Family and Caregiver Schizophrenia Discussion Forum

‘Confidentiality’ Is Wrongly Used To Block Carers From Helping Loved Ones

Imagine your partner experiences extreme mood swings: you’ve seen them at their lowest, you’ve seen them at their highest, you’ve seen them when they are well. You’ve “monitored” their mood, checked they’ve taken their medication, that they eat well, sleep enough. You’ve taken them to hospital and looked after them after discharge. You’ve done the lot. You’re their carer when they are unwell, their partner when alright, their confidant, significant other, next of keen, better half. You’re there day and night.

You start noticing that they are getting ill again. You are scared about yourself, afraid about what is due to come. You contact the health services to let them know and ask for help. They respond: “I am afraid we cannot speak to you without the written consent of your partner. It’s confidential."

Over 2,500 years ago, Hippocrates referred to “confidentiality” as “all that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.” This today forms part of the Hippocratic Oath taken by medical doctors and in most countries it is a legal right governed by various parliamentary acts and codes of practice that define professional relationships with patients and data protection.

Confidentiality has evidently lasted a long time and for good reasons. But carers of people with mental health problems do not always experience it positively.

Theres a fine line between confidentiality and the trust rightly bestowed on the patient/psychiatrist relationship. There has to be trust as things are said in confidence.

I do know some people need to be sectioned for “violence” reasons but there are a lot of parents out there who want their son/daughters sectioned because they find their kids a handful or possibly just too crazy/odd for their liking. I know my parents tried to get me sectioned for just that reason.

I think if a patient reveals something that might indicate a possible dangerous/harmful effect on the carer then the carer should be told . The rights of the patient to confidentiality should not supersede the carer’s right to be as safe as possible. That having been said it’s a difficult thing to get right.

Thank you for posting. I know when my son was inpatient and I was told “I can’t tell you what medications he is on.” When I was trying to research what they were giving him, was a little irritating.

My parents had to fight through that “confidentiality” wall to. My brother wasn’t sectioned for being just a bit of a handful. When he was found during his MIA, my brother was hospitalized, it wasn’t due to our parents.

He was chased down and restrained by cops. He was Involuntarily committed by a judge. He had to pass court assessment to get released. He had court ordered treatment. The whole matter was almost completely out of my parents hands. They were told out of the blue, we have your son, he’s not being released, but due to confidentially, we can’t tell you anything else.

My parents had to pay legal fees, doctor bills, and a host of other things, but then not be told word one about what was happening to him. My parents had books of medical history on my brother. They had allergic reactions, common problems, common responses all written down. Then to be told by the doc, “due to confidentiality, we can’t tell you what meds he’s on”

But if my parents know which ones he allergic to, why not let us help him? When my brother stabilized finally he signed a host of paperwork stating that my parents can have access to his file and disclosure from health care workers. People were still trying to talk him out of it.

This is tough. Pros and cons on either side

My son has been to psychotherapy since last Fall and thus far I haven’t been given a diagnosis or any status updates at all. For a 16 year old I don’t find this acceptable. How can I as a parent make a decision without knowing what is going on first? I don’t need confidential details but certainly a parent has the right to know the condition and some kind of high level diagnosis and status from the doctor. My kid is suffering because I don’t have enough information and all I see is a fairly normal teenager. My son is a college bound basketball player and is likely to get a full ride scholarship because of his size, skills and athleticism. However, my fear is that if he is given medicine, the side effects may take away his ability to play. Main symptoms seem to be hearing things constantly, some hallucinations and some hygiene issues and somewhat anger prone/reclusive. So for now, I see confidentiality being used against us and really its hurting my son because I can’t know enough to make decisions for him.

Your son is underage and by law, You are his guardian and should have access to all info. pertaining to your son…I`m assuming your in the US

By caregiver do you mean guardian? We already have laws in place for this when it comes to legal guardians I suspect. However, just because the person is your bf/gff/mom/dad does not mean they should have access to your medical records, nor does it mean they should be able to routinely speak to your psychiatrist behind your back, even if they are helping support you.

If the person wants to keep that private it could be well warranted. Call me paranoid, but not everyone’s families are good, kind hearted people whom are educated in mental health issues.

“The struggle for definition is veritably the struggle for life itself. In the typical Western two men fight desperately for the possession of a gun that has been thrown to the ground: whoever reaches the weapon first shoots and lives; his adversary is shot and dies. In ordinary life, the struggle is not for guns but for words; whoever first defines the situation is the victor; his adversary, the victim. For example, in the family, husband and wife, mother and child do not get along; who defines whom as troublesome or mentally sick?..[the one] who first seizes the word imposes reality on the other; [the one] who defines thus dominates and lives; and [the one] who is defined is subjugated and may be killed” (Thomas Szasz).

Simply put, just because the person is schizo does not mean they’re necessarily the problem in relationships. Sometimes the other person is evil and will use a diagnosis to control the person, and if they could talk to the person’s psychiatrist they would slander them and make them out to be the crazy one when it could actually be in reverse. It is a very old way of thinking to blame the person with the problem and that kind of thinking has still not died out.

I find it frustrating that every time my son has been hospitalized they were very forthcoming with information for me. But then again each time they say they need consent from him to share his information. Why each time? He lives with me, I am with him through all of his times, and am the only one that is! How can I help him, if I don’t know what is going on? Fortunately he gives consent. But there was a time he forgot when his psych appt was, (and wasn’t doing good at all), so I called to ask. “I can’t give you that information”. What, really? Okay, cancel it he won’t be there, as I am his ride, and he doesn’t know when it is. So they called him to tell him. What the heck? But it is good they will let me tell them what has been going on with him, especially when he has a hard time relaying it.

I get where you’re coming from Amy, but some of us have family (not necessarily parents) who once they get a diagnosis will spread that information all over the place, not just within the family, but also outside the family. So when there is a fight between you, they will use your diagnosis to win arguments in the eyes of other people and turn other people against you. Also, some of these people are violent, and if you defend yourself without even hurting them and the cops come they will use your diagnosis to work against you, and the only thing that will be defined in the officer’s mind is the stigma of your diagnosis. Again, this is a horrible idea.

I do understand all your concerns. They are valid and derive from a deep desire to sincerely help your loved one. However, it is my choice and my right to maintain confidentiality about my psychiatric appointments, therapy sessions, and medication. I do not even tell my mother what medications I am on or that the reason I can not see her until later or another day is that I am awaiting a call from my therapist or the reason she could get me on the telephone was that I was talking to my therapist. She does pay for my therapy sessions and psychiatric appointments. I tell her nothing about what’s going on in my mind. It is really none of her business and it would probably frighten. She would probably lecture me making it even worse. I did talk to my sister a lot about everything concerning my illness, treatment, etc. She is the only one in the whole universe I ever trusted; except maybe a few therapists. But, she passed away in 2002 from cancer. Now, I keep it all to myself. I sign no release forms except to few other doctors or related institutions. etc that are necessary for any treatment. I do understand your frustration; but, most importantly, the privacy of the patient must be protected. This is not only for the rights of the patient; but, the health and well-being of the patient.

Oh, I totally get that! I can appreciate keeping your information private then, or any other time anyone wants it that way. It is your property. I have actually kept K’s info from his father for the very reason you give. It is just very frustrating at times.

If it is right to keep things from carers it is also right not to blame them if things go wrong because they have been unable to adequately intervene due to poor information sharing. You can’t have it both ways ie not share information but still blame carers if things go wrong. That would be unfair and immoral.
Most people who are carers do it out of a genuine love and concern for their son/daughter/husband/wife and the idea that there are legions of carers out to do people wrong is quite frankly ridiculous. One would hope that the pdoc and his mental health team would be able to weed out those where there are doubts as to their motivation and adjust what is told them on a case to case basis.

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Define your terms… what is a carer exactly? I am American. Perhaps you live in another country. In my country… you know with a constitute and bill of rights… people have autonomy over their health care, at least in my state. We also keep our medical records private… and get this even teenagers can keep their mental health records private from their parents at a certain age. We also no longer have mental asylums. I know if the person is completely unable to distinguish right from wrong we institutionalize them. However, since a long time ago we stopped putting people in mental asylums and gave them ssi and subsidized living instead. Furthermore, if the person is functioning mentally at the level of a child we will give someone guardianship of them. However, if they have the level of competency somewhere at an adult level and have an IQ above room temperature we give them the same rights as everyone else, which includes sealed medical records and the right to choose their doctor and who can know who their doctor is and who can have private conversations with their doctor. There are good reasons for this.