Toolkit · Healthcare
The Advance Directive and End-of-Life Decision Toolkit
42 U.S.C. § 1320
- Type
- Toolkit
- Jurisdiction
- National
- Date
- 2025-10-25
- Topic
- Healthcare
This toolkit collects the forms, scripts, worksheets, and letters used to put end-of-life documents in place and to work through a treatment crisis. It includes a values statement worksheet, an agent selection and conversation script, drafting language for the clauses that most often go missing, a distribution log, a POLST readiness screen, and a document review trigger list. For the crisis side it includes an authority determination worksheet, a records request letter, a prognosis question set, a family meeting agenda, a time-limited trial worksheet, an ethics consultation request, and a letter contesting a futility determination. A routing table points to the other documents in this library that address adjacent problems. Everything is written to be copied, adapted, and used directly by a lawyer, a patient, or a family member.
The Advance Directive and End-of-Life Decision Toolkit
Healthcare > End-of-Life Care and Decision-Making | Published 25 October 2025 - Updated 16 August 2026 | UpLaw - uplaw.us
How to use this toolkit
Everything here is meant to be copied and adapted. Bracketed text is a prompt to you, not language to leave in.
⚠ Two cautions before you start. First, execution requirements are state law: confirm witnesses, notarization, and disqualifications before anyone signs. Second, do not draft a POLST — it is a medical order signed by a clinician, and Tool 6 is a readiness screen, not a form.
Background is in end-of-life care and decision-making and the decision someone will make for you. The step-by-step sequence is in documenting end-of-life wishes and resolving a treatment dispute.
Tool 1 — Agent selection worksheet
| Question | Primary | Alternate 1 | Alternate 2 |
|---|---|---|---|
| Name | |||
| Relationship | |||
| Mobile / email | |||
| Can be reached within one hour? | |||
| Can stay composed in a hospital? | |||
| Will ask a physician the same hard question twice? | |||
| Will carry out my wishes over a relative's objection? | |||
| Knows my values? | |||
| Has agreed to serve? | |||
| Disqualified by statute (physician, facility employee)? |
⭐ The right question is not who you love most. It is who can hold a line in a corridor at 2 a.m.
⚠ Do not name co-agents who must act together. Co-agents reproduce exactly the deadlock the document exists to prevent.
Tool 2 — The conversation script
Use this with a client, a parent, or yourself. Fifteen minutes.
"I want to ask you about something nobody enjoys discussing.
If you were badly hurt or very sick and could not speak for yourself, someone would have to make medical decisions for you. If you don't choose that person, the law chooses — and the law's choice may not be yours.
Who? Not who you love most. Who can stay calm, ask a doctor a hard question twice, and do what you asked even when your relatives are upset. And who is your backup?
What would a good outcome look like? Not a list of treatments. What does a life you'd want look like — living at home, recognizing your family, being free of pain?
What would be unacceptable? Most people answer this faster.
Would anyone in your family disagree with your choice? If so, tell me why you chose that person, in one sentence, and I'll write it down.
That's it. I'll put your answers in a document — and you'll tell the person you named, which matters more than the document does."
⭐ The fourth question prevents more litigation than any legal formality.
Tool 3 — Values statement worksheet
Complete in the principal's own words. This paragraph goes into the directive and outperforms every checkbox on the form.
What matters most to me about how I live: [Being at home. Knowing my children. Reading. Not being in pain.]
What I would find unacceptable: [Not recognizing anyone. Never leaving a bed. Months on a machine with no expectation of getting off it.]
What I have said before about this: [When my sister died on a ventilator I told my children never to do that to me.]
My religious or philosophical commitments bearing on this: [ ]
If my family disagrees, I want them to know: [I chose [name] because she will do what I asked, not what is easiest.]
How I want to be cared for at the end: [At home if possible. Comfortable. With music. Not alone.]
Tool 4 — Drafting clauses that most often go missing
Adapt to state law. Each of these fills a gap that causes real trouble.
Artificial nutrition and hydration. ⚠ Several states require express language.
"My agent is expressly authorized to consent to, refuse, or withdraw artificially administered nutrition and hydration to the same extent as any other medical treatment."
Records access.
"My agent and each alternate is my personal representative for purposes of the federal health privacy rules, and is authorized to request, receive, and review all of my protected health information, including information that would otherwise be restricted."
Framework: 42 U.S.C. § 1320d-2, 45 C.F.R. part 164, 45 C.F.R. part 160.
Others to be informed, without decision authority.
"My agent shall keep [names] informed of my condition and of decisions made. This paragraph confers no decision-making authority."
Facility admission.
"My agent may consent to my admission to a hospital, nursing facility, assisted living facility, or hospice program."
Mental health treatment. ⚠ Excluded in some states absent express authority.
"My agent may consent to or refuse mental health evaluation and treatment, [except as follows: ]."
Anatomical gift and autopsy.
"I [do / do not] make an anatomical gift of [any needed organs and tissue / the following: ]. My agent may consent to or refuse an autopsy."
Disposition of remains. ⚠ Often a separate statutory hierarchy.
"I designate [name] to control the disposition of my remains, and I direct [cremation / burial at ___ / ___]."
Successor and effective date.
"If my agent is unavailable, unwilling, or unable to serve, my alternates shall serve in the order named. My agent's authority takes effect on a determination by my attending physician that I lack capacity to make my own health care decisions, and ends if I regain capacity."
Priority statement.
"If this document conflicts with any prior health care directive of mine, this document controls. I revoke all prior health care directives."
Tool 5 — Execution and witness screen
☐ Statutory form used, or a form tracking it ☐ Principal has capacity to execute ☐ Signature by the principal, or by another at the principal's direction and in the principal's presence ☐ ⚠ Witness 1 is not the agent, the attending physician, a facility employee, or an heir ☐ ⚠ Witness 2 same ☐ Notarization obtained if the state requires it, or if travel is likely ☐ Date on the face of the document ☐ Prior originals destroyed ☐ Copies made for distribution (Tool 7)
Tool 6 — POLST readiness screen
⚠ Complete this screen; do not complete a POLST. A POLST is a medical order signed by a clinician.
☐ Does the patient have a serious progressive illness, or significant frailty? ☐ Would you be unsurprised if the patient died within a year? ☐ Does the patient live at home or in a facility where EMS would be called? ☐ Would the patient decline resuscitation outside a hospital? ☐ Does the state use POLST, MOLST, POST, or MOST? Is it statutory? ☐ Is a separate out-of-hospital DNR required? ☐ Does the form require a particular color, seal, or bracelet? ☐ May a surrogate sign for an incapacitated patient in this state?
If most answers are yes, ask the treating clinician to complete the form. Address each order line deliberately: CPR; level of intervention (comfort, limited, full); antibiotics; artificially administered nutrition.
⭐ A living will means nothing to a paramedic. An order means everything.
⚠ A DNR addresses CPR only. It does not limit surgery, antibiotics, dialysis, or intensive care. If the patient wants full treatment otherwise, chart it expressly.
Tool 7 — Distribution log
| Recipient | Copy given | Date | Confirmed in chart |
|---|---|---|---|
| Agent | n/a | ||
| Alternate 1 | n/a | ||
| Alternate 2 | n/a | ||
| Primary care physician | ☐ | ||
| Specialist(s) | ☐ | ||
| Hospital (each admission) | ☐ | ||
| Nursing / assisted living facility | ☐ | ||
| State registry | n/a | ||
| Attorney file | n/a | ||
| Wallet card carried | n/a |
⚠ Do not put the only copy in a safe deposit box. Emergency departments do not open safe deposit boxes at 3 a.m.
Tool 8 — Review trigger list
☐ Divorce or separation — ⚠ some states revoke a spouse's appointment automatically; many do not. Re-execute. ☐ Death, illness, or relocation of an agent or alternate ☐ Move to another state — ⭐ re-execute; twenty minutes removes a whole category of risk ☐ Significant diagnosis — and reassess POLST readiness ☐ Admission to a facility ☐ A change in the principal's own view ☐ Every three to five years otherwise ☐ Coordinate with building and maintaining an estate plan and the estate planning and trust funding toolkit
Tool 9 — Authority determination worksheet (crisis)
Complete this first, before any substantive discussion.
| Question | Answer | Source |
|---|---|---|
| Is a directive in the chart? | Providers must ask at admission — 42 U.S.C. § 1395cc, 42 U.S.C. § 1396a, 42 C.F.R. part 489 | |
| Does one exist elsewhere? | Get it scanned in today | |
| Who is the named agent? | ||
| Alternates and contact information? | ||
| If no agent, what is the state surrogate order? | Guardian, spouse, adult children, parents, siblings, others | |
| Is a legally separated spouse excluded? | State statute | |
| Is there a close-friend tier? | State statute | |
| How does the statute resolve disagreement within a tier? | Unanimity, majority, or silent | |
| Is there a guardian, and what does the order authorize? | ⚠ A general order may not authorize withdrawal of life-sustaining treatment | |
| Has capacity been assessed, and how documented? | Understand, appreciate, reason, express | |
| Were reversible contributors addressed? | Pain, infection, sedation, hearing aids, glasses, interpreter | |
| Is an interpreter needed? | Required — 29 U.S.C. § 794, 42 U.S.C. § 12182, 28 C.F.R. part 35, 28 C.F.R. part 36 |
⚠ Do not follow the loudest voice over the ranked one. Where a statute sets an order, departing from it is a legal error.
Tool 10 — Records request letter
[Date]
Health Information Management [Hospital]
Re: [Patient], DOB [ ], MRN [ ] — Request by personal representative
I am the health care agent for [patient] under the attached [health care proxy / medical power of attorney] executed [date]. I am therefore [patient]'s personal representative for purposes of the federal health privacy rules — 42 U.S.C. § 1320d, 42 U.S.C. § 1320d-2, 45 C.F.R. part 164.
Please provide, in electronic form where available:
- All physician and consultant notes for this admission
- Nursing notes and flow sheets
- All imaging reports
- All laboratory results
- The current medication administration record
- Any capacity assessment
- Any advance directive, POLST, or DNR order in the record
- Any documentation of family meetings or ethics consultations
Please confirm receipt and provide a date for production.
[Name] · [Telephone] · [Email]
⚠ A financial power of attorney is frequently not accepted. Attach the health care instrument.
Access mechanics generally: patient rights and medical records and obtaining, correcting, and protecting medical records.
Tool 11 — Prognosis question set
Ask these, in this order, and write down the answers.
- "What is the diagnosis, in one sentence?"
- "Give me the numbers, not the words." Out of a hundred patients in this situation, how many recover to independent living? How many survive to a facility? How many die here?
- "What does thirty days look like in the best case? In the worst case?"
- "What would change your answer?" What finding, and by when?
- "What are we treating — the illness, or the machine?"
- "What would you do if this were your parent?" Most clinicians answer this honestly when asked directly.
- "What happens if we do nothing more than keep [him/her] comfortable?"
- "Is palliative care involved? Can we get a consultation today?"
⭐ "Guarded" is not a prognosis. Numbers are.
Tool 12 — Family meeting agenda
Family meeting — [Patient] — [Date, time, location / call link]
Present: [names and relationships] · Clinical: [attending, consultants, nurse, social work, chaplain, palliative]
1. Ground rules (2 minutes). One person speaks at a time. Everyone hears the same information at the same time. No decision is required today.
2. Clinical update (10 minutes). Attending physician states diagnosis, treatment to date, and prognosis in numbers.
3. Questions (10 minutes). Use Tool 11.
4. Who decides (2 minutes). State plainly who holds authority and why.
5. What would the patient choose (15 minutes). ⭐ State the standard out loud: "We are not deciding what we want. We are deciding what she would tell us to do." Collect the evidence — what she said at another relative's death, her reaction to nursing homes and machines, her religious commitments, her prior treatment choices.
6. Options (10 minutes). Full treatment; a time-limited trial; continue but do not escalate; comfort-focused care.
7. The financial question (5 minutes). ⚠ Name it rather than letting it operate silently. Hospice covers care but generally not room and board; long-term facility care is usually a Medicaid question — medicaid and long-term care, applying for medicaid long-term care coverage, six thousand dollars a month.
8. Next step and date (5 minutes). What happens, who does it, and when we reconvene.
Documented by: [name] · Decisions recorded in the chart: ☐
⚠ Ask for palliative care by name, and say aloud that it is not hospice. The confusion costs patients weeks of avoidable suffering.
Tool 13 — Time-limited trial worksheet
⭐ The single most useful device in the field. It converts an irreversible-feeling decision into one with a date.
Trial period: [7 / 10 / 14] days, from [date] to [date]
Treatment during the trial: [full support, including ___]
Markers of improvement — all must be met: ☐ Off vasopressors for 48 hours ☐ Following simple commands ☐ Tolerating ventilator weaning trials ☐ Tolerating enteral feeds ☐ [Other: ]
If markers are met: [continue; reassess in ___ days]
If markers are not met: [transition to comfort-focused care]
Agreed by: [agent / surrogate], [family members], [attending] Entered in the chart on: [date]
⚠ Do not extend the trial indefinitely. An open-ended extension defeats the purpose and returns the family to paralysis.
⭐ Consider "continue but do not escalate" as an intermediate: full current support, a DNR, and no new interventions. It satisfies more families than clinicians expect.
Tool 14 — Ethics consultation request
To: Ethics Committee, [Hospital] Re: [Patient], MRN [ ] — request for consultation
The question presented: [Whether continued ___ is consistent with the patient's known wishes / Who holds decision-making authority / Whether the proposed limitation is appropriate].
Patient: [age, diagnosis, current status, prognosis as stated by the team].
Authority: [agent under directive dated ___ / statutory surrogate / guardian under order dated ___].
Evidence of the patient's wishes: [directive language; recorded statements; testimony].
The disagreement: [who disagrees with whom, and about what].
What has been tried: [family meetings on ___; palliative consultation on ___; time-limited trial from ___ to ___].
Requested: consultation within [24 / 48] hours, with a written summary in the chart.
The patient-rights and grievance requirements sit at 42 C.F.R. part 482. ⭐ Ethics consultation is free, usually available within a day, and valuable mostly for giving an exhausted family a neutral room.
Tool 15 — Letter contesting a futility determination
[Date]
To: [Attending physician; Chief Medical Officer; Patient Relations]
Re: [Patient], MRN [ ] — objection to proposed withdrawal of [treatment]
I am [patient]'s health care agent under the attached instrument. I object to the proposed [withdrawal / limitation] and request the following.
1. Identify the basis. Please state whether the determination rests on physiological futility — that the intervention cannot achieve its immediate physiological aim — or on a judgment about the quality of the resulting life. ⚠ The second is not a medical judgment the team may impose over a valid decision, and a determination grounded in the view that a life with disability is not worth sustaining implicates 29 U.S.C. § 794, 42 U.S.C. § 12132, and 42 U.S.C. § 12182.
2. Identify the process. Please identify the hospital policy and any state statutory process, including notice, committee review, and the period allowed to seek transfer.
3. Ethics consultation. Please convene the committee within [48] hours.
4. Transfer. Please identify facilities willing to accept transfer and assist in arranging it.
5. Preserve records. Please preserve all records relating to this admission, including internal communications about this determination.
[Name] · [Telephone] · [Email] · cc: [counsel]
⚠ 42 U.S.C. § 1395dd governs screening and stabilization at the emergency department door. It does not entitle anyone to demand continued intensive care.
Tool 16 — Hospice election screen
☐ Physician certification of a prognosis of six months or less if the illness runs its usual course — 42 U.S.C. § 1395x, 42 C.F.R. part 418 ☐ Election statement signed ☐ Level of care identified: routine home, continuous home, general inpatient, or respite ☐ ⚠ Room and board confirmed as not covered in a nursing facility ☐ Medication coverage confirmed — terminal condition versus unrelated conditions ☐ Recertification dates calendared: two 90-day periods, then unlimited 60-day periods ☐ ⚠ Family told that six months is a prognosis, not a deadline — patients who improve are discharged, not penalized ☐ ⚠ Family told the election is revocable at any time ☐ After-hours contact number posted ☐ Instructions for death at home: who to call, and whether to call 911 (usually not, with a DNR in place) ☐ Bereavement services explained
Tool 17 — After-death authority worksheet
☐ ⚠ The agent's authority ended at death. Identify the estate authority. ☐ Who controls disposition of remains under the state hierarchy? ⚠ Often a different list from the health care hierarchy. ☐ Anatomical gift: registered, refused, or unaddressed? A registration is generally binding first-person authorization. ☐ Autopsy: hospital or medical examiner? Different rules apply. ☐ Certified death certificates ordered — ten is not excessive. ☐ ⚠ Do not sign facility paperwork as agent after death; sign as personal representative once appointed. ☐ Estate opened — probate and estate administration, opening and administering a probate estate, the probate and estate administration toolkit ☐ If a relative disputes the medical decisions, expect a fiduciary claim — estate and trust litigation. ⭐ The documented family meeting and time-limited trial are the defense.
Tool 18 — Routing table
Closing card
⭐ Three things prevent almost every bad outcome: name an agent, tell them, and give the document to the doctor.
⚠ Three errors cause almost every bad outcome: the only copy is in a drawer; the named agent is an ex-spouse; and a living will gets applied to a condition it was never meant to cover.
⭐ One sentence carries a family through the worst night: "We are not deciding what we want — we are deciding what she would tell us to do."