I’ve found that during my psychiatric hospitalizations working to maintain my confidentiality has been an issue.
I’ve never been hospitalized for non-psychiatric reasons, so I don’t have a perfect comparison. From observing while visiting family in the hospital I can tell that any hospitalization seems to result in some level of decreased confidentiality. When there’s a shared room it’s near impossible to keep everything private. You might not know details, but there is often at least a vague sense of what your roommate’s problem is. Family members who visit, often speak with the doctor without the presence of the patient, creating a risk that information will be communicated that the patient might have not wanted shared.
At my first hospitalization there was some posturing about confidentiality. Cameras including camera phones were banned and the lack of names on doors was emphasized.
I had a terrifying experience of 24 hours in the ER and was refusing to sign the form to be admitted. I wanted to go to a different hospital, but they wouldn’t let me. I asked if I could maybe see the unit first to see that it wasn’t scary. I was told I couldn’t have a tour because of confidentiality issues. This seemed reasonable. Eventually I gave in a signed the form.
A couple of years later I heard from a friend who was considering going inpatient at a different hospital for medication adjustments. He had been given a tour of the unit he would stay on before making his decision. So it appears this rule is not consistent between hospitals.
It seems the most significant confidentiality difference between general medical hospitalizations and psychiatric ones is that for psychiatric admissions patients are specifically encouraged to interact.
In fact, not interacting with other patients will likely be looked upon as a symptom.
Rather than staying in your room in bed all day there are common areas and group activities.
It might seem like that activity group is purely recreational, designed to break up an otherwise empty day. Wrong! In all of my records there are notes of my behavior during those types of activities.
One form for an arts activity group says simply that I attended and comments, “Very quiet- worked with no discussion with peers”. Never mind that I was focused and enjoying that I was doing. All that mattered as a record for that hour was my silence.
The problem of communicating with other patients is that all of a sudden your hospitalization is no longer just a relationship between you and medical professionals, now others are added into the mix. These others have no ethical responsibility to uphold confidentiality.
I know that sometimes outpatient group therapy groups discuss that what is said there should stay confidential, but I’ve never heard any sort of similar comment discussed in an inpatient setting.
Despite this, I have found the unstructured social time of inpatient settings to be one of the few helpful things I have gotten out of my hospitalizations.
I’m so secretive in general that it’s nice to be able to talk without the fear that I will be judged for my ‘crazy’.
But information besides what I choose to disclose also gets revealed. If I was in my room crying all morning, people know. There’s no hiding it. If I go back to one-on-one security, people know my suicide risk was deemed increased.
Sometimes check-in meetings with psychiatrists were conducted in the hallways where anyone could hear. I’d whisper everything and usually reveal less information as a result.
This makes visitors a very anxiety provoking experience. On the one hand it’s nice to get a visitor, on the other hand those visitors are generally my parents. I don’t tell my parents much of anything. They receive the most vague information possible. I worry about another patient blurting out something private about me in their presence.
At the first hospitalization visitors were let onto the unit and were allowed to all the same places I had access to. So much for that “No Tours” rule.
There was no private place to meet. They could go in my room, but I also had a roommate. I was on edge during all the visits, trying to steer them away from anyone I’d communicated with.
The second and third hospitalizations had rooms where visitors and patients could meet for more privacy. The second still allowed family access to the rest of the unit thus compromising confidentiality of anyone there. What if a visitor ran into someone they knew there besides the one they’d come to see? In a general medical hospitalization the chances of noticing someone you know are much less likely unless you were peeking your head into each room.
The third hospitalization restricted visitors movement more, only allowing them in that one room.
Some point in the middle of my first hospitalization my doctor asked me to list the top things bothering me at the moment. One of the top items on this list was the distress my hair pulling was causing me. I later learned that this had been relayed to my Dad. He didn’t understand why I was stressed about my hair (the part about pulling it out got lost it appears). I can’t imagine how that doctor believed that it was appropriate to share this information with my Dad. I was so visibly upset upon learning this that I worry my Dad held back telling me more he might know to keep me from getting further upset. I have no idea if he was told more.
I believe him when he says that he didn’t try to get information out of the doctor and that this was shared more spontaneously. The hospital only had my permission to talk about about logistics (such as arranging affordable outpatient care) with my Dad but still information gets shared that shouldn’t once a line of communication is opened.
My Mom is banned from speaking to any mental health professional of mine, because she tries to manipulate people into giving her information.
I banned her from visiting at all during my second hospitalization and unfortunately it wasn’t very effective because they kept allowing her on until I started to scream that she wasn’t allowed there.
Family meetings seem to be encouraged, again creating the risk that something will be said that I wanted private.
My third hospitalization was the worst with regards to confidentiality. The central issue became my efforts to protect my privacy.
First they told me they were going to contact my school to let them know I was there. I strongly refused.
Anyone who’s been reading this blog regularly knows that letting my school know about my psychological issues is a touchy subject.
‘But it’s our policy’, they said. ‘We have an agreement with the local schools’
I called my lawyer and they called theirs.
After creating a huge amount of panic and stress for me they backed down realizing they had no leg to stand on.
While this was still being sorted out I noticed some student nurses were visiting the unit. I spotted a name tag. My college’s name was on it.
I fled the room. Had they seen me, had anyone recognized me?
Student nurses from my school came twice a week. No one had thought to mention this to me.
It happened too fast for me to spot any faces. Did I know any of them?
I spent the morning hiding in my room.
“Isn’t their being here putting my confidentiality at risk? I don’t want them to know I’m here. Can’t they leave?”
I go to a small school. People know each other.
No one seemed concerned.
I spoke to the apathetic Human Rights Officer.
I wasn’t allowed to ban them from the unit, but I could ban them from any activities I wanted to attend.
But I couldn’t attend the activities, I couldn’t walk down the hallway to get to the activities room without risking being seen.
The only way to prevent them from knowing I was there was to hide while they were on the unit.
When got out of the hospital I sent an anonymous email to the heads of the nursing department to let them know what had happened.
Here’s the email I sent:
“I am writing to inform you about an issue I had recently relating to the *college* nursing department. I do not believe that anyone at *college* was at fault in this problem, but I hope that by bringing this to your attention perhaps something can be done to fix it.
I am a student at *college* and I was recently a patient on the inpatient psychiatric unit at *hospital*.
My confidentiality is very important to me, as I have previously had my confidentiality broken and suffered discrimination as a result of this. I understand that not everyone will react the same way others have, but because of these problems, keeping my psychological issues separate from my education is very important to me.
One day while on the unit I spotted someone wearing an ID saying ‘*college*’. I bolted from the room to speak with a staff member and learned that a number of nursing students from *college* would be there that morning. The staff knew where I go to school, no one thought to warn me of their arrival. I didn’t want to be seen by them. The staff informed me that they couldn’t be kicked off the unit or restricted to a less central location and that my only option was to hide in my room(or the isolation room) all morning. So I was stuck doing that. The stress of hiding there and the isolation it involved were not things I needed piled on top of the reasons why I was already a patient there.
The staff I spoke with (including the human rights officer) were fairly apathetic towards this problem, citing that they have an agreement with the school to allow the students on the unit. I argued that allowing peers of mine to see that I am there is a breach of my confidentiality because them seeing me there involves receiving information that I don’t want disclosed.
I understand that the students themselves are sworn to confidentiality. (Though from my experience when people break confidentiality it is hard to prove and they end up getting away with it), Were I to run into one of these students in a social or academic situation at *college* the interaction would be colored by their knowledge, knowledge that I didn’t want them to have in the first place.
I feel that as a patient my needs, particularly my rights to privacy, should be taking priority over the educational needs of the nursing students, because there is the option for the school to find an alternate assignment for the students in this sort of situation, but I don’t have the option of being in an alternate psych ward for the morning.
I can’t imagine that I’m the first person to run into this problem. And I understand that having the students not be there when someone from their school is a patient there who objects may not be a reasonable option.
I understand that the teaching hospital is a very successful concept, but that doesn’t mean it can not be improved. The current way that it is being implemented at *hospital* is taking too casual of an attitude towards privacy. I do not know if this experience is representative of other hospitals.
At the very least, if you could help me out by giving me a list of all hospitals where *college* students are on the psychiatric units, I would appreciate it. So I can know to avoid them. Because at this point I feel that if I am in need of inpatient psych care I am unable to get it because I fear a confidentiality violation.
Thank you for taking the time to read this. ”
I now have a note behind my ID in my wallet listing 8 hospitals I can’t go to because my confidentiality would be at risk. Basically I would have to travel fairly far to get to a hospital free of my school’s nursing students. Even further if I wanted to get to a reputable hospital.
I got a couple of more sympathetic, “We’re taking this seriously” emails in reply, but basically the end result is still that I can’t go to those hospitals.
Confidentiality should not need be one of my primary worries when hospitalized, but it has to be because I have to protect myself.