Psychiatrist Michael Dempsey, M.D., faced an urgent problem—a patient with schizophrenia who was experiencing delusions had developed a massive hernia.
The patient denied having the hernia and refused an operation to repair it. "He would not consent to what he did not have," said Dempsey, medical director of the Columbia County Clinic in Hudson, N.Y., and a clinical psychiatrist at the Capital District Psychiatric Center in Schenectady, N.Y.
Thus, considering that the patient lacked the capacity to make a decision about a needed medical procedure and did not have anyone authorized to provide consent, Dempsey had to decide how to obtain authorization for the patient’s medical treatment to proceed.
If this scenario had occurred in New York state before 1986, Dempsey would have had no choice but to go through the court system, a process that could have taken weeks. In fact, in public hearings conducted in 1984 by the New York State Commission on Quality of Care for the Mentally Disabled, some witnesses reported that they routinely waited several months to obtain court authorization for surgical procedures, and others reported waiting as long as 57 days to obtain authorization for other major medical procedures.
Due in part to these delays, the commission created the first program in the nation to serve as an alternative to such court proceedings: the Surrogate Decision-Making Committee (SDMC) program, in which a panel of four specially trained volunteers conducts a quasi-judicial hearing and then authorizes or refuses consent for the patient’s nonemergency major medical treatment.
From its statewide listing of more than 950 volunteers, the commission convenes such a panel in the region where the patient resides. The panel consists of a health care professional such as a psychiatrist or a nurse; an attorney; a former consumer of mental health care or development disability services or a family member of, or advocate for, individuals with mental illness or developmental disabilities; and an individual with expertise or interest in services for individuals with mental illness and/or developmental disabilities.
During the hearing, panelists evaluate documents and listen to testimony. They render up to three decisions.
First, they decide if the patient has the capacity to make his or her own medical decision. Second, if the patient is determined not to have that capacity, the panel determines if he or she has a surrogate authorized to make such a decision. Finally, if no such surrogate exists, the panel determines if the treatment is in the best interest of the patient. Its overall goal is three-fold: to protect the patient’s autonomy, ensure due process, and consider the patient’s best interests.
Unless the case is complicated, the panel issues its decision immediately after the hearing, and the paperwork in support of the decision is available that day, Tom Fisher, director of the SDMC program, told Psychiatric News.
The program serves individuals diagnosed with mental illness or developmental disabilities who receive services from facilities licensed, operated, or funded by the New York State Office of Mental Health or the Office of Mental Retardation and Developmental Disabilities (OMRDD). It also serves individuals from facilities to which those offices have distributed federal funding. About 90 percent of these individuals are from the OMRDD facilities.
Only certain medical treatments are covered by the program—for example, the use of general anesthesia, procedures involving significant risk or significant invasion of bodily integrity, the administration of chemotherapy, and HIV testing.
Among the excluded treatments are electroconvulsive therapy, termination of pregnancy, and the administration of routine medications, including psychiatric ones.
As of last August, panels had rendered decisions on 5,432 cases and had authorized 5,723 procedures. (Some patients had more than one procedure authorized.) In fact, one such panel ruled that Dempsey’s patient should have surgery, which he underwent without any difficulties.
There are several benefits to this statewide program. For patients requiring urgent but nonemergency medical care, an expedited review can be requested through which a hearing takes place in seven days or fewer.
Another benefit is that facilities using this program do not incur court or lawyer fees, although they may incur expenses for travel or consultants.
Also, instead of the decision being made by a judge, it is made by four individuals. "The diverse make-up of the panel covers a lot—the legal rights of the patient, the advocacy of the patient, and medical aspects. The committee consists of people looking at the case from different angles," said Dempsey, a volunteer panelist since 1986.
"[Overall] this program is an exceptionally humane way to provide care for individuals who are incapacitated. It expedites treatment. . . . The people who are [at the hearing] are genuinely interested in the patient’s medical well-being and looking out for them legally and making sure that this procedure really needs to be done," said Dempsey.
In light of these benefits of the program, it is not surprising that it has been profiled in medical journals and that another large state, Texas, enacted a similar program in 1993.
The first step in the review process is that an interested person, often a nurse or social worker from the facility where the person resides, completes a "user-friendly," 14-page application with line-by-line instructions. The individual making the application also attaches medical records, X-rays, lab tests, and other pertinent information. For patients not requiring an expedited review, this process takes from several days to several weeks, depending on the facility’s protocols and the urgency of the case, said Fisher.
After receiving this information, the regional SDMC coordinator schedules the hearing, which takes place in an average of about 14 days. Before the hearing, the commission’s staff performs such tasks as processing the application, gathering additional information, setting up a panel, notifying New York State Mental Hygiene Legal Services about the case so they can represent the individual during the hearing, and arranging for concerned individuals (including the patient’s caregiver) and the patient to speak at the hearing.
"The patient always comes before the panel unless there is a medical reason that the person cannot attend," said Fisher.
Panel members review all the requisite information prior to the hearing. If, during the hearing, more information is needed, a conference call is arranged between the panel and any other party whose input is needed.
Because they are familiar with the case prior to the hearing, the panel members can usually issue their decision in about 25 minutes. ▪