Margaret was 74. She had high blood pressure, a heart murmur her cardiologist called “nothing serious,” an arthritis flare every winter, and a stubborn habit of refusing to slow down. She was fine. Until she wasn’t.
Her son got the call at 11 p.m. on a Tuesday. She had collapsed. She was in the ICU, on a breathing machine, and the nurse at the desk was asking whether his mother had any paperwork, any living will, anything that said what she wanted.
He didn’t know.
A Quiet Shift in How Americans Leave the ICU
What the Numbers Actually Show
A 2026 Boston University study analyzed Medicare data from more than 10 million patients age 65 and older who were admitted to an ICU between 2011 and 2023. Researchers found that the rate of patients discharged to hospice after an ICU stay rose from 5.6% to 6.8% over that period, while in-hospital and 30-day death rates stayed essentially the same. The use of do-not-resuscitate orders and palliative care consultations also increased over those same years.
Lead researcher Dr. Anica Law said it plainly: “ICU care is intense and invasive, and many of the life-sustaining treatments offered long-term may not be what patients want near the end of life.”
That shift is real. Worth paying attention to.
Most People Never Wanted to End Up There
What Patients Say They Want
Ask most people where they would want to die. Not one in a hundred says a fluorescent-lit room with strangers making decisions and alarms that never stop. Research consistently shows that people want to be somewhere familiar, with pain managed, and with people they love nearby.
The reality is different. Between 20% and 30% of Americans die in an ICU. Nearly 60% of all ICU admissions end in death. Wide gaps exist between what patients say they want and the care they actually receive, and these gaps are well-documented.
That gap does not close on its own.
Death Doesn’t Wait for a Good Time
Robert was 68. Retired, reasonably healthy, still playing golf on Saturdays. He had Type 2 diabetes and chronic kidney disease, both “well-controlled” according to his doctor.
One spring afternoon, his kidneys began to fail faster than anyone expected. By the time the ambulance arrived, he was unconscious. His wife of 44 years sat in a waiting room while a team of strangers decided what to do next.
He had never completed an advance directive. His wife believed he wouldn’t want to be kept alive on machines. She wasn’t certain, and she couldn’t ask him. The doctors kept him on life support for 11 days.
Not an unusual story. Serious illness does not schedule itself around a convenient time. Age, heart disease, kidney failure, and stroke can be quiet for years, then shift without warning, and the window for making decisions can close within hours. An advance care plan created today, while a person is thinking clearly and speaking freely, can prevent an entire family from sitting paralyzed in that waiting room.
Most Americans Still Don’t Have a Plan
“I’ll Get to It” Is Not a Plan
Fewer than one in three American adults has completed any formal advance directive. The consequences of that gap are not abstract.
Among patients with advanced cancer who preferred comfort-focused care, 37% reported receiving aggressive, life-extending treatment instead. That treatment did not help them live longer. Patients went through invasive, burdensome procedures that ran against their own values, with no improvement in survival.
A living will from 2009 does not count. A vague conversation from years ago does not count. An advance care plan that no longer reflects a person’s current values, health situation, or relationships does not count. Neither does a printout someone filled out alone, without guidance, and tucked in a drawer where no one will find it.
Why Your Attorney and Doctor Aren’t the Right Starting Point
The Gap That a Specialist Fills
An attorney can put language into a legal document. Genuinely valuable. What an attorney is not trained to do is sit with someone and ask what makes life feel worth living, or what a good death looks like to them, or what they are most afraid of, or whether there is a condition under which they would not want to stay alive. Those are not legal questions. They are human ones.
Primary care physicians face a different limitation. ICU clinicians in a Northwestern Medicine study said end-of-life conversations “varied greatly depending on the clinician,” and that family meetings were often delayed until a patient’s prognosis was obviously poor. Doctors are trained to treat illness and extend life. That purpose is not always the same as uncovering what a patient values most.
Advance care planning specialists are trained for exactly this work. They guide people through values-based questions, help translate those values into clear language, ensure the medical power of attorney understands what they are being asked to carry out, and confirm that the final documents actually say what the person means.
One Conversation Can Change Everything
Nobody is too young for this. Nobody is too healthy or too far from that waiting room.
If you do not have a current, complete advance care plan, or if you are not sure yours still reflects who you are today, now is the right time to create one. A specialist will walk you through the process at your pace, with your values driving every decision.
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.
