My Journey: Reading Psychiatric Records

The_little_didgee · Feb 12, 2022, 05:37 PM

The Dx List:
Complex PTSD
PTSD
Bipolar Affective Disorder II
Cyclothymia
Adjustment Disorder
BPD
Depression NOS
Schizoaffective Disorder
Psychotic Disorder NOS
Possible Anxiety Disorder
R/O Panic Disorder
Polysubstance Abuse
Anorexia Nervosa, restricting type
Dysthymia
(I think I got them all)

This list suggests something was very wrong with my care.

The_little_didgee · Feb 12, 2022, 05:43 PM

My traumatizing ordeal is not the fault of one person but the way the service is structured along with a lack of critical thinking, patient advocation, and thorough assessment. My story is an example of iatrogenic harm and florid cognitive bias perpetuated by nearly all clinicians who interacted with me.

Did this really have to happen? Was it necessary? Could it have been prevented?

--- I was lucky unlike a lot of people. I didn't die due to medical error.

The_little_didgee · Feb 12, 2022, 06:20 PM

This is the last entry in the case chronology that severed the ties with the 4North OPD clinic:

The nameless clinician wrote on November 29, 1999:

I left a message for Didgee to change the day of her appointment. She called back and said that she wanted to talk if I could spend some time on the phone with her. – She said it had nothing to do with me, she really appreciates the help she received from me but has to leave the system, it will be better for her. She feels that having a psychiatric diagnosis penalized her in life in general, maintains she was misdiagnosed and wants the diagnosis removed from her file, etc. She apparently is having problems; went to ER where she felt she wasn’t treated right because of her diagnosis.

She wished me a good Christmas. Because she decided it was better for her to be out of the “system”. She has been trying to do things to help herself the best she could. She feels that the diagnosis will stop her from doing what she wants in life. i.e. choosing a career etc.

----

I wasted 5 years of my life. My 20s were nearly wasted due to crippling psychiatric trauma. I became a recluse and avoided doctors as much as possible. I was profoundly affected by this experience.

The_little_didgee · May 14, 2022, 02:16 PM

Last week I sent an email to the health records department at the General. In the email I didn't hold back my feelings. Somehow I was able to remain pleasant and respectful even though I was irate. A supervisor replied and answered most of my questions and offered two solutions to correct the racist and stereotyped notes in some of the discharge summaries that are available on Epic.

Here in Ontario a doctor is required to keep records for 10 years after they close their practice. Hospitals don't appear to have a time limit. The supervisor wasn't able to tell me how long the hospital is required to keep records. He did tell me that destruction was possible for my paper records from 1996 to 1999. He promised me he would not scan and upload them to Epic if he can authorize their destruction.

Wow if the records could be destroyed that would help me recover from the trauma caused by 4North and the Emergency Department..... but can I trust them?

The_little_didgee · May 14, 2022, 02:31 PM

I'm after one more thing; the diagnoses on the encounters list in Epic that any clinician can see if I authorize them to "Break the Glass" or access my records. They are only listed for emergency department visits. I want them removed since I have a privacy directive.

The_little_didgee · 08:24 PM

I sent an email to TOH's Patient Advocacy service. This is an excerpt.

This is an old story just before The Ottawa Hospital came into existence. It’s a story that takes place at the Civic and the General.

The hospital is a dangerous place behind its facade. Iatrogenic harm seeps out of its foundation and into its walls. It’s everywhere waiting to strike an unsuspecting patient via the staff who unknowingly transmit the pathogen. A patient gets infected in many ways such as procedures, IVs, medication errors, and misdiagnosis. Some die, others are temporarily affected and a large portion suffer for years at the hands of their treatment team, the ones who are supposed to heal them.

Imagine being an 18 year old female with undiagnosed autism spectrum disorder and a moderate to severe anxiety disorder that is not recognized by anyone, who has passed through the threshold of the General’s emergency department entrance. It’s her entry into hell. All the on-call psychiatrists see is the adverse reaction to a SSRI that she started 10 days previously. It suddenly caused suicidal ideation and impulsivity. The rigid and obsessive thinking and a delay in social development along with the SSRI reaction make it appear that the patient has a personality disorder, specifically Borderline – a diagnosis that is known to ostracize people and deny them treatment. After one clinician labels the patient it sticks. After that most cannot see past it and the patient is condemned.

A few months later polypharmacy is ravaging her body. She can hardly eat, is drowsy due to all the pills, is profoundly disinhibited, is hallucinating like she’s stuck in perpetual stage one sleep, is confused and disoriented, and has trouble forming memories. She is missing time and is a poor historian. Apparently she fabricated the whole entire incident. Dr. (name withheld) wrote in his discharge summary: In Emergency, it seemed that her behavior was kind of weird and there was possibly some mild disorientation at times that readily disappeared when she was proposed hospitalization and the patient and the doctor finally agreed on 1-3 day admission. – A resident noted it was either the 5mg of Haldol that they gave her or the offer of hospitalization that stopped the bizarre behaviour.

A week later she ended up at the Civic Hospital and has no recollection of it. There like at the General, her bizarre behaviour was noticed. Possible anticholinergic syndrome? Her symptoms seem to resemble it. Dilated pupils, confusion, low glucose, tremor, visual hallucinations, elevated anion gap, dehydration and a bunch of abnormal ECGs were not enough to make the psychiatry resident question his diagnosis and harsh judgement of her. Dr. (name withheld) wrote: pt states having auditory command suicidal ideation, but we are very uncertain about the authenticity of those voices. His notes are filled with opinion rather than observation. Even Dr. (name withheld) thought she was malingering.

She has no recollection of any of this. How could she have been faking? Friend and neighbours noticed her bizarre behaviour and at times incoherent speech. Even a security guard at a government office on Booth Street and Carling Avenue did when she tried to enter the building in her dishevelled and confused state.

No, she wasn't faking it. She was delirious and no one saw it except for the emergency physicians who failed to question the psychiatrists. They went along with the BPD diagnosis and interpreted the behavior as manipulative to gain hospitalization.

The_little_didgee · Jul 03, 2022, 06:05 PM

This is the pharmacy she was taking and without question during that time:

Perphenazine 2 mg t.i.d. and 8 mg h.s.
Prozac 60 mg q.a.m.
Trazadone 150 mg h.s.
Cogentin 2 mg b.i.d. p.r.n

This is a lot for a 100 lb small framed lady. Why was she on this? It all started with Paxil. Side effects were misinterpreted as symptoms of BPD.

The prescribing cascade, misdiagnosis and cognitive biases contributed to iatrogenic harm.

Some individuals are vulnerable to medication side effects. It's probably genetic and has to do with how they are metabolized by the body.

If hallucinations, impulsivity, and suicidal ideation manifest themselves shortly after a medication is started, it is most likely due to that.

I had psychosis in my mid twenties that developed spontaneously. It was very different than the hallucinations I experienced from medication and delirium.

The_little_didgee · 07:44 PM

I had delirium. There is no doubt. It fits my experience and what people observed when they saw me in that state.

This info is from The Mayo Clinic:

Signs and symptoms of delirium usually begin over a few hours or a few days. They often fluctuate throughout the day, and there may be periods of no symptoms. Symptoms tend to be worse during the night when it's dark and things look less familiar.

It was sudden and started with the inability to form memories. I vaguely remember walking to a house to watch a sporting event. I don't remember the afternoon.

I stayed at a friend's house that night and tried to leave in the middle of the night in a confused state. Apparently I couldn't dress myself. After that day my memories are fragmented. Lots of time is missing, which is something I never ever experienced before. Weeks of my life are missing.

My behaviour became very bizarre. People who knew me believed I was acutely ill with some unknown illness. The doctors refused to consider that I had a genuine illness. I did things so out of character, but because I was misdiagnosed they blamed it on BPD and didn't treat me. They actually suspected and accused me of abusing drugs because my symptoms were puzzling. I couldn't even give a reliable history, something they recognized but didn't bother to obtain from other sources.

They misinterpreted everything.

Some of the delirium symptoms made me appear spaced out. So I was accused of dissociating which they said was due to my history of abuse. That was false.

My records suggest that I had mixed delirium. Hospital staff noted the disorientation and irritability. I became very uncooperative at times and even signed out AMA from the Civic's psych unit. I have no memory of this.

Types of delirium:

Hyperactive delirium. Probably the most easily recognized type, this may include restlessness (for example, pacing), agitation, rapid mood changes or hallucinations, and refusal to cooperate with care.
Hypoactive delirium. This may include inactivity or reduced motor activity, sluggishness, abnormal drowsiness, or seeming to be in a daze.
Mixed delirium. This includes both hyperactive and hypoactive signs and symptoms. The person may quickly switch back and forth from hyperactive to hypoactive states.

What is really interesting about delirium is there can be periods of normalcy. My records reveal this.

May and June of 1996 are a blur. Things started to improve in July when my then new psychiatrist took me off almost all the medications.

I wish someone could have recognized what was really going on. The emergency doctors at both hospitals were puzzled but didn't bother to pursue it after the psychiatrists told them it was due to BPD even though there was plenty of physical evidence to contradict that diagnosis. So many of the notes contain question marks and wonder about what is going on. No one bothered. Apparently I wasn't worth the effort.

Stopping all the medication was what I needed.

The_little_didgee · Jul 03, 2022, 07:57 PM

On May 5th, 1996 an incident happened that haunts me to this day. It was very out of character. Now I understand why it happened. It was beyond my control. My judgement was impaired. Unfortunately it wasn't recognized at the time.

This incident occurred at the General's emergency department. I exploded and while trying to flee, I was accused of assaulting a nurse. They called an orderly code, put me in 6 point restraints and gave me an injection of CPZ. An Ottawa Police officer came and interviewed me and decided not to charge me. I never ever tried to assault a nurse when I tried to flee. I just wanted to leave.

I got a precaution code tagged on my chart for that incident.

This incident always bothered me. I'm not the type to hurt people. Now I know that I was not in a coherent state of mind and had impaired judgement. I can finally forgive myself.

The_little_didgee · Jul 03, 2022, 09:03 PM

Quote:

Originally Posted by SlumberKitty

Thank you for this thread @The_little_didgee There are things in my hospital records that are wrong. Namely that I was suicidal when I wasn't which led to me being 5150'ed (or kept for 72 hours involuntarily and then switched to voluntary which I didn't want to sign but it was better than being involuntary so I signed it). One of my T's said I could go and correct the hospital records but it's at two hospitals and it seems overwhelming. I don't even know where to start. I don't know what else is wrong that is in them but that is what I know for sure is wrong. I did write a letter of compliant to the hospital but I don't think it did any good. I'm scared of going to the hospital to this day though. I'm sorry you went through these experiences. HUGS Kit

There are a lot of examples of misinterpretation in my records. It appears to be common.

I was accused of being suicidal on May 17th 1996 while at the Civic even though I wasn't. A fainting spell sent me there. That only surfaced after they spoke to a psychiatrist from the General. Questioning me probably contributed. At the time I was in a bad state of delirium that they failed to recognize. Many different staff members noticed and mentioned that they were unable to get a history due to my mental state and that info I provided was questionable.

Reading records is worth it but you have to be prepared. There is a lot written in them that is not communicated to the patient. E.g., apparent malingering. No one ever discussed that with me.

Having a clinician assist you will be very helpful. That person can explain the notes. My psychiatrist helped me with this.

I have noticed that really good clinicians will wrote comprehensive notes, and leave out personal opinion or character attacks. If a note is consistent with an encounter that highly suggests the clinician is somewhat honest and interested. A good clinician will show their notes to a patient when asked.

Reading my records made me realize that not all doctors can be trusted. Ones who lack self-awareness and the inability to reflect are dangerous.

Everyone should read their records.

P.S. Here in Ontario a Form 1 is equivalent to a 5150.

The_little_didgee · Jul 07, 2022, 12:24 AM

They replied:

Dear Didgee,

Thank you for contacting the Department of Patient Relations at The Ottawa Hospital to share your experience and provide constructive feedback on how we can improve patient services. I am very sorry to hear of your medical experiences. I would like to assure you that your email will be forwarded to the appropriate departmental stakeholders for review and consideration, so that they may learn from your feedback.

Thank you again for taking the time to share your experience with us.

I wonder if they will do it? Will it get lost? This hospital is really bad a communicating. It gives the impression the patient doesn't matter.

The_little_didgee · Jul 14, 2022, 11:11 AM

They sent an email to notify me that my paper chart will be will be destroyed within the next 24 months. They also told me they would not scan and upload it to Epic.

The amount of data this hospital collects and retains is incredible. If I had known this I would never have used their services. There is really nothing confidential about it at all.

The_little_didgee · Nov 26, 2022, 02:33 PM

Yesterday I met with an advocate from an Indigenous organization to discuss my traumatic dealings with the General Hospital. The psych service now called Mental Health diagnosed me based on the side effects of medications and misdiagnosed delirium due to polypharmacy because certain staff psychiatrists didn't recognize their cognitive biases and stereotyping. Note that it was easier to destroy me than try to figure out what was going on.

I laughed when the lady asked me what floor I was on. When I blurted out 4 North, she knew exactly what I was in the hospital for before I even told her.

The plan is to write the corrections request letter for all my discharge summaries first. There is a lot of inaccurate information contained in these documents. They wrote my father was an an alcoholic who sexually and physically abused me. He did not.

We also discussed the possibility of contacting a lawyer. I'm not interested in suing for malpractice at this point even though I may have a case for the drug induced delirium I had. I also told her I want to submit a complaint to the Ontario Privacy Commissioner's office about the hospital's encounters list on EPIC and OACIS. Some visits list psychiatric diagnoses entered by emergency medicine physicians without me seeing the psych service which was usually a resident.

I have a consent directive on my records that is supposed to protect me and my privacy. It is useless with the encounters list because it contains psych diagnoses made by emergency physicians. -- This list was used by a nurse to gather information and a misdiagnosis since nothing else was available to him.

For the curious: Consent Directives - The Ottawa Hospital

Something positive in going to come out of this. I can feel it. I'm not the only Indigenous person mistreated by this hospital. There are a lot of us. We are going to bring it to their attention.

The_little_didgee · Nov 26, 2022, 02:44 PM

This is what I want:

The opportunity to lecture medical students and residents on cognitive bias and it's consequences.

All the psychiatric diagnoses wiped off the encounters list.

My discharge summaries corrected. E.g., the reference of my Cree father being an alcoholic and abuser.

An apology and a letter stating what happened uploaded to my mental health section of my record.

The_little_didgee · 05:22 AM

"I was sorry to read of your experience with systemic racism within our organization, and we would be happy to assist in reviewing and removing any such documentation contained within your records."

Really?

splitimage · Jan 08, 2023, 10:46 AM

As a fellow Canadian, I am absolutely appalled at how you were treated. I wish I could say I was surprised but I wasn't.

One only has to read the newspapers to know that systemic anti-Indigenous racism is still alive and well in the medical system at least in Quebec and Ontario and I suspect other provinces as well

I really hope you achieve your goal of being able to speak to medical students and residents to educate them.

The_little_didgee · Jan 15, 2023, 06:26 PM

Thanks Splitimage.

There are a lot of stories that don't even make the news.

Most Canadians don't know much about Indigenous people. If they did, they would realize only a minority conform to the stereotype.

Healthcare in my experience seems to be filled with a lot of entitled and judgemental people. We put the helping professions on a pedestal. Why??? They are highly and narrowly trained individuals who are vulnerable to bias just like the rest of us. They really don't deserve the power and prestige society has given them. -- The banging of pots and pans angered me back in 2020.

Emergency staff are in my opinion seem the worst offenders followed by psychiatric staff and social workers.

The_little_didgee · 07:43 PM

I read more records last night. The reading made me realize there was profound misunderstanding on both sides (misdiagnosis and suspicion) and lack of communication. There was no way an alliance could form under those conditions.

Psychiatric Emergency Service at the Ottawa General (This service is to be avoided):

"Patient is guarded with her history."

Later entry:

"Patient left hospital; refused follow-up."

I wonder why? If they took the time to investigate further and actually listen I would have been more compliant.

The consultation was done with a PGY-4 psych resident. Notes from this consultation:

Past psych history - see chart. No contact since around 2 years.

Impression: 23 year old female with difficulties coping and complains of ??? consistent with major depressive episode with panic attacks.

......

Unfortunately patient does not appear ready to accept help. When help was offered (e.g. acute day hospital) she rejects it. Appears to be an ongoing problem. ..... patient states we don't understand her problem. When challenged with our offers of help she decides not to talk further about the issue.

Patient would likely benefit from SSRIs for major depressive episode and panic attacks, but compliance with meds has been a problem in the past and starting it from the emergency without having agreed to followup would risk ??? and misuse of meds. Also SSRIs may initially worsen panic attacks. Therefore meds need to be started by someone who can followup.

.....

Forcing treatment would not work and may reinforce non-cooperative stance with treatment. Unless patient agrees to help offered, prognosis is poor.

Patient left unannounced.

-- This visit was in spring 2001. It was one of my last encounters with this service. The resident's note did not contain any personal attacks at all. It was written in a way that the patient might actually read it someday.

No one was listening to me. All they were doing was judging my character, assigning motives I did not have, and telling me conflicting things. No one was consistent with me. Nothing was ever explained. I really had no say in anything.

Doctors shouldn't tell their patients they can't do anything for them then offer referrals in the specialty and medication. It's so confusing.

The_little_didgee · Jan 20, 2023, 08:15 PM

The hospital's privacy officer has made some progress with the encounter's list. The health records department is looking into getting all the diagnoses removed off that alienating list. Apparently they have to get the "vendor" to edit the content, since they don't have permission. If the vendor cannot remove the data, the hospital is going to add a second privacy directive to each date, so no one can see the content before 2004, the year when they stopped including diagnoses on that list.

I would prefer the data be removed, but I will accept the second option if that cannot be done. It's a compromise. Plus the privacy officer took the time to explain it all. That is something I really appreciated.

A little explanation from psychiatry was all I wanted all those years ago. They just made decisions and refused to work with me.

The_little_didgee · May 06, 2023, 12:01 AM

Apparently delirium in an 18 year old can't be possible even if on an extensive list of psych medications, most at maximum doses. This is according to psychiatrists. The emergency physician believes it, well sort of, but goes on with it. Three weeks later the same patient presents to emergency where the first doctor believes the patient overdosed on some unknown substance. She notes the confusion, delirium, hallucinations, dilated pupils, low blood pressure, bradycardia and abnormal labs. The drug screen returns normal. Four hours in, shift change occurs. A new ER report is printed for the new doctor. He notices the symptoms suggest anticholinergic syndrome (He turned out to be correct). Throughout this visit, the patient denied feeling suicidal until the General Hospital was contacted. They spoke to M.E.J, a psychiatrist with an attitude problem. After that the patient was just a manipulator.

What amazes me is how psychiatry failed to see this? How could they ignore evidence and call it dissociation and malingering? There was plenty of it from observation and labs. How ****ing stupid can one be????

All they had to do was admit the patient for observation, and discontinue all the psychiatric medications.

The_little_didgee · May 06, 2023, 01:32 AM

Stop iatrogenesis - My entire psychiatric history at the Ottawa General Hospital is all due to this. I was a fabricated psych patient. It all started 10 days after a Paxil prescription and a pair of cold sores.

Note to D/C deliriogenic medications.

DO NOT treat agitated delirium with a benzodiazepine. This will suppress symptoms temporarily, but will eventually make the delirium worse.

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