by Sunita Puri
Despite being on the ventilator and medications to artificially sustain her blood pressure, Maddy’s oxygen levels and blood pressure continued to drop. Brittany met with Molly and Beatrice and tried to help them work through their differences of opinion about their mother’s wishes. Brittany wrote in her note that Beatrice stormed out of the meeting when Molly insisted that her mother not be resuscitated when her heart stopped and she died. Beatrice said she was going to call the cops and have Molly arrested for murder. Maddy’s blood pressure kept dropping, even while four medications to increase it dripped through her veins. She died around 3:30, after several rounds of CPR. Reading this stings me. I write her name on a Post-it, reminding myself to call her daughters tomorrow and convey my condolences.
Marco is doing about the same. He is still comatose, requiring the maximum amount of support from the ventilator. His nurses noted that his family remain at his bedside, singing hymns.
Miss Jones has enrolled in hospice and will be back in her home tomorrow. I notice that she lives in one of the zip codes that I cover, so I’ll get to see her and Anna again sometime soon.
Before I return to my car, I remove my white coat and place it in the trunk. Locking away my white coat becomes my dividing line, my way of leaving my work behind as I drive home to the rest of my life.
* * *
My mother had left me two messages that day. The first, around 12:30: Hi, Sunita, Mom calling. I hope your day is going well. Did you take a break yet? Call me. She’d called again when I’d been visiting Ms. Carson. Hi, Sunita, Mom calling. Are you okay? Don’t you have five minutes to call your mother?
We’ve switched roles, I thought to myself. As a child, her hospital’s phone number had been emblazoned in my mind. On the rare occasions that I managed to reach her between cases in the operating room, she could only talk briefly in between commitments. Are you and Siddarth okay? Yes, we are. Is there an emergency? No. Okay, then I’ll see you at home in a few hours. My conversations with my mother were sometimes just as brief when she called me in residency and fellowship. Are you okay? Yes, Mama, I’m just on call. Have you eaten? Yes, but I had to eat quickly since I had four admissions in a row. Can I call you when I get home in a few hours? When I’d asked her in my residency how she had gotten through such intense training with a husband and young children, she responded with some variation of her usual reply: “I didn’t think so much. I just did it.”
Mothering and doctoring were each behemoth tasks that seemed an impossible combination. Yet somehow my mother had managed to do both well. My father, brother, and I visited her call room in the evenings, bringing her dinner so that she could eat and visit with us. Piled into the same room my brother and I stayed in as young children on holidays, we spread a picnic of food from home or takeout Mexican food onto the call room bedspread, eating off our knees on greasy paper plates. My mother ate and visited with us in between responding to pages and listening to overhead alarms that might signal an emergency.
I didn’t understand how much of a toll this routine had taken on her until I returned from Palo Alto. It wasn’t just being a doctor and a mother. It was that, after satisfying the demands of both, she had nothing left. She hadn’t ever considered that she would need anything else. My father supported her by caring for us when she was at work, cooking and checking homework and making sure we were picked up on time from school. But after my mother retired, she began to reflect on how thoroughly doctoring and mothering had become her sole identities.
We took a walk together one day on a beautiful coastal trail lined with succulents and chaparral, bordering a rocky shoreline. We stopped to watch the waves crash against large rocks, and we squinted in the sunlight, searching for resting seals. Over the summer, we walked here together nearly every day. My mother spoke about the yoga teacher training course she was taking and how she hoped to teach breathing exercises to chronic pain patients at her hospital. She told me about her classmates—the Indian woman who had traveled from the Midwest to take this particular course. The recent college graduate who wore his hair in a bushy ponytail and had a hoop-shaped nose ring. The woman around my mother’s age who practiced aromatherapy and lived on an ashram in Northern California. “I’ve never met people like this before,” she told me. “I wish I could have done this a long time ago.”
It wasn’t so much her words but the wistful tone of her voice that pierced me. She told me that taking a course for herself would have been impossible between work and taking care of my brother and me and my father. She had always felt guilty wanting to do anything that she truly loved, she told me; even the flower arrangement classes that she’d taken at the local botanical gardens were really for prayers, when she arranged beautiful combinations of flowers from our garden with store-bought flowers as an offering to God. But yoga was just for her, something she had been drawn to but never had a chance to explore. I listened carefully, more attentive than I’d been in recent years, watching foam and water engulf the rocks, linger momentarily, and then recede.
She told me what it was like to envy colleagues who took vacations with their spouses to Vietnam, France, Australia. Other colleagues dedicated time to specific hobbies that were just for them—flying planes, joining a book club, training for marathons. Some could carve out time away from their children because they had a stay-at-home spouse or a full-time nanny or nearby grandparents. “But you two were very sensitive children. You were very attached to me so I couldn’t leave you with anyone,” she said. I waited for her to say something about how I was probably far too sensitive to practice palliative care, that it wasn’t too late for me to look for a job in primary care or hospital medicine.
But instead, she told me something I’ll never forget.
I fixed my eyes on the brown-green algae floating at the top of the water’s surface. “You don’t have to struggle the way your father and I did in a new country with no family,” she continued. “Don’t make your career the only big thing in your life. If you do, the stress will kill you and it’s not worth it.”
I’d always assumed that my mother struggled with practicing medicine to the best of her ability because of family obligations. In fact, she told me the opposite.
“At a certain point, I realized that I could try to please everyone at work, but if I made myself sick with stress, they would easily replace me. But my family could not replace me.” I could never imagine my mother, alternately the fiery anesthesiologist who would refuse to do risky cases with unreasonable surgeons and the nurturing chief who arranged for an Indian restaurant to cater lunch for her team every Friday, as replaceable. Not just because she was my mother. But because she was an exceptionally gifted physician, one who brought home awards and recognitions and cards and presents from patients.
The sea breeze turned into a momentary gust, and I grabbed my mother’s arm to steady her.
“And you have a hard job, much harder than mine,” she said to me. “You are very strong. I couldn’t do this palliative care that you do. So you must take care of yourself, more than I did.”
I was taken aback. There was nothing my mother couldn’t do. This was the first time she hadn’t criticized my specialty. I hadn’t the faintest idea that she admired what I’d chosen for myself.
“How do you do it?” she asked, her eyes fixed on the ocean. “How do you watch people suffer so much all day, and then go back and do it again the next day?”
I watched a group of pelicans in a V-shaped formation fly along the ocean, hovering precisely above the water, close enough to identify fish but distant enough to avoid startling their prey. Maybe like those pelicans, I thought, watching as they glided along the blue expanse before us. They’re close, but not too close. I wasn’t prepared for her question, one I’d asked myself before and during fellowship, but stopped asking myself since becoming an attending. Did that mean I’d hardened? That what had moved me to tears just a year ago no longer did? Or w
as this a healthy maturation, one that allowed me to hover just above the depths without disappearing into them? “To be honest, I’m not sure. We always talked about how death isn’t the end of a person, and I think remembering that helps me. But, kind of like you, I try not to think too much about it.”
She nodded, still looking at the water. “Please take care of yourself. If you get sick, the hospital will replace you. But I will never have another daughter.”
I wrapped my arms around her and held her tight. The sun warmed our backs and the breeze cooled our faces. Overhead, gulls cawed. Other hikers moved around us on the trail. We embraced for a long time, until another strong breeze startled us.
* * *
I drove away from the hospital toward my neighborhood on the eastern side of Los Angeles. I’d chosen it because, as I told my brother, I wanted to live somewhere that reminded me of the Bay Area, somewhere walkable and lively, less glossy and polished than the west side of Los Angeles where my brother lived. My neighborhood was home to quirky dance clubs and vinyl record stores, colorful older cafés and sleek eateries that specialized in just one item each: grilled cheese sandwiches, vegan doughnuts, organic vegetarian cuisine. There were two independent bookstores within several miles of my place. I both appreciated the more rugged blocks that reminded me of my trips with my parents into Los Angeles as a child and giggled at the overload of hipsters I passed on sidewalks, all of whom reminded me how uncool I am and probably always was. As I headed east on Beverly Boulevard, I called my mother back. I stopped at the grocery store as we spoke, picking up granola bars and trail mix that I could keep in my car to snack on during future busy days.
Nine
DRIVE
For several weeks, I am assigned to spend my entire day doing home visits rather than squeezing them in after mornings at the hospital; a colleague of mine will see the hospitalized patients so that I can focus on seeing my growing number of hospice patients. I drive through Baldwin Hills, Leimert Park, Jefferson Park, West Adams, Crenshaw, and Inglewood. My patients are younger than I expect: women in their early forties with breast cancer, men in their fifties with failing hearts. During my hospice rotations in Palo Alto, I’d mostly seen patients in their seventies and eighties whose failing lungs and kidneys and advanced cancers didn’t surprise me. But people in the neighborhoods I cover die an average of ten years earlier than those who live in Los Angeles’s wealthy coastal neighborhoods. Residents in two of the zip codes I cover live the shortest lives in the city. Those neighborhoods ranked 102nd and 103rd in life expectancy out of the 103 zip codes in Los Angeles.
Not only do many of my patients die sooner than elsewhere, they die differently as well. They die with few resources and abundant fear, even when receiving the same hospice services that their wealthier counterparts receive. Death may be humanity’s great equalizer, but in my first year of work, I witness how the economic and social inequalities that shape my patients’ lives also shape their deaths.
On one hot morning in March, I drive along a street parallel to the Harbor Freeway to visit my first patient that day. I pass storefronts hand-painted in red, gold, and turquoise, advertising used motor parts, pupusas, and books “for a Christian lifestyle.” When I stop at traffic lights, I notice signs I’ve never seen before. One, stapled to a telephone pole, asks, “ARE YOU SCHIZOPHRENIC? EARN $7,450 IN OUR STUDY.” Another promises “LIFE INSURANCE FOR DIABETICS.” Fathers with custody issues are encouraged to call a number on a neon sign. “SELL YOUR HOUSE,” another sign promises, “AND EARN FAST EASY CASH.” I wonder what my patients and their neighbors make of these signs, whether they ignore them or call the listed phone numbers or try to rip the signs down.
In order for a person to be eligible for hospice care, two physicians must agree that he has six months or less to live if their underlying disease takes its natural course. Up to that point, the “natural course” of a disease has generally been slowed by dialysis or chemotherapy or an internally implanted defibrillator. Depending on a patient’s situation, these are often discontinued when hospice care begins, when our goal shifts to comfort and solace as the body quiets.
Many of my patients feel that they have barely lived at all when I show up to help them die comfortably. I enter their lives and their homes as a stranger when familiar comforts are what many need. Our relationship will be one of brief and necessary intensity. I assure my patients that it is natural to fear the word and concept of hospice, and I listen as they tell me about an aunt who died in terrible pain even with hospice, about their fear that accepting hospice means agreeing to do nothing for their father, about their worry that hospice care actually shortens people’s lives. I explain that my job as a hospice physician is to identify and treat the discomfort their disease has caused. It is also to get to know patients and their loved ones, to assess how they are coping, to ensure that they have the right resources to help with everything from planning a funeral to moving through the chokeholds of grief that will unexpectedly grip them. Some ask if I can take a family photo for them with their cell phones, and I oblige. I pray with them when they ask me to. I listen as some of them tell me about their loves, their pets, their accomplishments, their regrets. I listen also to the ones who cannot speak, who instead groan or babble, who grow quiet when I hold their hands or play them a song that their caretakers tell me they love. This is as essential to hospice doctoring as dosing medications for pain or nausea, for agitation or insomnia.
While a patient can technically be on hospice for six months, many of the patients I see die within a few days or weeks, never fully enjoying the benefits of the care we try to provide. In the United States, the median length of time patients spend on hospice is around eighteen days. Though this statistic shocked me during my fellowship, it no longer does. The term “hospice” has become so synonymous with “giving up” or “losing the battle” with a disease that it is often not presented as an option until patients are at the very end of their lives. A handful of my patients will die an hour or two after the hospice admission nurse meets them, explains hospice, and asks them to sign consent forms agreeing to hospice care. I will sign their death certificates, having barely met them and learned their names, a stranger who will attest to their departure from this world.
Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.
* * *
I park and walk along a sidewalk lined with broken concrete to my first patient’s home. On my way I pass a commercial building adorned with a painting of a young man with a double chin, small mustache, and short, spiky hair. Below it, in black lettering, are the words “R.I.P. ALWAYS IN OUR HEARTS.” I turn the corner and walk past another home with a cross made of fresh pink flowers nestled outside its security fence. A photograph of a young man rests against it.
Loss lives everywhere here.
I knock on the door of Sergio, a newer patient I have met twice before, once on a home visit two weeks earlier and once in the hospital shortly after that. I wait on his narrow porch next to a Safeway grocery bag filled with used blue hospital gloves and empty hand sanitizer bottles. I can’t see anything through the steel security screen that guards his front door, and most doors in this neighborhood; if I squint, I can just barely see the shadow of an approaching figure. Following the advice of another patient, I always wear my white coat and hospital badge on my visits, my stethoscope draped around my neck. “You should be clear,” she told me, “about who you are and why you’re here.”
Sergio’s wife, Maria, opens the door and hugs me hello. Sergio smiles widely from his bed, five feet away from the front door. His smile is outgrowing his shrinking face. He cannot eat because stomach cancer has blocked off his bowels, triggering nausea and vomiting if he takes even a sip of water.
At forty-five, Sergio isn’t thinking about how to die a good death. He is still gra
ppling with why death has come for him so soon.
He tells me that he’s feeling much better today than he did last week. The medications I’d prescribed took away his nausea and pain. Maria had taken him to a movie. He had the stamina to talk for nearly an hour on the phone with an aunt he hadn’t seen in twenty years. He’d also been able to sleep through the night for the first time in a month. “I can dream again,” he tells me with a wide smile.
I notice an open photograph album on his bed. “I want to show you who I used to be,” he says. “I did not always look like this.” I barely recognize the man in the photos he shows me: he was probably twice his current size, a round, joyful-looking man who lived in cotton T-shirts and a-size-too-small jeans, his wife’s arms wrapped tightly around his muffin top. “My friend took these,” he says as he shows me his wedding photographs. He and Maria married in the church they still attend, their reception full of home-cooked foods brought by friends and set out on folding tables like those in a high school gymnasium. Neither he nor his wife has family in the United States—each left Mexico ten years earlier and happened to meet in a dance class. “We don’t have much,” he told me on my first visit, “but we do have God.” There is a rosary draped around the bottle of liquid morphine at his bedside.
With the help of a neighbor, Maria tries her best to get him in and out of bed, bathe him, and recognize when to give him different medications for pain and nausea. “Is this one for pain, or is it for nausea?” she double-checks with me. Her brow furrows, and there are deep lines between her eyebrows that Sergio tells me are new. I know that the hospice nurse, who visited the day before me, has instructed her to give one medication if Sergio has pain, another if he is nauseated—but Maria is afraid, as so many caregivers are. “Sometimes, I don’t understand what problems I should be looking for,” she tells me. “And I could never forgive myself if I missed something, if he suffered because I am not a nurse.”