The Conversation We Avoid: Confronting Death in Modern America
“To die will be an awfully big adventure.”
— Peter Pan, J.M. Barrie
Death is something every human will face. Yet in modern American life—especially in healthcare—we treat it like a surprise. It’s rarely discussed openly. Even in the medical field, where death is a frequent visitor, we don’t always know how to talk about it. Only 17% of Medicare patients report ever having a conversation with their doctor about end-of-life preferences (Barnato et al., 2007). That avoidance isn’t just a missed opportunity for patients. It also intensifies suffering, drives up costs, and contributes to provider burnout.
The Hidden Costs of Avoiding Death
In 2018 alone, the U.S. spent approximately $365 billion on care for individuals in their last year of life—roughly 10% of total healthcare spending (Cox, 2020). These aren’t just bills and machines. They represent rushed decisions, repeated hospitalizations, and an unspoken hope that maybe, just maybe, we can put off the inevitable.
But for many families, the last chapter is not one of peace or preparation. It's one of crisis management. By the time hospice is considered, the average length of stay is just 17 days—and one in ten patients is enrolled for two days or fewer (National Hospice and Palliative Care Organization [NHPCO], 2023).
A Mismatch of Wishes and Reality
“Death is but the next great adventure.”
— frequently attributed to Peter Pan, though popularized in Harry Potter
About 80% of Americans say they’d prefer to die at home, surrounded by loved ones (Stanford School of Medicine, 2016). But only about 20% actually do. Instead, nearly 60% die in hospitals, and another 20% in nursing facilities (Stanford School of Medicine, 2016). The result? A final experience that doesn’t reflect the person’s wishes, but rather the inertia of a system that defaults to intervention.
This mismatch doesn’t only affect the dying—it shapes the grief of those left behind. When families aren't equipped to honor their loved one’s preferences, they're more likely to struggle with guilt, regret, and complicated grief. And when those preferences are never even voiced? The weight of uncertainty is its own burden.
The Cultural Distance from Death
Modern medicine trains clinicians to fix, to fight, to intervene. But it doesn’t always train them to recognize when the fight might no longer serve the person in the bed. Many medical students first encounter death during clinical rotations—and studies have shown they often feel unprepared, emotionally overwhelmed, or even traumatized by the experience (Wear, 2002). Over time, that emotional load, compounded by the silence around death, becomes a factor in moral injury and burnout. We’ve built a culture where death is a medical failure instead of a life event. And in doing so, we’ve made it harder for providers and patients alike to talk honestly about the end.
When Value-Based Care Enters the Room
The rise of value-based care has reshaped many areas of medicine—and end-of-life care is no exception. In this model, providers are incentivized to reduce unnecessary spending and improve patient outcomes. On paper, this sounds like a win-win. Fewer hospitalizations, fewer duplicative tests, more thoughtful, coordinated care.
But death isn’t just a clinical endpoint. And sometimes, value-based care pressures providers into conversations they weren’t previously having—not because the patient is ready, but because the system wants to avoid cost. Avoiding the so-called “vicious cycle” of hospitalization (admit, treat, discharge, return) is a valid goal. Many of the costs in the final year of life are tied to aggressive, repeated interventions that may not change outcomes, but carry significant emotional and physical tolls (Cox, 2020; Kelley et al., 2013). It makes clinical sense to prevent those spirals before they begin. But here’s the problem: when the motivator is the money, patients can feel it.
Referring someone to hospice or palliative care because it’s cheaper creates a kind of ethical dissonance. Yes, hospice is almost always less costly than hospitalization. Yes, it can provide better pain control and family support. But those aren’t the reasons that matter most. The sacredness of the decision—to continue treatment or shift toward comfort—deserves to be led by the patient’s values, not the payer’s spreadsheet.
When the why behind a conversation is misaligned, even the right recommendation can land wrong. Families sense when a provider is trying to “get them off the books.” And that suspicion, even when unspoken, undermines trust. A hospice referral offered too early—or with the wrong tone—can feel like abandonment.
And yet, value-based care can be a force for good. It puts overdue pressure on healthcare systems to have these hard conversations earlier, when patients can still speak for themselves. It encourages proactive planning. It highlights the futility of defaulting to full-code, hospital-based care for someone who’s quietly telling us they’re ready to rest. So maybe this moment is a paradox. Value-based care is urging clinicians to talk about goals of care sooner. And, this is clinically and ethically appropriate. But we must be vigilant that these conversations are offered not just early, but earnestly and from a place of care, not cost-cutting.
This tension makes clear why the intent behind the conversation matters. Dying is too sacred to be steered by misaligned incentives. The patient’s voice—not the financial model—must be the guide. The goal isn’t just fewer hospitalizations. It’s better goodbyes.
The Need for Informed, Supported Choices
“To live would be an awfully big adventure.”
— Hook, 1991
Some people want to fight for every moment. Others want comfort, clarity, or simply to stay home. Neither choice is right or wrong. But the key is that it should be their choice—made with the right information, the right support, and enough time to think clearly. That’s not what typically happens. Families are often faced with acute, big decisions—ventilation, ICU stays, chemotherapy—without a clear understanding of the trade-offs. And when loved ones disagree, the emotional weight of these decisions grows heavier.
Hospice and palliative care can offer a different path; one that is focused on pain relief, emotional support, and dignity. But these services are often introduced too late to be fully effective. When hospice is treated as a last resort, we miss what it was designed for: to create time and space for reflection, presence, and peace.
Bridging the Conversation
Talking about death is hard. It forces us to confront pain, loss, and the limits of medicine. But doing so can transform fear into peace. By discussing end-of-life wishes openly, we honor the person who is dying and also support those who will grieve. These conversations shouldn’t be left solely to doctors or crisis moments. Friends, clergy, therapists, and community groups can all play a role in normalizing and guiding these talks.
Recognizing the need for this guidance, Storyline offers a dedicated service to help navigate these moments. We help patients clarify their health histories, understand their options, and prepare to make decisions that align with their values. We facilitate conversations that often go unspoken until too late. We will talk to you about goals of care, quality of life, and how someone wants to be remembered.
Through structured guidance, clear documentation, and compassionate listening, Storyline helps individuals and families move from confusion to clarity. Whether someone wants to pursue every possible treatment or prioritize time at home, the most important thing is that they feel informed, supported, and known.
References
Barnato, A. E., Anthony, D. L., Skinner, J. S., Gallagher, P. M., & Fisher, E. S. (2007). Racial and ethnic differences in preferences for end-of-life treatment. Journal of General Internal Medicine, 22(4), 427–434. https://doi.org/10.1007/s11606-006-0040-6
Cox, C. (2020). How much does Medicare spend on the last year of life? Peterson-KFF Health System Tracker. https://www.healthsystemtracker.org/chart-collection/what-does-the-data-say-about-spending-in-the-last-year-of-life/
Kelley, A. S., Covinsky, K. E., Gorges, R. J., & Smith, A. K. (2013). Identifying older adults with serious illness: A critical step toward improving the value of health care. Health Affairs, 32(10), 1801–1810. https://doi.org/10.1377/hlthaff.2013.0055
National Hospice and Palliative Care Organization (NHPCO). (2023). Facts and figures: Hospice care in America. https://www.nhpco.org/hospice-facts-figures/
Stanford School of Medicine. (2016). Where Americans die—and why. Stanford Medicine News Center. https://med.stanford.edu/news/all-news/2016/05/why-so-many-people-die-in-hospitals-against-their-wishes.html
Wear, D. (2002). “Face-to-face with It”: Medical students' narratives about their end-of-life education. Academic Medicine, 77(4), 271–277. https://doi.org/10.1097/00001888-200204000-00001
