What My Own Experience Taught Me About the Importance of Patient Autonomy

In the fall of 2015, I suffered a psychotic break seemingly out of nowhere. I had already been receiving mental health care for two years prior — weekly therapy and an occasional visit to a psychiatrist to manage my very low dose SSRI (antidepressant taken for anxiety). I had built what I felt was a therapeutic relationship with my therapist and my psychiatrist. But when I experienced this crisis, neither of them listened to me, or were able to meet my needs as a patient. I felt entirely abandoned by two people I had grown to trust. My experience shapes the way I view patient care, and why I strongly believe in patient empowerment, and autonomy in decision making.

A little bit about what happened to me 

I was in the hospital for ten days with extreme paranoia, delusions, and hallucinations. It was a scary time for me. When I was discharged, I probably wasn’t ready, but suffice it to say, the care team was likely happy to see me go and willing to discharge me because I posed no danger to myself or others. If I’m being polite, I’d call myself “unpleasant” during this hospitalization.

My therapist and psychiatrist did not agree with the discharge plan. But I followed up with them. During my follow ups, I was pressured into signing a “treatment plan” and told I’d have to see them both multiple times a week, and that they would only work with each other. When lithium was recommended for me, and I did not want to take it, they terminated my care. I was not opposed to medication, and I was taking what had been prescribed, but I did not want something that required blood draws, nor did I want something with a narrow therapeutic range. It matters not that this medication may have been helpful at the time. What matters is that they were unwilling to accept any of my input into my own treatment, so much so they stopped seeing me after I had been a patient for two years.

I suspect it’s because neither of them handle patients with psychosis on a routine basis, so they just didn’t feel comfortable. But they should have said that and helped me find another provider. In the end, I found someone who listened, I never took lithium, and I made a full recovery, eventually free of medication.

Patient Empowerment & Patient Autonomy

To me, patient empowerment means providing a patient with all the tools they need to make a decision regarding their own care, and then encouraging them to participate in decision making to their fullest capabilities.  It goes hand in hand with patient autonomy, which is a concept indicating a patient has taken control over their own health.

When engaging with patients, it’s important to find out what their values are, and what their goals are regarding their own mental health. What one person views as good mental health or quality of life may vastly differ from the next person. If a care team has different values or goals than that of a patient, the likelihood is that the care plan developed by the team will fail in meeting its objectives. And that’s not good for anyone. Most importantly, the patient.

Medication as an example

I currently work as a psychiatric nurse on an acute inpatient unit. It is often the case that people are reluctant to take medication for a wide variety of reasons. Some do not believe they are ill and some fear side effects, as two examples. The capacity of the patient to participate in meaningful dialogue will influence the direction of treatment. However, even those unable to participate initially, should be given the full opportunity to do so once they are able.

Let’s say a patient is admitted involuntarily…. The patient is disorganized, delusional, and unable to engage in dialogue regarding their treatment plan. The patient is required to stay in the hospital because they have engaged in dangerous behaviors in the community. In this case, clinical decision making prevails until the patient reconstitutes (i.e., is back on track).

Once the patient is able to engage, it is important to find out all of their thoughts and feelings regarding medication, and regarding their own mental health. Do they think they need medication? Why? Why not? What do they know about specific medications? What are their concerns about medication? What is quality of life for them? What does it mean to have good mental health? If they are experiencing symptoms, which ones are most bothersome? Which ones would they be able to live with? How? Do they want to avoid future hospitalizations? How do they think they can do that? What type of help, if any, do they most feel they need? Their care plan, including the use of medications, should take all these factors into account.

What I often find, is that patients feel forced into taking medication. This is actually the case for some of those under court commitment. It is entirely understandable that they feel powerless in their own care when they begin to reconstitute. Perhaps the control they exercise is that of not engaging in treatment once discharged from the hospital. Discussing their experience and beliefs is of high value in helping them build a care plan that is mostly likely to address their needs.

Providing them with the knowledge and tools needed to live their idea of a best life requires time, effort, and dedication. It doesn’t matter whether I’m right in thinking it can change outcomes. It’s simply the right thing to do. Every time. Every patient. I’m not saying it’s never done. But I am saying it’s not done nearly enough.

Be well,

Tara