Late in February, I drove to Annapolis, Md., to listen to testimony being given to our state’s Senate Finance Committee on a number of proposed bills relating to involuntary treatments. But this article is not going to be about those bills or the fuss that played out around them, but rather about what happened when I arrived a bit early and heard testimony on another piece of legislation that had nothing to do with psychiatry and everything to do with being human.
Ten bills were scheduled for public testimony that afternoon, and I arrived shortly after 1 p.m. to a hearing room in which there was standing room only. There are 11 members of the Senate Finance Committee; 10 were present, and I’m going to guess there were more than100 people in the room waiting to testify. The only other time I had gone to listen to public testimony was last year for Gov. Martin O’Malley’s Firearm Safety Act, and for that piece of legislation, 1,300 people were there to testify, the large majority of them being Second Amendment activists who were there to oppose the bill.
The legislation in question (the one I did not come to hear about) was Senate Bill 654. The description of that bill reads:
"This bill requires the Department of Health and Mental Hygiene to identify up-to-date, evidence-based, written information about Down syndrome. This information must be provided to health care facilities and providers, who must provide the information to expectant parents who receive a prenatal test result for Down syndrome and parents of a child diagnosed with Down syndrome."
My first thought was this is a standard of care issue, something to be addressed by the specialties involved, not something that should be the subject of legislation. We don’t really want to have condition-specific laws mandating what physicians must tell their patients, do we? Where would it stop: Would legislation be written for every disorder? Shouldn’t the clinician who knows the family determine what information is best for each individual and with what timing? Never mind the nuance of figuring out exactly what is "up to date" and what is not. And it’s not as though the parents couldn’t search for the information themselves – certainly there must be resources online.
Then the testimony began. There were women whose children had been diagnosed, generally in utero, before the time when one could Google the condition and search for available resources. They told stories of asking for resources, only to be told that their clinicians didn’t know of any. And they told stories of being counseled to abort after they wanted to continue with the pregnancy. They discussed how shocked and alone they felt, and how insensitive the care they received was. In addition, they talked about the value their children added to the world. And then the adult children with Down syndrome also testified. In a way, I felt like it was testimony for the rights of these people to be here, more so perhaps than testimony to require clinicians to give out the appropriate pamphlets.
Representatives from MedChi (the Maryland State Medical Society) and the Department of Health and Mental Hygiene also testified. While neither was opposed to the creation of lists and websites of resources and educational information, they did object to the mandate that the clinician must give the information at a specific time. What if the clinician felt it was not in that patient’s best interest to distribute the information to a specific patient or at a specific time? Perhaps it wasn’t there, but I heard the unspoken concern that the clinician might be subject to sanctions or accusations of malpractice if they neglected to distribute the information as required by law if the legislation passed. The Down syndrome information supporters said they had already gone office to office to provide pamphlets and information to clinicians, which were then placed in a drawer and not distributed. They objected to language that would change "must" to "may" with the idea that it wasn’t strong enough to move clinicians to action.
Another bill also caught my attention this year, although I was not present for any public testimony. Delegate Robert A. Costa proposed House Bill 279, legislation that would forbid a physician from charging or filing an insurance claim for any appointment that began more than 30 minutes from the scheduled time. The legislation did allow for an exclusion for emergencies, if the doctor presented an "emergency services verification number" to the patient, but it did not take into account that an appointment might start late because the patient was late!