Still do, but no, I haven’t had one in the last few years, don’t worry, Doc!” Dave hissed when he laughed, his upper chest convulsing and the oxygen tubing falling slightly out of his nose. He stopped laughing and placed his hands on his knees, sucked in a deep breath through his mouth, and looked at me, smiling. He carried his oxygen tank in a zipped black canvas bag, which also contained his inhalers and plastic bags full of his medications. His fingers were thin and knobby from arthritis, and his nails were tinged blue from the chronic lack of oxygen that emphysema caused. Dave was seventy years old, but looked ninety to me.
“You know, Doc, my
breathing seems to be getting worse even though I’m taking all of my medications and my inhalers, everything,” he said, pausing for a breath after one sentence accentuated by hand gestures and shrugs. Donna came to mind, and I thought of how having a conversation tired her in the way a long run might exhaust me. I didn’t need to look at the notes in his electronic chart to see that his emphysema was end-stage. “I’m working on some important family stuff, so I need to be able to at least walk to my truck, drive, and get home again. But it’s been at least two weeks since I could do any of that without getting very winded,” he told me.
I examined Dave thoroughly and found no obvious signs that his heart failure had worsened or that he had a blood clot in his lungs. He convulsed with coughs when I asked him to take a deep breath. I felt the sharp borders of his shoulder blades and each of his vertebrae as I rested my stethoscope on his back. His lungs whistled emphysema’s distinct wind song.
“I have a couple thoughts for you, Dave,” I said as I folded my stethoscope and placed it on the desk. I told him that a small dose of morphine might help ease the breathlessness he suffered even after taking his inhalers and other medications. I braced myself for a strong reaction; the word “morphine,” much like the word “hospice,” could provoke fear in patients who interpreted its prescription as a harbinger of death.
But Dave didn’t react to my suggestion. He’d seen morphine work very well for his mother, who had died years before from ovarian cancer. Morphine might bring great relief, he told me, but he objected to the drowsiness he knew it would cause. “I’ve gotta be able to drive myself and be clear of mind,” he said quickly, shaking his head when I inquired whether he would consider public transport or getting rides from friends. “My brother just died and his house is a mess, so I gotta go up there and get it in order so that my son can live there. The house is up in the mountains, so I can’t ask anyone else to drive me there all the time. And I gotta go to the bank and deal with his financial mess.”