Advance Health Care Directive – General Information

1. What is an Advance Directive?

An Advance Directive provides a way for people to direct their own healthcare even when they are in a coma, have dementia or are mentally incapacitated or unable to communicate. A person can use an Advance Directive to spell out her1 wishes regarding physical and mental healthcare and to select someone to make health care decisions when she is unable to do so.

In California, an Advance Directive is made of up two parts, (1) Appointment of an Agent for Healthcare and (2) Individual Health Care Instructions. A person may choose to complete either one or both of these parts. Either part is legally binding by itself.

2. What is a Healthcare Agent?

A person may use her Advance Directive to appoint a Healthcare Agent. A Healthcare Agent is responsible for making healthcare decisions should the person lose the ability to make these decisions for herself. A Healthcare Agent is responsible for carrying out the person’s wishes as she has expressed them in her Advance Directive or in discussions with the Agent.

It is not necessary to name a Healthcare Agent in order to complete an Advance Directive. If the person has not chosen a Healthcare Agent, the healthcare provider is still required to follow the person’s wishes, as expressed in the Individual Healthcare Instructions.

If both parts of the Advance Directive are filled out, the Healthcare Agent must follow the specific wishes spelled out in the second part of the document which is called the Individual Healthcare Instructions.

3. What are Individual Healthcare Instructions?

Individual Healthcare Instructions are the way in which a person can tell her doctor, family or Agent what her decisions are regarding physical or mental health treatment. Individual Healthcare Instructions are verbal or written directions about health care. A person can use Individual Healthcare Instructions to let her healthcare provider know what she wants done and under what circumstances. This may include agreeing to certain treatments or refusing specific treatments or services.

4. What can an Advance Directive do for a person with a psychiatric disability?

A person with a psychiatric disability can benefit from having an Advance Directive in a number of ways:

• An Advance Directive can empower the person to make her treatment choices known in the event she needs mental health treatment and is found to be incapable of making healthcare decisions.
• An Advance Directive can improve communication between the person and her doctor. Completing an Advance Directive is a good way to open up discussion with healthcare providers about treatment plans and the full spectrum of choices in treatment.
• An Advance Directive can help the person prevent clashes with family members and/or healthcare providers over treatment during a crisis by allowing those discussions to take place when a person is filling out her Advance Directive.
• Completing an Advance Directive creates an opportunity for the person to discuss her wishes in detail with family and/or friends. This may help family and/or friends more effectively advocate for the person when she is unable to advocate for herself and to advocate in ways that reflect the person’s wishes.
• An Advance Directive may prevent forced treatment.
• An Advance Directive may reduce the need for long hospital stays.

5. Who can fill out an Advance Directive?

Any person 18 years or older who has the “capacity” to make health care decisions may fill out an Advance Directive. “Capacity” to make healthcare decisions means the person understands the nature and consequences of the proposed healthcare, including the possible risks and benefits and is able to make and communicate decisions about that healthcare. Legally, a person is assumed to be competent unless proven otherwise.

6. How does an Advance Directive become official?

An Advance Directive must contain all of the following to be official:

• A statement of the person’s intent to create an Advance Directive.
• The signature of the person writing the Advance Directive
• The signatures of either two witnesses or a notary public
• The date the Advance Directive was signed.

7. When does an Advance Directive go into effect?

An Advance Directive only goes into effect when the person’s primary physician decides that the person does not have the “capacity” to make her own healthcare decisions. This means the physician believes that the person is not able to understand the nature and consequences of proposed healthcare or is not able to make or communicate her healthcare decisions. The fact that a person has been admitted to a mental health facility does not, in itself, mean that the person lacks capacity to make her own healthcare decisions.

The Advance Directive is no longer in effect as soon as the person regains the capacity to make her own healthcare decisions.

8. Who can help with filling out an Advance Directive?

Writing an Advance Directive can sometimes seem confusing or complicated. If a person needs help writing her Advance Directive, she should ask someone who respects her right to make these decisions for herself and will help without pressuring her to make one decision or another.

It also a good to ask someone who is knowledgeable or experienced in writing Advance Directive to help. The Office of Medi-Cal Ombudsman Services for Mental Health can help people in finding someone nearby to answer questions and assist in writing Advance Directives. The telephone number for Ombudsman Services for Mental Health is (800) 896-4042.

9. Is a Healthcare Agent necessary?

No, a person does not have to name a Healthcare Agent in order to write a valid Advance Directive. Someone who does not have a trusted family member or friend may choose not to name a Healthcare Agent. If the person does not have a Healthcare Agent, her healthcare provider must still follow her wishes as expressed in her Individual Healthcare instructions.

However, there are good reasons to name a Healthcare Agent. A Healthcare Agent can advocate for the person when she is unable to advocate for herself and can ensure that the person’s choices are respected. A Healthcare Agent can also contact others for assistance in enforcing the Advance Directive if the person’s choices are being ignored. This is why it is so important for the person to choose only someone she knows and trusts to be her Healthcare Agent.

Whether or not to name an Agent and who to name as Agent are two of the most important decisions a person will have to make when writing an Advance Directive.

10. What happens when a person wants to change an Individual Healthcare Instruction?

The requirements for changing any Healthcare Instruction are the same as those for completing an Advance Directive.

To change an Individual Healthcare Instruction, the person must

• be at least 18 years old,
• be acting freely and without pressure from anyone, and
• have the “capacity” to make healthcare decisions.

A person can change an Individual Healthcare Instruction by writing a new Advance Directive with the changes in it that she wants to make. If the person writes a new Advance Directive she must take all the same steps she did in writing the first Advance Directive, including having it witnessed.

A person can also revoke their Advance Directive orally, by telling their healthcare provider that they no longer want either the entire document or any parts of it enforced.

11. Who should have a copy of the Advance Directive?

The person should keep a copy of the Advance Directive for herself in a place that is safe, but easily accessible.

The person should give a copy of the Advance Directive to her Agent if she has one. The Agent’s job is to make sure that the person’s decisions are known and followed. To do this, the Agent must have a copy of the Advance Directive that appoints her as the person’s Agent.

Each of the person’s healthcare providers should have a copy of the Advance Directive and are legally required to place the Advance Directive in the person’s medical records. This is important because the healthcare provider cannot follow the person’s Individual Healthcare Instructions unless they know what those instructions are. If the person does not have an Agent or the Agent is unavailable, the healthcare provider will still know what the wishes are if the document includes Individual Healthcare Instructions.

The person should keep track of who has a copy of her Advance Directive. If the patient decides to change or revoke (cancel) her designation of an Agent or any individual healthcare instruction, she should let everyone who has a copy of the Advance Directive know about the change/revocation to avoid confusion.

12. Does a healthcare provider have to follow an Advance Directive?

Yes. Healthcare providers must follow both the person’s Individual Healthcare Instructions and the decisions made on the person’s behalf by her Agent.

13. Who can help if an Advance Directive is ignored/not followed?

If a healthcare provider refuses to follow the person’s Individual Healthcare Instructions or refuses to comply with the decisions of the person’s Agent, contact the county patients’ rights advocate and/or Disability Rights California. Disability Rights California and the county patients’ rights advocate can work with the person or her Agent to make sure that the Advance Directive is followed.

The telephone number for Disability Rights California is (800) 776-5746 and the telephone numbers for county patients’ rights advocate are posted on the walls in all inpatient mental health facilities.

Advance Health Care Directive – Explanation of Terms for Advance Directives

The first part of your Advance Health Care Directive is written to inform the reader of the Codes in both federal and state law that apply to the Advance Directives you have written.

The listing of specific codes at the end of paragraphs is included so that people can check them out, if they wish. Mostly, attorneys and health care providers need to know these; consumers may go to the regulations listed if they want to become better informed of their rights.

Some important legal terms in this section are:

1. Capacity – in this document, “capacity” refers to your ability to understand, make and communicate your healthcare decisions; when you are determined to “lack capacity” to do this is when the Advance Directive goes into effect.
2. Duration – in California there is no automatic time limit on an Advance Directive. Unless you state a specific date when you want your document to expire, your Advance Directive stays in effect until you decide to revoke it.
3. Revocability – in California you have the right under the law to say all or any part of your Advance Directive is no longer binding.
4. Liability – in California health care providers can be sued for “damages” (including fines and attorney’s fees) if they are found to have failed to follow an Advance Health Care Directive.
5. Immunity – In California health care providers who are following an Advance Directive in good faith are protected from being prosecuted for a crime and from being sued for complying with the Advance Directive.
6. Discrimination – in California no one can make you have an Advance Health Care Directive, or take away your right to have one, as a condition for giving you health care, or admitting you to a place of treatment, or providing you with insurance.

Part I: Appointment of an Agent for Health Care

7. Health Care Agent – This is the person you choose to speak for you and assert your health care decisions. Although you do not have to choose an agent under California law, you may want to choose someone who is willing to represent your wishes with regard to your health treatment.
8. Conservator – this is someone whom the court may appoint to oversee your affairs and make treatment decisions if you are determined by the court to be unable to provide for your own basic needs due to a mental disorder. You may want to identify someone whom you prefer to be your conservator, in case the court decides to do this.

Part II(a): Statement of Individual Mental Health Care Instructions

9. Incapacity – this is another way of saying that you “lack capacity.” It means you are not able to make or communicate your own health care decisions at a particular time.
10. Treatment Facility – this would be any licensed place that is permitted by law to provide psychiatric care on a 24-hour basis. It is often a hospital.
11. Primary Physician – for the purposes of this section, this is the medical doctor who has been identified by you as the one who has first responsibility for providing your mental health care.
12. Emergency Situations – these are the kinds of crises that mental health treatment facilities often see as justifying the use of such methods as seclusion and restraint in order to control you.
    1. Seclusion – a method of control that removes you and isolates you by making you stay in a separate area.
    2. Restraint – a method of control that physically limits your ability to move.
13. Side Effects – the usually unpleasant or destructive things that may happen to your body when you take certain medications.
    1. Tardive Dyskinesia – movements of the face, hands, etc. that are not able to be stopped at will that are the side effects of taking certain medications.
    2. Motor Restlessness – being unable to stop yourself from moving as a side effect of taking certain medications.
    3. Muscle/Skeletal Rigidity – extreme stiffness that is a side effect of taking certain medications.
    4. Neuroleptic Malignant Syndrome – the name given to a group of sometimes life-threatening side effects to certain medications.
14. Electroconvulsive Therapy – sometimes called ECT or “shock treatments,” this involves the use of electricity to provoke controlled brain seizures, and is sometimes used in the treatment of depression.
15. Drug Trials – this is the use of people as subjects of research for the testing of new medications.

Part II(b): Individual Physical Health Care Instructions

16. Life Sustaining Treatment – this is the term doctors and hospitals use to describe the technology and machinery that has been invented to prolong life when otherwise a person would die.
17. Persistent Vegetative State – this is the term used to describe a human being whose ability to function has been severely reduced, who is being kept alive on machines.
18. Anatomical Gift – this is the donation of all or part of your body for medical or scientific purposes after you have died.
19. Autopsy – this is the medical examination of your body after death to determine the cause of death.

• 1. A single gender (female) is used to simplify the writing style, but all information applies to both men and women.