Jaden is 22. He works double shifts at a warehouse on weekends to cover his tuition, and he is three semesters from finishing his degree. It is a Friday night in November, just past midnight, when a sedan runs a red light and hits the driver’s side of his truck.
The paramedics get him to the emergency room in time. His heart is beating. He is on a ventilator. His parents are called, and they arrive within the hour, sitting across from a nurse who asks whether Jaden would want continued aggressive intervention if he does not regain consciousness.
His mother says yes. Immediately, without hesitation.
His father says, “He always told me he would never want to be kept alive by machines.”
They stare at each other.
The nurse waits. There is no document, no named healthcare agent, no written word from Jaden about any of this. He is 22. He had not thought about it.
No one does.
What Is an Advance Care Plan?
An advance care plan is a set of legal documents that tells your medical team what you want and who has the authority to make decisions on your behalf when you cannot speak for yourself.
That covers more situations than most people realize. A serious car accident. A stroke. A reaction to medication. A surgery that does not go as planned. Dementia that progresses faster than anyone expected. These are not rare events. They happen to people of every age, every health status, and every background.
Every adult aged 18 and older needs one. Not just the elderly. Not just the chronically ill. You.
The plan can be updated at any time. It is a living document that reflects your values and wishes right now, so that if anything changes, the people who love you do not have to guess.
The Four Documents You Actually Need
The Living Will
A living will is a written, signed, and witnessed document that states which medical treatments you do or do not want when you cannot express your wishes yourself.
It addresses specific decisions: CPR, mechanical ventilation, feeding tubes, dialysis, intravenous hydration, antibiotic use, and comfort care preferences. Without one, medical teams follow standard emergency protocols. That means doing everything possible to sustain life, regardless of what you might have wanted.
Everything. Unless a document says otherwise.
The Medical Power of Attorney
A living will covers many situations, but not all of them. This is where the medical power of attorney becomes essential.
This document names one specific person, called your healthcare agent or healthcare proxy, who makes real-time medical decisions on your behalf when a physician has certified that you lack the capacity to make them yourself. Your agent can make decisions that your living will did not anticipate. That flexibility matters deeply in real-world crises, when situations unfold in ways no printed form could fully predict.
Your healthcare agent must be at least 18 years old and cannot be your physician, your nurse, or an employee of your healthcare facility. Choose someone who knows your values, stays calm under pressure, and will advocate for what you actually want, not what they want for you.
The Durable Financial Power of Attorney
Most people do not think about this one. They focus on medical decisions and forget that incapacitation affects every part of a person’s life.
A durable financial power of attorney gives a designated person the legal authority to manage your finances and legal affairs when you cannot. Bills. Bank accounts. Insurance. Lease agreements. Without this document, the people trying to help you may find themselves locked out of your accounts and unable to cover the basic costs of your care. It is a separate document from your medical directives, and it does not require a legal background to execute. It requires a trusted person and a signed, notarized form.
Specialty Directives: Dementia, Mental Health, and VSED
Standard advance directive forms leave gaps. Wide ones.
A dementia directive states what care you would want at each stage of cognitive decline, including whether you want tube feedings, hospitalization, antibiotic treatment, or comfort-focused care at a point when you can no longer recognize the people closest to you. This is not addressed in a standard living will.
A psychiatric advance directive documents your preferences during a mental health crisis. It can include consent to or refusal of specific medications, hospitalization, and treatment interventions when you are not in a position to make those decisions in the moment.
A VSED directive addresses voluntary stopping of eating and drinking, which is a legal option in all 50 states. It documents whether you would want to use VSED under specified conditions, so that your care team and healthcare agent are not left to interpret your silence on such a significant subject.
A trained advance care planning specialist will guide you through all of these. More on that shortly.
It Can Happen at Any Age
Sofia, 35: A Prescription and a Phone Call
Sofia picks up a new prescription on a Tuesday afternoon. Her doctor added an antidepressant to treat the anxiety that has been keeping her awake for months. What neither of them catches in the appointment is that the new medication interacts with a supplement Sofia has been taking for two years.
By Wednesday morning, her muscles are rigid, and her temperature is climbing. Her husband calls 911 and follows the ambulance to the hospital, where a nurse asks him whether Sofia has any advance directives.
He does not know what that means. He says no.
The team asks him whether she would want a ventilator if her breathing deteriorates. He stands in a hospital hallway under fluorescent lights and tries to remember if she ever said anything about this. He cannot recall a single conversation.
Marcus, 49: Cardiac Arrest in the Recovery Room
Marcus schedules a knee replacement in September. He is active and healthy, and expects to be back on his bike in three months. The surgery itself goes smoothly. Then, in the recovery room, his heart stops.
He is resuscitated but sustains a hypoxic brain injury from the minutes his brain spent without oxygen. His daughter drives two hours to the hospital, walks to the nurses’ station, and says she needs to make decisions for her father.
The nurse explains that she has no legal authority to do so. Marcus has a living will in a kitchen drawer at home, but it is eleven years old, signed before his divorce, and lists his ex-wife as his healthcare agent.
His daughter sits down in a plastic chair and stares at the floor.
Diane, 62: A Stroke in the Cereal Aisle
Diane is reaching for a box of oatmeal when her right arm goes numb. She does not remember anything after that.
She survives the stroke, but she can no longer speak clearly or write. Her advance directive is fourteen years old, and the language is vague in the places that matter most. Her four adult children gather in a conference room with a hospital social worker, and each one remembers something different that their mother once said about medical intervention.
None of them agrees. All of them are certain they are right.
Gerald, 74: The Diagnosis That Arrived Too Late
For two years, Gerald’s daughter noticed changes. Forgotten words. The same question was asked four times in a single conversation. A missed appointment; Gerald had no memory of scheduling.
She brought it up gently. He said he was fine. She suggested a neurologist. He said he would get around to it.
By the time his family pushes hard enough and gets him evaluated, the diagnosis is moderate Alzheimer’s disease. His physician explains, carefully and kindly, that Gerald can no longer reliably understand or sign legal documents. To gain the legal authority to manage his care, his family must now petition the courts for guardianship.
Months pass. Thousands of dollars in legal fees accumulate. Gerald always had strong opinions about how he wanted to live and be cared for. He cannot communicate those opinions to anyone who has the standing to act on them.
His own voice is gone from the process.
Why So Few Adults Have One
Only 36.7% of U.S. adults have completed any type of advance directive, and the numbers are nearly identical for healthy adults and those living with chronic illness, according to a systematic review published in Health Affairs. 92% of Americans say it is important to talk about end-of-life care wishes. Only 32% have actually had that conversation with anyone.
That gap is not confusion. It is avoidance.
People delay for four main reasons: they assume they are too young or too healthy for this to be relevant right now, the subject feels uncomfortable to face directly, they do not know where to begin, or they do not realize these documents can be changed the moment circumstances shift. All four of those reasons disappear quickly once a crisis arrives. At that point, the documents either exist or they do not.
What an Advance Care Planning Specialist Actually Does
There is a real difference between picking up a standard form from a hospital lobby and working with a trained advance care planning specialist.
A standard form gives you blanks to fill in. It asks whether you want CPR, whether you want a ventilator, and who your emergency contact is. Those are starting points, but they are not a complete plan.
A specialist takes time to understand your values. They ask questions that never appear on printed forms. Questions like: “If you had a severe stroke and could no longer recognize your children after eighteen months of rehabilitation, what would you want your care to look like at that point?” Or: “At what stage of cognitive decline would you want your care to shift from intervention to comfort only?”
These are not morbid questions. They are the questions that determine exactly what happens to you if the worst-case scenario arrives.
A specialist helps you translate your answers into specific, workable language. They walk through dementia stages, mental health crises, VSED, pain management preferences, conditions under which you would or would not want hospitalization, and what quality of life means to you personally. The resulting document is thorough enough that your healthcare agent and your medical team can act on it with minimal guesswork, minimal family conflict, and minimal delay in getting you the care you actually wanted.
Your Voice Deserves to Be Heard
You do not need to be sick to do this. You do not need to be old. You need to be 18 and willing to spend a few hours putting your wishes in writing before a situation makes that impossible.
Jaden’s family is still in that hospital waiting room, disagreeing in whispers. Sofia’s husband is still trying to remember a conversation that never happened. Marcus’s daughter is still sitting in that plastic chair. Diane’s children are still in that conference room. Gerald’s family is still waiting for a judge.
None of them had to be there.
Working with an advance care planning specialist is an act of care for the people who love you, and for yourself. Your plan reflects where you are right now. It can be updated next year, next month, or the week after a diagnosis changes everything.
What it cannot do is speak for you if it does not exist.
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.
