Checklist · Healthcare
Documenting End-of-Life Wishes and Resolving a Treatment Dispute: A Practical Checklist
42 U.S.C. § 1320
- Type
- Checklist
- Jurisdiction
- National
- Date
- 2026-03-26
- Topic
- Healthcare
This checklist covers two related tasks: putting end-of-life documents in place before they are needed, and working through a treatment dispute after a crisis has begun. The first half runs from choosing an agent through execution, distribution, and periodic review, with the state-law variables that must be confirmed at each step. The second half runs from establishing who has authority through obtaining records, running a family meeting, structuring a time-limited trial, and escalating to ethics or court only when authority itself is contested. Separate sections address POLST and out-of-hospital orders for seriously ill patients at home, hospice election and revocation, and what happens to authority at death. Each item is written to be actionable by a lawyer, a family member, or a patient. Warnings mark the steps where mistakes are common and consequential.
Documenting End-of-Life Wishes and Resolving a Treatment Dispute: A Practical Checklist
Healthcare > End-of-Life Care and Decision-Making | Published 26 March 2026 - Updated 11 July 2026 | UpLaw - uplaw.us
How to use this checklist
Two paths run through it.
Path A — planning. You are healthy, or ill but stable, and want documents in place. Start at Section 1.
Path B — crisis. Someone is in a hospital right now and decisions are being made. Skip to Section 5.
⭐ If you are on Path B and there is time later, come back and do Path A for yourself. The people who plan best are almost always the people who have just been through someone else's crisis.
Background is in end-of-life care and decision-making and, in plainer terms, the decision someone will make for you. Forms and scripts are in the advance directive and end-of-life decision toolkit.
Section 1 — Choosing the agent
☐ Identify the primary agent. Ask the right question: not who you love most, but who can stay composed in a hospital, ask a physician a hard question twice, and carry out your wishes over a relative's objection. ☐ Confirm the agent is willing. Ask them. Being named is not consent. ☐ Identify at least two alternates. Agents die, travel, and become unavailable. ☐ ⚠ Do not name co-agents who must act together. Co-agents reproduce the deadlock the document exists to prevent. If family politics demand it, name one agent and give the others a stated role in being consulted. ☐ Check statutory disqualifications. Many states bar the attending physician and facility employees from serving as agent for a patient in their care. ☐ Consider geography honestly. Distance matters less than reachability, but an agent who cannot be reached by telephone within an hour is a problem. ☐ Have the conversation. Tell the agent what a good outcome looks like to you and what would be unacceptable.
Section 2 — Deciding what the document should say
☐ Describe outcomes, not treatments. "I want to be able to recognize my family" is more useful than a list of interventions you cannot evaluate. ☐ State what would be unacceptable. Most people answer this faster and more clearly than the reverse. ☐ Address artificial nutrition and hydration expressly. ⚠ Several states require specific language before an agent may decline it. Silence creates hesitation at exactly the wrong moment. ☐ Address mental health treatment if relevant; some states exclude it absent express authority. ☐ Address admission to a nursing facility if you have a view. ☐ Address organ and tissue donation. ☐ Address autopsy. ☐ Address disposition of remains, and check whether the state's disposition hierarchy differs from its health care hierarchy — it frequently does. ☐ Add a values statement in your own words. One paragraph. It outperforms every checkbox on the form. ☐ ⭐ If a relative will disagree with your choice of agent, say why you chose that person, in one sentence. This is the item that prevents litigation.
Section 3 — Executing the documents
☐ Confirm the state's execution requirements. Two witnesses, notarization, or either. ☐ ⚠ Confirm witness eligibility before signing. Commonly disqualified: the named agent, the attending physician, employees of the facility, and anyone who would inherit. Witness disqualification voids more directives than any other defect. ☐ Confirm the principal has capacity to execute. The threshold is lower than for most treatment decisions, but it is not zero. ☐ Use the statutory form where one exists, or a form that tracks it. ☐ Combine the proxy and the instructions into one instrument where state law allows. ☐ Include an express HIPAA authorization naming the agent, the alternates, and anyone else to be kept informed — the personal-representative framework sits at 42 U.S.C. § 1320d-2, with rules at 45 C.F.R. part 164 and 45 C.F.R. part 160. ☐ Date it, and destroy superseded originals. Conflicting documents surfacing at once cause delay. ☐ ⚠ Do not draft a POLST. It is a medical order signed by a clinician. See Section 4.
Section 4 — Orders for the seriously ill
Complete this section only if the patient has a serious illness or significant frailty. A healthy adult needs a directive, not an order.
☐ Determine whether the state uses POLST, MOLST, POST, or MOST, and whether it is statutory. ☐ Ask the treating clinician to complete it with the patient, or with the surrogate where authorized. ☐ Address each order line deliberately: CPR, level of intervention, antibiotics, and artificially administered nutrition. ☐ ⚠ Understand what a DNR does and does not do. It addresses whether CPR is attempted. It does not limit surgery, antibiotics, dialysis, or intensive care. Patients with DNR orders sometimes receive measurably less of everything else — a documented quality problem, not a rule. If you want full treatment otherwise, say so and have it charted. ☐ Obtain an out-of-hospital DNR if the patient is at home and would not want resuscitation there. ⭐ Paramedics cannot interpret a living will. They can follow an order. ☐ Post it where it will be found — refrigerator, bedside, or on the chart. Confirm the state's color or seal requirement. ☐ Send a copy with the patient to every transfer, and confirm it arrived. ☐ Review it after any significant change in condition or goals.
Section 5 — Crisis: establish who decides
☐ Ask whether an advance directive is in the chart. Providers participating in Medicare and Medicaid must ask about directives at admission — 42 U.S.C. § 1395cc, 42 U.S.C. § 1396a, with rules at 42 C.F.R. part 489. ☐ If a directive exists elsewhere, get it scanned in immediately. A document nobody can find does nothing. ☐ Identify the named agent and confirm the alternate's contact information. ☐ If there is no agent, identify the statutory surrogate under the state's default hierarchy — typically guardian, spouse, adult children, parents, adult siblings, then others, with a close-friend tier in some states. ☐ ⚠ Do not follow the loudest voice over the ranked one. Where a statute sets an order, departing from it is a legal error. ☐ If a guardian exists, read the order. ⚠ A general guardianship order does not automatically authorize withholding or withdrawing life-sustaining treatment; many states require specific authorization. ☐ If nobody qualifies, ask about the hospital's unrepresented-patient process — ethics committee authorization or a two-physician mechanism in some states, guardianship in others. ☐ Confirm the capacity determination. Ask what was explained, what the patient said back, and how they reasoned. ⚠ Disagreement with the physician is not incapacity. ☐ Ask whether reversible contributors were addressed — pain, infection, metabolic derangement, sedating medication, missing hearing aids or glasses, absence of an interpreter. ☐ Request an interpreter if communication is the barrier. Effective communication is required by 29 U.S.C. § 794 and 42 U.S.C. § 12182, with rules at 28 C.F.R. part 35 and 28 C.F.R. part 36.
Section 6 — Get the information
☐ Confirm the agent's status as a HIPAA personal representative. A validly appointed health care agent generally qualifies under 42 U.S.C. § 1320d and 45 C.F.R. part 164. ☐ ⚠ Do not expect a financial power of attorney to work. Many grant no medical authority and many providers will not accept one. ☐ Request the chart, not just a summary: physician notes, consultant notes, imaging reports, and the medication list. ☐ Ask for the prognosis in numbers. "Guarded" is not a prognosis. "Roughly one in four patients in this situation ever comes off the ventilator" is. ☐ Ask what the range looks like at thirty days, in the best case and the worst case. ☐ Ask what would change the answer — what finding, at what point, would make the team more or less optimistic. ☐ Ask what the team would recommend if this were their own parent. Most clinicians will answer honestly when asked directly. ☐ Write down who said what, and when. Mechanics of access and correction are in obtaining, correcting, and protecting medical records and patient rights and medical records.
Section 7 — Run the family meeting
☐ Schedule it with the attending physician present, not a resident alone. ☐ Get everyone in the same room or on the same call. ⭐ Most family disputes are information disputes: relatives who heard different things from different people on different days. ☐ Have the physician state the prognosis once, in numbers, to everyone at the same time. ☐ Request a palliative care consultation. ⚠ Say plainly to the family that palliative care is not hospice and does not mean stopping treatment. It is a specialty in exactly this conversation and is chronically under-requested. ☐ State the decision standard out loud: "We are not deciding what we want. We are deciding what she would tell us to do." ☐ Collect the evidence of the patient's own wishes — statements at another relative's death, reactions to nursing homes and machines, religious commitments, prior treatment choices. ☐ Name the money question rather than letting it operate silently. Hospice covers care but generally not room and board; long-term facility care is usually a Medicaid question. See medicaid and long-term care and six thousand dollars a month. ☐ Document the meeting: who attended, what was said, what was decided.
Section 8 — The time-limited trial
⭐ This is the most useful device in the field. It converts a decision that feels irreversible into a decision with a date.
☐ Agree on a period. Seven to fourteen days is typical. ☐ Agree on markers of improvement, stated concretely: off vasopressors, following commands, weaning from the ventilator, tolerating feeds. ☐ Agree on what happens if the markers are not met — usually transition to comfort-focused care. ☐ Put it in writing in the chart. ☐ Reconvene on the date, not before and not later. ☐ ⚠ Do not extend the trial indefinitely. An open-ended extension defeats the entire purpose and leaves the family in the same paralysis. ☐ Consider "continue but do not escalate" as an intermediate step — full current support with a DNR and no new interventions. It satisfies more families than clinicians expect.
Section 9 — When agreement fails
☐ Request an ethics consultation. Every hospital participating in Medicare has a mechanism; the patient-rights and grievance requirements sit at 42 C.F.R. part 482. It is free, usually available within a day, and advisory. ☐ Use the hospital grievance process if the objection is to the care itself. ☐ If the team says treatment is futile, ask which kind. Physiological futility — the intervention cannot achieve its physiological aim — is generally the clinician's call. A judgment about quality of the resulting life is not. ☐ ⚠ Watch for disability discrimination. A decision grounded in a judgment that a life with disability is not worth sustaining is unlawful — 29 U.S.C. § 794, 42 U.S.C. § 12132. See disability access and public accommodations. ☐ Ask whether the state has a futility statute, and if so what notice, review, and transfer period it requires. ☐ Ask about transfer to a facility willing to provide the disputed treatment. Request that the hospital assist. ☐ If the dispute is at the emergency department door, note that 42 U.S.C. § 1395dd requires screening and stabilization regardless of ability to pay — it does not, however, entitle anyone to demand continued intensive care. ☐ Go to court only if authority itself is contested — who is the agent, whether the guardian has power, whether a directive is valid. ⚠ Courts are slow, public, and blunt instruments for a question this intimate.
Section 10 — Hospice and comfort care
☐ Confirm the physician certification of a prognosis of six months or less if the illness runs its usual course — the benefit sits at 42 U.S.C. § 1395x, with conditions at 42 C.F.R. part 418. ☐ Sign the election statement, which substitutes hospice for curative treatment of the terminal condition. ☐ ⚠ Confirm what is not covered: room and board in a nursing facility. Families are routinely blindsided by this. ☐ Ask which level of care applies — routine home care, continuous home care during a crisis, general inpatient care, or respite. ☐ Confirm that the election is revocable at any time. A patient may return to standard Medicare coverage. ☐ Confirm recertification dates — two 90-day periods, then unlimited 60-day periods. ⚠ Six months is a prognosis, not a deadline; patients who improve are discharged, not penalized. ☐ Confirm medication coverage for the terminal condition and for unrelated conditions, which are handled differently. ☐ Confirm after-hours contact and what to do if the patient dies at home — who to call, and whether to call 911 (usually not, if a DNR is in place).
Section 11 — Distribute, and keep it findable
☐ Give the agent an original or a full copy. ☐ Give each alternate a copy. ☐ Give the primary care physician's office a copy and ask that it be scanned into the record. ☐ Give the hospital a copy at each admission. ☐ Give the facility a copy on admission to any nursing or assisted living facility. ☐ Carry a wallet card naming the agent with a telephone number. ☐ Register with a state registry where one exists. ☐ ⚠ Do not put the only copy in a safe deposit box. Emergency departments do not open safe deposit boxes. ☐ Tell the family who the agent is, and ideally why.
Section 12 — Review and re-execute
☐ On divorce or separation. ⚠ Some states revoke a spouse's appointment automatically; many do not. Do not assume. Re-execute. ☐ On the death, illness, or relocation of an agent or alternate. ☐ On a move to another state. Most states honor out-of-state directives, but an unfamiliar form causes hesitation at 2 a.m. ⭐ Re-executing takes twenty minutes and removes a whole category of risk. ☐ On a significant diagnosis, and consider whether a POLST is now appropriate. ☐ On entry to a facility. ☐ Every three to five years otherwise. ☐ Whenever the values statement no longer sounds like you. ☐ Coordinate with the estate plan — building and maintaining an estate plan, the estate planning and trust funding toolkit, and powers of attorney and advance directives.
Section 13 — After death
☐ ⚠ Understand that the agent's authority ends at death. What follows is estate authority. ☐ Confirm who controls disposition of remains under the state hierarchy — it is often a different list from the health care hierarchy. ☐ Address organ and tissue donation. A registration is generally a binding first-person authorization that survivors may not revoke, though procurement organizations rarely proceed over vehement objection. ☐ Decide about autopsy, and note that a hospital autopsy and a medical examiner's autopsy follow different rules. ☐ Obtain multiple certified death certificates — ten is not excessive. ☐ Do not sign facility paperwork as agent after death. Sign as the personal representative, once appointed. ☐ Open the estate — probate and estate administration and opening and administering a probate estate. ☐ If a relative disputes the medical decisions, expect it to surface as a fiduciary claim in the estate — see estate and trust litigation. ⭐ A documented family meeting and a documented time-limited trial are the best defense there is.
The ten-minute version
☐ Name an agent and two alternates. ☐ Tell them. ☐ Write one paragraph about what a good outcome and an unacceptable outcome look like to you. ☐ Execute with eligible witnesses. ☐ Give copies to the agent, the alternates, and your doctor. ☐ Add a POLST if you are seriously ill. ☐ Re-check on divorce, a move, a death, or a diagnosis.
⚠ And in a crisis: find out who has authority, get the numbers, ask for palliative care, propose a time-limited trial, and ask the substituted-judgment question — not what you can bear, but what they would tell you to do.
Section 14 — State-law variables to confirm first
Because the substance is state law, confirm these before advising or acting. Answer them once for your state and keep the answers on one page.
☐ Is there a statutory form, and is it mandatory or a safe harbor? ☐ Two witnesses, notarization, or either? ☐ Which witnesses are disqualified — agent, attending physician, facility employee, heir? ☐ May the principal sign by direction if physically unable to sign? ☐ Is out-of-state execution honored by statute, or only by comity? ☐ Does divorce revoke a spouse's appointment automatically? ☐ Is express language required before an agent may decline artificially administered nutrition and hydration? ☐ Is mental health treatment excluded absent specific authority? ☐ Is there a default surrogate statute, and what is the order of tiers? ☐ Is a legally separated spouse excluded? ☐ Is there a close-friend tier, and what affidavit does it require? ☐ How is disagreement within a tier resolved — unanimity, majority, or silence? ☐ Is there an unrepresented-patient mechanism short of guardianship? ☐ Does the state use POLST, MOLST, POST, or MOST, and is it statutory? ☐ Is there a separate out-of-hospital DNR form, and does it require a particular color or seal? ☐ May a surrogate sign a POLST for an incapacitated patient? ☐ Is there a futility statute, and what notice, review, and transfer period does it require? ☐ What immunity attaches to good-faith compliance with a directive? ☐ Does a guardian need specific court authorization to withhold or withdraw treatment? ☐ What is the disposition-of-remains hierarchy, and does it match the health care hierarchy? ☐ May the principal designate an agent for disposition of remains, and in what form? ☐ Has the state adopted first-person authorization for anatomical gifts?
Section 15 — Common failure points, and the fix
| Failure | How it shows up | The fix |
|---|---|---|
| Nobody can find the document | Family says one exists; hospital has nothing | Copies to agent, alternates, physician, and chart; wallet card |
| The agent did not know | Agent is surprised and unprepared at the bedside | Ask them in advance; have the conversation once |
| The document is stale | Named agent is an ex-spouse or has died | Re-execute on divorce, death, move, or diagnosis |
| Witnesses were disqualified | Directive is challenged and set aside | Confirm eligibility against the statute before signing |
| Living will applied outside its trigger | Treatment withheld from a patient with a good prognosis | ⚠ Read the trigger before reading the instruction |
| Co-agents deadlock | Two children with equal authority disagree | Name one agent and alternates |
| EMS resuscitates against wishes | Paramedics called to a home ignore a living will | Obtain a POLST or out-of-hospital DNR |
| DNR read as "no treatment" | Patient receives less of everything | Chart the scope expressly |
| Surrogate applies the wrong standard | "I can't let her go" | State the substituted-judgment question out loud |
| Money drives the decision silently | Family stops treatment without saying why | Name the financial question in the meeting |
| Palliative care declined as "giving up" | Weeks of avoidable suffering | Explain that palliative care is not hospice |
| Dispute goes to court prematurely | Months of delay, public filings | Ethics consultation, transfer, time-limited trial first |
⭐ Every one of these failures is cheap to prevent and expensive to fix. The prevention side of this checklist takes an afternoon.