By Sunita Puri January 20, 2016, New York Times
In my first year of practice in palliative medicine, I made house calls to patients in South Los Angeles. My patients all lived inneighborhoods that ranked among the city’s lowest in both income and life expectancy. In these neighborhoods, people die an average of 10 years earlier than those who live less than 10 miles away. Many of my patients felt that they had barely lived their lives when I showed up, ostensibly to help them “die with dignity.”
Death may be humanity’s great equalizer, but the inequalities suffered in life – leading to a shorter life expectancy – become inequalities in the experience of dying as well.
When I began my career, I had naïvely assumed that, if time were short, who wouldn’t prefer the familiarity of home and palliative medicine’s focus on quality of life to the chaotic mess of the hospital? But I’ve learned that even when my patients accept hospice services, the proverbial “good death at home” is often out of their reach. Fully experiencing the benefits of home hospice requires resources: involved, dedicated family members. Money to afford caregivers, particularly in the absence of involved family members. A neighborhood whose local pharmacy actually stocks opiate medications for severe pain. Insurance that covers stays in nursing homes so that family members can simply be family members instead of caretakers.
Without these luxuries, which so many others take for granted, dying at home could actually be less comfortable than dying in the hospital. Over this past year, I have stepped across the wide gap between my idealistic conception of hospice care and the reality of providing it amid life circumstances that shape the circumstances of dying.
When I drive to see my first patient of the day, I notice that someone has hand-painted a portrait of a young man with a double chin, small mustache, and short, spiky hair onto the side of a commercial building. The caption: “R.I.P. Always in our hearts.” An advertisement on a nearby bench at a bus stop offers a summer discount on funeral arrangements. I park and walk past a home with a cross made of fresh pink flowers nestled against a fence. A photograph of a young man rests against it.
Loss lives everywhere here.
I wait on the concrete porch next to a brown paper bag filled with used blue hospital gloves and empty hand sanitizer bottles. The patient, whom I’ll call Sergio, 45, smiles widely from his bed, five feet from the door. His smile is outgrowing his shrinking face. He waves with his left hand, his right arm tethered to an IV providing gentle fluids. Stomach cancer has blocked his bowels, setting off nausea and vomiting if he takes even a sip of water.
There is an open photo album on the bed. “I wanted to show you who I used to be,” he tells me, speaking softly in Spanish. I barely recognize him in the photos: Eight months ago, he was a round, jovial man who lived in cotton T-shirts and a-size-too-small jeans, his wife’s arms wrapped tightly around his muffin top. Neither he nor his wife, Maria, have family in the United States. “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 occasional help of a neighbor, Maria tries her best to get him in and out of bed, bathe him, and give him different medications. “Is this one for pain or 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 has shown her how to give one medication if Sergio has pain, another if he is nauseated – but Maria is hesitant to administer them, as so many caregivers are.
Maria’s dual role as wife and caregiver is particularly difficult because she does not have family or friends who can help her care for Sergio. “I don’t know how to take care of someone like you can,” she tells me again and again. “What if I miss an early sign of a problem? I could never forgive myself if I missed something, if he suffered because I am not a nurse and we have no help here.” Her worry keeps her awake at night, watching the rhythmic rise and fall of Sergio’s chest, alert to changes in its tempo, fearful she’ll be asleep if it suddenly halts.
I act out the various ways Sergio’s body might demonstrate distress. “Does he ever breathe like this?” I ask in Spanish, imitating the rapid, shallow breathing that comes with either cancerous fluid or a blood clot clogging up the lungs. She shakes her head. I re-explain the nausea and pain that may accompany even the tiniest sip of water. I show her which medications can be useful to treat each symptom. 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.
Since Sergio’s pain and nausea are well controlled at home, he is not eligible for admission to the hospital or a nursing home or one of the rare independent hospice facilities in the area despite his need for close supervision and caregiving. Like most of my patients, he is sick, but not sick enough to justify transfer to a facility. I feel a heaviness in my chest when I remind Maria, again, that hospice cannot pay for caregivers or place Sergio in a nursing facility or hospital amid professional caregivers for his short remaining time, unless his symptoms were to become completely uncontrollable at home. She always asks me why. “I wish I knew. I wish our system was different,” I tell her, silently wondering why I have seen our health care system pay for last-ditch-effort chemotherapy for a dying patient but not for one trained caregiver to help if they simply desire comfort at home.
I think ahead to my next visit in Baldwin Village with Janice, a woman in her 60s with advanced breast cancer. Because she is estranged from her children and sisters, her landlady and two friends from church take turns caring for her. “Just list Jesus Christ as my emergency contact,” she snapped at me once. “You can’t trust nobody, especially not family.” After Janice, I will see Joseph, a veteran in his early 50s whose lung cancer has spread to his bones. Even though he needs opiates to control the extreme pain his cancer causes when he tries to walk, he refuses to fill the prescription because he is afraid of being robbed and harmed if “the youngsters find out I have that stuff in my house.” I will then visit 56-year-old Jorge, who has Lou Gehrig’s disease. On my last visit, I found him alone at home, unable to reach for his medication for shortness of breath. He explained that his wife was returning from working an extra shift to make up for the income he could no longer provide. In three days, she will have enough money to pay for help, he reassured me and our team social worker.
I constantly wonder whether, given these life circumstances, my patients fully benefit from the care my team and I try to provide. Aside from assessing symptoms and providing medications to ease them, perhaps just treating what I can with compassion is the best I can do for them. Still, I try to find some meaning in these visits, in the visits that preceded them, in all the visits that await, so that I can get up tomorrow and do this imperfect work again.
My patients offer a vivid lesson in accepting inexplicable circumstances and choosing to live the best they can. I witness their hard-won wisdom and dignity and strength – and I know that these, too, are not things hospice can provide. Wisdom and dignity and strength have nothing to do with social or economic status or one’s neighborhood. Yet they are perhaps the most essential components to the very private, internal process of making peace with life as part of the process of dying.
I return home in the early evening. I think of Janice’s rant about her daughter’s “wanting to take care of me so she can get my money.” I remember Joseph’s willingness to finally try the smallest possible dose of morphine if I could help him find a safe place to hide it. I think of calling Jorge’s wife to confirm that she will hire a caregiver this week, gently reminding her of the many reasons Jorge cannot be left alone at home.
I have taken the lessons my patients taught me last year into the hospital, where many patients want to spend their last phase of life at home. As more Americans discuss their end-of-life preferences with their physicians, I anticipate that many patients will state they prefer to die at home, and the option of hospice will be likely to figure prominently in these conversations.
But eliciting these preferences is not enough. We must ask about the social and economic realities they face that may preclude benefiting fully from home-based hospice. The earlier we understand these obstacles, the more easily our care teams can pragmatically help a patient and family plan around them. And if home is not the best place for some to receive hospice care, our health care system must recognize this and find alternative places to provide end-of-life care, including inpatient hospice and palliative care facilities that can accept patients at different stages of the dying process – not just when their symptoms become uncontrollable at home. We need to provide all patients – not only those who enjoy socioeconomic stability – with the comfort and dignity they deserve at life’s end, regardless of the inequalities that have shaped their lives.