It is 2:47 in the morning. Helen dials 911 because her husband, Raymond, is unresponsive in their bedroom. Raymond is 79. He has dementia. When the paramedics arrive, they ask immediately for his advance directives. Helen hands them a thick folder. There is a living will — a standard state form, signed years ago, before his diagnosis. A few boxes are checked. There is a healthcare power of attorney. The paramedic reads both documents, then looks up. “Does he have a POLST form?”
Helen has never heard that word in her life. Not once in five years of watching Raymond change.
Raymond receives CPR. He is intubated. He dies four days later in an ICU, confused and afraid in a way that no one who loved him will ever stop seeing.
But here is the part the story does not show on the surface: even if a POLST had been sitting on that refrigerator, it still would not have captured what Raymond actually wanted. Because Raymond had never sat with someone trained to ask the right questions. Nobody had ever helped him write, in his own words, how much pain medication was acceptable — whether he was willing to feel some discomfort to stay alert enough to recognize his grandchildren, or whether he wanted the pain gone entirely. Nobody asked whether he would accept a BIPAP mask to help him breathe, but refuse a ventilator. Nobody wrote down that he had an implanted cardiac defibrillator, that he would want it turned off once his dementia reached a point where he could no longer name his wife, and that he absolutely would not consent to a surgical fistula for long-term dialysis. Nobody asked whether he wanted blood work drawn at all in the final stage of his illness, or whether tightly controlling his blood sugar still mattered to him when eating had become a struggle.
Those are not obscure clinical details. They are the difference between a plan that protects a person and a folder of papers that cannot.
A 2026 study published in the Journal of the American Geriatrics Society found that fewer than 25% of EMS calls involving patients with dementia included any documentation of care preferences. Fewer than 25% of those patients could communicate their own needs directly at the time of the call. Professional caregivers on scene were frequently unable to provide basic information about what the person wanted. Only 25% of EMS reports documented care preferences at all.
That is not a failure of individual families. That is a system-wide failure to tell people what a complete advance care plan actually is.
What EMS Actually Faces at Your Door
The 90-Second Reality
The paramedics who come through your door are not hostile to your wishes. They are legally bound by them — but only if those wishes exist in the right form. In the absence of a valid, state-specific, physician-signed medical order form, they must begin full resuscitation. A living will does not stop CPR. A verbal request from a family member does not stop CPR. Even a letter from a physician does not stop CPR. Only the correct, properly completed, physician-signed out-of-hospital medical order — in most states called a POLST, in others a MOLST or MOST — stops CPR.
A daughter sits beside her mother on the floor and holds out a two-page living will. The first responder reads it quickly. He nods. He says he is sorry. He begins chest compressions. Her mother, who told every person who loved her that she never wanted resuscitation, never wanted a breathing tube, received exactly what she said she did not want. Not because anyone ignored her. Because the right form did not exist, and because the living will itself contained no specific instructions. Only checked boxes.
The 2026 JAGS study found that professional caregivers on scene were often unable to provide basic information about care preferences and priorities, and that EMS reports frequently showed no documentation at all.
A Living Will Is Not Just a Series of Checkboxes
What the Form Actually Has Room For
This is the point most families never hear, and it is the most important clinical reality in this article.
A medical living will is not limited to checked boxes. Most state forms contain open sections specifically designed for written, personal instructions. The form includes a field in Part I that reads: “I give the following instructions as further guidance to my surrogate,” and a separate field in Part II labeled “Other directions,” with a direct instruction to attach additional pages if needed. Those fields are blank on purpose. They exist for one reason: to capture the specific, personal values that no checkbox can hold.
That space — those blank lines — is where a complete advance care plan lives.
“I accept palliative sedation — medication that keeps me deeply unconscious and free from pain — if my suffering cannot be controlled any other way, and I am in the final stage of my illness. Palliative sedation is legal in all 50 states and is not the same as euthanasia. I want my care team to understand that I accept it fully.”
“I will accept a BIPAP mask for breathing support if it helps my comfort. I will not accept intubation or mechanical ventilation under any circumstances, regardless of the cause of my breathing difficulty.”
“Once I can no longer eat independently or recognize my immediate family, I do not want my blood sugar managed tightly. Loose management for basic comfort is acceptable. I do not want frequent finger sticks or insulin adjustments that serve no comfort purpose.”
“I do not want blood work drawn more than once per month once I am in late-stage dementia, and only if the results could change a comfort-focused care decision. Routine diagnostic blood work to chase numbers is not consistent with my values at that stage.”
“I have an implanted cardiac defibrillator (ICD). I want it turned off when I enter hospice care or when I can no longer recognize my family — whichever comes first. I do not want to be shocked back from a natural death.”
“I am willing to try dialysis through a temporary port for up to six weeks if there is a reasonable medical expectation that I could return home. I do not consent to a surgically placed fistula for ongoing long-term dialysis if my overall condition is declining.”
“Antibiotics are acceptable for comfort — to reduce a fever or infection causing distress — but not to prolong my life.”
“I want a short trial of artificial hydration — no longer than five days — only if my care team believes it may improve my comfort or reduce confusion. If there is no meaningful improvement within five days, stop it.”
These instructions are not hypothetical. They are the kinds of written directions that an advance care planning specialist or health and life navigation specialist helps a person develop through guided conversation — questions about what the person fears, what quality of life means to them, what they absolutely refuse, and what they might accept under specific conditions. Then the specialist translates those answers into written language that is both legally clear and medically actionable.
A standard form, filled out alone at a kitchen table or drafted in an elder law attorney’s office without clinical guidance, rarely reaches this level of detail. It cannot. Nobody is asking the questions that get to these answers.
What a Complete Advance Care Plan Actually Includes
Every Document, and Why Each One Matters
A complete advance care plan is a set of documents that work together. No single piece covers everything on its own.
Medical living will
This is the foundational document. It expresses which treatments you want and which you refuse. But the living will is only as protective as the written instructions inside it. The most effective living wills go far beyond initialed checkboxes and include detailed, written guidance — added as personal instructions or attached as additional pages — that leave as little room for guesswork as possible. The written instructions can address pain management and sedation preferences, breathing support options, blood sugar management, blood work frequency, dialysis conditions, resuscitation preferences, feeding tube parameters, hydration trials, and any preferences for implanted devices.
Medical power of attorney
This names the person who makes healthcare decisions on your behalf when you cannot make them yourself. Their job is to follow and advocate for the written instructions in your living will — not to guess what you probably would have wanted. When those instructions are vague or missing, your medical power of attorney is making consequential decisions alone, under pressure, often in a hospital waiting room with a medical team waiting for an answer. Specific written guidance protects your medical power of attorney as much as it protects you.
Financial power of attorney
This gives someone legal authority to manage your finances when you cannot. Dementia frequently affects financial decision-making years before a formal diagnosis and before anyone in the family recognizes it as a symptom. This document should be in place for every adult, at any age and any health status.
State-specific POLST / MOLST / MOST
This is the physician-signed medical order that EMS responders and hospital staff can legally act on in an emergency. It is not a statement of preferences. It is a medical order. It must be signed by a physician, CRNP, or PA and be physically accessible — not in a filing cabinet. On the refrigerator. Beside the bed. With the caregiver’s daily materials.
Optional addendums based on the person’s history and risk
These go beyond the standard living will and address specific circumstances that a general form does not cover:
Dementia care directive: Written instructions, completed while the person still has full decision-making capacity, specifying care preferences at each stage of dementia’s progression.
Mental health directive: Relevant for anyone with a history of psychiatric illness. Specifies how mental health history should — and should not — affect care decisions or medication choices during a medical crisis.
VSED directive: Allows a person to document, in advance and while still competent, the specific conditions under which they would choose to voluntarily stop eating and drinking, along with written guidance about comfort care during that process.
The POLST/MOLST/MOST Must Match the Living Will
One Incorrect Box Can Override Everything
A specialist’s work does not end when the living will is written. The POLST/MOLST/MOST form must be reviewed, section by section, to confirm that every choice on it aligns with the written instructions in the living will.
Section B of the POLST/MOLST/MOST covers what happens when a person’s heart is still beating but they need additional medical care — IV fluids, cardiac monitoring, breathing support, and hospital transfer. The three options in Section B are: Comfort Measures Only, Limited Additional Interventions, or Full Treatment.
Here is the problem most families never learn until it is too late: if a person has written detailed, comfort-focused instructions in their living will — specifically refusing intubation, ventilators, and aggressive hydration — but then checked “Full Treatment” in Section B without understanding what that means, the medical team is required to follow the POLST/MOLST/MOST. As the most recently signed physician order, it takes precedence. One incorrectly checked box can override everything the person wrote.
An advance care planning specialist or health and life navigation specialist works through Section B deliberately, in the context of all the written instructions the person has already provided. They ensure the form’s options reflect — and do not conflict with — those instructions. Without that guidance, most people check a box without understanding what it authorizes or what it cancels out.
Dementia Is Diagnosed Late — and That Is a Planning Crisis
The Window Closes Faster Than Anyone Expects
Most dementia diagnoses do not happen in the early stages. By the time a formal diagnosis is made, most people are already at Stage 4 or Stage 5 on the Global Deterioration Scale. Stage 4 is considered early dementia. Stage 5 means independent living is no longer safe. Decision-making capacity — the ability to understand information, weigh options, and communicate a clear choice — can begin declining at Stage 4 and, for some types of dementia, earlier.
Research on advance care planning in dementia confirms that planning must begin at or before the time of diagnosis. Waiting for a “more serious” stage is not a safety margin. It is a missed window.
A daughter takes her father to a neurologist after he gets lost driving to the grocery store he has visited for thirty years, three times in one month. The neurologist completes his assessment. “He has moderate Alzheimer’s. Probably Stage 5.” She asks whether her father can still complete his own advance directives. The neurologist pauses. “That’s a conversation we should have had two years ago.”
Many people living with dementia are not diagnosed until they are already in denial about their condition, or until the disease has removed the very capacity they would have needed to participate in detailed, value-based planning. When that window closes, the burden shifts entirely to the family — and they are left guessing about decisions that should have been the person’s own.
Why Your Attorney May Not Know About the Full Picture
The Knowledge Gap That Puts Patients at Risk
Elder law attorneys create legally valid documents. That is their training, and they bring real expertise to it. What most elder law attorneys are not trained to do is guide a person through the value-based, clinically detailed conversations that produce written instructions worth having in an advance care plan.
Most elder law attorneys will not discuss — and are not equipped to discuss — the specific written instructions that belong in the living will’s open narrative fields. They are generally not familiar with the optional dementia care directive, mental health directive, or VSED directive. They rarely know how to work through Section B of the POLST/MOLST/MOST in the context of the living will’s written instructions. They are not in a position to explain the clinical difference between tight and loose blood sugar management, or to help a person decide whether a BiPAP mask aligns with their values, whereas a ventilator does not.
This is not a criticism. It is a scope limitation — one that most families never know exists until a crisis reveals it.
An advance care planning specialist or health and life navigation specialist works specifically in this clinical space. They ask the questions an attorney does not know to ask. They take the answers — the values, the fears, the specific conditions a person would and would not accept — and translate them into written language a medical team can follow, and a medical power of attorney can point to with confidence.
One conversation with a specialist can be the difference between a living will that says “I want comfort care” in vague terms and one that says, in writing: “If I am in late-stage dementia and can no longer recognize my family, I do not want diagnostic blood work, I do not want my blood sugar tightly controlled, I want my ICD turned off, and I want palliative sedation if my discomfort cannot otherwise be managed.”
Those are not the same document. They do not produce the same outcome.
Start Now. Every Adult. Any Age.
Dementia does not send advance notice. The capacity to plan can decline gradually and then suddenly, without a clear warning moment when a family can say, “Now. We need to do this now.” The full picture of what a person wants from their care, the values that took a lifetime to form, cannot be recovered once that capacity is gone.
Every adult age 18 and older should have a complete set of advance directives. Not because death is imminent. Because the most important decisions about your medical care should belong to you — expressed in your own words, guided by someone trained to ask the right questions, written into documents that a healthcare team can actually follow.
If a loved one has received a dementia diagnosis at any stage, act now. Research confirms that decision-making capacity in dementia can be lost early in the disease process and without sufficient warning. Planning must begin at or before the time of diagnosis — not when the next crisis arrives.
Here is where to start:
Do not assume a standard form is enough. Check the documents you have. Do they include specific written instructions about your values — pain management, breathing preferences, blood work, blood sugar management, dialysis conditions, ICD status, hydration, and nutrition parameters — or only checked boxes?
Work with an advance care planning specialist or health and life navigation specialist. These professionals are trained to guide you through your values and translate them into written instructions that are medically clear, legally sound, and specific enough for a healthcare team to follow without guessing.
Ask explicitly about the optional addendums — particularly the dementia care directive, mental health directive, and VSED directive. Do not assume they will be offered automatically.
Review the POLST/MOLST/MOST with your specialist to ensure Section B aligns with the written instructions in your living will. An error in Section B can override everything else.
Keep the POLST/MOLST/MOST signed, current, and physically accessible. Review it annually if you are healthy, every three months if you have a chronic illness, and any time your health changes significantly.
The 911 call may come. When it does, the question will not be whether you had a folder. It will be whether that folder contained the real, written, specific story of what you valued — and whether the documents inside it were prepared to speak for you when you no longer could.
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.
