It took me longer than I wanted, but the first cut of my film, Benevolent Neglect, is completed. I’m circulating it to a small group of people for feedback, but plan on being completely done by the end of August. I wanted to share the news and opening scene with my “followers” on here. You can view it below. Thanks for the support, especially to those of you who have been following my blog for some time now. It never got the attention I would have liked it to, but every visitor and follower mean a lot. I know the story has the potential to resonate with many more, so that’s why I decided to make a film. Feedback, so far, has been very positive.
Last month, a concerned passerby posted a video on social media of a young woman named Rebecca being unsafely discharged from a Maryland Hospital. Public outrage was so widespread and swift, the CEO of the hospital released a statement, within a few days of the incident, stating the hospital is “taking full responsibility” for their failure.
Largely missing in the coverage and accounts, however, are details about what transpired inside the hospitals that led to such egregious outcomes. Is it incompetence or negligence? Who in the hospital is to blame? Are policies and laws contributing factors?
As a son of a mother who suffers from a serious mental illness (SMI), I’ve experienced several unsafe discharges and hospital mistreatment of my mom firsthand. Like Rebecca, my mom has been wheeled out of a hospital in the middle of a psychotic episode. Certainly, part of what makes people with SMI so vulnerable to this inhumane treatment is that many of them don’t believe they are ill. They often refuse or stop psychiatric treatment. When they stop taking their psyche meds, psychosis inevitably follows. As Cheryl, Rebecca’s mom, told CBS news: “She has to be on meds, otherwise she has psychosis. She will have a manic episode.”
In my mom’s case, she harbors deep delusions and paranoia about the medical system as part of her serious mental illness. She believes medicines are poison, so is prone to stop taking them at any given time, for example. This is all reinforced by voices that she hears: The Meds Are Poison Again
Over the course of the last five years, both my mom’s physical and psychiatric health have substantially deteriorated, due to her lack of self-care/adherence to treatment. Hospitalizations have become pretty regular events, as a result. While hospitals are limited by their own policies and government laws, and patients have the “Right to Refuse” treatment, on multiple occasions more should have and could have been done legally, procedurally and ethically to help and treat my mother.
Between 2012-2015, my mom was hospitalized at least a dozen times in Kern County and neighboring areas. For two of those years, she was homeless, living in a car. When I could, I’d travel down from San Francisco to be with her. I was mostly sidelined to talking with doctors and nurses on the phone, though.
As it turns out, I didn’t even know about most of her hospitalizations. I only found out about them by recently acquiring her medical records from various hospitals. Since moving my mom in with me in February 2016, I have seen the process play out three times firsthand. I have a unique experience and vantage point, so to speak.
Patient In, Patient Out
Like clockwork, starting on day four or five, hospitals begin to make clear that they want my mom discharged. The physical therapist usually gets deployed at this time (A patient has to have a minimal amount of strength to be safely discharged.) and the case manager and doctor start discussing discharge plans. This is the very time table I’ve experienced, even when my mom’s vital signs aren’t stable and she’s physically very weak.
This inevitably leads to breaches in ethics and law. In a 2012 incident, for example, a Kern County hospital would have discharged my mom unsafely AND illegally, if not for my presence and direct advocacy. The attending doctor wanted my mom to begin taking insulin as part of her treatment plan. One problem: my mom had developed cataracts, so was incapable of administering the insulin shots to herself. The doctor and I agreed that she should go to a skilled nursing facility for assistance.
Despite this, the hospital was planning on discharging her on what would have been the fourth day. Upon talking to a Director, it became clear the Director was ignoring the doctor’s treatment plan and placement recommendation. She told me that my mom could just continue to take oral meds! I told her I expected my mom to be placed in a skilled facility until she was able to administer the insulin herself and that I knew discounting the doctor’s treatment and recommendations in a hospital discharge plan is legally prohibited.
The hospital acquiesced reluctantly. It’s hard to imagine this absurd situation happening if my mom was wealthy and not on government insurance. Whatever the exact reason(s), the hospitals are obviously trying to minimize costs.
During Psychosis, Inhumane Treatment is Policy
I should say at this point that my mom has never been successfully treated for her SMI. Suffice it to say, the chances of her experiencing an acute psychotic episode when hospitalized are very high. In this state, she will start openly accusing the hospital staff and doctors of trying to kill her. She’ll begin refusing her medicine, try to pull out her IV, become hostile and sometimes a bit combative. She’ll, also, often times try to leave the hospital on her own accord.
I’ve seen this happen, firsthand, and can only imagine this was par for the course when she was estranged from me. And while I’ve always known that hospitals were limited in what they could do to my mom when she’s having an acute episode (They’re not psychiatric hospitals after all, right?), I have quickly learned that they regularly and consciously do much less than they can to stabilize and keep her safe, despite her psychosis.
I experienced this directly in December of 2015. My mom was hospitalized due to respiratory complications related to her congestive heart failure. Like so many times before, she had stopped taking her medications. She was almost completely non-responsive by the time she arrived and was immediately placed on a respirator. On day three, upon my arrival, I would find out that her glucose was above 700 when she was admitted!
On day six, merely two days after being taken off the respirator, my mom began to have an acute psychotic episode. We were essentially abandoned by hospital staff when it became clear that my mom was going to continue to refuse treatment, after pulling out her IV line. Her room was directly in front of the administration desk, so there was no way, given the commotion, that the charge nurse and other supervisors weren’t aware of what was going on.
The hospital staff left me in the room alone with my mom, as she became increasingly agitated and began demanding that she be taken home. I requested a psychiatric evaluation, in the hopes that she would be considered a “danger to herself” and placed on a 51/50 involuntary hold.
Under CA law, a 51/50 authorizes the involuntary hospitalization and possible treatment of someone experiencing a psychotic or suicidal episode. I say possible because a person can be involuntarily hospitalized, but may still be released without undergoing treatment, as has been the case several times with my mom.
As we reached the two-hour mark of this crisis, it became clear that the hospital didn’t want to take any real responsibility or time to help and treat my mom. At one point, the night nurse, who had just started his shift, was willing to restrain my mom, after seeing my mom almost fall trying to get out of her bed, but was overruled by his supervisor. Eventually, my uncle would arrive, after being called by my mother. The hospital would use his willingness to aide my mom in their desire to wash their hands of the situation.
After some argument, the administrator contacted the attending doctor in order to help decide what to do.
As the audio indicates, I ended up arguing with the charge nurse about having a mental health (MH) crisis team (“Metro Evaluation Team”) to come to the hospital to do a psychiatric evaluation on my mom. Hospitals have their own psychiatrists, but in some counties like Kern County, MH crisis teams are also available. I was told they could go to the hospital by an operator I talked to with the county’s MH crisis line. I had called the crisis line about an hour before, just moments after my mom took out her IV. As one can hear, however, the charge nurse denied that the MH crisis team could do that. She went so far as to misrepresent the involuntary treatment process in her argument.
When someone is going to be involuntarily treated for their psychiatric illness, they are first medically stabilized. This way, the doctor can be sure there isn’t an underlying medical problem causing the psychosis. She referenced these steps in the process to claim that the Metro team couldn’t psychiatrically evaluate anyone at a hospital at all, unless the person was medically stabilized first.
My argument was there was no reason why my mother couldn’t remain there to be stabilized before she was transferred to a psychiatric facility, assuming the MH crisis team deemed her needing involuntary psychiatric treatment. It’s possible she misunderstood the process herself. I find it more plausible that she intentionally misled me. Either way, she didn’t even bother to call the MH crisis team to get clarification or advice. I couldn’t call the crisis team myself. The hospital is required to make the call. That’s common policy in many counties that utilize MH crisis teams.
My mom would be effectively denied a psychiatric evaluation, even though she was in the throes of an acute episode. The charge nurse had actually placed the order for the hospital psychiatrist, but in the end, effectively deemed my mom “mentally competent” enough to have her sign herself out “against medical advice.” The administrators obviously knew medically/physically that my mom was not well enough to leave the hospital, so were insistent she sign the form. The hospital would supply my mom with a wheel chair and have the nurse wheel her out to a waiting cab. The nurse would tell me minutes later that he was ashamed of what happened.
Shortly after this incident I moved to Stanislaus County and moved my mom in with me to try and take care of her. I’ve managed to greatly reduce the frequency of her hospitalizations, but three have still occurred under my caretaking. Compared to Kern County, my experience with hospitals here has been very similar. The discharge is rushed and the hospital becomes neglectful, at best, when she starts to become resistant to treatment. When I requested psychiatric evals during her first two hospitalizations, I was met with the same determined and concerted opposition I experienced that day in Kern County. Whether it was the charge nurse or the hospital social worker, hospital admin and staff insisted she didn’t need one.
My experience clearly suggests that it’s standard practice for hospitals to duck responsibility for a patient’s well-being when that patient experiences a psychotic episode. After all, if hospitals are willing to neglect and jeopardize my mom’s health in front of me, just imagine what they do to patient who doesn’t have a family member or someone to advocate for them during their hospitalization.
Cheryl stated that her daughter had been missing for two weeks before she saw her on the video. Since then, fortunately, Rebecca has started receiving psychiatric treatment and is reported to be doing better. Clearly, other and better options are available, as this case has shown. And even with my mom, we just recently experienced a different, better outcome in her most recent hospitalization a few weeks ago.
My mom was restrained for the first time ever in her history. The difference? Apparently, her having a catheter attached to her jugular to begin dialysis. She attempted to pull on it when she was in an acute episode. The countless times she has pulled out her IV lines and has tried to walk out of the hospital, despite being medically unstable, have never proven to be enough, in contrast.
My mom would eventually calm down and cooperate long enough for her to be stabilized medically. She’d be safely discharged on the eighth day. As I told one of the hard working nurses, to me, it was a good hospitalization for my mom overall. People with serious mental illness and families like mine deserve more help, care and respect than we often receive. Stop the patient dumping and unsafe discharges now!