Advance Directives: Frequently Asked Questions

This frequently asked questions (FAQ) pamphlet was created as a guide for individuals working on completing an Advance Directive.  The content was prepared by John Oliver, Esq., and reviewed by practitioners and policymakers from organizations such as the Virginia Organization of Consumers Asserting Leadership (VOCAL), the disAbility Law Center of Virginia (dLCV), the University of Virginia Institute of Law, Psychiatry, and Public Policy (ILPPP), and the Virginia Department of Behavioral Health and Developmental Services (DBHDS).


This FAQ provides accurate information about some common questions that arise when completing an Advance Directive.  If you have a question not addressed in this pamphlet, you should seek information from a licensed health care professional or attorney.


Finally, this FAQ was created to correspond to the 10-page integrated form suggested for use in Virginia.  Nonetheless, the information contained in this FAQ is applicable to any form in Virginia and can be used even if you are not using the 10-page integrated form.  If you would like to use the 10-page integrated form, a copy can be found under here.


Opening Statement


Who makes the finding that I’m incapable of making an informed decision about my health care?

Your attending physician is the person who makes the finding after examining you in person.  Your “attending physician” is the main doctor who is responsible for your health care at this particular time (i.e., it may not be your primary care doctor that you usually see).  A second person, called a “capacity reviewer,” must also examine you in person.  A “capacity reviewer” is a licensed physician or clinical psychologist.  Both your attending physician and the capacity reviewer must put their decision in writing in your chart.  Your capacity must be reviewed at least every 180 days (6 months).

(Source: Va. Code §§ 54.1-2983.2 and 54.1-2982)


Does the doctor tell me if they’ve found that I’m incapable of making an informed decision?

Yes.  Your doctor must tell you as soon as he/she can and as much as you are able to “receive” that information (for example, someone in a coma couldn’t receive the information).  Your advance directive is not legally activated until your doctor tells you this.

(Source: Va. Code § 54.1-2983.2)


What does it mean to say that I am “incapable of making an informed decision” about my treatment?

This means that:

  1. you are not able to understand the nature and consequences of a decision about your treatment, or
  2. you are not able to think clearly about the risks and benefits of treatment options.


There are a number of reasons why you may be incapable of making an informed decision, including any mental or physical disorder that impairs communication or judgment.  But, you cannot be found incapable of making an informed decision just because you have a mental illness.  Your mental illness must impair your communication or judgment before it can be the reason to find you incapable of making an informed decision.

(Source: Va. Code § 54.1-2982)


What if I don’t agree with the doctor’s finding that I’m incapable of making an informed decision about my care?

In Virginia, you can appeal (challenge) your doctor’s finding.  You can file a petition with the local Circuit Court to have your case reviewed. If you are receiving services from a provider that is regulated by the Virginia Department of Behavioral Health and Developmental Services (DBHDS), then you may appeal the finding to the Local Human Rights Committee (LHRC), too.

(Source: Va. Code § 54.1-2985.1; 12VAC35-115-145)


If I get better, how do I get the authority to make my own decisions about my care again?

As soon as any physician examines you and finds that you are again able to make informed decisions about your care, you are put back in charge of making those decisions.  The doctor must put this finding in writing.

(Source: Va. Code § 54.1-2983.2)


SECTION I: APPOINTMENT AND POWERS OF MY AGENT

A. Appointment of My Agent

​What is an “agent”?

An agent (or “health care agent”) is an adult you may choose to make health care decisions for you if you become unable to make your own decisions.

(Source: Va. Code § 54.1-2982).


Is appointing a health care “agent” the same thing as having a “health care power of attorney”?  Is it the same thing as a “health care proxy”?

Yes, in general, these terms mean the same thing.  But, it is important to know that some states use multiple forms to appoint an agent, to give directions about medical and end-of-life care, and to give directions about mental health care.  In Virginia, these forms can be combined into one.


There is no one I trust enough to make decisions for me if I become incapable of making decisions. Do I have to appoint an agent in my advance directive?

No. You can skip, or scratch through, the section of the advance directive for appointment of an agent.  You can just give directions about your future care in case you become incapable of making informed decisions.


I can’t decide if I should appoint an agent or not. What is a possible drawback if I leave this section blank?

It’s hard to imagine and write instructions for every potential health care decision in the future.  The directions you write in your advance directive will probably not cover all of the decisions that need to be made for you if you become incapable of making a decision.  If your instructions don’t cover a decision that needs to be made, someone may have to be chosen to make decisions for you, like your spouse, adult children, parents, or adult siblings.  Also, the Court can appoint someone to make decisions for you in some cases.  In all of these cases, the person chosen to make decisions for you could be someone you would not want to have that power.


What happens if my agent does not want to follow my instructions in my advance directive?

Your agent must follow the instructions you write in your advance directive.  If your agent does not feel that he or she can follow your instructions, your agent can quit.  That is why it is important that you talk with your agent and make sure that you agent is comfortable with your instructions.


What happens if I become incapable of making informed decisions about my care, and my agent decides that he/she does not want to be my agent?

There is no negative consequence for your agent if he or she decides to quit.  That is why it’s important that you talk with your agent and make sure that your agent is comfortable with your instructions and will follow them.


Why should I appoint a “successor agent”?

There are times when your agent may not be available.  For example, your agent may decide to quit, your agent may be on vacation, or your agent may move away.  If your agent is unavailable, it is helpful to have a “successor” (or back-up) agent who can step in and make decisions for you.


I have two adult children.  Can I appoint them both as my primary agents?

Yes you can, but that is not recommended because it can create a lot of problems.  For example, if your two children disagree on the treatment they think you should get, you may not get the treatment you want because they cannot agree.  Also, naming two primary agents could be confusing for doctors.  Do they need to ask both agents before taking action?  What do they do if they receive different instructions from each child?


Can I appoint my case manager, or my therapist or doctor to be my agent?

No. It would be inappropriate for the person who is recommending treatment to also be the person who has the power to consent to treatment. Most agencies actually have policies that prohibit their staff from being an agent for a client.


The form says that, if my agent does not know my “desires and preferences” about a treatment, my agent should base his/her decision on what’s in my “best interests.”  What’s the difference between my “desires and preferences” and my “best interests”?

“Best interests” means choosing the treatment that a “reasonable person” would choose after weighing the risks and benefits of the treatments that are available.  Your own “desires and preferences” may not be exactly what one would expect to be in your “best interests.”  You may have strong feelings or beliefs that are different from most other people.  For example, some people refuse to accept blood transfusions from other people.  But most people would see a blood transfusion as being in a person’s “best interests.”


Can my agent make all of my health care decisions if I become incapable of making informed decisions about my care?

That is up to you.  You can choose what powers to give to your agent, what powers not to give your agent, and what kinds of health care you want your agent to make decisions about.


B. Powers of My Agent

Why are all these powers of my agent listed like this?

These powers are the ones that you have when making decisions about your own care. Having this list helps in two ways:

  1. It makes it easier for you to decide what powers you want to give your agent and what powers you do not want to give your agent.
  2. It helps your doctor and other health care providers easily know what your agent has the power to do.


Can I really cross out any powers that I don’t want my agent to have?

Yes, you can.  But before you cross out any powers, you should ask yourself:  How will this affect my agent’s ability to make sure I get the treatment I want? There are two key things to keep in mind:

  1. If you want to put limits on what your agent can decide for you, you should make sure that you do not, by accident, put more limits on your agent than you wanted to.  For example, power no. 1 gives your agent very broad authority to make health care decisions for you, including decisions about the use of specific treatments (e.g., CPR, tube feeding).  If you do not want your agent to have the power for one of those specific treatments, then you should cross through that specific treatment, but not all of power no. 1. This is because if you scratch through all of power no. 1, you take away most of your agent’s authority to make decisions for you – including the decisions you probably do want your agent to make for you.
  2. You can also limit your agent’s power through the instructions you give to your agent in Section II of your advance directive.  Agents are required to follow those instructions.


Can I modify any of the listed powers? (For example, can I limit the kinds of research to which my agent can consent?  Can I limit my agent’s authority to withhold or withdraw artificial nutrition or hydration?)

Yes, you can.  You should write your initials and the date next to those changes.  A better way to modify or limit the powers of your agent may be through your instructions (in Section II of the advance directive), which your agent must follow.


The powers listed first give my agent the authority to stop treatment for me.  Should I really give my agent this kind of power?  What if I don’t want my agent to have that much power?

This is your decision and something to talk about with the person you want to appoint as your agent.  Sometimes being able to stop treatments can be as important as being able to start them.  Remember, you can use the instructions part of the advance directive to limit the authority of your agent to withhold or withdraw certain treatments.


If I give my agent the power to authorize my admission to a mental health treatment facility, can my agent put me in a psychiatric hospital anytime my agent wants?

No. There are many steps in place that prevent your agent from admitting you just because he/she wants to:

  1. Your condition has to reach the point where you are incapable of making informed decisions about your care.
  2. You cannot be admitted to a facility until some things required by Virginia law happen, like a physician finds you have a mental illness and you need treatment in a facility.
  3. If you object to going to the hospital, your agent has power to admit you only if you completed a Ulysses Clause, which is described more below (Section I, Part C).


What happens if I don’t give my agent the power to authorize my admission to a facility for the treatment of mental illness?

The only way you can enter the hospital is through the involuntary commitment process.  This process requires (1) that a petition be filed with the court, (2) that you be taken into custody and evaluated and hospitalized temporarily, and (3) that a court hearing be held to see if you meet the criteria for involuntary commitment.

(Source: Va. Code § 37.2-808, et seq.)


Why should I give my agent the power to remain as my agent even though I object to him/her being my agent, after I have become incapable of making informed decisions (power no. 6)?

Basically, you can “fire” your agent, even after you have been found to be incapable of making informed decisions about your care. The problem is this:  if you are impaired enough that you are unable to make informed decisions about your treatment, you may also be unable to make informed decisions about your agent.  You could end up objecting to your agent even when your agent is trying to do what you wanted before you became incapable of making informed decisions.  Power no. 6 is a way to prevent yourself from “firing” your agent when you are not really able to make that decision.

(Source: Va. Code § 54.1-2986.2(E))

NOTE: This is not the same thing as saying that your agent can authorize treatment for you when you object to that treatment.  That is covered separately by the Ulysses Clause in Section I, Part C.


C. Special Powers of My Agent to Authorize Health Care Over My Objection

Why does this section exist?  Since my agent takes over only after I’ve been found to be “incapable of making informed decisions” about my care, aren’t my objections to treatment at that point meaningless anyway?

No, your objections do matter, even after you are found to be incapable of making informed decisions. Here is what the law says about objections while being incapable of making informed decisions in a couple of different situations:

  1. End-of-Life Care:  Anytime that you object to having life-prolonging treatment withheld or withdrawn, your objection will honored.  This is true even if you have been found incapable of making an informed decision.
  2. Mental Health Care:  If you object to mental health care after you have been found incapable of making informed decisions, there are only two ways to get treatment.  One way is through the involuntary commitment process.  The second way is giving your agent the power to authorize treatment over your objection.
  3. Other Health Care:  If you object to other health care after you have been found incapable of making informed decisions, your objection may be honored in some cases.  Other health care can be started/continued/withheld/withdrawn over your objection.

(Source: Va. Code § 54.1-2986.2)


Why does a physician or licensed clinical psychologist have to make a finding that I understand what I’m doing when I give my agent this power?

This is required as a protection because you are giving your agent a lot of power over your care.


If I don’t fill out this section, does a physician or licensed clinical psychologist have to sign off on my advance directive?

No. The signature of a physician or licensed clinical psychologist is required only for Section I, Part C.


I have heard people call this section the “Ulysses Clause.” Why is it called that?

The term “Ulysses Clause” comes from The Odyssey, a Greek story about a great warrior named Ulysses.  In one adventure, Ulysses’ ship had to sail by the Sirens, creatures that drew sailors to sail their ships into cliffs by singing songs.  Ulysses knew that hearing the songs would make him not think clearly and want to sail into the cliffs, but he wanted to hear the songs.  So, he instructed his men ahead of time to tie him to the ship’s mast and ignore his commands when he was affected by the songs.  He had his men put wax in their ears so that they would not be affected.  When the ship got close to the Sirens, Ulysses was affected so that he did not think clearly or act like himself, but his men followed his previous instructions and ignored his commands to free him and sail into the cliffs.  Because Ulysses’ men followed the instructions he gave before becoming incapacitated, the ship passed safely by the Sirens.


So, this part of the advance directive is called the Ulysses Clause because it works like Ulysses’ instructions to his men ahead of time:  when I have a crisis, I want you to follow the instructions I am writing now while I am capable of making informed decisions, and not follow my objections later when I am incapable of making informed decisions.


What’s the difference between giving this power to my agent to authorize health care over my objection, and giving my agent the power to continue as my agent over my objection (power no. 6 in Section I, Part B)?

The difference is that the first has to do with who will be your agent, and the second has to do with what power your agent will have to authorize treatment on your behalf.  Because they are two different things, you can object or agree to them separately.


Can I just skip this section?

Yes, you can.

What are the problems that I could have if I skip this section and don’t give my agent this power?

You can object to mental health care even after you are found incapable of making an informed decision about your care.  If you skip this section, your agent will not be able to authorize treatment you may need and would want.  This is a problem because the only way that mental health care can be provided then is through the involuntary commitment process.


SECTION II: MY HEALTH CARE PREFERENCES AND INSTRUCTIONS


A. My Health Conditions and Current Treatments


This section does not have any instructions about the health care that I want.  Why is it in here?

In this section you can provide valuable information that helps health care providers understand your treatment needs and preferences.  You do not need to include this information, but it can be very helpful to the people working with you during a crisis.


My medications and dosages change from time to time.  Will I have to amend my advance directive every time my medications change?

No.  This section gives you a couple different options.  You can list your medications and dosages as of a certain date.  This lets a treating physician know what you were taking at a certain time.  You can also provide information on how the doctor can get an updated list of your medications.  For example, you might include the name, number, and address for your doctor that prescribes your medications.


B. Information Sharing and Emergency Contacts


The form says that I give consent for these people to be contacted “in case of health crisis.”  What does that mean?  Am I agreeing that these people can be contacted even before I am found to be incapable of making an informed decision about my care?

A “crisis” is a time of intense difficulty when you need help.  The people you list here should be people you feel are part of your support system, who can help you in a crisis.  This section gives health care providers permission to contact the people listed.  The idea behind contacting these people sooner is that they may help you avoid going into a deeper crisis.


How much information can health care providers give to these emergency contacts when I am having a health crisis?

Under HIPAA (the Health Insurance Portability and Accountability Act), health care providers can share only the minimum information necessary for your emergency contacts to come help you.


C. Medication

Why can’t I tell my doctor in my advance directive that the doctor must use the medications that I list here?

No one can require his/her doctor to prescribe certain medications for his/her treatment.  A doctor must use his/her professional judgment in making treatment decisions.  A doctor cannot be forced to take actions the doctor thinks are illegal, unethical, or not proper medical care.  It is still important to write down your medication preferences because treatment decisions are best when you and your doctor talk about them.


What’s the point of giving the reason why I prefer certain medications to treat certain conditions?

You may not be able to talk clearly with your doctor about your treatment when you are in crisis.  Writing down this information ahead of time helps the doctor to understand what medications have worked for you in the past and why you prefer them.  Doctors have said that they find this information useful when making treatment decisions


Will the doctor really do what I say if I refuse certain medications for my treatment in this advance directive?

For the most part, your refusal of treatment in your advance directive must be followed by your doctor.  The main exception would be in an emergency, where the doctor finds that the medication you are refusing is the best medication for preventing serious harm to you or others.  Because of this, it’s very important that you set out the reasons why you refuse a particular medication or type of treatment.  It will help show why a medication may not be the best choice for you even in an emergency. It’s a good idea to include information about medication allergies in Section II Part A and/or Part C.


What about my agent? Can my agent override my treatment refusals?

No. Your agent cannot override your treatment refusals.


What’s the point of giving the reason why I refuse a particular medication for my treatment?

When people explain the reasons why they refuse certain medications, doctors pay attention to those explanations and they make a difference in the treatment decisions that doctors make.


D. Mental Health Crisis Intervention


This section lets me list the interventions that have helped me in the past. What if something like having my pet is very helpful for me, will the health care providers have to bring my pet to me?

When health care providers know what helps you during a crisis, they can make better treatment decisions to help you.  But they are not required to do the things if those things are at odds with health, safety, and other standards.  So, while a facility may not be able to let you bring your pet into the facility, the facility may have a visiting pet therapy program that may help you.


The form lets me list the facilities where I prefer to be treated and those where I don’t want to be treated.  Do health care providers have to try to get me into the ones I prefer and to keep me out of the ones that I don’t want?

No.  In a crisis situation requiring emergency inpatient mental health care, the biggest challenge often is finding a facility that has an available space.  Providers are not required to place you where you prefer to go, but they will take your preferences seriously because they want your placement to be successful.  By writing down the reasons why you prefer some facilities over others, providers can try to place you in a facility that is similar to the one you requested, even if they cannot get you in the one that your prefer.


Can I refuse certain behavioral emergency interventions?

An intervention is an “emergency” intervention when your condition and/or behavior present a danger to you and/or others.  In emergencies, clinicians must do what will keep you and others safe.  You cannot refuse their decision in an emergency.


E. Other Health Care Instructions


Visitation


If I state in my advance directive that certain people do not have my permission to visit me in the hospital or crisis unit, and I later change my mind about that, do I have to amend my advance directive?

Yes, you do. Your agent is bound by your instructions about visitors, so anytime you change your mind about who is allowed to visit you, you need to amend your advance directive.


Electroconvulsive Therapy


What happens if I skip this section on electroconvulsive therapy?

Electroconvulsive therapy (ECT) is listed separately on the form because people tend to have strong feelings about whether they are willing to have ECT.  If you definitely do not want ECT, then you can say so on the form. If you want your agent to be able to consent for you, you can also say that on the form.  If you skip this section so that you do not refuse ECT but you also do not authorize your agent to consent to ECT for you, then ECT can be given to you only if certain steps required by law are taken.


F. Life Management Preferences


If I name people in my advance directive as my first choice to care for my children if I become unable to care for them, does that give these people the legal authority to care for my children and get treatment and services for them?

No. This section makes it clear who you would like to care for your children in case you are unable to care for them, but this section does not give that person legal authority to assume the care and custody of your children.


G. Life-Prolonging Treatment


What is “life-prolonging treatment”?

A treatment is considered "life-prolonging" if:

  1. The patient is in a “terminal condition,” and
  2. The treatment artificially maintains a basic body function that is necessary for life but the patient is no longer able to do on his or her own, and
  3. The treatment gives the patient “no reasonable expectation of recovery” and serves only to “prolong the dying process.”

(Source: Va. Code § 54.1-2982)


What is a “terminal condition”?

A person’s condition is considered “terminal” if the person cannot recover and (1) the person’s death is expected to occur in the near future or (2) the person is in a coma or is otherwise showing no signs of awareness of the outside world.

(Source: Va. Code § 54.1-2982)


Aren’t there times when the treatments described above as “life-prolonging” treatments (e.g., ventilation and CPR) are not life-prolonging treatments, but instead are treatments that I might need?

Yes. There are times when these treatments can be used to enable a person to fully recover from an accident or illness by artificially supporting vital life functions while the person gets better.  There are also times when these same treatments can be used to stabilize a person who has been harmed by an accident or illness and enable that person to function and interact with the world, even though that person cannot fully recover.


If “tube feeding” is stopped, won’t I starve to death?

When a person is in a terminal condition and loses the ability to eat or drink on his or her own, the body begins to naturally “shut down.”  Many people will experience a dramatic loss of appetite and eventually stop eating altogether as they approach death.  This is a natural process, and normally is not painful.  Also, pain control medications and other comfort care can help to make sure that a person approaching death is comfortable and not experiencing pain.


If I’m taken off of a ventilator, won’t I suffocate?

The answer to that question depends how bad your breathing problems are.  Some people may be able to breathe on their own even after their ventilator is removed.  Others may have serious difficulty breathing immediately.  In either case, it is possible to provide medication that will help to reduce the person’s pain and will make that person comfortable.


What happens if I put in my advance directive that I do not want life-prolonging treatment, but after I become incapacitated, I do want life-prolonging treatment?

Such treatment will not be withheld or withdrawn, regardless of what you set out in your advance directive about such care.  You can always change your mind about life-prolonging treatment and your doctor will follow your new decision.


Can my agent override any of my instructions about life-prolonging treatment?

No.  Your agent is bound by your instructions.


I’m not sure what I want to say about life-prolonging treatment.  What happens if I skip this section?

You can skip this section.  If you gave your agent authority to make decisions about life-prolonging treatment for you, then your agent will have the power and responsibility to make those decisions.


SECTION III: ANATOMICAL GIFTS


What happens if I skip this section?

If you do not give any directions in this section, then your agent will have authority to make decisions about donating your organs and body.



Can I donate some organs and not others?

Yes.  You can be as specific as you want about what organs you do and do not want to donate.


AFFIRMATION AND RIGHT TO REVOKE


Can the person I appoint as my agent be a witness when I sign my advance directive?

Virginia law places no restrictions on which adults can be witnesses to your signing your advance directive.  So, legally, your agent can be a witness on your advance directive.


How about my doctor or my case manager?

Virginia law places no restrictions on which adults can be witnesses to your signing your advance directive.  So, legally, your doctor and your case manager can be witnesses on your advance directive.


What do I have to do to revoke my advance directive?

You can revoke (cancel) your advance directive by stating orally or in writing that you revoke your advance directive, or by physically destroying the advance directive or replacing it with a new one.  It is very important that you make sure that your treatment providers, your agent, and other people who are aware of your advance directive are told that you have revoked your advance directive.  If you gave copies to your treatment providers, agent, or others, you may want to ask them to throw away the old advance directive to avoid confusion in the future.


What happens if I have revoked my advance directive but my treating doctor has my advance directive and does not know that I revoked it?

Until your doctor is told that you have canceled your advance directive, your doctor has the power (and the duty) to act on the basis of that advance directive.


Can I revoke my advance directive after I have been found to be incapable of making informed decisions about my health care?

No.  Once your attending physician has found that you are incapable of making informed decisions about your care, your advance directive is activated and you cannot cancel it.  But once you regain the ability to make informed decision about your care, you can again change or cancel your advance directive.