Terminal Illness & End-of-Life Administration in the United States: 5-Step Official Checklist

1. 1

   Arrange Palliative Care or Elect the Medicare Hospice Benefit

   Start by asking your family member's treating specialist or primary care physician for a referral to palliative care or hospice, depending on their current treatment goals [1][2]:

   • Palliative care: Provides symptom management, pain relief, and care coordination at any stage of a serious illness, and can be provided alongside curative or life-prolonging treatments [2].
   • Hospice care (Medicare Part A Hospice Benefit): Focuses on comfort and quality of life at home or in an inpatient facility once curative treatment for the terminal illness stops [1][2]. Under federal Medicare Part A rules, both the person's regular physician (if they have one) and the hospice medical director must certify a terminal prognosis with a life expectancy of 6 months or less if the illness runs its normal course, and the patient (or their authorized healthcare representative) must sign an election statement choosing hospice care instead of curative treatment for the terminal condition [1]. Coverage provides two initial 90-day benefit periods followed by unlimited 60-day periods as long as a hospice physician recertifies eligibility [1].
   • If your family member is covered by employer or private insurance, state Medicaid, or Department of Veterans Affairs (VA) health care, ask the clinical care coordinator to confirm in-network hospice agencies and home-care coverage. For federal Medicare coverage questions or to compare Medicare-approved hospice providers, contact Medicare at 1-800-633-4227 (1-800-MEDICARE; TTY 1-877-486-2048) [1].
2. 2

   Complete State-Recognized Advance Directives, POLST, and a HIPAA Release

   Because legal execution rules (such as required witnesses, disqualified witnesses, or notarization) are governed by individual U.S. state statutes, complete the statutory forms for the state where your family member resides and receives care while they can clearly express and sign their wishes [2][3]:

   • Health Care Proxy (Durable Power of Attorney for Health Care): Names a trusted healthcare agent (and at least one alternate agent) to make medical decisions if the person loses decision-making capacity [2]. Depending on the state, this document may be called a Health Care Proxy (for example, in New York or Massachusetts), a Medical Power of Attorney (for example, in Texas), or an Advance Health Care Directive (for example, in California) [3].
   • Living Will: Documents the person's specific instructions regarding life-sustaining interventions - including cardiopulmonary resuscitation (CPR), mechanical ventilation, artificial nutrition and hydration, and comfort care [2].
   • HIPAA Release (Authorization): A signed authorization under the federal Health Insurance Portability and Accountability Act lets clinicians, hospitals, and health plans share protected health information and billing details with designated family members immediately, even while the patient still has capacity and before a Health Care Proxy takes effect [4].
   • POLST or MOLST (Physician or Medical Orders for Life-Sustaining Treatment): Unlike a Living Will, a state POLST or MOLST form (such as POLST in California or Oregon, or MOLST in New York) is an actionable medical order signed by a physician, nurse practitioner, or physician assistant that Emergency Medical Services (EMS) and hospitals must follow immediately during an emergency [2]. Ask the treating clinician to complete this order with your family member and keep a copy visible at home.

   You can request free federal advance care planning guides from the National Institute on Aging at 1-800-222-2225 or [email protected] [2], and download free state-specific advance directive forms from CaringInfo at 1-800-658-8898 [3]. Provide signed copies to the medical team, the named healthcare agent, and local hospital electronic health record portals [2].

3. 3

   Execute a Durable Financial Power of Attorney

   A medical proxy does not grant legal authority to manage bank accounts, real estate, tax filings, insurance claims, or government benefits [2][5]. While your family member has legal capacity:

   • Sign a state-compliant Durable Financial Power of Attorney: Ensure the document is explicitly "durable" under state law (many states follow the Uniform Power of Attorney Act, while states such as New York have specific statutory short forms) so the financial agent's authority remains valid if the principal becomes incapacitated [5]. Decide whether the power of attorney should take effect immediately upon signing (allowing the agent to help pay bills and manage paperwork right away) or only upon a physician's written certification of incapacity.
   • Verify bank and brokerage requirements in advance: Contact the person's primary banks, mortgage servicer, and investment firms now. Many financial institutions require their own internal power of attorney forms or advance legal department review before honoring a state statutory form.
   • For plain-language fiduciary guides on acting as a financial agent, contact the Consumer Financial Protection Bureau at 1-855-411-2372 [5]. To connect with local Area Agencies on Aging, caregiver support, and state elder law resources, contact the Eldercare Locator at 1-800-677-1116 [6].
4. 4

   Claim Expedited Social Security Disability and Protect Caregiver Leave

   • Social Security Compassionate Allowances and TERI: If your family member is under full retirement age and can no longer work, apply immediately for federal Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) [7]. Explicitly state the terminal diagnosis and any hospice enrollment on the application so the Social Security Administration flags the claim under its Terminal Illness (TERI) procedure and screens it against the Compassionate Allowances list, which fast-tracks medical determinations for qualifying life-limiting conditions to weeks rather than months [7]. Call the Social Security Administration at 1-800-772-1213 (TTY 1-800-325-0778) to file or expedite a pending claim [7].
   • Federal FMLA and State Paid Family Leave: Under the federal Family and Medical Leave Act (FMLA), an eligible employee of a covered employer (generally 50 or more employees within 75 miles, or a public agency) may take up to 12 weeks of unpaid, job-protected leave in a 12-month period to care for a covered immediate family member (a spouse, child, or parent) with a serious health condition, supported by medical certification form WH-380-F [8]. For questions on federal leave eligibility, contact the U.S. Department of Labor Wage and Hour Division at 1-866-487-9243 [8]. In addition, check whether the caregiver works in a state with a statutory Paid Family Leave insurance program (such as California, New York, New Jersey, Washington, Massachusetts, or Oregon), which may provide partial wage replacement and sometimes covers a broader range of family relationships.
5. 5

   Organize Wills, POD/TOD Beneficiary Designations, and Vital Documents

   • Review Payable-on-Death (POD) and Transfer-on-Death (TOD) designations: Check primary and contingent beneficiary designations on all life insurance policies, 401(k) and 403(b) plans, IRAs, and pensions, as these contractual designations generally override instructions in a will (note that federal ERISA rules and community-property state laws often require written spousal consent if someone other than a current spouse is named). Where appropriate, add Payable-on-Death (POD) designations to bank accounts and Transfer-on-Death (TOD) registrations to brokerage accounts (and TOD real estate deeds or vehicle titles in states that recognize them) so those assets transfer directly outside probate.
   • Update or execute a Last Will and Testament: Confirm that your family member's will (and any revocable living trust) is signed, witnessed, and notarized according to their state's statutory formalities (including a self-proving affidavit where available) so the named executor or personal representative can administer remaining estate assets smoothly.
   • Assemble a central vital documents folder: Gather original or certified copies of birth and marriage or divorce certificates, Social Security cards, military discharge records (DD-214 if applicable), property deeds, vehicle titles, insurance policies, recent tax returns, and a secure written inventory of digital accounts, passwords, and recurring household bills [2].

Official Authorities & Verified Contacts

Official Sources Checked by Clarvia

1. [1]
   Hospice care coverage — Medicare.gov (Centers for Medicare & Medicaid Services)
2. [2]
   Advance Care Planning: Advance Directives for Health Care — National Institute on Aging (NIH)
3. [3]
   Advance Directives — CaringInfo (National Alliance for Care at Home)
4. [4]
   Sharing Health Information with Family Members and Friends — U.S. Department of Health and Human Services (HHS)
5. [5]
   Managing Someone Else's Money — Consumer Financial Protection Bureau (CFPB)
6. [6]
   Eldercare Locator — U.S. Administration for Community Living (ACL)
7. [7]
   Compassionate Allowances — Social Security Administration (SSA)
8. [8]
   Family and Medical Leave Act (FMLA) — U.S. Department of Labor Wage and Hour Division