Living Will and Advance Directives: Complete Guide to End-of-Life Planning

A living will is one of the most important legal documents you can prepare, yet many people delay or avoid creating one. This comprehensive guide explains what a living will is, why you need one, and how to create advance directives that ensure your medical wishes are respected when you cannot communicate them yourself.

Whether you’re young and healthy or facing serious medical conditions, having these documents in place provides peace of mind for you and your loved ones during difficult times.

What Is a Living Will?

A living will is a legally binding document that outlines your preferences for medical treatment in situations where you are unable to communicate your wishes. Unlike a traditional will that addresses property and assets after death, a living will focuses on healthcare decisions while you are still alive but incapacitated.

This document becomes active when you cannot make or express healthcare decisions due to conditions such as:

• Terminal illness
• Severe injury or trauma
• Coma or persistent vegetative state
• Advanced dementia or Alzheimer’s disease
• End-stage medical conditions

Many people mistakenly believe living wills are only for elderly individuals. However, unexpected accidents and medical emergencies can happen at any age, making it essential for all adults over 18 to have these documents prepared.

Understanding Advance Directives

Advance directives is a broader term that encompasses several legal documents related to healthcare planning. A living will is one type of advance directive. These documents work together to ensure your medical wishes are followed and that someone you trust can make decisions on your behalf.

The main types of advance directives include:

• Living will
• Healthcare power of attorney (also called healthcare proxy)
• Do Not Resuscitate (DNR) orders
• Do Not Intubate (DNI) orders
• Physician Orders for Life-Sustaining Treatment (POLST)

Together, these documents create a comprehensive healthcare plan that guides medical professionals and family members when making critical decisions about your care.

Healthcare Power of Attorney: Choosing Your Medical Advocate

A healthcare power of attorney is a crucial component of advance care planning. This legal document allows you to designate a trusted person to make medical decisions on your behalf when you are unable to do so yourself.

Depending on your state, the person you appoint may be referred to as:

• Healthcare agent
• Healthcare proxy
• Healthcare surrogate
• Healthcare representative
• Patient advocate
• Healthcare attorney-in-fact

Selecting the Right Healthcare Agent

Choosing your healthcare agent is one of the most important decisions you’ll make in advance care planning. This person will need to advocate for your wishes, potentially during emotionally charged situations. Consider these factors when selecting your healthcare agent:

• Meets legal requirements: Your state may have specific requirements regarding who can serve as a healthcare agent
• Not part of your care team: Generally, your healthcare providers cannot serve in this role to avoid conflicts of interest
• Comfortable with difficult conversations: Your agent should be willing to discuss end-of-life issues openly and honestly
• Respects your values: Choose someone who will honor your wishes even if they personally disagree
• Can handle conflict: Your agent may need to advocate firmly with medical staff or family members who disagree with your directives
• Available and accessible: Consider whether this person lives nearby and can be reached quickly in emergencies

You can name alternate agents in case your primary choice is unavailable or unable to fulfill the role when needed. Common choices include spouses, adult children, siblings, close friends, or trusted members of your faith community.

Key Medical Decisions Covered in a Living Will

A comprehensive living will addresses numerous medical scenarios and treatments. Understanding these options helps you make informed decisions that align with your values and beliefs about quality of life.

Cardiopulmonary Resuscitation (CPR)

CPR is an emergency procedure used when your heart stops beating. It involves chest compressions and potentially electric shocks from a defibrillator to restart the heart. In your living will, you can specify whether you want CPR attempted and under what circumstances.

Mechanical Ventilation

A mechanical ventilator is a machine that breathes for you when you cannot breathe independently. Your living will should address whether you want to be placed on a ventilator, for how long, and under what conditions you would want it removed.

Artificial Nutrition and Hydration

Tube feeding provides nutrients and fluids through a tube inserted into your stomach or through an intravenous line. Consider whether you would want this intervention if you could no longer eat or drink on your own, and if so, for how long and under what conditions.

Dialysis Treatment

If your kidneys fail, dialysis removes waste products from your blood. This treatment requires regular sessions, often multiple times per week. Decide whether you would want to receive dialysis if your kidneys stopped functioning, particularly in end-of-life situations.

Cardiac Devices

If you have a pacemaker or implantable cardioverter defibrillator (ICD), your living will should specify when you would want these devices deactivated. These devices can prolong life even when your natural death would otherwise occur.

Medications and Treatments

Your living will can address your preferences regarding medications for infections and other conditions. If you are facing a terminal diagnosis, would you want aggressive treatment of infections, or would you prefer comfort-focused care? Always consult with your healthcare provider about medication decisions and treatment options appropriate for your specific situation.

Comfort Care and Palliative Care

Comfort care, also known as palliative care, focuses on managing pain and maintaining quality of life rather than curing disease. You can specify your preferences for:

• Pain medication and symptom management
• Location of care (home, hospital, hospice facility)
• Comfort measures like ice chips for dry mouth
• Avoiding invasive tests or procedures
• Spiritual care and counseling

Organ and Tissue Donation

You can indicate in your living will whether you wish to donate organs and tissues. If you choose donation, understand that life-sustaining treatment may continue briefly after death to preserve organs for transplant. Clearly stating this in your living will helps avoid confusion with your healthcare agent.

Body Donation for Research

If you wish to donate your body to medical science, note this preference in your living will. Contact local medical schools, universities, or donation programs in advance to complete necessary registration paperwork.

Do Not Resuscitate and Do Not Intubate Orders

Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders are specific medical orders that direct healthcare providers not to perform CPR or intubation if your heart stops or you stop breathing. These orders differ from living wills in important ways:

• They are medical orders written by your physician, not advance directive documents
• They become part of your active medical chart
• They provide immediate direction to emergency responders and hospital staff
• They don’t require advance directive paperwork to establish

To establish DNR or DNI orders, discuss your wishes with your healthcare provider, who will document them in your medical records. Even if you have a living will that addresses resuscitation, it’s advisable to establish formal DNR or DNI orders each time you’re admitted to a new healthcare facility.

Keep copies of these orders at home where emergency responders can easily find them. Some states offer DNR identification bracelets or necklaces for people who want these orders followed in any emergency situation.

How to Create Your Advance Directives

Creating advance directives requires careful thought and proper documentation. Follow these steps to ensure your documents are legally valid and effectively communicate your wishes.

Step 1: Research Your State’s Requirements

Each state has specific forms and legal requirements for advance directives. Some states require witnesses, notarization, or both. Research your state’s requirements or consult with an attorney to ensure compliance.

Many organizations provide free, state-specific forms, including:

• American Bar Association
• AARP
• National Hospice and Palliative Care Organization
• Your state’s medical association or bar association

Step 2: Reflect on Your Values and Wishes

Before completing forms, spend time considering your values regarding quality of life, independence, and medical intervention. Think about:

• What makes your life meaningful and worth living?
• How important is independence and self-sufficiency to you?
• What medical conditions or states would you find unacceptable?
• Do you want life extended in all situations, only if cure is possible, or only to a certain point?
• What are your spiritual or religious beliefs about end-of-life care?

Step 3: Consult with Your Healthcare Provider

Schedule a conversation with your doctor to discuss your advance directives. Your physician can:

• Explain medical procedures and their implications
• Help you understand realistic outcomes of different treatments
• Answer questions about specific medical scenarios
• Review your completed documents for clarity
• Add your directives to your medical records

Step 4: Complete and Sign Your Documents

Fill out your advance directive forms carefully and completely. Depending on your state’s requirements, you may need to:

• Have your signature witnessed by one or more people who are not beneficiaries or family members
• Have your documents notarized by a licensed notary public
• Use specific language or forms approved by your state

While you can hire an attorney to help with this process, it’s generally not required. Many people successfully complete advance directives using free resources and state-provided forms.

Step 5: Distribute Copies Appropriately

Once your documents are complete, distribute copies to ensure they’re available when needed:

• Give a copy to your primary healthcare provider for your medical records
• Provide copies to your healthcare agent and any alternate agents
• Give copies to close family members who may be involved in your care
• Keep the original in a safe, easily accessible location (not a safety deposit box)
• Consider giving a copy to your attorney if you have one
• Carry a wallet card noting you have advance directives and naming your healthcare agent
• Keep a copy with you when traveling
• Store a digital copy in a secure location accessible to your healthcare agent

Step 6: Discuss Your Wishes with Family

Having your documents in place isn’t enough—you need to communicate your wishes clearly to those who will be involved in your care. Hold a family meeting or individual conversations to:

• Explain the decisions you’ve made and why
• Address questions or concerns from family members
• Help family members understand they are honoring your wishes, not making difficult decisions themselves
• Reduce potential conflicts or guilt during crisis situations
• Ensure your healthcare agent feels supported by other family members

Physician Orders for Life-Sustaining Treatment (POLST)

In many states, a Physician Orders for Life-Sustaining Treatment (POLST) form complements your advance directives. This document may also be called Provider Orders for Life-Sustaining Treatment or Medical Orders for Life-Sustaining Treatment (MOLST), depending on your location.

Who Needs a POLST?

POLST forms are specifically designed for individuals with serious, advanced illnesses or frailty. Unlike advance directives that apply to future hypothetical situations, a POLST addresses your current health status and provides immediate medical orders.

How POLST Differs from Advance Directives

Several key differences distinguish POLST from other advance directives:

• Medical orders vs. legal documents: A POLST contains actual physician orders, similar to a prescription, rather than patient directives
• Immediately actionable: Emergency responders and medical staff can follow POLST orders without consulting other documents
• Highly visible: POLST forms are typically printed on brightly colored paper and posted prominently where medical personnel can see them
• Portable: The POLST stays with you, moving between home, hospital, nursing facility, and hospice
• Detailed and specific: POLST includes specific orders about treatments rather than general preferences

What a POLST Covers

A POLST form typically includes physician orders regarding:

• CPR and resuscitation attempts
• Mechanical ventilation and breathing support
• Artificial nutrition and hydration
• Use of medications for infections
• Transfer to emergency room or hospital admission
• Pain management and comfort measures
• Specific conditions under which treatments should be provided or withheld
• Duration limits for certain interventions

Creating a POLST

Your healthcare provider completes the POLST form based on:

• Conversations about your treatment preferences and goals
• Your existing advance directives
• Your current medical condition and prognosis
• Your values and quality-of-life considerations

Like other advance directives, you can update or cancel a POLST at any time. Regular reviews ensure the orders continue to reflect your wishes as your condition or preferences change.

Reviewing and Updating Your Advance Directives

Advance directives aren’t “set it and forget it” documents. Regular reviews and updates ensure they continue to reflect your current wishes and circumstances.

When to Review Your Documents

Plan to review your advance directives:

• Every few years: Aim to review your documents at least every 5-10 years, even if nothing has changed
• After major health changes: A new diagnosis, particularly of serious or terminal illness, may affect your treatment preferences
• After major life changes: Marriage, divorce, death of a healthcare agent, or relocation may necessitate updates
• When your values shift: As you age and experience life changes, your priorities regarding quality versus quantity of life may evolve
• After changes in relationships: If your relationship with your healthcare agent changes or if they become unable to serve, update your documents

How to Update Your Documents

To make changes to your advance directives:

• Complete new forms rather than trying to amend existing documents
• Follow your state’s requirements for signing and witnessing
• Clearly date the new documents
• Distribute new copies to everyone who has old versions
• Destroy or clearly mark “VOID” on all old copies
• Ensure your healthcare provider replaces old versions in your medical records
• Request that hospitals and nursing facilities update their records
• Inform your healthcare agent and family members of changes

Common Misconceptions About Living Wills

Several myths prevent people from creating advance directives. Understanding the facts can help you make informed decisions.

Myth: I’m Too Young to Need a Living Will

Reality: Unexpected accidents and illnesses can happen at any age. Terri Schiavo was just 26 when she suffered cardiac arrest that left her in a persistent vegetative state, leading to years of legal battles because she had no advance directives. Every adult should have these documents in place.

Myth: My Family Knows My Wishes

Reality: Even close family members often disagree about what their loved one would want. Written documents eliminate guesswork and prevent conflicts during emotionally difficult times. Studies show that family members correctly predict patient preferences only about 60-70% of the time.

Myth: Advance Directives Mean Giving Up on Life

Reality: Advance directives can specify that you want all possible life-sustaining treatments. They simply ensure your wishes—whatever they are—will be followed. Many people use advance directives to request aggressive treatment.

Myth: Hospitals Won’t Honor My Advance Directives

Reality: Healthcare facilities are legally obligated to honor valid advance directives. While complications can arise, having proper documentation significantly increases the likelihood your wishes will be followed.

Myth: Creating Advance Directives Is Expensive and Complicated

Reality: Many states provide free forms, and the process typically requires no legal assistance. While you can hire an attorney if you prefer, most people successfully complete advance directives on their own.

Special Considerations for Living Wills

Mental Health Advance Directives

Some states allow psychiatric advance directives that specify preferences for mental health treatment during psychiatric crises when you may be unable to make treatment decisions. These documents can address:

• Preferred and refused treatments
• Medication preferences
• Hospitalization preferences
• Appointment of a mental health decision-maker

Living Wills for Parents of Minor Children

Parents should consider how their advance directives might affect their children. You might want to include provisions about:

• Weighing your children’s needs in treatment decisions
• Allowing your children to visit if you’re hospitalized
• Appointing guardians if you become incapacitated long-term

Religious and Cultural Considerations

Your advance directives should reflect your religious and cultural values. Some faiths have specific teachings about end-of-life care. Consider consulting with religious or spiritual advisors when creating your documents to ensure they align with your beliefs.

Living Wills and Emergency Medical Services

Emergency responders typically must attempt resuscitation unless they have clear direction otherwise. If you have DNR orders, ensure they’re:

• Clearly visible in your home
• In proper format for your state (some states require specific forms or ID bracelets for EMS)
• Accompanied by physician orders, not just advance directive documents

Why Advance Care Planning Matters

Creating advance directives provides numerous benefits beyond ensuring your wishes are followed:

Reducing Family Burden and Conflict

Without clear directions, family members must guess what you would want during crisis situations. This burden often leads to:

• Disagreements between family members
• Guilt about making “wrong” decisions
• Emotional trauma from making life-or-death choices
• Family relationships damaged by conflicts over care decisions

Advance directives shift the focus from “What should we do?” to “What did they want?” This change significantly reduces family stress and conflict.

Ensuring Appropriate Care

Studies show that people with advance directives are more likely to receive care consistent with their wishes. Without directives, patients often receive more aggressive treatment than they would choose, potentially suffering unnecessarily at the end of life.

Reducing Healthcare Costs

While not the primary reason to create advance directives, they can reduce unnecessary medical spending. Patients with advance directives typically incur lower healthcare costs in their final year of life by avoiding unwanted intensive interventions.

Improving Quality of Life and Death

Research indicates that advance care planning is associated with:

• Better quality of life for patients with serious illness
• Greater satisfaction with care
• More time spent at home rather than in hospitals
• Better bereavement outcomes for family members
• Increased use of hospice and palliative care services

Getting Started Today

Creating advance directives may seem daunting, but breaking the process into manageable steps makes it achievable:

1. Start the conversation: Talk with your loved ones about the importance of advance care planning
2. Reflect on your values: Consider what matters most to you regarding quality of life and medical care
3. Download forms: Obtain your state’s advance directive forms from reputable sources
4. Choose your healthcare agent: Select someone who will honor your wishes and discuss the role with them
5. Schedule a doctor’s appointment: Discuss your medical options and advance care planning with your physician
6. Complete your documents: Fill out forms carefully, following your state’s requirements
7. Make copies and distribute: Ensure everyone who needs your directives has access to them
8. Set a review reminder: Calendar a date to review your documents in 5-10 years or after major life changes

Conclusion

A living will and comprehensive advance directives are among the most important documents you’ll ever create. They ensure your medical wishes are honored, reduce burden on your loved ones, and provide peace of mind for everyone involved in your care.

Don’t wait for a health crisis to create these essential documents. Start today by researching your state’s requirements, reflecting on your values, and beginning conversations with your family and healthcare provider. Taking action now is one of the most valuable gifts you can give yourself and those who love you.

Remember, advance directives are not about giving up hope or planning for death—they’re about ensuring you receive the care you want, whatever that may be, if you’re unable to speak for yourself. Every adult should have these documents in place, regardless of age or health status.

Sources:

• Mayo Clinic – Living Wills and Advance Directives
• National Institute on Aging – Advance Care Planning
• MedlinePlus – Advance Directives
• American Bar Association – Health Care Advance Planning
• National Hospice and Palliative Care Organization – Caring Info
• National POLST – Physician Orders for Life-Sustaining Treatment