People spend months planning a birth. Childbirth classes. Written birth plans. Conversations about pain control and emergency scenarios before the first contraction ever starts.
Death, which is just as certain, rarely gets even a fraction of that planning. Families end up answering life-or-death questions in fluorescent-lit hallways, under pressure, with no written guidance to lean on.
This article is about changing that. About treating planning for a good death as an act of love, just as tender and responsible as planning for a good birth.
Looking at Birth and Death as Acts of Love
Picture a young couple sitting in a childbirth class. The instructor walks through a worksheet: “Who do you want in the room?” “What pain medicine sounds acceptable?” “If labor does not progress, how do you feel about a cesarean?” The couple checks boxes, adds notes, and walks away with a birth plan that the team reviews when they arrive in labor. Their values are in writing, not floating around in someone’s memory.
Now, picture a retired nurse named Gloria at her kitchen table with her son and an advance care planning specialist. The specialist asks, “When you imagine the last chapter of your life going as well as possible, what stands out?” Gloria answers, “I want pain treated. I want to stay at home if we can safely. I do not want machines keeping me alive if I would never wake up.”
The specialist does not stop at those sentences. They ask follow-up questions. They say, “Let’s turn that into a medical living will that spells out what ‘pain treated’ and ‘no machines’ actually mean.” Together, they write down Gloria’s values and translate them into specific medical choices that will later inform DNR decisions, code status, and any future POLST/MOLST/MOST orders.
Then there is the family without any plan. It is three in the morning in the ICU. The physician says, “Your dad’s blood pressure is dropping. If his heart stops, do you want us to do CPR and put in a breathing tube?” Five faces look at each other. Someone remembers him saying once, “I do not want to suffer,” but nothing else. Those words, without a medical living will to back them up, give the team nothing specific to follow. CPR? Dialysis? BiPAP? Surgery? No one knows.
Both families love their person. Only one group has something in writing that turns love into a usable plan.
What Advance Directives Actually Are, Not Just Paperwork
An advance directive is a set of documents where you:
Name who you trust to make medical decisions if you cannot.
Spell out what kinds of medical treatments fit your values and what do not.
At a minimum, most adults need:
A medical living will or advance directive for healthcare that defines your goals and limits for treatment.
A healthcare power of attorney (healthcare proxy) who speaks for you when you cannot.
A financial power of attorney holder who can manage money and logistics during serious illness.
The medical living will is where your values live. It is where you define what “suffering” means to you, what “a good death” looks like, and which treatments would cross your own red lines. It is not just a checkbox form. When done well, it contains clear, value-based instructions that clinicians can use for years, across many different illnesses, not just in the last hours.
POLST, MOLST, and MOST forms are different. They are medical orders, not value documents. They are meant for people with serious illnesses or frailty who may face emergencies soon. They are signed by a clinician and tell emergency teams what to do right now, such as performing CPR, intubating, and transferring. They should be guided by the medical living will, not replace it or guess at values.
Optional documents can add important detail:
Dementia care directives that say what should happen once walking, swallowing, or recognition are lost.
Mental health advance directives that guide psychiatric care if someone loses judgment during a crisis.
State-specific options that address topics such as VSED, where allowed, and other ethically complex choices.
Without these layers, a single phrase like “comfort measures only” or “I do not want to suffer” becomes a blank screen that each clinician fills in differently.
DNR, “Do Not Treat,” and Why Words Must Be Defined
DNR means Do Not Resuscitate. That is it. It means that if your heart stops or you stop breathing, the team will not start CPR and will not do advanced resuscitation such as shocks or intubation. It does not automatically include anything about antibiotics, surgery, dialysis, pressors, or ICU admission unless your plan spells that out.
You and I know this. Many nurses know this. Yet staff still sometimes act as if DNR means “do not escalate care” or “do not do anything big.” That is why your point is so crucial: DNR is only about resuscitation unless the living will and related orders say more. DNR does not equal “do not treat.”
The same problem shows up in the phrase “I do not want to suffer.” You and I hear that and immediately think about pain, gasping for breath, anxiety, agitation, and spiritual distress. On paper, though, with no detail, “I do not want to suffer” is clinically useless. Does it mean:
No CPR.
No prolonged ICU stay.
No noninvasive ventilation.
No feeding tube.
No chemo.
Full treatment up to a point, then transition to hospice.
No one can tell if it is not defined.
A value-based medical living will, written with an advance care planning specialist, takes that vague sentence and grows it into specifics:
“If my heart stops and I have advanced dementia or a terminal illness, I do not want CPR.”
“If I cannot recognize my family, cannot walk, and need total help for daily care, I prefer comfort-focused care only and no hospital transfers for infections.”
“If I am in an accident with a good chance of recovery, I accept short-term ICU and ventilator support, but I do not want tracheostomy or long-term life support if there is little hope of meaningful recovery.”
Those concrete sentences are what actually guide care.
How the Medical Living Will Drives Care, and How POLST Can Help or Harm
The medical living will is the map. It holds your values, your red lines, and your definitions of suffering and comfort. It applies across time and settings. It tells your future healthcare agent and future clinicians what matters to you, whether you are in a clinic, hospital, nursing facility, or at home.
POLST/MOLST/MOST forms are snapshots. They are signed orders that say, “Given what we know about this person’s illness right now, here is what to do in the next crisis.” They are supposed to be based on a conversation that begins with the living will and concludes with specific medical orders aligned with it.
When it goes well, you see something like this:
The living will says, “If I have advanced dementia and cannot walk or recognize my family, I want comfort-focused care only.”
The advance care planning specialist sits with the patient, family, and clinician. They review those values.
The POLST is completed to reflect “Do Not Resuscitate” and limited or comfort-focused interventions that truly match the defined values.
Then, when a crisis hits, the orders on the POLST align with the deeper value language in the living will. Staff is not guessing.
When it goes badly, the living will get ignored. A rushed clinician or facility staff member fills out a POLST checkbox form in under five minutes. Maybe they default to “Full Treatment” because “you never know.” The date on that POLST is recent, so in practice, it outweighs the older living will that took real thought years earlier. The result: aggressive interventions that the person would never have chosen if anyone had honored the original roadmap.
You are also right about “comfort measures only.” Without careful definition in the living will and in the POLST instructions, “comfort” can become a dumping ground for all sorts of interventions that may not be comfortable at all.
Dialysis can be labeled “comforting” if someone argues it eases shortness of breath, even when the patient previously said they do not want dialysis.
Repeat blood draws, frequent imaging, and transfers can creep in under the idea of “treating discomfort,” unless the directive clearly says, “No hospital transfers for potentially reversible infections” or “No dialysis under any circumstances.”
Even something as simple as oxygen can be framed as “comfort,” when in fact it may prolong dying, cause agitation, or worsen carbon dioxide retention in some patients.
This is exactly your point. Unless you define comfort in writing, “comfort measures only” becomes a blank check, not a protection.
Oxygen, Medications, and Why “Comfort” Needs Guardrails
Oxygen feels harmless. A nasal cannula looks gentle. Families often ask for it because they see low oxygen saturation on the monitor and feel it’s kind to do so.
The evidence is more complicated. Many dying patients do not benefit from oxygen therapy in terms of comfort. Oxygen can dry out mucous membranes, cause agitation, and add equipment noise without reducing the subjective sense of breathlessness. In some conditions, high-flow oxygen can even worsen carbon dioxide retention and lead to headaches, confusion, or deeper sedation.
You know this clinically. The nuance matters.
A strong, value-based living will might include statements like:
“If I did not require oxygen before I was terminal, do not start oxygen near the end of life solely to raise numbers, unless I clearly say it helps my comfort at that time.”
“If oxygen causes agitation, remove it, even if my saturation looks low.”
“If breathing is difficult, I prefer low-dose opioids and anti-anxiety medicines over high-flow oxygen or BiPAP.”
Suddenly, “comfort measures” have boundaries. The nurse is not forced to choose between the monitor and the patient’s face. The living will speaks clearly.
The same can be done for dialysis, antibiotics, transfusions, and surgeries. Comfort is what the patient defines. The job of the specialist is to help them get those definitions out of their head and onto the page in language healthcare teams can follow.
Dementia, Mobility Loss, and Why Planning Needs to Start Early
All progressive dementias eventually affect more than memory. Over time, most people develop problems with walking, balance, swallowing, and basic self-care. In late stages, they often cannot walk independently, transfer without help, or reliably recognize family members. At that point, each fall, infection, or sudden decline becomes a trigger for big decisions.
Some dementias, especially vascular or multi-infarct types, show balance problems and falls earlier, even while memory seems relatively preserved. Families may feel blindsided when the first broken hip or serious fall arrives, and they are suddenly asked, “Do you want surgery?” “Should we send them to rehab?” “Do you want another hospitalization?”
If there is no dementia-specific directive, every crisis is a new fight, sometimes between siblings, sometimes between families and staff. If the living will has dementia language in it, the healthcare agent can say, “They wrote, ‘If I cannot walk without full assistance or recognize my family, I do not want surgery or hospital transfers. I want comfort care wherever I live.’ That is our guide.”
This is not theoretical. It is the difference between repeated ambulance rides and a calm, supported decline at home or in a familiar facility.
Why You Should Not Rely Only on Standard Legal Forms
Standard living will templates from attorney offices are built to be legally valid, not clinically rich. They often use phrases like “heroic measures” and “artificial life support” without defining what those mean. They rarely address dementia stages, mental health crises, oxygen, dialysis, or detailed hospital transfer preferences.
Even elder-law attorneys, who care deeply about their clients, may not know about dementia-specific directives or psychiatric advance directives. They may not routinely discuss how a future POLST/MOLST/MOST should be drafted so that it does not accidentally conflict with the deeper living will. They may never see the practical chaos that vague wording creates on a busy hospital floor.
Advance care planning specialists and health navigation specialists live in that space. They:
Start with the person’s values, fears, and goals, not checkboxes.
Understand the ethical and clinical implications of code status, DNR, DNR/DNI, and “comfort-focused” orders.
Help patients and families write clear living wills.
Then help clinicians complete POLST/MOLST/MOST in a way that reflects those values rather than overrides them.
They know that “I do not want to suffer” must turn into phrases like “No CPR,” “No dialysis,” “No feeding tubes,” “No noninvasive ventilation,” or “Hospital transfers only if they will likely restore function and meaningful interaction.” Without that, the chart is full of good intentions and empty guidance.
Starting at 18: Making Advance Directives a Normal Part of Adult Life
Once you are 18, no one automatically has the legal right to make decisions for you or see your medical information. That includes parents. A college student with a brain injury, a young parent with a sudden stroke, or a 40-year-old with a catastrophic infection can end up in an ICU where clinicians have no clear agent to talk to and no written values to consult.
Advance directives should be as routine as adult paperwork, like naming a beneficiary on a retirement account. Major life events are natural times to update them: moving to a new state, a serious diagnosis, a big surgery, a marriage, a divorce, or the birth of a child. Each milestone shifts your priorities and might change who should be your healthcare power of attorney or what burdens you are willing to accept.
Just as important, people need to know where the documents are. A living will that only lives in a bank box is as useful as no living will at all during an emergency. A practical approach:
Keep a clearly labeled folder at home.
Give copies to your healthcare agent and backup agent.
Upload documents to your patient portal if available.
Have a wallet card stating that you have an advance directive and naming your agent.
Steps You Can Take This Month
If you are reading this as an individual, start tiny. Pick one person you trust and ask, “If I were in a coma or had advanced dementia, would you be willing to make medical decisions for me based on my wishes?” If they say yes, complete a healthcare power of attorney and a basic medical living will, which you plan to refine later with a specialist.
If you are a caregiver or family member, schedule a calm conversation, not during a crisis. You might say, “I want to make sure I know what matters most to you if you cannot speak for yourself. Can we talk with someone who specializes in advance care planning?” Then ask the clinician to review any existing documents for clarity and alignment, specifically checking for mismatches between the living will and any POLST/MOLST/MOST documents.
If dementia or serious mental illness is already part of the picture, ask specifically about dementia directives and psychiatric advance directives. Clarify when your loved one would want to stop hospital transfers, decline surgery, or refuse feeding tubes. Make sure any DNR orders and future POLST orders are rooted in those written preferences, not in someone else’s assumptions.
Your Next Conversation, Your Next Document
Imagine a labeled folder on a shelf, with your name on the front. Inside are:
A value-rich medical living will, written with someone who understands both ethics and bedside realities.
A signed healthcare power of attorney naming someone who knows your heart.
Any necessary state-specific orders, like POLST or MOLST, are carefully aligned with your values.
When a crisis comes, your healthcare agent can hand that folder to the team and say, “This is who they are. This is what they chose.” The team is not guessing. Your family is not arguing in the hallways. You do not rely on soft phrases like “I do not want to suffer” to carry more weight than they ever could on their own.
Planning for a good death does not happen in the ICU at three in the morning. It happens now, at your kitchen table, while you can still say clearly what matters to you and work with a specialist to put those values into words your future care team will actually follow.
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