Final Exodus
Your Life. Your Terms. Your Plan.
Final Exodus
Your Life. Your Terms. Your Plan.
Your Life. Your Terms. Your Plan.
Your Life. Your Terms. Your Plan.
“Your Advance Directive is your voice. Choose someone you trust to make sure it is heard.”
~ Grant Affleck
After learning about your options and considering what matters most to you, the next step is to put your wishes in writing.
An Advance Health Care Directive (AHCD) allows you to document your health care wishes and name a trusted person—your health care agent—to make decisions for you if you are unable to make or communicate those decisions yourself.
Your directive can address the kinds of medical care you would or would not want and provide guidance about your values and priorities.
Just as important as choosing your health care agent is talking with that person. Make sure your agent understands your wishes, what matters most to you, and the values behind the choices you have made. These conversations can help your agent feel better prepared to speak for you if you are unable to speak for yourself.
Advance care planning is not just for older adults or people facing serious illness. Every adult should consider having an Advance Health Care Directive. Once a person turns 18, parents generally no longer have the automatic legal authority to make health care decisions on their behalf. An unexpected accident, sudden illness, or medical emergency can happen at any age. Having a directive in place helps ensure that the right person can speak for you and that your wishes can guide your care when you cannot speak for yourself.
Your Advance Directive records your choices. Your conversations help your agent understand why they matter to you.
There are many Advance Directive forms available. Some states provide their own statutory forms, and forms are also available through attorneys, hospitals, health care organizations, and other trusted sources. AARP provides Advance Directive forms and information for each state. Because requirements vary by state, be sure the document you choose meets the requirements where you live.
Additional Advance Directive forms and information are available in our Resources section.
Final Exodus also provides two forms:
Whatever form you choose, your Advance Directive should reflect your own wishes, values, and priorities. Read it carefully, make sure you understand what it says, and discuss your wishes with the people who may one day be asked to speak for you.
Advance Directive forms vary, but most are designed to accomplish two important things: document your health care wishes and identify the person you trust to speak for you if you are unable to make or communicate health care decisions yourself.
Depending on the form and the laws of your state, an Advance Directive may allow you to:
Whatever form you use, completing the document is only part of the process. Talk with your health care agent about your wishes and the values behind them. The better your agent understands what matters to you, the better prepared they will be to represent your wishes if the need arises.
A diagnosis of dementia does not necessarily mean that a person has lost decision-making capacity. However, because dementia can eventually affect the ability to make or communicate health care decisions, it is worth considering whether your Advance Directive adequately addresses the possibility of future cognitive decline.
Some people choose to provide additional instructions concerning dementia or use a separate dementia directive or supplement to give their health care agent, loved ones, and care team greater guidance about their wishes.
Final Exodus provides an Early Dementia Directive for people who have been diagnosed with early-stage dementia and want to document additional preferences about their future care.
Give careful thought whom you choose to act as your healthcare agent. Choose someone you trust to understand your wishes and speak on your behalf if you are unable to make or communicate health care decisions yourself. Your agent should be someone who is willing to advocate for your wishes, ask questions when necessary, and communicate clearly with your health care team and the people close to you.
Before you name someone as your health care agent, talk with that person about the role and make sure they are willing to serve. You should feel confident that they will respect and advocate for your wishes, even when those wishes differ from what they might choose for themselves.
Advance Directives must be completed according to the laws of the state in which they are executed. Requirements vary by state and may include witnessing, notarization, or other formalities. Some states also restrict who may serve as a witness.
Before signing your Advance Directive, review the requirements that apply to you and make sure you follow them correctly.
Find Advance Directive requirements by state.
For example, California’s statutory Advance Health Care Directive can generally be completed with two qualified adult witnesses or acknowledgment before a notary public; there are restrictions on who may serve as a witness, and additional requirements apply to residents of skilled nursing facilities.
Decision-making capacity generally refers to a person’s ability to understand relevant information, appreciate how it applies to their situation, consider the available choices and their consequences, and communicate a decision. Capacity is decision-specific: a person may be able to make some decisions even when other, more complex decisions are beyond their ability.
A diagnosis of dementia or another cognitive condition does not automatically mean that a person lacks decision-making capacity. Capacity may also change over time and should be considered in relation to the particular decision that needs to be made.
When there is concern about a person’s ability to make a health care decision, an appropriate health care professional may evaluate decision-making capacity. The question is not whether someone understands every technical medical term, but whether they can sufficiently understand and consider the information necessary to make the particular decision.
Competence is a related legal concept, generally determined in a legal context. Although the terms capacity and competence are sometimes used interchangeably in everyday conversation, decision-making capacity is usually the more appropriate term when discussing a person’s ability to make health care decisions.
If a person lacks the capacity to make a particular health care decision, someone else may need to make that decision on their behalf. An Advance Health Care Directive allows you to name a health care agent and provide instructions to guide that person.
If no agent has been designated, the process for identifying an appropriate decision-maker depends on the law of the state where the person is receiving care. For example, California law provides a process for selecting a surrogate when a patient lacks capacity and has no otherwise legally recognized health care decision-maker.
When your health care agent is authorized to make decisions on your behalf, their role is to represent your wishes, values, and preferences—not to substitute their own.
Your Advance Directive can also place limits on your agent’s authority or provide specific instructions about treatments you would or would not want. An agent should follow those instructions and use what they know about your wishes and values when making decisions on your behalf.
This is one reason choosing your health care agent carefully—and talking openly with that person—is so important. Your agent may one day be asked to speak when you cannot. The better they understand what matters to you, the better prepared they will be to represent your wishes.
Some questions become considerably more complicated when a person has lost decision-making capacity, particularly those involving eating and drinking, artificial nutrition and hydration, or previously expressed wishes concerning Voluntarily Stopping Eating and Drinking (VSED).
The medical, ethical, and legal considerations surrounding these decisions can vary depending on the circumstances and applicable state law. These more complex issues are discussed separately in our Deep Dive section and in the instructions accompanying the Early Dementia Directive.
The Final Exodus General Advance Health Care Directive is designed to be concise and easy to understand. It provides space for essential information while allowing you to document your wishes and identify the people who may need to speak for you.
Page 1 identifies you, your health care agent and alternate agent, and your physician, along with relevant contact information.
Page 2 contains the central provisions of the directive. This is where you provide guidance about the health care you would or would not want if you were unable to make or communicate those decisions yourself.
Page 3 includes additional provisions, such as preferences concerning organ donation and disposition of remains, as well as the signatures needed to complete the document. Be sure to follow the signing, witnessing, or notarization requirements that apply where you live.
Rather than attempting to anticipate every medical treatment or circumstance that might arise, the directive focuses on your wishes, values, and quality-of-life priorities. It can also address important treatments such as cardiopulmonary resuscitation (CPR) and mechanical ventilation.
No form, however detailed, can anticipate every medical situation. A concise directive can help make your wishes easier to understand, but the document is only part of your planning. This is why conversation with your health care agent is so important.
A Do Not Resuscitate (DNR) order tells health care professionals not to attempt cardiopulmonary resuscitation (CPR) if a person’s heart stops or they stop breathing. In California, preferences about CPR can also be documented as part of a POLST.
A POLST (Physician Orders for Life-Sustaining Treatment) is a medical order designed primarily for people who are seriously ill or medically frail. It translates a person’s current wishes about certain medical treatments into actionable medical orders.
A POLST and an Advance Health Care Directive (AHCD) serve different purposes, and a person may have both. An Advance Directive documents broader health care wishes and allows you to name someone to make health care decisions for you if you are unable to make them yourself. A POLST addresses specific treatment choices based on your current medical condition. A POLST complements an Advance Directive; it does not replace it.
In California, the POLST addresses cardiopulmonary resuscitation (CPR), medical interventions, and medically administered nutrition. To become an actionable medical order, it must be signed by the patient—or, when appropriate, the patient’s legally recognized health care decision-maker—and by a physician, nurse practitioner, or physician assistant.
Whenever possible, your POLST and Advance Directive should be consistent. If they conflict, health care providers should consider your most recently documented wishes and help ensure that your documents accurately reflect your current preferences.
A completed POLST should be readily accessible to emergency personnel, caregivers, and health care providers. California recommends bright pink paper so the form is easy to recognize, but a POLST is valid on any color paper. Copies, scans, PDFs, and faxes of a properly completed form are also valid.
Final Exodus encourages you to write a separate ‘Letter to My Agent,’ giving you an opportunity to say more than an Advance Directive form may allow. In your own words, you can explain what matters most to you, the values behind your choices, and what you hope your agent will understand if circumstances arise that you could not anticipate.
Your letter does not need to sound legal or medical. Its purpose is to help the person who may one day speak for you understand not only what you want, but why it matters to you.
Your letter should complement your Advance Directive rather than contradict it. Share it with your health care agent and others whom you want to understand your wishes, and review it periodically as your health, circumstances, or priorities change.
Your letter is in addition to the conversations you have with your loved ones.
Your letter can include anything that would help your health care agent better understand your wishes, values, and priorities. You might consider writing about:
Your Advance Directive records your choices. Your conversations and your letter help the people you trust understand the values behind them.
Extensive recent medical research clearly indicates that with a good lifestyle you can prevent developing Alzheimer’s disease. What life style changes? (As many as you can do; the more, the better.)
This list is taken from a class on prevention given at the San Diego Community Colleges in the fall of 2022. You can get similar information from this YouTube video: Ten tips to prevent Alzheimer's, Melissa Batchelor. There are others.