by Ronald S. Honberg
National Director for Policy and Legal Affairs
Jane, a 36-year-old woman suffering from schizoaffective disorder, is very frightened. In the past, her experiences in public psychiatric hospitals have been very traumatic. The last time she was hospitalized, the psychiatrist responsible for her treatment could hardly speak English. When she tried to explain that she didn't want to take certain medications because they exacerbated her tardive dyskinesia, he either didn't understand her or dismissed her as someone who was not capable of speaking in her own behalf. He prescribed Haldol to her, which, in fact, was one of the medications she didn't want to take. She describes her hospitalizations as terrifying, dehumanizing experiences. "It's not that I'm opposed to psychiatric treatment", she says. "I know that I need treatment for my brain disorder. But, I'm not willing to accept treatment when I am given no say in how I am going to be treated. I would rather go to jail or become homeless again than to have to go back to the hospital."
Mr. and Mrs. Smith have seen this happen so many times before. Their son, John, who suffers from schizophrenia, has stopped taking his medication. This, they know, will lead to gradual decompensation, with potentially horrendous consequences. Each time, they must stand by and watch their son deteriorate until he becomes so ill that he meets the state's criteria for involuntary commitment and forced treatment. Each time, they worry that their son may not survive this episode. They worry that he will commit suicide or will be hurt by someone else because of bizarre and unpredictable behaviors stemming from his untreated severe mental illness. They also hate having to go to court to involuntarily commit their son. These periods of decompensation are particularly agonizing because their son, when he is doing well, has expressed on numerous occasions his understanding of his need for treatment and his appreciation of his parents for intervening when he is helpless and unable to help himself. Yet, when he goes off medications, he shuns his family, denies his illness and his need for treatment. "There must be a better way," Mrs. Smith sighs. "I can't bear to stand by and watch John suffer this way."
These vignettes describe two scenarios quite familiar to persons with severe mental illnesses and their families. Consumers frequently experience situations in which they are given little control over important treatment decisions. Families just as frequently are frustrated by having to stand by and watch their loved ones deteriorate and suffer.
Psychiatric advance directives have recently emerged as potentially helpful tools in resolving these problems. There are essentially two types of advance directives. Instruction directives", such as living wills, provide specific information about treatment and related wishes of individuals drafting them (declarants) should they lose capacity to make these decisions on their own. "Proxy directives" assign "health proxies" or "health care powers of attorney" to individuals entrusted to act as substitute decisionmakers should declarants lose capacity to make their own decisions. Frequently, advance directives combine both of these forms, blending specific instructions about healthcare preferences with identification of individuals assigned "health proxies."
Traditionally, advance directives have been used primarily for "end of life decisions," for example, specifying the wishes of individuals to be withdrawn from life supports when there is no longer any reasonable hope of survival. In recent years, advance directives have been recognized as potentially helpful in empowering individuals suffering from mental illnesses to communicate treatment preferences in advance of periods of incapacity.
Supporters of psychiatric advance directives view these instruments as potentially helpful for at least four reasons. First, they can empower consumers to assume control over treatment decisions. Second, they can be very useful in enhancing communications about treatment preferences between consumers, their caring families, and treatment providers. Third, they may facilitate appropriate and timely treatment interventions before situations deteriorate to emergency status. Finally, they may lead to reductions in adversarial court proceedings over involuntary psychiatric treatment.
Laws authorizing certain forms of living wills or healthcare directives have been enacted in all 50 states and the District of Columbia. Many of these laws do not specifically reference psychiatric decisionmaking, except that some of them expressly exclude decisions about certain types of psychiatric treatment such as inpatient treatment, Electro-Convulsive Therapy (ECT) or psychosurgery from their scope.
Laws specifically authorizing psychiatric advance directives have been enacted in twelve states. The first law authorizing psychiatric advance directives was enacted in Minnesota in 1991. Alaska, Hawaii, Idaho, Illinois, Maine, North Carolina, Oklahoma, Oregon, South Dakota, Texas and Utah have since followed suit. All of these laws establish the right of persons with mental illnesses to write directives, when competent, indicating their wishes concerning acceptance or refusal of psychiatric treatment. Some of these laws (e.g. Alaska and Oregon) apply only to written declarations concerning inpatient psychiatric treatment, psychotropic medications, and ECT. Others apply more generally to all forms of psychiatric treatment.
While advance directives are quite promising as tools for empowering consumers to more actively participate in their own treatment, there are legitimate concerns about these instruments as well. One of the thorniest issues concerns determinations of legal capacity or competence. Questions about capacity arise at two different points in the process. First, declarants must be competent at the time they draft advance directives for these documents to be valid. Second, an advance directive may be used for healthcare or psychiatric decisions only when the declarant is not competent to make these decisions him/herself.
Most state statutes presume that people are competent at the time they draft advance directives. These laws generally require the directive to be signed by two adult witnesses who attest to the person's capacity at the time the instrument is drafted. More difficult questions arise over determining capacity at the time advance directives are used for healthcare decisions. In some states, a judge must make capacity determinations. In other states, such as Oregon, the law specifies that capacity determinations may be made either by a judge or by two physicians. The latter approach would appear to be preferable. Presumably, declarants have some say in choosing which option to exercise in states that authorize both forms of determining capacity.
Another controversial issue concerns the potential use of psychiatric advance directives to refuse all treatment. Thomas Szasz, a leading anti-psychiatry proponent, was one of the first to advocate for the use of "psychiatric living wills" as a mechanism for refusing psychiatric treatment. All of the state laws authorizing psychiatric advance directives except Maine specify that declarants may use these directives to consent or refuse psychiatric treatment. Maine's law authorizes the use of advance directives specifically to indicate treatment preferences. It is silent on whether these directives can be used to refuse treatment.
Since advance directives for mental health decision making are quite new, courts have not ruled conclusively on whether and under what circumstances directives refusing all psychiatric treatment can be overridden. However, in view of general legal precedents on treatment refusals, it is likely that courts will find that advance directives refusing all treatment can be overridden under specific circumstances, namely when declarants are determined to be dangerous to self or others.
Another unresolved question concerns revocation of advance directives. Clearly, an individual may revoke an advance directive when competent. A more difficult question arises when an individual tries to revoke his/her advance directive while actively symptomatic and in need of treatment. For example, an individual may write an advance directive specifying preferred medications and assigning health care power of attorney to a family member to act in her behalf should she lose capacity to make her own treatment decisions. Subsequently, during a relapse, she may seek to revoke her advance directive and refuse all treatment. A lengthy court proceeding could ensue to determine capacity and whether her treatment refusal should be overridden. This negates an important objective of advance directives, which is to avoid court proceedings of this nature.
It has been suggested that the insertion of a so-called "Ulysses clause" in an advance directive could effectively avoid this dilemma. This name originated from the mythical Greek hero, Ulysses, who knew that the lure of the beautiful Sirens was so powerful that he would be compelled to sail his ship towards the rocks they were sitting on, thereby destroying it. To prevent this, he ordered his subordinates to bind him to the mast of the ship and to keep the ship sailing straight, no matter how strongly he argued to the contrary. A Ulysses clause in an advance directive instructs treatment providers about specific treatment preferences, and explains that any statements made refusing treatment during periods of incapacity should be ignored.
Notwithstanding all of these complicating factors, the situations described in the vignettes above could be resolved with an appropriate advance directive. In the first vignette, an advance directive would enable Jane to communicate her preferences and concerns about specific medications. It would also enable her to identify a substitute decisionmaker if she becomes incapacitated and unable to act in her own behalf. In the second vignette, since John, when stable, understands his need for treatment, he could similarly draft an advance directive when competent expressing his treatment preferences and assigning health care power of attorney to one or both of his parents.
The use of advance directives for psychiatric decision making is in its infancy. Clearly, there are more unresolved questions than answers about these instruments. While advance directives have many proponents, there are also some who argue that they will be used as vehicles for avoiding psychiatric treatment altogether. Ongoing research projects and pending court decisions should provide more comprehensive information in the future. In the meantime, advance directives should be strongly considered as a way to empower consumers to take a more active role in their own treatment, and as a way to avoid damaging, divisive conflicts over treatment and medication issues.
Reprinted with permission from the publisher from The JOURNAL of NAMI California, Volume 11 Number 3 "Mental Illness and the LAW"