The room is cold. A ventilator pushes air in and out of a chest in steady, mechanical intervals while a family of four stands against the far wall, watching. Nobody warned them this would happen. At last spring’s annual physical, no one asked what this man would want if something went wrong on the table, and now nobody in that room knows.
This plays out every day in intensive care units across the country. Between 20 and 30 percent of all Americans who die each year do so in an ICU, and nearly 60 percent of ICU admissions end in death. Most of those patients never wrote down their wishes. Most of their families were never asked.
What Providers Call a “Bad Death”
A 2026 study published in the journal Surgery asked a direct question of surgical ICU providers: What does a bad death look like? Forty-six providers across 14 Veterans Affairs facilities responded, and their responses pointed to four patterns, all painful and largely preventable.
Pain That Was Allowed to Continue
He says “fine” every time a nurse asks, because he does not want to be a burden. He grimaces during the wound check and holds his breath when repositioned. He dies four days later in the same pain he arrived with, not because nothing could be done, but because no one knew the depth of what he was carrying. That is poor symptom management in real life. Not a clinical term. A person suffering when they did not have to.
Treatments That Helped No One
A woman with advanced cancer, organ failure already beginning, receives her fourth aggressive intervention in two weeks. Her family said yes to each one because no one told them there was another path. The care team kept treating her, not because it would save her, but because no one had opened another door. Providers called this nonbeneficial care, and it weighs on every person in that room long after the patient is gone.
Conversations That Came Too Late
“We didn’t know he felt that way.” Something close to that sentence gets spoken in ICU family meetings more often than anyone outside that setting would guess. When goals-of-care discussions happen only after a situation has become clearly irreversible, families are blindsided, and care teams are left trying to redirect treatment while a person is actively dying.
No Chance to Say Goodbye
Sedated. Alone. A family in a waiting room who had no idea the end was hours away. Providers described this as a lack of closure, and of all the features they named, this was the one that stayed with them on the drive home.
Most People Do Not Plan to Die Here
Where Americans Say They Want to Die
Ask almost anyone. Home. Surrounded by people they love, without machines, without strangers making decisions about their body. That preference is nearly universal, and it holds across age groups, income levels, and backgrounds.
Where Americans Actually Die
Still, between 20 and 30 percent die in an ICU. A 2026 study did find that hospice discharges following ICU admissions increased from 5.6 to 6.8 percent between 2011 and 2023. Progress, genuinely. Even so, the overwhelming majority of patients who do not survive their ICU stay are never transitioned to comfort-focused care in time to matter.
The Gap Between What Patients Want and What Happens
When Treatment Goals and Patient Goals Don’t Match
Thirty-seven percent. That is the share of patients with advanced cancer who preferred comfort-focused care and instead received life-extending treatment that did not align with their wishes. Not a statistic in a journal. Real people, in real beds, receiving interventions they would not have chosen if someone had asked them early enough.
Families Making Decisions in the Dark
When a patient cannot speak, and no advance care plan exists, a family member is handed the full weight of a medical decision in the worst moment of their lives. A daughter who said “yes” to another surgery because no one explained she could say “no.” A son who said “no” to pain relief because he misunderstood what comfort meant, and has never stopped questioning himself. These are not failures of love. They are failures of preparation.
Conversation Is the Most Powerful Tool in Medicine
Why These Talks Must Happen Before the Crisis
Early goals-of-care conversations, the kind that happen in a primary care office long before an ambulance is called, reduce unnecessary suffering, reduce nonbeneficial treatment, and reduce the moral distress that ICU clinicians carry home after difficult deaths. When structured end-of-life discussions were built into hospital workflows, outcomes improved for patients, families, and care teams alike. That finding is not theoretical. It is documented, consistent, and replicable.
Every Medical Encounter Is an Opportunity
A routine cardiology follow-up. A diabetes check-in. A well-woman exam. Every one of those appointments is a chance to ask, “Have you thought about what you’d want if you couldn’t speak for yourself?” That question does not require a terminal diagnosis. It requires only the willingness to ask.
Starting With Primary Care and Going Everywhere
These conversations should begin with the primary care physician and continue at every level of the healthcare system, be reinforced by public health departments, and be carried through every clinical encounter, regardless of size or setting. Not once. Repeatedly, across years, health changes and life events.
Clinicians Need Training, Too
Why Discomfort Delays the Conversation
Many ICU physicians feel genuinely unprepared for end-of-life conversations and defer to palliative care consultants, so a family that has trusted the same surgical team all week suddenly meets a stranger in a white coat during the hardest hour of their lives. This is a training gap, and training gaps can be closed.
Resources That Build Real Confidence
Three books offer practical, readable help for clinicians and care teams who want to build genuine skill in these conversations:
These are not textbooks. They are readable and immediately useful.
Most Americans Have No Plan
The Stunning Gap in Advance Care Planning
Only 5 percent of Americans have an advance care plan in place, and nearly half of all adults are largely unfamiliar with what advance care planning even means. Among older Medicare beneficiaries, at least 40 percent have no documented advance healthcare directive at all. Nobody can predict at what age they will die or in what condition. A healthy 34-year-old can be in a car accident on a Tuesday morning.
What “Up to Date” Really Means
A plan completed at age 38 may not reflect who a person is at 65. Illness changes things. Loss changes things. A plan sitting untouched in a filing cabinet for two decades is not a plan. It is a relic, one that may no longer speak for the person whose name it bears.
Why an Attorney Is Not the Right Person for This Job
Legal Documents Are Not the Same as Values-Based Plans
Estate attorneys are trained in law. They handle document execution, estate structure, and legal language with skill and precision. They are not trained to sit across from someone and ask, “What does a good day look like for you? What are you most afraid of? What does dignity mean to you when you can no longer care for yourself?” Those questions require a completely different skill set.
What an Advance Care Planning Specialist Does Differently
An advance care planning specialist is trained to guide someone through values-based questions and translate those values into documents that speak clearly in a crisis. The resulting plan reflects who the person actually is, not just legal checkboxes filled in under time pressure. That distinction can mean the difference between dying with machines or dying with music and the people who love you nearby.
What You Can Do Right Now
For Healthcare Providers
Begin goals-of-care conversations with patients of all ages, including healthy adults in their twenties and thirties, because a crisis does not check age first.
Build confidence through targeted training, beginning with the resources listed above.
Advocate within your institution for structured, standardized goals-of-care protocols that begin at admission.
Normalize the conversation. Make it routine. Make it kind.
Give a copy to your medical power of attorney, your primary care physician, and anyone who might one day make decisions for you.
Tell the people who love you where the documents are kept.
Review your plan after every major life or health change and at least every 5 years.
The most protective gift you can give the people who love you is making your wishes known before they are forced to guess. That is not morbid. It is, without question, one of the most caring things a person can do.
Free Daily Symptom Tracker: Each headache, flare, or fatigue spike reveals a clue. This two-page Daily Symptom Tracker records sleep quality, food intake, triggers, severity, and effective relief methods—all in one place. Use it daily for 31 days and share the pages with your healthcare provider or health navigation expert. Together, you can move from guessing to addressing the root cause. Instructions on how to use the free daily symptom tracker and the free daily symptom tracker.
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Compassion Crossing Academy — Free and paid online courses are available to teach caregivers, nurses, social workers, chaplains, end-of-life advocates, and educators, including death doulas, how to confidently coordinate complex care.
The Death Deck is often a wonderful conversation starter.
Compassion Crossing, LLC, via Peter M. Abraham, BSN, RN, EOLD, offers on-site services in Madison County, KY, as well as in the seven nearby counties—Clark, Estill, Fayette, Garrard, Jackson, Jessamine, and Rockcastle—and provides virtual options when no local provider is available.
Hospice Buddy: Although Jamie Haberman, RN, CHPN, isn’t a certified end-of-life doula, her virtual services are highly valuable.
Currently, no official organization regulates end-of-life doulas (EOLDs). Remember that some EOLDs listed in directories may no longer be practicing, so it’s important to verify their current status.
End-of-Life Doula Schools
Before you consider a death doula school, please volunteer with a local hospice provider as a “companion volunteer” to gain experience with strangers who are dying, as well as with family and staff dynamics. The author also recommends reading the article Economic rant: The death doula crisis we aren’t talking enough about, as most death doula schools do not emphasize that being a death doula is a calling rather than a career.
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
Compassion Crossing Academy: Although it isn’t a dedicated death-doula school, it offers unique classes that can help death doulas expand their practice. It serves as an important resource for individuals looking to deepen their understanding and grow in this meaningful profession.
Remember that there is no official accrediting body for end-of-life doula programs. Certification simply shows you’ve completed an unaccredited course and received a certificate of completion. It’s advisable to have discovery sessions with any death doula school you’re considering — even if it isn’t listed here — to see if it meets your needs. Also, ask questions and reach out to references, such as former students, to assess whether the school provided a solid foundation for launching your own death doula practice.
