That Good Night

by Sunita Puri

  Her worry keeps her awake at night, watching the rhythmic rise and fall of Sergio’s chest, alert to changes in its tempo, fearful that she might be asleep if it suddenly halts. She tells me that she sleeps next to Sergio as his caregiver; it’s been a long time since she’s felt like his wife.

  It helps her when I show her the various ways the body demonstrates distress. “Does he ever breathe like this?” I ask in Spanish, heaving my own chest rapidly and wearing a look of distress. She shakes her head. I act out other symptoms aside from the obvious grimacing in pain: The rapid, shallow breathing that comes with either cancerous fluid or a blood clot clogging up the lungs. The nausea that accompanies even the tiniest sip of water. The confusion and agitation that can characterize the final hours. I start to write down which medicine to give in each instance, but remember that Maria cannot read very well, that she instead identifies medications by the color and size of each one. We instead discuss which medications can be useful in each scenario—the liquid or the pill that dissolves under Sergio’s tongue. But I know she will not remember it all. I cannot expect her to. Her own breathing becomes more rapid and shallow every time we discuss these things.

  I feel a heaviness in my chest when she asks me why hospice cannot pay for caregivers. “I wish I knew. I wish our system was different,” I tell her, silently wondering, as I often do, why our health-care system will pay for last-ditch-effort chemotherapy for a dying patient but not for one trained caregiver to help them remain comfortable at home.

  After I wrap up my visit, Maria walks me to my car. She is barely five feet tall, yet she is protective of me and walks me out every time I visit, her arm around my waist. When we reach my car, she turns and asks me if I believe in God. “I don’t know why this happened to him. He’s only forty-five. He has done nothing wrong, nothing at all. Maybe if we beg God, maybe if you also beg God, he won’t need your medicines and I won’t be alone.” She barely finishes the last sentence, burying her face in her hands and weeping.

  * * *

  I’d always assumed that dying at home was far better than dying in a hospital.

  Being at home, surrounded by familiar faces and embraces, is integral to dying a good death, right? Who would want to die in a sterile hospital with arms full of IVs, the sonic chaos of overhead paging and bed alarms, and the unfamiliar voices and touch of health-care workers?

  As it turned out, many of my patients did. There was Juan, a former baker in his late forties diagnosed with late-stage liver cancer. When he became so breathless that he turned ashen and sweaty, his panicked wife called an ambulance, too overwhelmed to give him the medications for shortness of breath that the hospice nurse and I had carefully taught her to administer. The thought of Juan dying in a hospital, under the watch of skilled professionals who did know what medicines he needed, felt like the best plan for him, she told me when I visited them in the hospital hours before he died. There was Lilah, a schoolteacher in her fifties dying of an aggressive form of breast cancer. She wanted hospice care, but not at home. She didn’t want her family to go on living in the house where she would die. She wanted to be cared for by experts, not by her two scared teenagers and a handful of church friends and neighbors. After all, experts had handled every detail of her medical care during her years with cancer. Why wouldn’t experts care for her in the last phase of her life?

  In hospitals, my patients and their families knew that nurses wore uniforms and followed protocols instead of texting friends and stepping out for a smoke the way some family members or caregivers might. Doctors could give precise doses of strong pain medications through an IV, which was much better than a nervous son squirting liquid morphine under his father’s tongue, praying that the medicine landed where it needed to. People who went to school for many years should be the ones deciding when a medication isn’t working, when it’s time to give another dose, when the end is near, patients and families told me. Our mothers and fathers deserve more than their grieving children doubling as rookie caretakers.

  What I could not have known until my home visits began was that even when some patients accepted hospice services, the proverbial “good death at home” is often still out of their reach. Fully experiencing the benefits of home hospice requires resources that hospice actually cannot provide: Money to afford caregivers, particularly in the absence of involved family members. A nearby pharmacy that stocks opiate medications for severe pain. Insurance that covers long stretches in nursing homes for people whose families may not be able to care for them. Without these luxuries, which some may take for granted, dying at home can be even more full of chaos and suffering than dying in a hospital. The important and growing national conversation about a good death hadn’t always included the experiences of some of the patients I cared for.

  * * *

  I park outside Ms. Stevenson’s apartment complex, but can’t open the gate. I call Barbara, the friend and neighbor who had taken Ms. Stevenson in two years ago.

  “Sit tight,” she says. “My grandson Richard is at home and will come let you in.” Moments later, a lanky teenage boy carrying a bag of Cheetos and a remote control opens the door. Jean, our team nurse caring for Ms. Stevenson, follows me into the apartment. Richard disappears into the room next to Ms. Stevenson’s room, leaving the door half open. I can hear the artillery fire and bomb blasts of the video game he’s playing.

  Ms. Stevenson lies in her bed, her mouth pursed into a tight line and her eyebrows scrunched together in pain. Five years ago, she had developed Alzheimer’s dementia but had no remaining family to help care for her; her two sisters and brother had died in their sixties. She had never married and had no children. But she knew her neighbor Barbara, first as a longtime friend and then as a savior: on two occasions, Barbara had waded into street traffic to bring a wandering Ms. Stevenson back to the sidewalk, grasping her hand tightly as they wove through the cars waiting for a green light, avoiding the gaze of their staring drivers. “I was just happy I was there when I was,” Barbara told me.

  After the second wandering incident, Barbara noticed that Ms. Stevenson was spending more and more time in bed, the front door to her apartment unlocked or open. She spoke less and less, mostly pointing to her backside, where she had pain from a widening bedsore. “She clearly needed to go to an old folks’ home. But I couldn’t bear the thought of that for her, and she didn’t have the money for it,” Barbara told me. “I told myself I have to take care of my friend.” That afternoon, Barbara cleaned out the spare room in her apartment and took Ms. Stevenson in. Ms. Stevenson’s doctor enrolled her in home-based palliative care, and we provided her with a hospital bed, wound care supplies, and the medications Barbara would need to care for her.

  But even though she was bedbound and could no longer wander into the streets the way she once had, Ms. Stevenson could still hurt herself. Unobserved, she would dig her fingernails into the small bedsore on her lower back, fresh blood and occasional pus streaking her fingers. In a fit of agitation, she sprained her wrist after slamming it against the railing of her hospital bed.

  Ms. Stevenson begins to moan, her cheeks streaked with fresh tears. We lift her comforter and gown to find the source of her pain, and my fear is confirmed: the feeding tube that had been surgically placed in Ms. Stevenson’s abdomen had been pulled loose from the stitches that tethered it to her skin. I examine Ms. Stevenson’s abdomen, looking for any signs that the dislodged tube might already be causing an infection.

  “I can’t believe this,” Barbara says when Jean and I call to inform her of the news. “Richard was watching her, I swear.” I think of the times I’d discussed with Barbara how important it was to have someone observing Ms. Stevenson—not just present in an adjacent room—because her dementia predisposed her to pulling and picking at anything from her own skin and hair to her feeding tube. I’d suggested giving her mittens and a soft ball to squeeze when she wanted to pick at something. I changed around her me
dications and doses hoping to minimize her agitation, pulling, and picking. These had worked to a degree, but Ms. Stevenson was still safest when someone was physically with her during her waking hours.

  But Barbara works full time. She had petitioned her boss for paid leave to care for Ms. Stevenson, but he told her to hire a caregiver instead. Barbara had already tried that. The last caregiver quit when she found an easier job in a wealthier neighborhood. The one before her stole pain medications. Another one had been excellent but broke her leg in a car accident. It was nearly impossible to find good, qualified caregivers who were willing to accept the meager salary that Barbara could afford to pay.

  Our social worker tried enrolling Barbara as Ms. Stevenson’s paid caregiver through in-home supportive services, but Barbara couldn’t make ends meet without her current salary. So she instead paid her grandson ten dollars an hour to watch her dear friend when he could.

  “Please believe me, I’m trying my best,” she begs over the phone. “I’m getting some referrals from a different home care agency so hopefully I’ll have a new caregiver for her soon. I just hope I can afford it.”

  I’d initially been surprised that Barbara, a friend rather than a blood relative, had taken Ms. Stevenson into her home. But I’ve now found this arrangement to be surprisingly common: friends from work or church or childhood contribute significantly to the care of my patients. Survival meant banding together, making new families from old friends. It both pained and touched me to see Barbara struggling under the weight of her commitment to Ms. Stevenson. I know there are very few alternatives remaining.

  I think then of Mary, a patient I’d seen the day before. She, too, has dementia that has left her vulnerable to hurting herself accidentally during fits of agitation. But every time I see her, she appears well and comfortable simply because she has three children who take shifts caring for her. All of them attended my home visits and listened carefully as I adjusted medications to keep Mary’s agitation and pain controlled and discussed changing the type of tube feeding she received, because her current formula seemed to be causing diarrhea.

  I’d prescribed nearly identical medications and recommended similar care plans for both Ms. Stevenson and Mary. But writing prescriptions for the right medications didn’t mean they would actually be filled. Describing in exquisite detail the symptom that each medication treated didn’t guarantee someone would be nearby to recognize these signs of discomfort, to dispense the needed medicine. And merely emphasizing the vital importance of a caregiver’s presence for both fragile patients didn’t change the many reasons one family was able to oblige while another—despite valiant attempts—could not.

  I think back to my fellowship training, to the first time I did home visits. My patients lived mostly in Palo Alto or the wealthy satellite cities that encircled it. Even with wealth, with paid caregivers and visits to a therapist and groceries delivered to the home, families struggled to handle the emotional and physical work of tending to a dying loved one. Without resources, this task seemed impossible.

  “I’m going to call that other caregiving group right now, Dr. Puri. I’m going to keep my promise to her. She’ll stay at home with me,” Barbara tells me, her voice quivering. She promises to find a caregiver by tomorrow morning.

  “I’m gonna be honest with you, Dr. Puri, this is a risky situation,” Jean tells me when I call to discuss my visit with her. “We may just need to discharge her from our services because I don’t know if Barbara can really afford the type of caregiver she needs, and the poor lady might keep hurting herself if we just keep trying and trying to keep her at home.”

  * * *

  I take a lunch break. There is a Mexican fast-food joint on my way to my next appointment, and I slide into a booth with a vegetarian burrito, extra avocado. The elderly clerk behind the counter walks over and gives me a free churro, winking at me. “Just because,” he says, “looks like you could use it.”

  I wonder how he knows this, whether my work shows in my face. I chew on the warm dough, cinnamon and sugar sticking to my fingers. A patch of sunlight warms me, nearly lulling me into a nap after I eat my burrito. Outside the window, a rickety ice cream truck drives by, the tinkle of its song soothing me. I pull out my phone and search for the latest celebrity gossip, the unexpected breakup or cheating scandal, the reality star with the purple hair, the shoes that cost ten thousand dollars, sold probably twenty miles from where I am right now.

  My phone rings just then, the number of one of the hospice nurses flashing across my screen. “Hi, Doc, this is Johnny,” he begins as he always does, in a friendly, singsong tone. “I wanted to give you an update on Mr. Fryer. His pain is now much better with the increased dose of medication you gave him.”

  “That’s awesome, Johnny. But wait—did he get to the ceremony?”

  Mr. Fryer is a spry eighty-one-year-old man with bladder cancer whose bones and abdomen ached from the spread of his disease. He refused to try any medication stronger than Tylenol and ibuprofen, but would never tell me why. These medications—which he swallowed by the handful when he was desperate enough—did little more than keep him in bed or on the couch, holding himself very still in a particular position to avoid any discomfort. His wife finally pushed him to tell me more about his reasoning. “Listen, you probably know nothing about this kind of thing, but I’m going to tell you now since I just can’t live like this,” he said, wincing as he spoke. “A guy a few doors down, he had some accident and had oxycodone pills for pain. Someone found out and broke into his house, stole it. Pushed him down the stairs when he tried to stop them.”

  He was right. I hadn’t considered that his pain medications, combined with his frailty, could make him an easy target for thieves. “I’m sure you’ve already thought of this, but what about hiding the pills?” I asked.

  “That’s what I’ve been telling him,” his wife told me. “And maybe you should come into our house the back way so nobody sees that a doctor is coming home.” I glanced at my white coat, unaware that my uniform might have jeopardized Mr. Fryer’s safety. We agreed that I’d come in the back entrance to their home next time, leaving my coat in my car.

  Mr. Fryer gave the medications a try. His wife and I emptied a bottle of allspice in her kitchen and filled it with the pain pills that I hoped would enable him to sit in a wheelchair for an hour and a half at his granddaughter’s high school graduation. He took the medication gingerly, using it only when the pain was unbearable. We talked about continuing to take the ibuprofen, praying for comfort as he waited for the pain medications to work, visualizing himself completely pain free as a reminder that he could achieve that.

  Johnny gives me the update: “He did, Doc! He wanted to say thank you but he’s asleep now since it was a long day. But I am going to send you a photo of him from the ceremony.”

  I decide to look at Mr. Fryer’s photograph when I need a pick-me-up. In the meantime, I imagine him sitting in his wheelchair (which always has a balloon attached to it by one grandchild or another) and smiling broadly, wearing his finest red sweater, the one he told me he loves because it perfectly conceals the port on his chest through which he received chemotherapy and the slight protrusion of the pacemaker sewn into the flesh beneath his collarbone. I imagine him focused on the graduation ceremony, taking in the cheers and balloons and flowers and inside jokes made by the valedictorian.

  * * *

  The drive to Linda’s takes me past streets where McDonald’s, Taco Bell, Church’s Chicken, and KFC line the corners of intersections, frozen in a perpetual face-off. I wave to Chaplain Matthew as I approach Linda’s apartment complex, a nondescript building surrounded by brown grass, multicolored pinwheels staked in the crumpled remains of flower beds. Matthew could calm even the most squirrelly patient with his tender voice, and has looked out for me in an almost fatherly way. I find Matthew standing in a parking spot right outside, smiling broadly, wearing a crisp pink
shirt and pressed pants. “I figured I’d save you the best spot!” he says.

  We walk to Linda’s front door, speaking softly about her situation. “I think this is going to be difficult for Linda,” Matthew tells me. “She is really afraid of dying and told me she just isn’t ready. Her husband is looking really worn out from taking care of her.”

  Linda’s kidneys began to fail long before her son died of a sudden heart attack. But after his death, she’d started using cocaine and missing dialysis, leading to multiple hospitalizations, heart troubles, and her recent decision to stop dialysis. “I just want to join my son,” she’d tearfully told her nephrologist, her psychiatrist, and the many other doctors and nurses who had cared for her during her numerous trips to the hospital. She was deemed depressed, but not suicidal. She did cocaine and felt better. She stopped doing it and became depressed again. Around that time, she’d enrolled in home-based palliative care and I began to visit her at home fairly often because of her ongoing nausea, weakness, and depression.

  But she missed all of the appointments our team and I made for her to see a social worker, therapist, and psychiatrist. She continued to try to make it to dialysis but her fatigue—sometimes from doing cocaine and sometimes from not doing cocaine—was prohibitive. Eventually, she decided to stop dialysis and enroll in hospice so that she could be at home for what would likely be a period of a few weeks before she died. But two days later, she called Chaplain Matthew and said she’d made the wrong decision. She wasn’t ready to die. She signed paperwork to end hospice services and returned to her dialysis session that very day. She came home confused, nauseated, and so weak that her husband, Charles, had to recruit three neighbors to help him pick her up and carry her back to their bedroom.