Lack of Informed Consent and Adequate Information about Medical Treatment
My son has undergone electroshock therapy for 14 years now. Each time they tell me that he needs it and that, “You should sign this paper to allow it,” and I just sign the paper. But I still don’t know what shock therapy is and how it works. I think my consent for my son would be genuine only if I knew what exactly I’m permitting to happen.
—Akbar, father of Hesam, a 34-year-old man with a psychosocial disability
We documented many cases in which doctors and other healthcare professionals did not seek or obtain the informed consent of their patients with disabilities and did not provide them with comprehensive information about the treatment or potential side-effects in a fully understandable format, or often at all. In many cases, parents or other family members consented for their adult children or relatives to be treated, and such consent is typically obtained as part of the paperwork required for the treatment to start, also often without full information about the treatment.
For adults with disabilities, medicine and medical treatment should be delivered with the consent of the individual being treated. The CRPD requires health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent. The CRPD Committee has held that treatment by health professionals without consent is a violation of the right to equal recognition before the law and an infringement of the right to personal integrity; freedom from torture and inhuman and degrading treatment; and freedom from violent exploitation and abuse. The UN special rapporteur on the right to health has also stated that informed consent “is a core element of the right to health both as a freedom and an integral safeguard to its enjoyment.” The special rapporteur also noted that where grounds of “medical necessity” and “dangerousness” of the person are used as justification for non-consensual treatment; their application is open to broad interpretation and, consequently, raises questions of arbitrariness.