Living Wills and Advance Directives: Controlling End-of-Life Decisions

The Terri Schiavo Case: 15 Years in Legal Limbo Without Documented Wishes

In 1990, Terri Schiavo suffered cardiac arrest and entered a persistent vegetative state at age 26. She had left no written advance directive. Her husband sought to remove life support in 1998; her parents fought to keep her alive. The legal battle lasted seven years, reached the U.S. Supreme Court twice, and required an act of Congress before Schiavo died in 2005. A single properly executed living will, expressing her wishes about life-sustaining treatment, would have made the outcome clear from the start. Twenty-five years after her death, surveys still find that fewer than 40% of Americans have an advance directive.

What Is an Advance Directive?

An advance directive is an umbrella term for legal documents that express your healthcare preferences in advance of a medical crisis. There are two core types:

• Living Will (Instruction Directive): A written statement of your specific wishes about medical treatments—what you want and don't want in specific medical circumstances
• Healthcare Power of Attorney (Proxy Directive): Designates a person to make healthcare decisions on your behalf when you cannot (covered separately in our power of attorney article)

Many people execute both documents simultaneously. Some states combine them into a single form called an Advance Healthcare Directive or Five Wishes.

What a Living Will Addresses

A living will speaks to specific medical interventions in defined circumstances:

The circumstances that trigger a living will's instructions typically include: terminal illness, permanent unconsciousness (vegetative state), and end-stage condition where treatment cannot restore meaningful function.

Types of Advance Directives and Specialty Forms

• Living Will: General instructions about life-sustaining treatment
• Healthcare POA/Proxy: Names an agent to make decisions
• POLST (Physician Orders for Life-Sustaining Treatment): A medical order signed by a physician for people with serious illness or advanced age; more immediately actionable than a living will in emergency settings
• DNR (Do Not Resuscitate) Order: A specific medical order not to perform CPR; must be signed by a physician to be enforceable in hospitals and by emergency responders
• Five Wishes: A legal advance directive in 47 states that combines medical, personal, and spiritual wishes in plain language

State Requirements for Execution

Living will requirements vary by state. Most require:

• The document be written (not oral)
• Signature of the person creating it (principal) while competent
• One or two witnesses who are not healthcare providers, not the agent, and not beneficiaries under any will
• Notarization (required in some states, optional in others)

Documents created in one state are generally honored in others under reciprocity principles, but it's wise to update forms when relocating to a different state.

Where to Store and Who Needs a Copy

An advance directive is useless if no one can find it when needed:

• Give a copy to your healthcare agent (proxy)
• Give a copy to your primary care physician for your medical file
• Register with your state's advance directive registry if available
• Keep a copy with your other important documents at home
• Inform family members of its existence and general content
• Carry a wallet card noting the document exists and where to find it

What Happens Without One

Without an advance directive, medical teams follow default protocols—typically erring toward life-sustaining intervention. Family members may disagree about the patient's wishes, creating painful conflicts. Most states have default surrogate decision-making laws that specify who makes decisions in order: spouse, adult children, parents, siblings. These default rules may not reflect your actual priorities or relationships.

The cost of executing an advance directive ranges from $0 (using state-provided free forms or Five Wishes, $5 online) to $250–$500 if done through an attorney as part of a comprehensive estate plan. Few documents deliver more protection for less cost.

Disclaimer: Advance directive requirements vary by state and country. This article is for informational purposes only. Consult a licensed estate planning attorney or healthcare provider for guidance specific to your circumstances.