Shared Decision-making: Getting a Say in Your Care

I felt very stigmatized by my former psychiatrist. I often felt alienated, belittled, disempowered and invalidated. I felt unable to meaningfully contribute to my care, much less have a say. This significantly weakened both my alliance with her and my treatment outcomes.

In sharp contrast, my current psychiatrist’s approach of shared-decision making encourages me to take greater ownership of my care and treatment. Shared decision-making is when a person and their mental health care provider collaborate to create a treatment plan. The patient’s responsibility is to let the doctor know their goals and concerns for treatment. The health care provider’s job is to provide expert advice about options. Then together, they discuss the risks and benefits, as well as alternatives and expectations.

Having this different relationship dynamic with my doctor has significantly improved both my symptoms and my life.

The Benefits of Shared Decision-making

Here are a few differences between the care I received from my former psychiatrist and my current psychiatrist that show the potential benefits of shared decision-making.

Goal: I want to be fully functioning and have a career.

Former psychiatrist: I felt that she cared little about my goals beyond stability. She characterized my career aspirations as a delusion of grandiosity. She offered me little alternatives to my medication regimen. She only focused on treating my symptoms, which left me in a state of almost constant sedation. My situation had not improved over five years of treatment. Our relationship became combative at times, and I questioned if her medical advice would allow me to achieve my goals. It was very discouraging, and I felt disempowered.

Current psychiatrist: My doctor did not question my goals—he respected them. He gave me options that would help me and asked me to decide on the appropriate course of action. I felt compelled to be both fully compliant and follow his guidance and advice, which I had complete confidence in. I felt validated and empowered. In just over a year of treatment with him, I had achieved my three main treatment goals.

Sleep

Goal: I do not want to live a life where I sleep 14 hours a day due to medication.

Former psychiatrist: Whenever I questioned the medication regimen, she dismissed my concerns by pointing to the degrees on her wall. When I was sleeping 14 hours a day, she told me I was in the best state she’d ever seen me. She told me I was stable. I agreed with her, but it was because I couldn’t stay awake. It was difficult to imagine the possibility of recovery, but I felt that my life didn’t have to be this way.

Current psychiatrist: He reduced the dose of the medication that was causing me so much sedation and suggested I try a stimulant. It was not a conservative approach for someone with bipolar disorder, but he said that there was research to support doing this, and he would monitor me very closely. He felt it might be worth the risk, which could be managed and eliminated if it produced adverse effects. After one week of treatment with him, my sleep time was reduced from 14 to 10 hours a night.

Weight

Goal: I wanted to lose weight because as a side effect I gained 60 pounds in two months on one medication.

Former psychiatrist: She didn’t seem to appreciate the huge impact such a rapid weight gain had on my self-esteem and well-being. She only changed my medication regimen after I threatened to stop taking it on my own. I was furious that she wasn’t more understanding of my concerns. I was ready to risk my safety to come off the medication. I became and stayed obese during my treatment with her.

Current psychiatrist: He carefully explained to me why I was not losing weight. He reduced the dose of the medication that was making it difficult for me to lose weight. As he made the dosage adjustments, he closely monitored its effects on me. I was so relieved to hear that my medication regimen could be changed responsibly. After about a year with my new doctor, I was able to lose over 70 pounds. My self-esteem improved, and I was able to step out of my sweats and buy new clothes for the first time in two years. It felt like a huge accomplishment that previously wasn’t attainable.

Inclusion

Goal: I don’t want my doctor consulting my spouse on my treatment decisions without my knowledge or approval.

Former psychiatrist: She frequently communicated with my spouse directly. I was often not informed of the content or manner of communication. It often caught me by surprise and made me feel angry and excluded. I felt that she listened more to my spouse than me. I actually wanted my treatment to fail out of spite, to show her that she didn’t know what was best for me. I also lost trust in my spouse. I hid my symptoms from him when I was struggling out of fear he might “snitch” on me to my psychiatrist. My condition significantly deteriorated and even led to one of my hospitalizations.

Current psychiatrist: My new doctor listens to concerns raised by my spouse in a form we have all agreed to. He does not adjust my treatment without speaking and consulting with me first. The communication style between the three of us works really well and has led to a significant improvement in my relationship with my spouse. I have even allowed my spouse to take a bigger role in my care.

Feeling alienated from one’s own care can pose a great obstacle for people with mental illness to reach recovery. It felt like my old psychiatrist questioned my capacity to achieve a fulfilling life and therefore acted as a barrier to reaching my goals. I would have reached recovery much sooner had I been treated using a shared decision-making approach all along.

People need to realize the important role they have in defining what’s best for them, with the help of expert guidance. It is your life after all.

Author’s note: Thank you to my psychiatrist Dr. Joseph Goldberg for believing in shared decision-making and taking a leadership role in informing, educating and advocating this practice among his colleagues.

Katherine Ponte is a mental health advocate, writer and entrepreneur. She is the founder of ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness, and Bipolar Thriving, a recovery coaching service for caregivers and their loved ones affected by bipolar disorder. She is also the creator of the Psych Ward Greeting Cards program in which she personally shares her recovery experiences and distributes donated greeting cards to patients in psychiatric units. She is in recovery from severe bipolar I disorder with psychosis. She is also on the board of NAMI New York City.