Expanding Our Understanding of Hope by Recognizing the Unrecognized Losses of Patients, Families, and Caregivers
“You remember,” Dr. Elisabeth Kübler-Ross said, pointing her finger inches from my face with unmistakable conviction, “hope does not mean cure.”
In honor of what would have been Dr. Elisabeth Kübler-Ross’s 100th birthday, I have reflected often on those words. More than 20 years have passed since my mentor first spoke them to me, yet they continue to shape the way I understand hospice. At the time, I believed I understood exactly what she meant. Hope meant helping people live fully even when cure was no longer possible. It meant preserving dignity, relationships, meaning, and love until the very end.
Today, after four decades as a hospice social worker, psychotherapist, master grief coach, and organizational consultant, I believe hope asks even more of us.
Hope requires us to recognize the many losses that begin long before death.
One of my greatest teachers, who taught me about hope, was not a professor or researcher. He was a seventeen-year-old high school football player named Jason.
On a Monday night, you could find us comfortably sprawled across his well-worn olive-green couch that had once held the weight of nursing babies and now cradled a dying teenager.
The football game was on, and the nine of us, eight rowdy high school football players and me, took turns predicting the MVP, the final score, and, of course, who would score the last touchdown. We cheered, groaned, laughed, and argued over every play as if the only thing that mattered in the room was football.
But everything that mattered was in that room.
Jason would never play football again.
His parents were quietly preparing to lose their son.
His friends were beginning to lose the future they had imagined together.
None of us spoke about death during Monday Night Football.
Yet every one of us was carrying loss.
Looking back, I realize Jason was teaching me something I would spend the next forty years trying to understand that my mentor Elisabeth understood. Hospice does not begin when someone is dying. Hospice begins when someone chooses to remain present with another person’s losses. Those losses begin long before death, and they extend far beyond the patient.
For decades, hospice has transformed the experience of dying. Its interdisciplinary philosophy has helped millions of patients and families navigate serious illness with compassion, dignity, and expert symptom management. Modern hospice rightly recognizes that excellent end-of-life care attends not only to physical suffering but also to emotional, social, and spiritual needs.
At the same time, hospice professionals have become increasingly aware of another reality. The work of accompanying people through serious illness is emotionally demanding. Research has documented the impact of compassion fatigue, cumulative grief, moral distress, burnout, and workforce exhaustion among hospice and palliative care professionals. Healthcare organizations have appropriately responded by emphasizing resilience, reflective practice, peer support, and caregiver well-being.
These efforts are essential.
Yet I wonder if they point toward something even more fundamental.
Throughout my career, I have observed that what most influences how people experience serious illness is often not the losses they readily identify, but the ones they have not yet recognized.
I refer to these as unrecognized losses.
Unrecognized losses are the physical, emotional, relational, spiritual, occupational, and existential losses that accompany change but have not yet been identified, acknowledged, understood, or integrated. Although they often remain unnamed, they continue to influence how people think, feel, relate to others, make decisions, and respond to life’s challenges.
Patients experience far more than the anticipated loss of life. Long before death, they may grieve the loss of independence, identity, privacy, confidence, purpose, physical abilities, future dreams, familiar roles, financial security, or control.
Families carry their own succession of losses. Daily routines change. Roles shift. Relationships evolve. Future plans are quietly rewritten. Parents lose the life they imagined for their child. Spouses lose the partnership they once knew. Children begin grieving a parent who is still physically present.
These losses deserve to be recognized because they shape every conversation, every decision, and every expression of hope.
But there is another group whose losses we discuss far less often.
The caregivers.
Hospice professionals enter this work because they believe in compassionate presence. Nurses, physicians, social workers, chaplains, nursing assistants, volunteers, bereavement coordinators, and leaders willingly accompany individuals and families during some of life’s most sacred moments.
But they do not arrive at the bedside untouched by life.
Each caregiver carries a personal history of loss.
Some losses are recognized.
Others remain unrecognized.
A nurse may be caring for a dying patient while privately worrying about her own aging parents.
A physician may quietly carry the emotional weight of every family whose suffering could not be eased as much as hoped.
A social worker may still be integrating the death of a patient who reminded him of his own child.
A chaplain may struggle with questions that have emerged after witnessing years of profound suffering.
A hospice leader may carry the responsibility of supporting an entire team while navigating significant personal loss at home.
None of these experiences diminish professional competence.
They remind us that caregivers are human.
And our humanity inevitably enters every room we walk into.
When caregivers are given opportunities to recognize and reflect upon the losses they carry, they often discover greater self-awareness, deeper empathy, healthier boundaries, and renewed capacity to remain present. When those losses remain unrecognized, they may contribute to emotional exhaustion, compassion fatigue, moral distress, disengagement, or burnout.
Perhaps this is one reason reflective practice, interdisciplinary support, and psychologically safe work environments are increasingly recognized as essential components of high-quality hospice care. They provide more than emotional support. They create opportunities for recognition.
Recognition changes people.
When patients feel that someone recognizes what they have lost—not only the possibility of cure, but the many parts of themselves that have already changed—they often feel less alone.
When families hear someone name losses they have struggled to describe, they frequently experience relief.
When caregivers are given permission to acknowledge their own humanity, they become better able to remain fully present with the humanity of others.
Imagine if every interdisciplinary team meeting occasionally asked two simple questions:
What unrecognized losses might this patient and family be carrying?
What unrecognized losses might we be carrying that could influence how we care for them today?
These questions are not distractions from excellent hospice care.
They are expressions of it.
They invite humility instead of assumptions.
Curiosity instead of judgment.
Connection instead of isolation.
Presence instead of performance.
Perhaps this is the next evolution of hospice.
Not changing its philosophy, but deepening it.
Elisabeth Kübler-Ross taught us that hope does not mean cure.
Jason helped me understand something more.
Hope also begins when another human being recognizes the losses we carry and chooses not to let us carry them alone.
As hospice professionals, we have always walked beside patients and families through life’s final chapter. As we look toward the future of hospice, perhaps we are also being called to care more intentionally for one another.
Because the future of hospice will not be determined solely by how well we manage symptoms or coordinate services.
It will also be determined by how well we recognize the unrecognized losses carried by every person within the circle of care.
Patients.
Families.
Volunteers.
Nurses.
Social workers.
Physicians.
Chaplains.
Leaders.
Every one of them carries losses.
Every one of them deserves to be seen.
At its heart, hospice has never been only about preparing people for death.
It has always been about helping people live as fully as possible in the presence of loss.
Perhaps the next chapter of hospice begins by ensuring that no one—patient, family member, or caregiver—is expected to carry those losses alone.
References
Kübler-Ross, E. (1969). On Death and Dying. New York: Macmillan.
Figley, C. R. (1995). Compassion Fatigue: Coping with Secondary Traumatic Stress Disorder in Those Who Treat the Traumatized. New York: Brunner/Mazel.
Maslach, C., & Leiter, M. P. (2016). Burnout. In G. Fink (Ed.), Stress: Concepts, Cognition, Emotion, and Behavior (pp. 351–357). Academic Press.
National Hospice and Palliative Care Organization (NHPCO). (2023). NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA.
Sinclair, S., Raffin-Bouchal, S., Venturato, L., Mijovic-Kondejewski, J., & Smith-MacDonald, L. (2017). Compassion fatigue: A meta-narrative review of the healthcare literature. International Journal of Nursing Studies, 69, 9–24.
