Psychology Today
Picture Credits: Isha Foundation
A hospice physician reveals the messy, paradoxical reality of dying, where families fight for control even as life slips away. Death, far from peaceful, is raw and visceral—but also deeply meaningful. Bearing witness to this process strips away fear, grounding us in love, connection, and the truth of being human.
The Paradoxes of Dying
Author: Charlotte Grinberg, M.D.
A hospice physician on why the desire to keep death at bay prevents us from experiencing some of life’s most meaningful moments.
When I tell people I’m a hospice physician, the most common response is something along the lines of, “That must be so meaningful—helping elderly people in their final moments.”
I nod politely. But the truth is much more complicated. Most people imagine hospice as a peaceful closing chapter: quiet rooms, loved ones gathered at the bedside, and a person dying quietly in their sleep. Sometimes that happens. But far more often, end-of-life care is mysterious, messy, emotional, and full of physical and medical vicissitudes.
I remind myself, and the teams I work with, that we are caring for the sickest and most medically complex patients in the entire health care system. Rare diseases with no effective treatments. Cancers that have progressed despite the most promising new therapies. Patients with multiple, overlapping medical and psychiatric conditions whose stories are long and difficult to follow. And despite common assumptions, many hospice patients are in early or middle adulthood.
Multiple times a month, I sit at the bedside of someone close to my age, early 30s, but that person is actively dying, and their partner and young kids are overwhelmed with sadness. Many patients who were previously healthy with no known risk factors have suffered sudden accidents or been diagnosed with a terminal illness, brutally altering their life’s trajectory. Death happens to everyone, and often not the way we imagine or expect it.
By the time of hospice enrollment, patients and families are exhausted. They have been in advocacy mode through countless appointments and hospital admissions. Many have developed mistrust—of medicines, of clinicians, of the entire system. They feel abandoned by their previous doctors. They have been told, “There is nothing more we can do for you.” They have a hard time believing that this time, the medical situation is truly irreversible. They don’t even want us to use the word hospice, worried it will hasten death. We are sometimes called “angels of death.”
Instead, patients and families grasp control in whatever form they can: dictating which comfort medications they will accept, how often, and at what dose. They Google everything. They ask for labs and for imaging—things we gently explain are not part of the hospice care benefit. They still ask again. I now write more prescriptions for antibiotics and physical therapy than I ever did in primary care. My authority and recommendations as a physician are superseded by denial, optimism, and anticipatory grief. More of my patients call 911 now than they did in primary care even though they have opted for hospice and the rule is to call hospice not 911. But I understand why: Our patients and their loved ones are human, and when they experience what feels like a crisis, they panic and want to feel that they are doing everything they can.
I’ve learned how desperately people want to live—not just young patients, but middle-aged, elderly, everyone. People want more good time. This is where difficult choices and sometimes polar opposite decisions come in. These decisions may look confusing and paradoxical to the outside observer, but to me, they all reflect the desire for control until the very end. Patients don’t want to feel sleepy from medications, but they also want to be pain-free. They don’t want to decline physically or cognitively in front of their loved ones, worried it will distort memories of their once-independent selves. They have strong feelings about exactly how and when they will die. Or they feel so afraid or unfamiliar with death, they don’t acknowledge what is inevitably happening.
One patient’s sister brought her to the emergency department every time she spiked a fever, despite being on home hospice. “I know she’s dying of cancer,” she told me, “but I’m not going to let her die of pneumonia.” I tried to explain that infections are often the final pathway in end-stage metastatic cancer, or that cancer can cause fevers without there being an infection. But these medical explanations didn’t bring her comfort. She wanted to try to fix the part she felt she could fix.
Hospice is full of these contradictions: Treatments. Futility. Sedation. Wakefulness. Home. Hospital. Interventions. Comfort. Asking for medical advice. Declining said medical advice. People change their minds hour by hour, day by day. Families argue, among themselves and with hospice staff. They grieve out loud and in opposing directions. One member of the hospice team may have a long, emotional talk with a patient, only to learn the next day that someone else from the team had a very different conversation, with a very different takeaway. There is confusion, anger, sadness, and physical discomfort, all of which cloud processing and judgment.
And yet—despite this, or maybe because of it—there is a profound meaning in death that I learn as I grow professionally and personally each day. Not the simplified “final peaceful moments” people tend to imagine, but a more complicated kind: the meaning that comes from being present when people are at their most vulnerable, most volatile, most human. The kind of meaning that comes not from controlling the outcome, but from closely accompanying someone through difficulty. It’s humbling. It offers perspective. It gives gratitude. People often can’t believe I work full-time and have five children under the age of 9, but my hardest days as a physician and parent are gifts of choice and life.
As a society, we need more experience of and openness to the complexity of death and dying. More acknowledgment of how deeply emotional and physical the process really is. The realization of how family and community are necessary to humanity. The love that is expressed when waking up in the night to offer care and comfort. Bearing witness to visions of deceased family members opening their arms in the light with welcome. The muscle wasting. The long pauses in breathing where you think each breath is the last one but it lasts for days. The agitation. The grimacing and gurgling. The moaning.
Someone recently told me: “When my first parent died, I was so scared and afraid. But then hospice provided the knowledge and support of what the normal dying process looks like. When my second parent died, the experience was more meaningful.” She went from worrying that her mom was starving from the lack of food and water to understanding that her dad’s body was naturally shutting down. The body is supposed to die. It knows how to die. It’s nature. But if we don’t hear that or experience that, we don’t know it. I can tell who has comfortably walked the journey of death before by how they sit with and talk about death.
One of the most powerful moments of my career was when I invited people to tour an inpatient hospice facility and share dinner while talking openly about death and dying. Any question about death could be asked and would be answered honestly. We stood together as a group in a room where a person had just died hours before, the floor still wet from the mop. Afterward, one person told me, “I was speechless during the experience. But afterward, it made death feel a little less scary.”
I think that’s what discussing and witnessing death does. It grounds us more in the finality of life. It strips away euphemism and avoidance and replaces them with something harder—but ultimately more healing. People fear death as something abstract and distant, but it’s one of the most physical and connecting experiences in life.
Death, like birth, is messy, raw, and visceral—yet filled with awe and love. I’ve gone through natural childbirth with my children, and amid the tears, the contractions, the sweating, the cursing, the overwhelming feeling of uncertainty, and the loss of control, there is my greatest strength and growth. Being present throughout the process, bearing witness, can create the conditions for deep connection and also for closure. It is in these moments that the living—and the dying—see the process for what it is, not what they imagined or feared.
Credits: TCA, LLC.