Nightmare at the Psych ER
My child needed help. With few options and rigid rules, getting it was a five-day ordeal.
by Valerie Mates
From the January, 2021 issue
I lived through a nightmare at the U-M Psychiatric Emergency Room. The pandemic made it worse, but didn't cause it. It happens to families there all the time.
My twelve-year-old son is aggressive. We're not sure if it's because he has a rare form of epilepsy, or because of the medications he takes to control it, but in October he was attacking family members ten to twenty times a day. So I brought him to the psych ER and asked for him to be admitted for help getting his behavior under control.
They took my son to a room in back and told me to wait in the waiting room. Parents could not visit their children, I was told, to protect the privacy of the other patients. But as long as he was in the ER, I was still legally responsible for him--so I couldn't leave the hospital building for more than two hours at a time.
I spent the next five days and nights waiting at the hospital. The psych ER's waiting room was usually too crowded to do social distancing, the soap dispenser had been removed from the bathroom, and sleep was nearly impossible.
A hospital social worker told me that other people could sleep in the waiting room and I could do it, too. But I've never been able to sleep in public places--not in planes, on buses, or in waiting rooms.
Since I wasn't allowed to see my son and I am easy to reach, each night I would slip out of the waiting room, go home, and try to sleep in my own bed. And every night, at two or three in the morning, I would get a phone call demanding that I return to the waiting room. If I didn't come back right away, they said, they would call Child Protective Services.
I never got more than about three hours of sleep a night while my son was in the psych ER.
Once, when I came back after being called, I tried sitting near the hospital's front desk, where the staff had told me that it would be easier to sleep. But it wasn't. The room was fully lit, people were talking, and at 4 a.m. a loud floor-washing Zamboni drove through.
I don't think anybody ever intended for patients to spend five days in the psych ER waiting room. But, while the doctors agreed that my son needed to be hospitalized, no beds were available anyplace in the state.
This was not due to Covid. Long before the pandemic, Michigan had far more psychiatric patients who needed to be hospitalized than places to treat them, resulting in long waits for care.
According to an Mlive.com article last year, since the early 1990s the number of psychiatric beds in Michigan has fallen by more than half, to just 3,200. The head of the state's largest private provider explained that insurance pays a third as much for psychiatric hospitalization as it does for medical care, making it a "black hole into which you dump money."
The U-M has just three psychiatric beds for complicated adolescents like my son, and they were full. The most likely alternatives were located up to an hour away, and they were full, too. I was told that if a bed did become available there, my son would be transported in an ambulance, but I would need to follow in my car, check him into the new institution, and then drive another hour back home again--all while sleep-deprived.
Between the risks of Covid infection and falling asleep at the wheel, it felt like the rules were designed to kill parents, several times over.
Eventually, a space opened up in a U-M psychiatric ward and my son was admitted--he did not end up an hour away, after all. Once he was hospitalized, other patients' privacy was no longer an issue: I was able to visit him--and to sleep at home at night.
There is nothing unusual about the hurdles we jumped to get him there. Other parents have told me that they, too, have waited days before their child was admitted.
Unfortunately, not all families have the resources to do that. If family members cannot take time off work--or have other children at home, or have medical problems of their own--that child may never get care.
I know, because this was not the first time I'd tried to have my son admitted. The last time, several years ago, my other children were too young to be left alone at home. Unable to wait for a week in the ER, I gave up and brought my son home without getting the help that he needed. We continued to live with his violence for years.
Having to spend days in the waiting room is one way to limit the demand for psychiatric hospitalization. But it doesn't give priority to the children who need help the most--it gives priority to those whose parents are able to rearrange their lives to have someone on hand 24/7. This is not a reasonable way to ration health care!
Once he was admitted, my son was hospitalized for two weeks. They changed his medication, and for the moment his aggressive behavior is much less frequent. But he acclimates to some medications and they stop working, and he has had life-threatening reactions to others, so the current peace is not likely to last.
I worry that someday we will need to go back to the psych ER. And I dread that.
I filed a complaint with the hospital. My son's pediatrician also tried to get them to change their policies, so far without success. I wrote this article because I hope public attention will help.
Nobody should have to camp out for days to get a child the care they need. Parents need to be able to eat and sleep so that they can support their children.
The hospital needs a fairer way to ration psychiatric care--one that doesn't limit it to families that are privileged enough to be able to take extended time off. And the state needs more psychiatric facilities, so that in the future parents won't have to spend days and nights in waiting rooms, trying to sleep in chairs.
from Calls & Letters, February 2021
To the Observer:
Your January article about the U-M Psych Emergency covered the patient's side of the situation well, but did you interview the nurses involved? These patient people often go home battered both mentally and, yes, physically, too. In this case (and others) there are details left dangling that would more accurately characterize an essential clinic.
As for finding ideal spots to place less than ideal patients, it's well-know that with the closing of the once-busy Ypsi State, Eloise, and others, the task must be incredible.
[Originally published in January, 2021.]
On December 22, 2020, Lynn Marie wrote:
My family lived through this nightmare and we lost our son/nephew shortly after his 16th birthday to suicide. I sent a picture of him with an explanation of what it is like to sit in the waiting room for 12-16 hours and finally give up and go home. The head of the psych unit UM never responded. I am sorry.
On December 22, 2020, Valerie Mates wrote:
Oh Lynn -- I am so sorry! That is beyond a nightmare.
On December 22, 2020, Rob wrote:
Thank-you for this article, it has confirmed our suspicion that we are not alone. We went through a very similar experience on two separate occasions last month, November 2020. It remains difficult for us to resolve in our mind how our child, who was sick and suffering, could not get the care he needed at the University of Michigan. We know this would not have been the case if he had broken his leg or suffered some other physical injury. So why was it somehow ok when he was suffering a mental health crisis? The experience of sitting in a waiting room for days with no treatment in fact exacerbated his crisis and in turn made it even more difficult to find a placement for him. We were caught in a vicious cycle.
Oddly, our experience did not seem out of the ordinary in this place, it seemed almost part of the routine that patients and their families were expected to camp out in a small waiting room for days, with no promise of help and also no accommodation for separation during a pandemic. With the exception of a whispered comment from a nurse, no one would acknowledge that something was wrong, that the system was broken. We were all watching a child suffer without any outlook for treatment or relief. A child that is covered by two insurance companies.
On both occasions we waited days until we ultimately made the decision to leave the Psych. ER. Why would we not? He was not receiving care and we had no promise it was imminent. Unbelievably, at one point we were threatened with a call to CPS if we left the hospital with our son. He is now receiving the treatment he deserves out of state.
On December 23, 2020, Laurel wrote:
This same experience could happen in any medical ER and has. This article and these comments make it seem like these STATE AND NATIONWIDE (not specific hospitals) issues are due to callous providers (not denying those are out there but you don't wait in an ER for 5 days because that psychiatrist is out to get you). Treatment in a psychiatric ER is to keep a person safe until they either are stable and safe to go home or until the appropriate treatment becomes available. Instead of complaining about people who do care and advocate to help you, why don't you join these providers and advocate to your government on your child's behalf?
On December 27, 2020, Valerie Mates wrote:
Laurel - I agree: Advocating for change is exactly what I hope to do!
On December 28, 2020, Sk wrote:
Thank you. This is a systems issue of resources not being devoted to addressing the psychiatric crisis occurring on a state and national level. Why is it so hard to find community providers? Why do so many providers and facilities simply choose to not treat children with ASD or developmental disabilities. Call your senator, congressman, local rep, and think of who you vote for in the next election bc giving you a bed in the psych ER isn't going to fix the problem.
On December 30, 2020, Nicholas K wrote:
I also had a nightmare stay last year U-M psych ER.
I had been unable to sleep for days and had been hallucinating; and this was a recurring problem. I had suicidal ideation. I made the mistake of telling the nurse that at the front desk.
They immediately took me into a secured room, took my belongings, and put a tracking brace on my wrist. Done.
Then... three days in a non-carpeted, barely furnished waiting room. Unable to leave with cops at the door. No access to medical personnel.
Worst yet: no sleep. I came for sleeping trouble. That ER only made it worse.
When I finally met the head psych, I persuaded him that staying any longer would leave him with a "different" patient. One that would leave far worse than at arrival.
I stated to both the psych and the nurses that they are struggling due to underfunding and understaffing. They can't help but a minority of patients. That it's ugly in there.
The psych and nurses nodded. This is why America is suffering a pandemic of "Deaths of Despair."
There's no help because the country just doesn't value mental health just yett.
On December 31, 2020, Caroline Mohai wrote:
Maybe a picket line outside the Rachel Upjohn building at the East A2 facility would bring this issue to a head? You need the press to put pressure on the legislature and the U-M.
On January 3, 2021, JoAnn Barrett wrote:
What happens to children in psych emergency is beyond tragic and has been going on for years. This experience is not the exception, but common. Waits can be as long as 10 days, in the same waiting room with adults needing psychiatric care. Families camp out in chairs. What about this little boy, confined to a room for 5 days, all by himself, without access to his mother? These children need an emergency room where they are nurtured as they are at Motts emergency. Beyond the emergency room situation is a lack of beds. I hope we are moving away from the stigma of mental illness, and raise money to treat these children with the tenderness and compassion they deserve. UM needs to think large and create a funding campaign to build a facility for the psychiatric care of children.
On March 22, 2021, Valerie Mates wrote:
The state settled a lawsuit, agreeing to do better at meeting children's mental health care needs. This is good news!
On March 30, 2021, Valerie Mates wrote:
Oh holy cow: This family waited for 26 days with their child for psychiatric treatment at an emergency room. After 26 days they gave up and took him home, untreated, because waiting was adding to his trauma:
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