‘Informed consent’ should mean genuine consent

Tom Dooling

Summer 2009

One of the oldest and most widely recognized “warranties” in the delivery of health care, including mental health, is the doctrine of informed consent.

The Supreme Court has recognized that medical intervention, be it by the surgeon’s knife or prescription of medication, constitutes little more than an assault and battery if the patient doesn’t agree to it. And the patient’s agreement is worth little if the patient doesn’t know why the intervention is necessary, what the chances are of it not working and what the possible side effects may be.

Nowhere in our public health system is this covenant more widely breached by the health care system than in the treatment of mental health and developmental disabilities.

Stripped of rights

It is routine for people committed to state-run mental health programs and or institutions for the care of people with serious developmental disabilities to be routinely stripped of the right to choose, agree to or refuse medical treatment.

Commitments to both of our Montana mental health institutions almost invariably grant the institution the right to give medication involuntarily. For many years, all our state institutions have found and arranged to have public guardians appointed for residents/patients, who tend to grant whatever medical requests the institution makes.

One of the many medications which are delivered to institutionalized women is Provera.  This drug first came to public attention some 30 years ago, when it began being administered under court order to convicted male sex offenders. The drug has the effect of temporarily suppressing the operation of the gonads — the testicles in males, the ovaries in women.  Under prolonged use, the glands shrink and cease creating sperm, not only sperm cells in men and ova in women, but also the hormones these glands produce, such as testosterone and estrogen. The use of Provera

in males, no longer as common as it was 30 years ago, is often referred to as chemical castration because it not only decreases sexual desire, it interferes with a man’s ability to become sexually aroused at all.

Provera’s use in women acts as a convenient form of birth control, because it is delivered in the form of a monthly or quarterly intramuscular shot. Provera not only prevents unwanted pregnancy, because it modifies or extinguishes the production of egg cells, but it also affects the lining of the uterus, or womb, preventing the implantation of an embryo. It frequently causes menstruation to cease, which may be one of the reasons why its use is popular with institutionalized women, so that caregivers do not have to deal with tampons, pads or other materials containing menstrual blood.

Mood swings, fragile bones

Unfortunately, Provera also sometimes convinces a young, healthy female body that it has reached menopause. Not only is menstruation decreased, so is sexual desire. Patients occasionally have other menopausal symptoms, including mood swings. Most dangerously, the use of the drug in women is associated with the loss of bone mass, and over time to osteoporosis, where bones become fragile, and easily broken.

Patients in mental hospitals, residents in state institutions for the developmentally disabled and residents in group homes do not lose all their constitutional rights. The right to determine what is done to one’s own body, including what drugs are injected into it, is protected by the United States Constitution.

Doctors who propose to prescribe Provera to women with disabilities are ethically required to advise the patient fully of the dangers of this drug, not only to her quality of life, but to life itself. You have a right to ask what medicines are being given you and what their effects are likely to be. And if your commitment allows medication against your will, talk to an attorney: in most cases that blanket allows only medication for psychiatric purposes to be administered against your will.

Tom Dooling, an Episcopal priest, is a for staff attorney with Disability Rights Montana, based in Helena, Mont.

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