All patients have the right to refuse treatment
Treatment decisions not always autonomous
Every patient in the United States has the legal right to refuse medical care — even when that care would help the patient, experts agree.
With psychiatric care, things can get a little trickier, but those same experts agree that psychiatric patients are due the same rights as someone under any other type of medical care.
"The right to refuse psychiatric care is no different than the right to refuse any medical care, even if it may be a person with cancer who says, "No, I just don't want to go through that chemo," even though it would clearly help that person," says Andrew Penn, JD, of the Bazelon Center for Mental Health Law in Washington, DC, which is an advocacy group for the rights of patients specifically with mental illness.
"And yet," Penn explains, "it doesn't always work out that way. Treatment people . . .they give less credence often to the personal or individual decisions or desires in that [psychiatric] context."
The right to refuse treatment is a "huge issue, especially for psychiatric patients, [including] the issues of competency, forced treatment, involuntary outpatient commitment; those kinds of things are huge topics in our field," says Mark Salzer, PhD, associate professor and director, UPENN Collaborative on Community Integration of Individuals with Psychiatric Disabilities at the University of Pennsylvania in Philadelphia.
At McLean Hospital, a psychiatric hospital in Belmont, MA, David H. Brendel, MD, PhD, agrees that psychiatric patients have the right to refuse treatment. He also chairs the Institutional Review Board at McLean and chairs the ethics committee for McLean.
"There are many patients at McLean and other psychiatric hospitals that are involuntarily committed, but just because they are involuntarily committed doesn't mean they lose all their [rights]," Brendel explains.
"They can still refuse medication and other forms of treatment if they want, unless the treating physician chooses to pursue other legal means to force medication — that's an area that sometimes doesn't get enough attention," he says.
Not only do they have the right to refuse treatment, they have the right to refuse to be a participant in clinical research studies, Brendel says. At McLean, for example, there are about 300 "active research studies."
"Many of those studies do include patients — some of them patients who are quite psychiatrically ill — major mood disorders, psychotic disorders, dementia," he notes.
McLean takes informed consent a few steps further to insure that patients are treated fairly when it comes to research conducted with patients at the hospital. For example, Brendel says that if a clinical researcher wants to do a study on an inpatient, the hospital does not allow the researcher to approach that patient directly, even if the patient was committed involuntarily.
Although flyers and advertisements are two ways to recruit patients, whereby the patient might volunteer, there are other methods of recruitment. Brendel says that a researcher may also approach a patient's physician to say, "Based on an initial review of this patient's record, I think this person might be eligible for the study — is it OK if we approach the patient about the research?"
"The IRB usually requires the treating physician, who has no particular stake or interest in the research, to first talk it over with the patient, so the patients are not in any way feeling pressured or coerced," Brendel says. "So, they're not being flooded with multiple researchers asking them to be in multiple studies."
The treating physician can, in those cases, decide if the patient is "up for it, whether it might be upsetting to the patient, and whether the patient might be eligible," Brendel says.
The McLean IRB also often requires the treating physician to conduct a competency assessment in order to determine if the "patient can understand the risks and benefits of the research and meaningfully consent to participate," Brendel tells Medical Ethics Advisor.
"And in particularly risky research, we have the requirement that another clinician, who is completely independent of the research study in question, does that competency evaluation [to determine] that the patient is competent to understand and sign the consent form," Brendel says.
But there are other ways for approaching psychiatric patients to participate. Brendel says that if a patient is determined to be competent to provide — or not provide — informed consent, "then nobody else would have the right to override that in any way."
"Where it becomes interesting, and I think, important is [when the patient] is judged not to be competent to participate in the research," Brendel says. "In that case, there may still be an indication to do the research. In fact, in some cases, the research is being done for that very reason, that is, to treat people with really major disorders — psychotic disorders or dementia disorders."
In cases where the patient is not determined to be competent to decide to participate or to refuse to participate, McLean has "policies for surrogate consent, which again, the IRB reviews very carefully."
In those cases where the risk associated with participating in a particular research project is considered minimal, a surrogate family member might be allowed to give consent for a patient to participate. In cases where there could be significant risk to the patient, McLean might increases the requirements for surrogate consent, "even to the point that we might require a legally appointed guardian" Brendel notes.
"The IRB is often making judgments about the risk-benefit profile of the research," he says.
Sources
- David H. Brendel, MD, PhD, Director of Medical Ethics, and Chair of the Institutional Review Board at McLean Hospital, Belmont, MA.
- Andrew Penn, JD, Senior Staff Attorney, Bazelon Center for Mental Health Law, Washington, DC.
- Mark Salzer, PhD, Associate Professor and Director, UPENN Collaborative on Community Integration of Individuals with Psychiatric Disabilites, University of Pennsylvania, Philadelphia. E-mail: [email protected].
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