Advance directives and health care agent

An advance directive is a legal paper about your health care. In it, you can name a person to make medical choices for you if you cannot. You can also write down what care you want, and what care you do not want.¹

Dementia makes this paper extra important. Over time, the disease takes away the ability to weigh choices. If you sign while you still can, your family will not have to guess.

What an advance directive does

An advance directive can do two main jobs.^1,4

• It names a health care agent. This is the person who makes medical choices for you when you cannot. Other names for this are health care proxy or health care power of attorney.
• It records your wishes. This part is often called a living will. It says what treatments you want or do not want in certain situations.

A health care agent is different from the agent in a power of attorney for finances. That paper covers money and property. Many people sign both. You can name the same person for both, or different people.

The Virginia Advance Medical Directive

Virginia's law is called the Health Care Decisions Act. Its suggested form has five parts. You can fill in only the parts you want:⁴

How to make it legal. Any adult who can make an informed decision can sign one. You sign in front of two witnesses who are 18 or older.^2,3 Your spouse or a relative may be a witness. So may a staff member at a doctor's office or care facility.³ The law does not list a notary as a requirement for signing.²

Tell your doctor. The law expects you to let your doctor know you have a directive. The doctor then puts it in your medical record.²

Virginia's online registry. The state keeps a secure online registry for advance directives, POST forms and other planning papers. The law lets doctors, you and your representative get access. Any filing fee is limited by law, and canceling a filed paper is free.⁹ Ask your doctor or the Virginia Department of Health how to file.

Changing your mind. You can cancel all or part of your directive at any time, as long as you understand what you are doing. You can do it in a signed and dated note, by tearing up the paper, or by saying so out loud. If you filed it in the registry, the canceling note must be notarized before it is sent in.⁸ If you file for divorce from your agent, that person loses the right to act for you.⁸

Choosing your health care agent

Under the Virginia form, the agent must follow your known wishes, religious beliefs and basic values. When your wishes are unknown, the agent must decide based on your best interests.⁴

A good agent is someone who:

• Knows you well and will follow your wishes, even if they would choose differently
• Can stay calm and ask doctors questions
• Lives close enough, or can travel or join by phone when needed
• Is willing to do the job. Ask them first.

Always name a backup agent, in case your first choice is sick, away or no longer able to help.⁴ Give both of them a copy.

When the agent takes over

Every adult is presumed able to make their own choices. A diagnosis of dementia does not change that by itself. A person may be unable to make one hard decision but still able to make others.⁵

Your agent's power starts only when you can no longer make an informed choice. In Virginia, this usually takes two written findings, each after an in-person exam:⁵

1. Your attending doctor certifies that you cannot make the decision.
2. A capacity reviewer, who is a doctor or clinical psychologist, agrees in writing. This second step is skipped if a person is unconscious or has a sudden severe illness like a stroke.^3,5

You must be told about the finding, as far as you can understand it. The finding must be renewed at least every 180 days while care continues. If you get better, one doctor can find that you can decide for yourself again.⁵

Why dementia needs extra planning

Most living wills were written with sudden events in mind, like a coma or the last days of life. In Virginia, the end-of-life part of the form applies only when a doctor finds you have a terminal condition. The law defines that as death being near, or a permanent unconscious state.^3,4

Dementia often works differently. A person may live for years in the middle and late stages, awake but unable to make choices. During that long stretch, families face questions the end-of-life section may not answer:

• If pneumonia comes back again and again, should it be treated in the hospital, or at home with comfort care?
• If eating becomes hard, should a feeding tube be used? See eating problems and feeding tubes.
• At what point would you want care to focus only on comfort, such as hospice?
• Would you want CPR, a breathing machine or dialysis in the later stages?

Dementia-specific directives. Part III of the Virginia form lets you list treatments to withhold in situations you describe.⁴ This is where many people write wishes tied to the stages of dementia. A free, stage-by-stage dementia directive was created by Barak Gaster, MD, of UW Medicine, with help from experts in aging, brain health and palliative care.¹¹ You fill it out, share it with family and give a copy to your doctor.¹¹ Some people attach it to their Virginia directive. An elder law attorney can help make sure your words fit the Virginia form.

See also early-stage, middle-stage and late-stage dementia.

If you later say no: protest rules

Dementia can cause a person to refuse care they once wanted, or to reject the agent they chose. Virginia law covers this.

Generally, if you protest a treatment, it is not given under the Health Care Decisions Act. There are two exceptions, and neither one allows life-prolonging care to be withheld or stopped over your protest.⁶

• You give permission in advance. Your directive can say your agent may approve certain care even if you object later. For this to work, a doctor or licensed clinical psychologist who knows you must sign a statement when you make the directive. It says you were able to decide and understood what this means.^4,6
• A review process. Even without that permission, an agent may approve some care over a protest. The care must match your values or best interests. Your doctor must also say it is medically right, and an ethics committee or two outside doctors must agree.⁶

Keeping your agent. If you later protest your agent's role, that person loses authority. The exception is if your directive says the agent should keep serving even if you object.⁶ The Virginia form has a box for this.⁴ Talk with your doctor or a lawyer about whether these choices fit you.

POST and POLST: a doctor's order for serious illness

An advance directive tells people what you want. A POLST form turns some of those wishes into a medical order that health workers can act on right away.¹² It is meant for people who are seriously ill or who are frail from aging. It is not for everyone, and having one is optional.¹²

In Virginia, the older form is called POST (Physician Orders for Scope of Treatment). Virginia has now adopted the national POLST form, and the Virginia POST form remains valid.¹⁴

A POST form does not replace an advance directive. You need the directive to name your agent.¹³

In Virginia, emergency crews can honor a valid Durable Do Not Resuscitate order or POST form about CPR.¹³ A living will alone does not serve this purpose. Keep the original form where emergency crews can find it, such as on the refrigerator. Bring a copy to the hospital and to any care facility.

To get a POST or POLST form, ask the doctor who knows the person best. The Virginia POLST Collaborative answers questions at 888-827-6578 (888-VAPOLST).¹⁴

When to sign, and when to update

Now is best. Plan while the person with dementia can still take part and say what matters to them.¹ Read our guide to the first 30 days after a diagnosis.

Medicare helps pay for the talk. Medicare Part B covers advance care planning. It costs you nothing during your "Welcome to Medicare" visit or yearly Wellness visit, if your doctor accepts Medicare's payment rate. At other visits, the usual deductible and 20% coinsurance apply.¹⁵

Review your papers when:

• A new diagnosis is made, or the dementia moves to a new stage
• Your agent moves away, gets sick, or you divorce
• You go into the hospital or move to a care facility
• Your wishes change

If the person can no longer sign a directive and there is none, a court may need to appoint a guardian. That court process is slower. See guardianship and conservatorship.¹

Simple steps to get started

1. Talk first. Talk about what matters most, such as comfort, time at home, faith, or avoiding hospitals.
2. Choose an agent and a backup. Ask them if they are willing.
3. Get the form. Use the Virginia suggested form, one from your doctor's office or hospital, or one prepared by a lawyer.⁴
4. Add dementia wishes. Write them in Part III, or attach a dementia directive.^4,11
5. Sign with two adult witnesses.²
6. Share copies. Give them to your agents, your doctors and your family. Consider filing with the state registry.^2,9
7. Ask about POST or POLST if the person is seriously ill or frail.¹²

Common questions

My mother has dementia. Is it too late for her to sign?

Not always. In Virginia, a diagnosis alone does not mean a person cannot decide.⁵ Many people in the early stage, and some in the middle stage, can still understand a simple choice like who they trust. A doctor or lawyer can help judge this. Sign as soon as possible, because this ability fades over time.

We made her directive in another state. Is it still good in Virginia?

Usually, yes. Virginia accepts a directive that met the law of the state where it was signed, or that meets Virginia law.¹⁰ Ask your doctor to put it in the record. Many families make a new Virginia form while the person can still sign, so the wording is familiar to local hospitals.

Do we need a lawyer?

No. You can fill out the Virginia form yourself.⁴ A lawyer can help if your family situation is complex, if you want dementia-specific language, or if you also need financial papers and a will. See finding an elder law attorney.

For more on care in the final stage, see end of life in dementia.

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.