3.

Experience has shown that the following common concerns exist in the public mind, but often go unspoken. These misconceptions are extremely common and will need to be addressed more than once to ensure they are resolved.

1. Signing an advance directive, particularly one that designates an agent, gives someone else the power to override the decision of an individual even when he or she is competent.

Older people who have already experienced a loss of autonomy and independence are most likely to have this concern. Special care should be taken to reassure them that they will be in control of the decision-making process as long as they are able to decide for themselves.

2. Advance directives detract from a person's own right to make health care decisions.

The purpose of an advance directive is to communicate a person's wishes when he or she is no longer able to do so. It cannot be stressed too much that advance directives are tools for enhancing a person's rights and autonomy – not for surrendering rights and autonomy. It may be helpful to affirm that advance directives can be used to describe the kind and quality of care one does want, not only the care one does not want.

3. Signing an advance directive may deprive a person of care he or she would want.

Many people fear that they might be abandoned by caregivers or that palliative or comfort care or other care that would benefit them might be denied. Caregivers have a special responsibility to reassure people that advance directives will not leave them vulnerable to abandonment or neglect.

4. Advance directives are now required for admission to a facility or as a condition for receiving treatment.

It must be made clear to people that, contrary to a very common misconception, they are not required to complete an advance directive, and that a facility cannot condition treatment on the presence or absence of an advance directive.

5. Advance directives allow patients to practice medicine.

Some people may believe that they can use an advance directive to specify particular medications or treatments. They may need help to understand that advance directives facilitate decision-making within a range of options; they cannot require a physician to provide a particular course of care, or particular medications or treatments that may be medically or ethically inappropriate.

6. Advance directives will protect me from unwanted treatment in an emergency situation.

Many people believe that by having their advance directive available at all times, they can avoid unwanted treatment in medical emergencies. They should realize that advance directives generally do not operate in situations where someone has been admitted to a hospital emergency room or where Emergency Medical Services (EMS) has been summoned. In such situations where the patient and the prognosis are unknown, or uncertain, the presumption is to treat. In a few areas of the country protocols have been established for issuing "pre-hospital" or "at home" Do Not Resuscitate (DNR) orders, but this is by no means the norm.

The Effect of State Law

State law on advance directives varies from state to state. Some state legislation addresses only instruction directives (often referred to as "living wills") which spell out a person's wishes regarding treatment; other legislation only provides for the appointment of an agent who can make decisions for an incompetent patient; and still other legislation covers both basic types of advance directives. State legislation also varies regarding the kinds of conditions and/or treatments to which an advance directive applies.

PSDA requires that some state-designated body "develop a written description of the law of the state (whether statutory or as recognized by the courts of the state) concerning advance directives that would be distributed by providers or organizations..." The state guidelines should be the basis for any institution's explanation of the state law. However, under common and constitutional law patients have broad rights to control their medical treatment and these rights may exceed those specified in the state legislation. It may be helpful to address the following points in particular, since they may come up quite frequently.

1. When do the documents apply?

It must be made clear that the applicability of documents supported by your state's law may depend on certain circumstances. For instance, if the "living will," "declaration,", "directive," or whatever the document may be called, only applies when a patient is "terminal," then you should explain how "terminal" is defined. Does it include "persistent vegetative state" or not? Does it mean that death will occur with a few days? A few hours? Is there some other standard?

2. What do you do about medical conditions and treatments not specifically covered by the statute?

People may want to know how to control treatments or situations that are not specifically addressed by a state statute. In some legislation permanent coma, persistent vegetative state, and chronic terminal conditions such as Alzheimer's disease are not specifically addressed. Some people will want to know-how to protect themselves from aggressive medical interventions if they are not "terminal" as defined in the law, but suffering from a condition that results in a quality of life that they would find unacceptable.

3. What if there are restrictions on tube feeding and hydration?

Artificial feeding and hydration are handled differently in the various state statutes. People need to be informed if their state statute limits their ability to refuse artificial feeding and/or hydration, or if those treatments are handled differently from other medical treatments under their state's law. It has been suggested by the United States Supreme Court that singling out tube feeding as a treatment that cannot be refused may be unconstitutional.

4. What are the rules for appointing a health care agent?

When explaining state law regarding the appointment of a health care agent (also called a proxy appointment or durable power of attorney for health care) several points should be addressed:

Are there any limitations on who can be a health care agent?

Most importantly, in any conversation with a person about to appoint a health care agent, the caregiver should stress that it is essential that the person talk to the agent so that the agent knows his or her wishes about the use of medical treatments and becomes familiar with his or her values. Unfortunately, people do sometimes appoint an agent without telling the person they have done so.

4. Is my advance directive good in other states?

Since we are a highly mobile society, this question is frequently raised. Unfortunately, no clear answer to it exists. Some state legislation specifically provides that advance directives validly executed in another state will be honored. Other laws do not address the issue at all or will only recognize a directive from another state if it is prepared in compliance with the state's own law. Since individuals have a constitutional and common law right to accept or refuse treatment, it is unlikely that a state could refuse to honor the wishes of someone who had made his or her wishes clearly known. However, if people live in more than one state, it would be wise for them to prepare advance directive documents appropriate for all of those states.