Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities
The Power of Making Decisions
“Not being allowed to make decisions for oneself is very degrading, painful, and disempowering,” says Professor Elyn R. Saks, Founder of the Saks Institute.
Sigmund Freud got many things right, and one of the most important was his claim that what people want in life is to work and to love. Back in the ’80s, it looked like I was not going to get this. I was diagnosed with schizophrenia and given a “grave prognosis.” This was during my third hospitalization over five years. The prognosis meant that I would be unable to live independently, let alone to work. And that my relational life would be poor.
That hasn’t turned out to be my life. I am now a “Distinguished Professor” at the USC Law School, with joint appointments elsewhere. I also have a beloved husband and many close friends.
I believe I have evaded my grave prognosis for three reasons: excellent psychiatric care, both meds and intensive therapy; wonderful and caring family and friends; and a workplace that is both supportive and stimulating. When I am writing an argument or counterargument, the crazy stuff recedes to the sidelines. My mind is both my best friend and my worst enemy.
I can’t overstate the importance of being allowed to make my own decisions. I was hospitalized against my will in the ’80s (my emergency certificate said I was “gravely disabled” because I couldn’t do my Yale Law School homework!). And I was mechanically restrained often: 20 or so hours the first two days, and then every day for three weeks for five to fifteen hours a day. My chart had this notation: “use restraints liberally.”
When I was transferred to another hospital, I stopped being restrained, even though my behavior hadn’t changed. Restraints usage is said to have more to do with the ethos of a ward than patient behavior.
Not being allowed to make decisions for oneself is very degrading, painful, and disempowering. Patient choice is important even if the patient is impaired. Or even if we think he or she is making an obviously wrong decision. We allow people to make foolish or unwise decisions all the time.
For example, for about 10 or 15 years after my last hospitalization I made many efforts to get off medication, undertaking each effort with great gusto and failing miserably every time. Eventually I followed my doctor’s advice and my life got immeasurably better. When I look back at that time I wish I had gotten smarter sooner, but was glad I was allowed to make my own decision in my own time.
Indeed, force is an unstable solution. If we encourage the patient to make her own decision, she is likely to be more committed going forward.
I have never “officially” had a Supported Decision-Making (SDM) plan. But I definitely make all major decisions with the support of family and friends. As an example, when my 15-day emergency commitment had run its course, I could either sign a “Voluntary” and stay in the hospital, or be subjected to a civil commitment proceeding. I thought the answer was clear: I should contest the commitment. My dad, who is also a lawyer, urged me to sign in voluntarily. If I didn’t, I would likely have to report this on every bar application I made. He was exactly right.
Currently I make a lot of important decisions (e.g., I have had several serious physical illnesses requiring treatment) and I always consult my husband, Will, and my closest friends, like Steve and Esther. Interestingly, I do not consult my parents, as I do not want to go back to being the kid in my family of origin. That said, I talk to them pretty much every day – just not about that.
The value of having autonomy and making one’s own choices cannot be overstated. That’s one reason that SDM is so powerful. Instead of taking choice away from you and having a guardian make your decision, you get to make the decision with the support of others you trust. It is your final decision in the end. This idea – SDM – will restore more people to the role of architects of their own lives.
And having had that taken away from me, I can’t say enough for restoring agency to patients themselves.