By Chris L. Jenkins
Washington Post Staff Writer
Monday, September 10, 2007
Yvonne Smith has had a pair of mental illnesses diagnosed over the years, but it wasn't until a severe psychotic episode landed her in a psychiatric ward that she came to a sober realization: Although her family and friends had long been supportive of her struggles with bipolar disorder, they couldn't always know what to do when she was incapacitated.
So, soon after she left the hospital, she wrote some simple instructions with a psychiatrist and an attorney on how to care for her if she had a severe episode again: She was to be taken to Georgetown University Hospital if possible; she was not to receive antipsychotic drugs through a needle; and electroconvulsive therapy, known as ECT, was prohibited.
"My friends and family know the symptoms of my condition, but they don't always know about recovery," said Smith, 55, a District resident. "I got to a point where I wanted the things that work best for me to be written down, so that if I was ever in the hospital again, there would be clear instructions."
Smith's wishes are embedded in a legal document known as a psychiatric advance directive, which is designed to instruct health-care professionals, family members and friends about how mentally ill patients are to be cared for when they are incapacitated.
Prepared when a patient is lucid, the documents often give instructions on what medications or treatments to use, what hospital is preferred and, sometimes, instructions on how the patient should be engaged by mental health professionals. The advance directives are designed to give patients some control over their care.
But the directives have also raised concerns, because they're not always binding. In some states the instructions can be revoked by someone going through a psychotic crisis, and in some cases doctors can override a patient's wishes. In addition, some say the documents promote inequality and discrimination by highlighting a mental illness apart from broader health issues, which only serves to stigmatize those with schizophrenia and other severe disorders.
The disagreements illustrate the difficulty of trying to expand rights to those with severe mental illness while also providing proper care in emergency situations.
As Virginia considers comprehensive revisions to its mental health system this year, one of the issues that lawmakers, mental health professionals and state officials have discussed is whether to implement the little-known directives, which are available in Maryland and the District. As in all states, such mental health-care instructions in Virginia can be passed on to loved ones through health-care proxies, which can give family members the ability to instruct doctors about the care of a mentally ill person. But the state allows people to make future health-care instructions through advance directives only in end-of-life situations.
Supporters of advance directives say they give those prone to episodes of psychosis an opportunity to control their treatments during mental breakdowns. Some researchers and psychiatrists also say advance directives can help doctors and their patients talk honestly about what happens during psychotic episodes, increasing the possibility that mentally ill patients will gain insight into their conditions.
Like a living will, most advance directive documents require two witnesses and notarization. "The psychiatric advance directives are based on experiences people have had many times over," said Eric Elbogen, a forensic psychologist at the University of North Carolina School of Medicine, who has done research on the documents. "It can help determine what medications work best or which ones don't work at all, because it's based on past, real-life experiences."
About 13 million Americans struggle with serious mental illnesses, including bipolar disorder, schizophrenia and severe clinical depression. About two dozen states have psychiatric advance directive statutes that specifically allow for those with mental illness to develop treatment plans. Supporters said that developing a separate psychiatric advance directive law helps promote their usage and can encourage people to take control of their care.
That was the case for Marcia Anders of Durham, N.C., who was recently overcome with the gale of despair she recognized all too well as a psychotic breakdown -- the kind that in the past had landed her in the hospital for weeks at a time.
Anders, who has bipolar disorder and schizophrenia, was taken to the psychiatric wing of a hospital. There, doctors punched her name into a database and were given instant information on how she wanted to be treated. She was not to be given Haldol, the antipsychotic drug. But the doctor could give her Zyprexa, a drug that she has had a good experience with. And the doctor could see what family member to call.
"It's something that has made life much, much more manageable, where I don't have to be so afraid anymore," said Anders, who said she first had bipolar disorder diagnosed 30 years ago. "It helps me trust that I'm going to get the right care when I need it."
Some mental health experts, however, question the power and practicality of the documents, as well as their necessity.
In several states, clauses allow people with such illnesses to revoke their directives, even in the midst of a psychotic episode. Officials in those states often give the power of revocability to patients because they say ignoring the protestations -- even in situations where refusal of some medications is frequent -- could amount to coercive treatment.
"An irrevocability clause really equates to forced medication unless the person is sitting passively and accepts the medication," said Robert Fleischner, a staff attorney at the Center for Public Representation, a disability law firm in Northampton, Mass., that has done work on the documents.
In some cases, advance directives do not deliver the autonomy they appear to promise. Some states allow doctors to override instructions if every reasonable effort to follow the document has been exhausted. Moreover, state laws that allow for involuntary commitment when a person is a danger to themselves or others trump the instructions in the directives.
"They are a nice idea, but in many cases they're ineffective," said Steven Daviss, chairman of the psychiatric department at Baltimore Washington Medical Center in Glen Burnie.
Even though the first psychiatric advance directive statutes were developed years ago, they are still seldom used -- a problem also found with general advance directives. A 2006 survey by several researchers at Duke University School of Medicine found that although 66 percent of more than 1,000 people with mental illness would consider filling out an advance directive, less than 10 percent actually did. In many cases, the study found very little understanding of how the documents worked and general distrust that patients' wishes would be observed. And in many states, including Maryland, there is no central directory to help track those who have the directives.
In Virginia the discussion has centered on whether the state should develop a separate psychiatric advance directive statute or just broaden existing laws to accommodate such directives in non-end-of-life situations. Officials in Virginia said they found that having a directive for psychiatric care and a directive for general health care could be confusing for doctors in an emergency. In addition, they said that by separating those with psychiatric advance directives from those with general health-care directives, they might be promoting stigmatization of the mentally ill.
"I think the concern is that a separate statute would further separate people who have mental illness from the rest of the population," said Terry Grimes, president of Empowerment for Healthy Minds, an advocacy group in Blacksburg, Va., and a member of the state Supreme Court's commission studying the mental health system. "Many of us are coming from the perspective that health is health."