The Question No One Thinks to Ask Until It Is Too Late
Picture this: Someone you care about — a close friend, a spouse, a parent, or even you yourself — is rushed to a hospital emergency room following a car accident. The injuries are serious. The doctors need to make fast decisions. Your loved one is unconscious and cannot speak.
The medical team turns to whoever is in the room. “Do you know what they would want?”
Most people, in that moment, do not know. Not with any certainty. And the ones who think they do often discover that knowing someone deeply is very different from being able to speak for them clearly, calmly, and accurately in one of the most overwhelming settings a human being can encounter.
Now ask yourself: Do the people closest to you know what you would want? And if something happened to you today — not in ten years, not after a diagnosis, but today — would there be a document that gave them clear, specific guidance based on your actual values?
For most adults in Kentucky, the honest answer is no.
Why This Matters More Than Most People Realize
We tend to think of advance care planning as something for older adults. Something you do when you retire, or when a doctor gives you a serious diagnosis, or when you finally feel ready to face questions about mortality. The reality is far less comfortable.
Motor vehicle accidents are the leading cause of unintentional injury death in the United States, and they happen to people of every age. Medical errors remain one of the leading causes of death nationally, affecting patients who enter the hospital for routine procedures. Stroke, cardiac arrest, sudden neurological events, and undiagnosed illnesses can strike without warning, at any age. In a matter of seconds, an otherwise healthy person can be placed in a position where they cannot communicate, cannot consent, and cannot tell the people they love what they need.
When that happens, the burden shifts. It shifts to family members who may be exhausted, frightened, and deeply divided about what to do. It shifts to healthcare providers who are trained to act, to treat, to preserve life at all costs — because that is the orientation of the American healthcare system. Death, in that system, has historically been framed as a failure. And so, in the absence of clear documentation, the default tends to be: do everything.
“Doing everything” is not always what people would choose if asked. But without documentation that clearly reflects their values, their voice is gone.
What Most People Think They Have
If you ask a room of adults whether they have an advance care plan, a few hands will go up. Some will mention having a will. Some will say a family member knows their wishes. A smaller number will say they downloaded a Living Will form from the internet or received one from their attorney.
In Kentucky, the most commonly referenced starting point is the Living Wills in Kentucky resource from Attorney General Russell Coleman’s office, which provides a downloadable living will packet for residents of the Commonwealth. It is free, state-sanctioned, and widely distributed. On the surface, it appears to cover the basics.
But let’s look at what that form actually gives you.
The Kentucky Attorney General’s Living Will form covers four areas: designating a healthcare surrogate to speak for you, indicating whether you want life-prolonging treatment withheld, indicating whether you want artificially provided nutrition and hydration withheld, and making an organ donation decision. Each of these is handled through a checkbox or a basic initial.
That is it.
There is no section that asks, “What does quality of life mean to you?” What experiences make your life feel worth living? What are you most afraid of — dying, or living in a condition you would find intolerable? How do you feel about pain management, even if it means being less alert? What would you want if you were still physically alive but no longer able to recognize your children?
There is no room to write those things down. There is no space for the words that would actually help a doctor, a hospital, or a frightened family member understand who you are and what you would want them to do.
A checkbox is not a conversation. And a conversation — reduced to its essential meaning — is what advance care planning actually is.
The Attorney Question
Many people who want to take advance care planning seriously turn to an attorney. This is a reasonable instinct, and attorneys perform an essential function in ensuring that legal documents are properly executed, witnessed, and enforceable under Kentucky law. That role matters enormously.
However, it is worth understanding what an attorney is trained to do and where the limits of that training naturally fall. Legal professionals are experts in the law. They are not, by training or professional scope, experts in medicine, in the clinical realities of serious illness, or in the specific decisions that arise in an intensive care unit, a memory care facility, or a hospice.
When a client asks an attorney to help draft advance care documents, that attorney can ensure the paperwork is legally sound. What they typically are not in a position to do is explain, for example, the actual survival rates and physical consequences of cardiopulmonary resuscitation in an elderly person with advanced heart failure. They are generally not equipped to walk someone through the difference between non-invasive breathing support and mechanical ventilation, or to explain what kidney dialysis actually involves as a long-term commitment. These are not criticisms. They are simply the natural contours of a different expertise.
There is also a growing body of specialized advance care planning that falls well outside the scope of a standard estate planning engagement. Advance directives for dementia care, which address what you want to happen as cognitive decline progresses through distinct stages, require a nuanced understanding of how dementia actually presents over time. Mental health advance directives address your treatment preferences during a psychiatric crisis — including whether you consent to certain medications or procedures — and these are deeply personal, values-driven documents. Voluntarily Stopping Eating and Drinking, or VSED, is a legal end-of-life option that allows a person to decline food and fluids under specific conditions, typically when a progressive illness has made continued living intolerable by their own definition. These are not documents that appear in a standard estate planning checklist, and most adults have never heard of them.
None of this diminishes the value of working with an attorney. It simply means that legal documentation and values-based advance care planning are different services, and doing one does not automatically accomplish the other.
The Gap Between Having a Document and Having a Plan
Here is where most well-intentioned advance care planning falls apart.
A person fills out the Kentucky Living Will form. They check the boxes. They sign it, have it witnessed, file it in a folder, and feel a sense of relief. The document exists. The task is done.
What that document does not do is tell a doctor — or a medical power of attorney acting in a crisis — what this particular person values about their life. It does not explain under what conditions they would consider continued treatment a burden rather than a benefit. It does not address what “comfort” means to them. It does not speak to their fears, their spiritual beliefs, their hopes for the people they leave behind. It does not address what they would want if they were diagnosed with dementia and could no longer recognize their spouse. It does not say whether they would want antibiotics given for comfort or only in pursuit of recovery. It does not indicate whether dialysis is something they would ever agree to, or whether they would rather focus on quality of life over quantity of days.
When a family member stands at a bedside, and the medical team is asking what their loved one would want, a document that says “withhold life-prolonging treatment” in a single initialed box does not answer most of the questions they are actually facing. And in the absence of clear guidance, people often default to saying yes to whatever the medical team recommends. That is human. It is also, in many cases, not what the patient would have wanted.
Families who are forced to make surrogate decisions without clear guidance carry a significant burden. The weight of guessing is real. The weight of believing they got it wrong — or of watching a loved one receive care that does not match who that person was — can last a lifetime.
What Values-Based Advance Care Planning Actually Looks Like
That process begins with guided reflection: What matters most to you in your daily life? What does quality of life mean to you personally? What are you most afraid of when you imagine serious illness? Who do you trust to speak for you, and do they actually understand what you would want?
From that reflection, a comprehensive plan takes shape. It typically includes:
A Living Will or advance directive that goes well beyond the checkbox format, using your own words and values to give healthcare providers and your medical power of attorney specific, usable guidance
A durable medical power of attorney that designates the right person — not just the closest relative, but the person best equipped to advocate for you under pressure
A durable financial power of attorney so that your affairs can be managed if you are incapacitated
An addendum for dementia care that addresses, stage by stage, what you would want as cognitive decline progresses
A mental health advance directive that documents your preferences for psychiatric treatment during a crisis, including medications or interventions you would or would not consent to
A VSED directive, if that option aligns with your values, gives you the ability to refuse assisted eating and drinking under conditions you define in advance
These documents are only as good as the conversations behind them. A values-based plan requires someone who understands both the human dimension of these decisions and the medical reality of the situations they address. Advance care planning specialists — professionals trained specifically at the intersection of values, communication, and end-of-life care — are equipped to guide that process, producing documents that actually work when they are needed most.
An advance care planning specialist is not a replacement for an attorney. They are a different kind of professional, focused on helping you articulate what you value, understand the decisions you may face, and document your wishes in language that healthcare providers can act on with confidence.
Starting at 18: The Truth About Who Needs This
This is not a planning process for people who are elderly, seriously ill, or facing a difficult diagnosis. Every adult in Kentucky, starting at age 18, can benefit from an advance care plan.
An 18-year-old heading to college can face a serious accident or medical emergency. A healthy person in their 30s can have a sudden stroke. A person in their 40s may receive a diagnosis that changes everything. The time to create an advance care plan is when you are healthy, calm, and fully able to reflect on your values without the pressure of a medical crisis.
Advance care plans are not set in stone. They should be reviewed and updated regularly — when your health changes, when your relationships change, when your values or priorities shift, or simply every few years as a matter of good practice. A plan created at 25 may look very different from one created at 45, and both should look different from one created after a life-altering diagnosis.
The goal is not to write a document once and file it away. The goal is to maintain a living, current expression of your values — one that the people who care for you can actually use.
For the People You Do Business With, Too
As small business owners, you interact with clients, employees, vendors, and community members every day. You understand, better than most, what it means to plan ahead — to protect what you have built, to think about continuity, to make sure the people who depend on you are not left scrambling when something goes wrong.
Advance care planning is that same mindset, applied to something even more personal. The clients who come to you may never think about this. The employees who show up every day may have no idea that a car accident tomorrow could leave their family without any guidance. The friends and colleagues in your network are likely operating under the same assumption most of us make: that there will be time to deal with this later.
There is not always time.
Raising this topic in your professional community is not morbid. It is caring. It is the kind of awareness that protects families, reduces conflict, and ensures that people receive the care that actually reflects who they are — not who a checkbox said they were in a moment they do not remember.
Taking the Next Step
If you do not have a current, values-based advance care plan, this is the moment to change that.
If you have a Living Will on file but have not thought about whether it reflects your values in any depth, that is worth examining.
If the people closest to you do not know what you would want — or if your designated medical power of attorney has never had a real conversation with you about your wishes — that gap deserves attention.
An advance care planning specialist can sit with you, guide you through a process that many people describe as unexpectedly meaningful, and help you produce a set of documents that does what these documents are supposed to do: give your voice back to you, even when you cannot speak.
You have spent years building a business, protecting your assets, and planning for the future. Your values — and the values of the people you care about — deserve the same level of care and attention.
Consider scheduling a conversation with an advance care planning specialist. Not because something is wrong. Because the people you love are worth that kind of preparation. And so are you.
Advance care planning services are available through professionals such as Peter Abraham, BSN, RN, at Compassion Crossing, LLC, who are specifically trained in values-based care decisions. A specialist can help you and your family members create a complete, up-to-date advance care plan that gives your healthcare providers and your medical power of attorney the clarity they need to honor your wishes with confidence when it matters most.
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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.
