(The name of the hospital has been omitted and names of the employees not used or changed, due to legal implications.)
Stunned. Disgusted. Outraged. Sad. These were some of the different emotions I felt a little over two weeks ago when my mom was allowed to leave a hospital against my objections, and despite her being in an obvious psychotic state and not medically stable or cleared. I already knew that the mentally ill often receive grossly inadequate care at hospitals. I never imagined it would happen right in front of me.
My mom, initially, was admitted for breathing complications and slurred, incoherent speech. Upon arriving, she was sedated and put on a breathing respirator. She would be in the hospital a total of six days. I arrived on the third day, Christmas Day. The nice facilities, spacious rooms and uncrowded intensive care unit told me right away that my mom was in a private hospital. Many members of the staff were young, seemingly in their twenties and thirties. One of the nurses, who began training in the ICU that very week, told me she was a recent graduate from Bakersfield State College. Her inexperience showed a bit in her demeanor as she lacked the level of empathy and friendliness the rest of the nurses showed. Overall though, for most of the stay, the staff treated my mom well and readily answered my questions and concerns, of which there were many. I did wonder how or for how long her Medi-Cal was going to pay for this private hospital and knew there would be some wrangling over her discharge. There always is. Hospitals want indigent patients out as quickly as possible. This can lead to premature or inadequate discharges, as it has in the past with my mom. But for the most part, I was being appreciative of the reduced stress the hospital was providing.
The quality of care dropped precipitously, though, on the sixth day. Beginning around 4:00 that afternoon, and over the course of several hours, my mom would become increasingly hostile and agitated. Eventually, she would become fully non-compliant with her medical treatment and, though still weak and unable to stand or walk, would try getting up from her hospital bed to leave the hospital. She, in fact, would start stating that she wasn’t in a real hospital. Almost immediately upon my mom showing an acute psychiatric episode, the hospital staff, particularly the administration, showed little to no desire to help me or my frail, sixty-four year old mother.
To her credit, the attending nurse, “Danny,” initially attempted to reassure my mom and keep her calm. Granted, my mom wasn’t in her fully agitated state yet, but “Danny” nonetheless demonstrated a great amount of patience with my mom for around the first hour of this ordeal. My mom’s IV catheter had to be moved, due to swelling in her hand and some clogging this was causing in the line. My mom’s veins are small and, to her misfortune, it can take a number of pokes with a needle to find one successfully. In this situation, it took four pokes for them to find a vein. It actually took another attendant, “Johnny,” who worked in the emergency wing of the hospital and who was renowned for finding veins, to accomplish this. My mom complained about the multiple pokes, understandably, but she largely cooperated, despite her saying “no” to the procedure a couple of times. She was seemingly put at ease with “Johnny’s” assurance that he used to work in prisons and always showed his patients the utmost care. He actually promised he would find a vein on his first try. “Danny” and I were greatly relieved when he did.
That would be the extent of my mom’s cooperation, though. She began refusing any other treatment or tests. Even though she allowed the IV catheter to be put in, she refused the attachment of the IV line. While I talked to her and distracted her, “Danny” hooked it up anyways. Next, it was time to check her glucose and to give her insulin. My mom is a diabetic and her glucose was exceedingly high when she was admitted. She refused the glucose test, but “Danny” quickly poked her finger to draw blood anyways when, again, I was talking to and distracting her. The insulin is more challenging to administer, requiring as it does seconds to inject, and once my mom said “no,” “Danny” didn’t even bother trying.
At that point, I feel we were essentially abandoned by the hospital staff. My mom would become more agitated and hostile. She began accusing the hospital staff of stealing money from her and general maltreatment. She repeatedly would say her lunch that day, her first solid meal since being admitted, was lousy and that it made her feel sick. She also began to try and remove various pieces of equipment from her body, including the IV catheter. She began stating she wanted to leave and go home, and demanding that I take her. All this went on for more than an hour. I did what I could to reassure her and keep her calm and, at various times, I physically prevented her from removing her chest sensors and messing with her IV catheter. But ultimately, I wasn’t successful.
“Danny” came in a couple of times to reset some monitors that would start beeping incessantly from my mom messing with the equipment, but that was pretty much the extent of her presence at that point. Another nurse came in to try and discourage my mom from removing her chest sensors, but that attempt didn’t last more than fifteen seconds. I walked out of the room a couple of times to update “Danny,” but I couldn’t leave my mom for long, due to her trying to pull out the IV. At about 6:00 pm, when I wasn’t directly watching her, my mom managed to pull out a part of her IV catheter. She began bleeding and was in good deal of discomfort. The tip had been bent. An alarm sounded, but after around twenty seconds and nobody seemingly coming in to help or check in, I pulled it out for her.
After I told “Danny” what my mom did, she came in to help me clean up the blood and then left. She still managed to be pleasant, but not helpful. Her shift was close to ending, so I know that factored into her lack of attentiveness and care. Still, for more than an hour, there literally was no guidance or advice for me and no counseling or support for my mom. Were there other nurses that could help or intervene? Where were the supervisors? Normally, who counsels patients when they start being unruly? The hospital was a Christian hospital and they had chaplains — was there a role they could play? The doctors were hardly seen. They made rounds, but I hadn’t seen a doctor come by for my mom since the morning. Private hospital or not, the seeming unpreparedness and lack of support was inexcusable. My mom’s room was directly in front of the administrative area, not even 20 feet away. There’s no way the supervisor(s) didn’t know what was going on.
At that point, I made the decision to call Kern County’s mental health crisis hotline to receive advice and information about what I could do. Even though I wasn’t told so by anyone at the hospital, I knew the hospital probably had a psychiatrist that could do an evaluation, which includes an assessment for a 51/50 hold. In California, that legally allows a person to be hospitalized and treated against their will, if the person is deemed a danger to himself/herself or others. I wasn’t certain that the psychiatrist would deem my mom a threat to herself. I just wanted the assessment done anyways, in the hope that she would be. If there were more and better options, I wanted that information too before I talked with the staff. I left my mom’s ICU room and made the call from the waiting room outside the unit. The person from the crisis hotline, “Rachel,” couldn’t believe what she was hearing. Part of what the hotline does is help people who are in the middle of a mental health crisis get medical help. Oftentimes, like in my case, family members call to get help and information for a loved one. It’s not often when a crisis hotline receives calls from someone already in a hospital.
I already knew that Kern County had a mobile assessment team called the Metro Evaluation Team (MET). They do “field visits” and could, I was told by “Rachel,” go to the hospital to assess my mom. I couldn’t call the MET directly, though. I would first have to contact the police. They do an initial assessment and then, if the police deem it necessary, they contact the MET. This was problematic in a number of ways. How long would the police take? They’re not trained clinicians–what if they decide not to call the MET? Would they even bother going to the hospital at all? What if the police decide to kick me and/or my mom out? I prefer not to involve the police at all, actually, given their lack of training in dealing with the mentally ill. This particular situation and process made that inevitable. “Rachel” and I agreed that it would probably be best that the hospital staff make the phone call. The police would probably take them more seriously than if I were to call. I didn’t care, at this point, if the hospital had its own psychiatrist. It was pretty obvious that they were going to continue to provide marginal care, if any care at all, for my mother.
I returned to the ICU unit to make the request. It was around 7:30pm. The night shift had started, and I was greeted by the new attending nurse, “Harold.” Harold was a bit of a godsend. He was nice and receptive. I had seen him on the floor during my time there, but he hadn’t been assigned to my mother yet. He seemed briefed on the current situation and mentioned to me that my mom was still refusing care. I told him how unhappy I was with the current situation and what I wanted done. He was supportive. Together, we talked with his supervisor, “Wen.” Speaking calmly, but sternly, I made it clear to “Wen” what I wanted and that I was frustrated and upset. I hadn’t noticed if she had just started her shift. At that point, I didn’t really give a shit either way. My mom was being neglected, and there was no way her agitated state and stress level was good for her blood pressure and glucose, both of which remained high throughout her stay. I couldn’t make out exactly what my mom was saying in her room, but she was complaining loudly.
“Wen,” being a bit defensive, predictably stated that calling the police or MET team wasn’t an option. She said with doctor approval, they could put a request in for a hospital psychiatrist to give an evaluation, but that the psychiatrist wasn’t in until the morning. I agreed, but only as a way to make the hospital agree to some responsibility over what was happening. I didn’t think the situation would continue through the morning. I was certain something ridiculous would happen before then. Sure enough, as I was talking with “Wen,” my mom tried getting up to stand. She was trying to walk out of the hospital. My mom was still recovering and had just started receiving some physical therapy that day. She was only able to make it to the edge of her bed in that early afternoon session. She was obviously determined, given her state of mind, but she wasn’t physically capable of walking yet. I got to her just in time. She was standing, but starting to lose her balance. I gently sat her back on the bed and pleaded with her to not try that again. I couldn’t believe that the hospital was so blatantly willing to jeopardize her personal safety in front of me.
Shortly after this, my uncle, my mom’s brother, showed up. I had called him when in the room earlier with my mom. He has been a barrier in many ways to my family’s attempts at getting my mom psychiatric help, but I wanted some help in trying to convince my mom to stay in the hospital, at least until the morning for the psychiatric evaluation. I also just wanted to be free to walk around and, if need be, make phone calls. I couldn’t stay confined in my mom’s room or by her side the entire time, which may or may not have been a conscious strategy by the hospital staff or supervisors to absolve themselves of responsibility for my mom’s care and/or keep me preoccupied. My mom was insistent that she wanted to leave, though. By now, she was saying that she wasn’t in a real hospital. Along with repeating that she was being mistreated, she began saying that the air coming through the vents was making her sick and weak. She would continue trying to get up from her bed, even though her urine catheter was still attached.
By this point, the main supervisor, the “charge nurse,” was involved. Both the charge nurse and “Wen” began saying that they couldn’t keep her there if she wanted to leave. Patients have rights of course and by law, patients have the right to refuse medical care. My mom is very well aware of this and was referencing it multiple times. This point was reiterated by her doctor on the phone after the charge nurse called him to update him about the situation. This made it clear to me how the hospital administration wanted this to end. I challenged them and protested however I could, nonetheless. I started audio recording and took some pictures as evidence of their neglect and absurd reasoning. I threatened them legally, saying that if anything happens to my mom once she leaves the hospital, they knew they could be sued. I requested calling the police/MET team again. “Wen” insisted that even if they did, the MET team wouldn’t do anything until my mom was medically stable.
Technically, I know that’s true, in the sense that when someone is placed on a 51/50 hold, their medical/physical issues are stabilized first, before their psychiatric condition is treated. The reason being that medical/physical conditions, like high glucose, can cause or exacerbate a psychiatric issue/condition. That was an excuse for inaction at this moment, though. That wasn’t stopping them from making the call, since if the MET team placed her on a 51/50 hold, they could medically/physically stabilize her at the hospital she was already in or send her directly to the county hospital where they treat people on 51/50 holds. In response to Wen’s claim, I just said, “Whatever.”
And an actual 51/50 hold aside, I know hospitals have some sort of guidelines or plans for when a patient gets unruly. In fact, this was confirmed to me by “Harold.” At a moment of disagreement over my mom’s mental state with my uncle, “Harold” said to me that they could tie her down. As the next of kin, he asked me if that’s what I wanted to do and I said yes. My uncle by then was publicly saying, announcing, that my mother was an enlightened person and had a special connection with God. He went so far to say that my mother was talking with God there in the room. Calmly and sincerely, “Harold” initiated what I assume to be hospital protocol to tie down my mom. He told her, “Miss. [name witheld], I respect your views and admit that you may very well be an enlightened person and have a special connection with God. But your beliefs don’t override our responsibility to adequately care for you.” I appreciated “Harold’s” seeming sincerity in that statement. I assumed “Harold” was a devout religious person, like much of the staff seemed to be there.
Both supervisors interjected, though, and at that point, “Harold” took a backseat to their decision-making. Around thirty minutes later, after the supervisors talked to the doctor, at around 8:30 pm, Harold brought out a wheelchair and “Wen” began helping my mom get dressed. Before my mom was wheeled out to a waiting taxicab by “Harold,” the staff implored her to sign a document, stating that she was leaving against “medical advice.” This, I’m assuming, potentially legally absolves the hospital of responsibility of what could happen to my mother in the aftermath. So, taken altogether, my mom was essentially allowed to leave, despite still having high glucose (The machine read “220” when “Danny” checked it earlier. Normal is lower 100s.), high blood pressure, not being fully recovered from a lung infection, and despite being in a psychotic state. She wasn’t “discharged,” so she had no treatment plan, prescriptions and/or follow-up medical appointments made for her.
I have since launched complaints with the hospital, the State of California and the Deputy Director of Mental Health. I’ve inquired about legal assistance, but so far, no luck. My mom was weak and distressed in the immediate days after her release, but seems to have weathered the storm, at least for now. The county is supposed to be monitoring my mom’s condition, but as usual, that has been slow going. There’s a new program, Assisted Outpatient Treatment, I expressed to the county I’d like her enrolled in, but there are bureaucratic procedures and processes they seem committed to going through. The gross irony is that the county workers and officials know that another hospitalization for my mother is very likely to happen soon. That’s why they call it a “revolving door” of care. It should be called “miscare.”
2 thoughts on “Me vs. The Hospital: The Blatant Medical Neglect of My Mom”
I could barely read this whole post because it triggered so many traumatic memories of trying to get my aging mother (who suffers from untreated schizophrenia) appropriate hospital care in both civilian and veteran hospitals. My mother’s name is Genevieve.
When she started having a heart attack I had to call emergency workers without her knowledge, but did manage to get her to surgery for that one.
Mom, like your mother, would express that what was happening wasn’t really happening to her or things like it wasn’t really a heart attack, but that I had poisoned her with “tainted chicken”.
She would oscillate between telling me the doctors and nurses were conspiring against her or telling them tales of how I “abused”. “stole from” or “neglected” her at home – and that I was the one who suffered from “depression” my whole life. I didn’t even have a POA or MPOA at that time or know about how Mom had been giving all her money away to scam artists while not paying bills and taxes.
So who did the medical staff ultimately believe?
The accomplished, loving, well respected caregiver, mental health care advocate daughter, who saved her mother’s life several times (even though her mother assaulted her as a child) a business owner that, by the way, has assisted top level criminal investigators?
No, they believed the genius schizophrenic,time and time again, because she splits to portray a sweet little old lady.
Or at least that’s what I thought back then.
But in retrospect I realize that at least the doctors had to realize she had the symptoms of schizophrenia, but since the laws are designed to protect the rights of the delusional to remain delusional, their goal is to avoid trouble for themselves and the hospital. It actually works to their financial and legal benefit to play along with mental delusions against family members and caregivers. One time at a VA my brother took her to I followed with a stack of medical collateral witness statements written by close family members, including her elderly sister. The doctor actually gave those statements right back to the patient! Two weeks later my mother assaulted her sister in an attack that could have very easily have resulted in my aunt’s death.
Mike, my prayers are with you, your mother and your family. I do not know the details of your case but feel compelled to advise to remember put your own family first, and by that I mean yourself, spouse if you have one and your own children. There can be so much secondary trauma and fall out from dealing with an elderly SMI parent, and you do not want it to effect the next generation, especially if they are vulnerable to stress themselves. If you can get Mom into a psychiatric nursing home, do it now. There is really nothing to help the elderly SMI and that’s why so many of them wind up on the streets or dead.
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Thanks for the thoughts/comments. At this point, two more hospitalizations later (There would be even more, but I keep her out by taking care of her.), I think it’s a combination of hospital policy/procedures, staffing levels and medical culture and ignorance about SMI. They’re not really trained to deal with it or identify it. They don’t have the time to deal cause of all the patients they have. They don’t care and rather risk the lawsuit of letting someone leave against hospital advice or discharging them early. It’s so bad they they don’t even want to do a simple psychiatric assessment, even though they have the ability. I have no sympathy for hospitals. They are complicit too.