Confidentiality and information sharing with mental health carers
Please note that laws around confidentiality and information sharing change over time and depend on where you live. This story offers one point of view around the experience of caring for a young adolescent in Australia in 2011.
I DO NOT WANT TO KNOW WHAT MY CHILD SAYS IN THERAPY!
Yes, the capital letters are intentional, although I don’t mean to yell – I just don’t want there to be any doubt about my feelings on this. I want to be really clear that, just like clinicians, I see confidentiality as being essential in a therapeutic relationship. There HAS to be privacy, honesty and trust in therapy or it just won’t work.
And it goes both ways – I count on confidentiality for myself too.
As a teenager myself I never had anyone I could speak to in confidence about my worries – so I just held them inside, building up until my head was about ready to explode. I don’t want that happening to my child (it would be messy apart from anything else). And as a teenager I could never have asked a doctor for birth control pills if my parents were going to be notified. So I DO understand the need for confidentiality – I really do.
But if confidentiality is something that most clinicians, consumers and carers agree on, why is it such a barrier to working together? What is it about “confidentiality” that creates so much confusion? Why is it that clinicians are sometimes so scared about breaking confidentiality that they feel they can’t share any information at all? Where is the line between “breaking confidentiality” and “sharing information”?
To me it really comes down to a “need to know” – remembering, always, that I have a duty of care as a parent – and that s.120A of the Victorian Mental Health Act (1986) does allow:
“the giving of information if:
(i) the information is reasonably required for the on-going care of the person to whom it relates; and
(ii) the guardian, family member or primary carer will be involved in providing that care.”
In my eyes, as the carer of a young teenager, what I need to know is generally not personal or emotional. What I need is usually just “the facts” or things that would openly be shared in any family. And support for myself of course! For example:
- Do I need to know about my child’s romantic relationships, friendships and breakups? No – and to be quite honest I don’t really want to relive those lousy teenage years myself! I’m very happy to hand over that job.
- Do I need to know how much my child hates me, and sees me as a scum sucking bottom dweller? Give me a break! Doesn’t every teenager feel like that about their parents? She can whinge about us to her heart’s content!
- Do I need to know if my child is admitted to hospital? Yes. Definitely. I need to know where she is – that she is safe and getting appropriate care. Every so often I still hear debates about whether or not to notify carers about a hospital admission – “confidentiality” gone mad in my point of view. Can you IMAGINE the person you care for simply disappearing into thin air, especially when they are really ill?
- Do I need to understand her diagnosis? Yes. I need to understand what the problem is so that I can support her. I need to know how to react to behaviour that may or may not be part of an illness. Is the moodiness caused by acute adolescence (not to be confused with “a cute adolescence”!) or depression and anxiety? Or a bit of both?
- Do I need to understand her treatment? Yes. As a parent I want to make sure that my child is getting the best and safest care possible – and that the options have been explained to her. Doctors wouldn’t randomly cut off a 15 year old’s leg without talking to the parents, surely? Why would mental health treatments be considered differently to medical treatments? We may need to look for a second opinion, and a teenager is not in a position to do that alone. I also might need to buy medication for her and keep an eye out for side effects. If she needs my support in accessing treatment, then I need to be informed.
- Do I need to know if she is suicidal? Absolutely. How can I keep my child safe if I don’t know the risk? As a parent I have a responsibility to protect her – and call for help if necessary, even if my child disagrees. Confidentiality cannot be upheld in situations where there is a risk of harm to self or others, and this should always be made very clear.
- Do I need to see reports? Considering my child’s age (12 when she started at CAMHS) – yes, I need to see some reports – at least treatment plans, assessments and discharge summaries. I may not be entitled to see a full report if it does cross over into my child’s confidential information, but agreeing on the basic facts is really important. At CAMHS a lot of the information is provided by my husband and I, rather than our child, and we need to know that has been recorded accurately – after all, that is our history. I think common sense applies here about who the information actually belongs to, and whether there is any risk in sharing it. As a parent at CAMHS, I see reports as providing important background information that may be needed for my child’s future health care. I want to know those records are right and reasonable – and that they exist for her protection and continuity of care.
- Do I need to know what professionals my child is seeing and when? Yes. At her age I need to know that my child will be in a safe environment, and I might need to drive her to appointments – or wake her up for those early 3pm sessions! I also have to notify the school if she will be absent.
- Do I need to know if my child is sexually active? No – as long as abuse isn’t involved. But I hope sex education would be provided if needed – although teenagers these days know everything, don’t they?
- If my child has an eating disorder do I need to know if she has been given a meal plan? Yes. How can I provide the right food and support a child with eating issues if I’m not allowed to see the meal plan? ( It sounds bizarre, but I know this sort of information is sometimes withheld in the name of confidentiality.)
- Do I need to know she is swiping the chocolate from the pantry? No. I can work that one out for myself! Duh!
These are the sorts of things I do or don’t need to know at the moment in order to look after my child. They are easily explained to her, so there is no need to tiptoe around the subject or feel that this sort of information sharing is breaking confidentiality.
We should all be clear about what is or isn’t okay to share. Transparency is important.
I realise that things will change as she grows older – and maybe that is where some of the confusion lies, as everyone is different and there is no clear line or cut off. To me it is really just a matter of common sense. For example, as my daughter grows more independent I probably won’t need to drive her to appointments, sign her in or out of school, or cook her meals – at least I hope not! So my “need to know” will change depending on our relationship and her need for my support.
Whatever our relationship may become, however, I should always be entitled to support for myself and psycho-education so that I can cope. Explaining an illness, treatments and management strategies in general terms and supporting families doesn’t have any connection to confidentiality issues.
It is not personal. Just common sense.
Story by private contributor. Illustrated by Helen Wilding 2011.
Cite as: Anonymous. (2011). Confidentiality and information sharing with mental health carers. The Caring Together Art Journal Project. Retrieved from https://caringtogetherproject.com/confidentiality-and-information-sharing/