NAMI HelpLine

December 09, 2019

By Katherine Ponte, JD, MBA, CPRP

Backdrop featuring a red umbrella and rain dropsMy experience during my crisis made me feel worse than my illness itself. Three armed police officers and two paramedics pounded on my door, entered my small apartment, checked my vitals, strapped me into a wheelchair, forcibly removed me from my home, and escorted me to a siren-blaring ambulance. I was shocked and confused. I yelled. I cried. I was terrified. I felt like I was being imprisoned.

I was involuntarily admitted to a chaotic psychiatric emergency room where I was isolated from my family and interviewed alone. I was then placed on a gurney and forcibly medicated multiple times. For two days, I was confined to a gurney in a psychiatric emergency room corridor before being admitted to the inpatient unit. I was deemed to be a danger to myself or others. It was embarrassing and disempowering. It was the ultimate loss of control.

Sadly, this is what a psychiatric crisis can look like for many people living with mental illness.

In 2016, 5.5 million people withmental, behavioral and neurodevelopmental disorders visited the emergency room. Mental illnesses are the third most common cause of hospitalization in the U.S. And for many living with severe mental illness, the first significant treatment experience is often hospitalization, which is what happened to me.

My spouse and I were completely unprepared for a mental health crisis. The experience had long-lasting and traumatizing effects, magnified by how unprepared and uninformed we were. It’s essential to recognize the possibility of a crisis and be prepared, while also working to prevent it. Unfortunately, the health care process is not always logical, orderly or friendly.

With that in mind, here is my advice based on my experience to help with crisis prevention and planning.

Planning in Advance

Early signs of an impending crisis
Knowing the early signs of an episode is key to planning for a crisis. For people living with bipolar disorder, reduced sleep is a telltale sign of hypomania (an elevated mood that is similar to mania, but less severe). My spouse usually notices it before I do and calls my psychiatrist immediately. A quick medication adjustment has contained my hypomania before it escalates to mania. My spouse’s involvement is important as I often lack insight or am unaware when I start to become symptomatic. Other preventative measures are always taking my medication and at the appropriate doses, and abstaining from substance use. My past episodes provide me with invaluable insight into possible future episodes.

Psychiatric Advance Directive (PAD)
You should talk about a potential crisis with your caregiver in advance. The completion of a PAD provides the perfect opportunity to do so. A PAD is a legal tool that allows you to state your treatment preferences in advance of a crisis. Examples include our preferred representative if we become incapacitated, preferred hospital, least favorite treatment, preferred medications, etc. It can be very empowering to have a PAD as you retain some control over your treatment even in times of crisis. It also allows caregivers to ask about your preferences, which may lead to enhanced family relationships. And it helps caregivers who at the time of a crisis may otherwise struggle trying to determine what their loved one might want. Standard forms can help you prepare your own PAD.

Privacy Issues
In some cases, health care providers are prohibited from sharing our treatment information with our caregivers unless we grant permission. This can be particularly frustrating to a caregiver during a crisis. It is essential for caregivers to talk about privacy issues beforehand, including what information you are comfortable with them having access to. It might be helpful to specify these permissions in a written waiver.

Alternatives to Hospitalization

Peer Respite
A less familiar crisis option is a peer respite. A peer respite is defined as “a voluntary, short-term, overnight program that provides community-based, non-clinical crisis support” in an environment that feels more like a home than a treatment setting. These facilities are staffed and operated by peers. Research shows that “guests” were 70% less likely to use inpatient or emergency services. A peer respite might be a helpful option to address an emerging crisis before it reaches emergency stage.

Outpatient Program
In a hospital setting, many hospitals have an adult outpatient or partial hospital program. In these programs, a person lives at home while engaging with services. Participation may be voluntary or mandated by court order. It may also precede or follow an inpatient hospitalization. Under hospital staff supervision, the program is meant to ensure that a patient is stable and also facilitates their transition back into the community. It also seeks to reduce or avoid future hospitalizations. The typical program lasts two weeks.

Emergency Engagement

Crisis Intervention Teams (CIT)
As an alternative to calling 911 in a mental health crisis, a person may call a CIT. According to CIT International, a CIT is a “community partnership of law enforcement, mental health and addiction professionals, individuals who live with mental illness and/or addiction disorders, their caregivers, and advocates.” They are present in over 2,700 communities across the U.S. CITs are a best practice model in law enforcement. There are several benefits to CITs, including the reduction of arrests and need for additional mental health services.

Another alternative is a mobile crisis team (MCT). A mobile crisis team of mental health care providers can attend to a person in need and conduct medical assessments. It may be helpful to research CITs or MCTs in your area and have their contact numbers handy to prepare for a potential crisis.

911
Calling 911 is the most elevated, and potentially contentious, course of action. I was angry with my spouse for years for calling 911. I blamed him for my hospitalization. I was embarrassed and ashamed that my neighbors may have witnessed the events. In fear of a repeat experience, I was afraid to ask for help, which ultimately led to two subsequent hospitalizations. As I became well, I came to appreciate my spouse’s predicament at the time. I think we would have handled the crisis much differently and avoided the need for a 911 call if we had been prepared. It might be helpful to include in your crisis plan at what point you should call 911.

Hospitalization
If the circumstances allow, it might be helpful to seek a second opinion from a psychiatrist when faced the difficult choice of whether to receive inpatient care. When hospitalization is deemed the best course of action, a patient is typically admitted to a psychiatric emergency room. It may be helpful to know in advance that it can be chaotic and a shortage of beds is common. And that, upon admission, a patient is continuously monitored.

Crisis was the most difficult mental health experience for my spouse and me. If we knew how to prevent a crisis, how to handle one and what to expect, our experiences and outcomes could have been better. I now know that there are alternatives to calling 911. I pray that I never experience another crisis, but if I do, I am certain it will not be as traumatizing. Getting help should make you feel better, not worse.

Authors note: I would like to dedicate this blog post to those who have found themselves in similar circumstances to mine and their families. I hope that you can heal from the experience and will also be prepared for the next possible crisis.

Editor’s note: Since this blog post was published, the 988 Suicide and Crisis Lifeline has been introduced. The three-digit number promises a more empathetic response to mental health crises. When people call of text 988, they will be connected with trained responders who will listen, offer support and guide callers to the appropriate resources.

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. 

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