“I feel like a forgotten person.” The words of a 45-year-old man hung heavy in the small, shared room of a nursing home. The faint stench of urine lingered in the air, and our conversation was frequently interrupted by elderly, confused residents calling out, “Help me.” The space did not feel like a dignified place for anyone to die, let alone such a young man.
During one of Lu’s initial hospice visits (name changed to protect privacy), he spoke of his mother’s struggle with illicit substance use, the death of his father, his years spent in prison, and turning to street drugs to manage the challenges of being homeless.
The years of pain and struggle had culminated in a diagnosis of heart failure. The reality of managing a serious illness while navigating the daily challenges of staying warm, finding a place to sleep, securing something to eat, and an untreated addiction caused his condition to rapidly worsen, resulting in a terminal prognosis.
When asked how severe his pain was on a scale of zero to ten, Lu replied, “I live at a 7.” Despite being on hospice care, many healthcare professionals remain resistant to administering opioids to people with substance use disorders. There are common biases that these individuals have “made bad choices,” are “just seeking drugs,” or “should live with the consequences.” Those who are homeless, belong to different racial or ethnic backgrounds, or are women often find that their reports of pain are taken less seriously, and as a result, they are frequently under-treated.
As a hospice nurse, I focus on providing comfort and improving the quality of life for people at the end of life. I strive to help them live as fully as possible in their remaining days. For many, the most important goal is to avoid suffering—to be free of pain.
Over the last decade of working in the American healthcare system, I have come to understand that physical pain is only one part of the story. Emotional, social, and spiritual suffering, referred to as total pain by Dame Cicely Saunders, often goes unacknowledged, yet deeply shapes patients’ experience of living, becoming ill, and dying.
The dimensions of pain
Although pain can be defined in many ways, chronic pain is commonly described as physical pain experienced on most days for three months or longer. According to the Center for Disease Control (CDC), 1 in 5 Americans experience chronic pain, making it a common reason for seeking care.
A more debilitating form, known as high-impact chronic pain (HICP), limits a person from participating in daily activities such as working, going to school, or taking care of themselves. Alarmingly, around 8 in 10 people with HICP are unable to maintain employment.
With most US citizens receiving health insurance through their employer, many people living with chronic pain face barriers to accessing essential pain management services due to the high cost of healthcare. While working on an oncology floor, one patient who was navigating end-stage blood cancer and had gone bankrupt due to medical bills tearfully told me, “I cannot afford to live.”
Pain is rarely just physical. Total pain describes suffering that extends beyond the body and touches the emotional, spiritual, and social dimensions of our lives. It is the pain of feeling like a “burden” when needing extra care, the weight of isolation and loneliness, the despair of losing one’s sense of purpose, and the fear of dying. As one patient told me after going through a profound loss, “My whole being hurts.”
Comprehensive pain management must address each of these layers, not just treat a set of physical symptoms. This pain is not easily palliated, and sometimes the most radical act of healing can come from offering our full, compassionate presence. However, pain continues to be unequally distributed and inappropriately addressed.
The unequal burden of pain
Despite the availability of pain-relieving services, many groups in the United States do not have equal access to these resources due to racism, sexism, and socioeconomic disparities.
Studies have consistently shown that Black and Hispanic patients are less likely than White patients to receive pain medications within the American healthcare system. When opioids are prescribed to these patients, they are often given at lower doses and for shorter durations.
As a hospice nurse, I have witnessed this disparity firsthand. While caring for a Black woman in the Intensive Care Unit who was actively dying, I observed clear nonverbal signs of pain—groaning, facial grimacing, and restlessness. Her family expressed how difficult it was to watch her suffer. When I approached the physician to advocate for pain relief, my request was denied. The physician simply responded, “I don’t believe in morphine.”
Provider bias and racism not only prevent patients from receiving essential pain management but also send a harmful message to marginalized groups, one that may discourage them from seeking care in the future.
Understanding the opioid crisis
While opioids serve a vital role in managing pain, opioid abuse is a major public health issue in the United States. A significant portion of the conversation around opioid addiction focuses on the most recent epidemic that emerged in the 1990s, when prescription opioids became widely available in predominantly white communities.
After public outcry and a tragic increase in overdose deaths related to illicit opioid use, physicians were pressured to curb opioid prescriptions, even in cases where they were medically appropriate. As economic opportunities diminished and social support systems were eroded, largely due to government officials handing over control to corporate interests, many in working-class white communities turned to the streets. Here, drugs like heroin and fentanyl offered cheaper alternatives to manage both physical and total pain.
Yet this narrative overlooks an earlier history of opioid addiction in the United States that affected Black communities long before the 1990s. Throughout the 20th century, Black individuals faced waves of opioid addiction perpetuated by systemic racism, cycles of poverty, over-policing, and inequitable access to healthcare services. Instead of a public health response, these communities were met with criminalization.
According to Human Rights Watch, Black men are incarcerated in state prisons for drug offenses at a rate 13.4 times greater than white men. Substance use disorder is one of the only medical conditions with criminal consequences, with legislation often reflecting racial biases. The effects of mass incarceration of Black individuals devastate every aspect of life, inflicting emotional trauma, creating economic instability, blocking educational opportunities, and compounding total pain.
Today, the opioid epidemic continues to exert a devastating toll. Strain on the healthcare system, social services, and criminal justice system has led to worse public health outcomes. In 2022, approximately 82,000 people died in the United States from opioid overdoses, with Black individuals experiencing sharper increases in rates of opioid-related deaths than white individuals. In one rural jail in Alamosa, Colorado, 90% of its inmates were reportedly incarcerated for drug-related offenses or were struggling with addiction themselves.
Solutions rooted in equity and compassion
Every person deserves access to safe and effective pain management. There are actionable steps that can be taken by healthcare professionals and at the legislative level to promote equitable access to pain management and healthcare more broadly.
Clinicians must treat a patient as a whole person, recognizing and addressing not only their physical pain but total pain as well. Interdisciplinary teams can be used to ensure patients receive comprehensive resources, such as mental and spiritual health services. Opioids should be prescribed thoughtfully, and education should address patients’ understandable fears and misconceptions around their use.
Honest conversations about goals of care are essential for patients with life-threatening illness and poor prognosis, including how to best promote quality of life and manage pain, irrespective of whether they undergo or forgo curative treatment. Equally important is the need for clinicians to examine and dismantle their own biases and racism to ensure that each of their patients receives high-quality care, regardless of race, sex, or socioeconomic status.
At a policy level, it is long overdue for the United States government to make meaningful investments in the public health of its people. Enacting policies such as universal healthcare (often referred to as “Medicare for All”) would ensure more equitable and affordable access to medical care. Additionally, investing in education, affordable housing, a livable minimum wage, and community infrastructure is an essential step toward addressing the root causes of health disparities.
The harsh criminal penalties for nonviolent drug offenses have filled our prisons, doing nothing to solve the problem and actively causing harm, especially among communities of color. A more compassionate approach would recognize addiction as a health issue and offer accessible, affordable treatment instead of incarceration.
The phrase “Pain: Pay Attention Inward Now” is often used in mental health contexts to ask individuals to explore the roots of emotional pain. It is also a timely call for the Global North to turn its gaze inward⎯ toward those who are suffering at the growing margins⎯ and to confront the systems that perpetuate that suffering. In doing so, we move closer to a world where everyone receives the relief they deserve, and honor Dame Cicely Saunders’ reminder, “You matter because you are you, and you matter until the end of your life.”
Edited by Parth Sharma.
Image by Gayatri.
