by Sunita Puri
In our hospital system, four teams, distinguished by the zip codes each covers, care for patients on hospice and home palliative care all over Los Angeles. I have been assigned to the South Team, joining several nurses, a social worker, and a chaplain. Working most often separately, we make home visits to patients living in specific zip codes in South Los Angeles. On Wednesday mornings during our team meetings, we discuss each patient and his or her plan of care, with input from all team members. I might report that Mr. Lewis’s pain and nausea are very well controlled, but he keeps telling me he thinks he should stop taking the pain medications and suffer, because his cancer is punishment for his sins. Our chaplain, concerned, will put Mr. Lewis on his schedule. Our social worker might report that Mrs. Williams’s anxiety is worse; it didn’t seem that the medication I’d prescribed had worked. I, in turn, will put Mrs. Williams on my weekly schedule. Teamwork was essential.
I type Ms. Carson’s address into my phone and start my car, realizing that I forgot to grab lunch. I have a bottle of water, half finished, in the cup holder. This will have to do for now, I tell myself.
2:00 P.M.
I drive along Venice Boulevard toward the major street closest to where Ms. Carson lives. I take in the plazas, pedestrians, signs, and storefronts that line residential roads and larger boulevards. Along Venice, there’s a black-and-red billboard announcing that a popular hip-hop DJ—one I listened to throughout high school—has moved from one radio station to another. I pass at least three plazas and glance at the business signs: Mexican fast food, coin-operated laundry, a check-cashing place, a nail salon that now takes credit cards and has a new mani-pedi combo offer. Each plaza seems to have a doughnut shop.
Residential streets, smaller tributaries that branch off from Venice and La Brea, are lined with green-brown lawns and the dust and metal of ongoing construction. White paint peels off older homes and apartment complexes, some with sagging front porches or boarded-up front doors. Interspersed are newly renovated homes, navy blue or forest green, with small yards filled with succulents and Mexican sage.
Ms. Carson lives in a white house with a white gate on a quiet street. I park my car across the street and glance at my reflection in the mirror, making sure the collar of my white coat isn’t turning in on itself. I carry my stethoscope, blood pressure cuff, oxygen monitor, and a first aid kit in a brown messenger bag. In an orange-colored Moleskine, I take notes on my visits so that I can write my electronic notes later. Now I review the notes about Ms. Carson that I’d gathered from her electronic chart.
Sixty years old, recent diagnosis of metastatic cancer, possibly sarcoma, had a bowel obstruction but family refused artificial nutrition, insisting that they can feed and take care of her. Decision making shared by children and husband. Currently full code. This is first visit for home palliative.
As I cross the street, I suddenly realize that nobody—except for Ms. Carson’s family—knows where I am. I had been given a list of patients in the territories I covered, along with a list of those who needed visits sooner rather than later. I am in charge of my own appointments, and while I had initially thought it was great to have the freedom and flexibility to make my own schedule, I recognized now that I was not just independent, I was alone.
I’ll be fine, I tell myself, remembering that Ms. Carson’s daughter had sounded perfectly normal on the phone. I remember a few safety tips that one of my colleagues had given me. Position yourself between the patient and the door. Know the way out of the house. Check to make sure you have reception on your cell phone. Park nearby. I open the metal gate and knock on the front door.
A young woman in sweats and a headband answers, her guarded expression softening as I introduce myself. “Hi, I’m Dr. Puri from palliative care. I think we spoke by phone?” I point to my hospital badge, which I am required to show her.
“Yes, yes! Hi! I’m Gina, Alanna’s daughter,” she says, opening the screen door and shaking my hand.
She ushers me into a living room lined with two couches and easy chairs, and several large green houseplants. Weak sunlight filters through partially open blinds. Several black-and-white family photographs sit atop a piano covered with a white scalloped tablecloth. I inhale the sharp tang of citrus. “I was just making juice for Mom. She’s in the first room to the right. I’ll join you in a sec.”
Ms. Carson lay in a hospital bed in a tiny room that barely fit two additional chairs. A large pink plastic basin filled with gauze, antiseptic pads, and bottles of coconut and almond oil sat on one of the chairs.
“Hi, honey, are you my new doctor?” Ms. Carson asks, turning her head to look at me. She wears a multicolored knit cap and large glasses with purple frames that she pushed up her nose. “You are so young!”
“I promise I’m not that young,” I say, shaking her hand and winking. “I’m Dr. Puri. It’s really lovely to meet you, Ms. Carson.”
“Thank you for coming to my home. So tell me, how can I help you, dear?”
I chuckle and say, “You stole my line!”
“Oh, goodness, that’s right. Sorry, I have been a schoolteacher for so many years and I just always ask people how I can help them.”
I have already started to examine Ms. Carson. I observe how she is seated in bed, whether she grimaces in pain. Her hand is neither unusually cool nor warm. She is clean and well groomed, and can speak to me without losing her breath. Her skin is smooth, probably from the coconut and almond oil I could smell. A plastic container connected to a tube in her abdomen pokes out from the side of her bed. The dark contents of her intestine, a portion of which was blocked off by her cancer, empties into the container. The tube ensures that these contents, which can’t move around the blockage, can be emptied and therefore spare her horrific bouts of nausea and vomiting.
“So tell me, are you married, young lady?” Ms. Carson asks, reaching for my left hand to look for a ring.
“I guess you could say I’m married to my job,” I reply, smiling. This had become my way of sidestepping that specific personal question, which I’d been asked by everyone from patients to well-meaning hospice nurses.
“Why are you not married yet? You are just like my Gina. I keep telling her—”
“What do you tell me, Mama?” Gina returns with a glass of juice and a straw. My stomach growls, and I adjust myself in the chair to cover up the sound.
“You ain’t married and she ain’t either!” Ms. Carson exclaims as she reaches for the juice.
“Oh, please don’t start with that. She’ll never come back here!” Gina turns to me and mouths, I’m sorry!
Gina helps her mother to sit up in bed. “Mama loves her juice and her fruits,” Gina says as she guides the straw to her mother’s lips. “I was reading in her chart that she didn’t want artificial nutrition,” I say as Ms. Carson sips her juice. “Yup,” Gina says. “I make juices and smoothies, and Mama has them for each meal.”
Ms. Carson offers me a sip of her light green juice, which smells of citrus, apples, and parsley. My mouth waters. I decline graciously, but with great difficulty. “Do you ever feel nauseated after drinking your shakes?” I ask her.
“Not at all,” Ms. Carson responds. “Every doctor asks us that,” Gina says, “but what’s crazy is that she feels so much better than she did on the artificial stuff from the hospital, and she even has started to have bowel movements, which they told us would never happen.”
That was unexpected for a patient with an intestinal blockage. I am surprised at how well Ms. Carson looks with the support of mere juices and massage. Although she has an aggressive cancer, she has no pain and takes no medications. Her only concerns are fatigue and difficulty maneuvering herself out of bed. She loves my suggestion of getting a physical therapist to visit her to help her move a bit more independently, which is her main goal.
After I examine Ms. Carson, Gina and I speak in the living room. She asks me exact
ly what palliative care is and how often I would visit.
“Good questions,” I tell her. “I’m visiting because when your mom was in the hospital, the doctor taking care of her felt that it would be good having a team visit her at home to make sure she was not suffering from any pain or other uncomfortable symptoms, and to make sure that you and your family are all well supported in taking care of her,” I say. “There’s a whole team that will visit. Her nurse will actually see her the most frequently, and the social worker, too, but I’ll see her pretty often, too, because she’s got a lot going on medically.”
“But this isn’t hospice, right?” she asks, cocking her head to the right. “Because I heard that hospice is only for patients who are about to die, and Mom isn’t. I know she’s not well but I don’t want hospice here.”
I don’t tell her this, but I actually wondered why Ms. Carson wasn’t on hospice instead of home-based palliative care. Her cancer, which has moved into her lungs and bones and liver, will probably take her life within a few months, especially since she is far too weak to undergo chemotherapy. Now I knew why.
“So it’s not hospice,” I begin. “But our team does some of the same things that a hospice team would do by visiting and checking in on Mom and her whole family.”
“I quit my job to take care of Mom,” Gina says quietly. “Dad would freak out if he knew that, so I lied to him and said I’m on family leave. My brother isn’t working and he’s not gonna look for a job until later. So we are basically living off my dad’s retirement money and my mom’s pension. But we don’t need hospice. We can take care of Mom ourselves.”
I know intuitively that it’s not the time for me to correct Gina’s beliefs about hospice. It is the time for me to listen and learn how to communicate with her. Ms. Carson is actually doing quite well, I tell her, and we can work together to maintain her current condition for as long as we can. I don’t make any changes to her care other than requesting a consult from physical therapy to help with her mobility.
“Your mom did a good job with you,” I observe, nodding my head. “Not everyone has the motivation or ability to take good care of their parents.” I make a mental note to involve our team social worker that money is tight for the family. Maybe she can help Gina and her brother to get some sort of payment for their caretaking work.
Gina clasps her hands together underneath her chin, leaning forward in her chair. “It’s really hard,” she says, looking up at the ceiling, trying not to cry.
“It must be,” I say softly. “It must be especially tough to be a daughter and also a caretaker.” I pause, wondering aloud whether Gina had anyone in her life, maybe outside her family, who could step in to care for Ms. Carson while Gina takes a walk, or gets coffee, or goes to a movie to take a break.
“Nah,” she says. “So far, we’ve got it covered.” I tell her gently to remember the importance of self-care. She smiles and acknowledges that has always been tough for her. We are similar in more than one way, I think to myself.
When I return to my car, I realize that I haven’t taken any notes. I open my Moleskine and begin to scribble down her vital signs, physical exam details, and the other things I’d learned about Ms. Carson:
Pt appears comfortable, has supportive family, children assuming all care for mother. Not open to having others care for mom. Wary about hospice. Risk of burnout and distress. Needs SW consult, maybe payment for caregiving? Pt stable with current plan, will order physical therapy at home.
I place the Moleskine in the passenger seat and type the address of my next patient into my phone. I should be there in about fifteen minutes.
3:30 P.M.
I try unsuccessfully to ignore the hunger pains that twist my stomach. I turn into the next fast-food joint I see, a Del Taco. I scan the menu and decide on a bean burrito. I’ll eat it here, not in my car, where the probability of spillage is too high. I sit in a plastic booth, wolfing down my burrito in less than five minutes. On my phone, I read mindless celebrity gossip—the latest drama on a reality show I’ve never watched, the cheating scandal that caused two movie stars to split. I scroll through photographs of starlets wearing five-thousand-dollar dresses and thousand-dollar shoes, their makeup so heavy it looks like they are wearing masks. The awards shows they attend and some of the studios where they film their movies are not very far from the neighborhoods I cover. But they couldn’t be more distant.
4:00 P.M.
Mr. Bernard lives in a spacious two-bedroom apartment filled with sunshine. The walls are covered with photographs of kitchens and gourmet food; cookbooks fill an entire bookshelf. He tells me he was a chef at a fancy hotel before his heart failure worsened, robbing him of his breath and energy and appetite, leaving him instead constantly nauseous, dizzy, hopeless. He sits straight up in his hospital bed, almost at ninety degrees. He wears a blue T-shirt and scrub bottoms that belong to his wife, who works as a nurse. “Thank you for coming, Doctor,” he tells me. “My mother died in hospice and I knew that’s what I wanted for myself when the time came.” His wife looks away.
Mr. Bernard tells me that his intense nausea surprises him. He pats his belly, swollen with fluid that his failing heart and kidneys cannot remove. “I don’t know, maybe we should run a pregnancy test,” he jokes.
I examine his belly thoroughly. “I’m going to guess it’s a boy,” I tell him, my expression serious.
He laughs hard. “You sure it’s not a girl?”
“Well, all the old wives’ tales I’ve heard seem to suggest that when the belly is more round than oval, it’s probably a boy,” I joke, suppressing a chuckle.
“If it is indeed a boy, then I’m going to need to eat a lot more than I am right now before I give birth,” he says.
We talk about his nausea and his waning appetite. Sleep was his freedom from both. But he didn’t want to spend all of his time sleeping in his hospital bed; he and his wife hoped to go to a colleague’s restaurant opening, to spend an afternoon sitting on the lawn at the Getty. He lowers his voice and tells me one of the most degrading ways his body has changed: his legs have swollen to at least twice their normal size, and so has his scrotum. I examine him: deep imprints of my fingers remain in his legs minutes after I have pressed into his flesh. His scrotum has swollen to the size of a small grapefruit. He winces as I examine him gently for any sores or erosion of his delicate skin. “It’s surreal,” he tells me as I cover him with his blanket. “I don’t recognize my own body, this place I’ve lived for sixty years.”
His breathing is hard and his lips are pursed. I can tell he is trying very hard not to cry, and I tell him that it is okay to let go. Tears slide down his face and neck, leaving small moist circles on his pillow and darkening the collar of his shirt. “I was one of those hippies that did yoga and was a vegetarian, and during that time I really learned that death is going to happen for all of us, you can’t live your life fearing it,” he says, sniffling. “But then when it gets really close . . .” He covers his face, begins to sob.
I bow my head as sorrow shakes his body, revering this honest display of grief. “It is one thing for us to know logically that we will all die. But logic doesn’t somehow take away our emotions,” I say softly. We sit together for a while. His tears soak through tissues, and I give him fresh ones. His bedroom glows in the late-afternoon sunlight.
“Sometimes I wish I could just take a pill and go to sleep. The waiting, the sitting around like this . . . it’s killing me,” he says.
“I can only imagine,” I say, thinking back over the many patients who’ve told me the same thing, that waiting for death to come was a bit like waiting patiently for an assassin whose unknown arrival time tortured them more than knowing he’d kill them.
We talk about the medication that may relieve his nausea, the pill that may stimulate his appetite. We discuss ways to lessen the swelling in his legs and scrotum. We talk about his mood and outlook
; he isn’t suicidal and doesn’t think he’s depressed. He wonders how anyone could get through this period in life without hoping for a quick and easy way out. We focus on getting him to the Getty, tasting the food at the restaurant opening. He is embarrassed by the size of his legs, but tells me that he’ll have to bite the bullet and buy bigger pants. He tells me that he hopes his next birth will be in India. “I’m going to say a very stupid, white American thing. I love Indian food!”
“That makes two of us,” I say. “And that’s not stupid.”
I tell him that I’ll probably come back to see him in a week or so, but his nurse should visit tomorrow to make sure our plan is helping him to feel better. He reaches his arms out and I bend down to hug him. His wife thanks me and walks me to the door. Just as I leave the bedroom, Mr. Bernard calls out.
“One more question, Doctor. What the hell does an oval belly even look like?”
5:30 P.M.
I still have to write my notes on Maddy, Marco, Miss Jones, and the new patient that Dr. Lee referred to me. I race back to the hospital and rush to our basement office, grabbing a granola bar from the basket of snacks atop the refrigerator.
I log in to my computer, chewing on the granola bar, my head starting to hurt from the day and from my hunger. I just have to bang out five notes, I remind myself, shocked as always that over the course of such an intense day I had really seen only a handful of patients. I start with Maddy. It seems like I saw her days ago. When I click on her chart, a rectangular white box appears, informing me that I am entering the chart of a deceased patient. Did I still wish to proceed? I am surprisingly unemotional about this. I wonder if it is my exhaustion from the day, or the necessary detachment that I am cultivating. All I feel is surprise that she died so quickly.