Rights and responsibilities: revealing all


I’m not sure of the health privacy laws in other countries, but in New Zealand there are a couple of pieces of law that govern access to health information.

I can readily understand that it’s not OK to release health information willy-nilly to all-comers (even case managers involved in rehabilitation!).

BUT I do have a problem with a situation that occurs almost every day in pain management.

Imagine if you will that a patient is referred to see you. You talk to him (for ease of writing today, I’m using the word ‘he’) about his pain, and as a team, you and your colleagues decide on a course of action that includes medication as well as reactivation and developing self management skills. Doesn’t sound too scary just yet, does it?

Well, imagine if that person was at the same time engaged with another service (within your own facility), but you are
(a) not allowed to access the clinical records from that service
(b) the person doesn’t tell you that he’s involved with that service
(c) that service isn’t allowed to contact you with that information without the consent of that person
– and (d) that person is being prescribed another medication that could interact with what he’s been prescribed by your service, and
(e) he has been recently admitted for a serious attempt at self-harm and the service he’s seeing (within your own facility) is continuing to work with him around this attempt.

Hmmm, the picture gets complicated doesn’t it?

The problem with selective disclosure of health information (ie picking and choosing the information that is disclosed) is that some very important, potentially harmful situations can be completely missed in the name of ‘health information privacy’. And in this situation, information from most other health services within this facility can be, and is, accessible.

With one exception: mental health information.

Now I can’t think of a more potentially hazardous area NOT to know about than a person’s mental health when they are attending a pain management service.

Pain affects every part of a person’s being, and especially when it’s chronic pain, and especially when it’s intractable, people are stressed – often stressed to the point where any vulnerability in their mental health can start to be revealed. Managing mental health problems involves using many of the same medications that are used in chronic pain management. Mental health problems often lead to high risk of serious self harm.  Chronic pain can lead people to serious depression and anxiety states – with thoughts of self harm, and even attempts.

After all the work that has gone into normalising mental health problems as being no more shameful than breaking a leg or having bronchitis, I cannot see why mental health information is more protected than, for example, cardiac or respiratory health information. Yet, according to the Health and Disability Commission in New Zealand, access to mental health information cannot be given even to people directly involved in the person’s health care within the same facility, even when the potential consequences of NOT having access could be fatal.

The thought seems to be that a reasonable person asking for health care would be quite prepared to disclose mental health information to us, so we should ask their permission for access to their records and the person will give it to us. Quite reasonable, yes?

But why is mental health information any different from other health information?

And what happens if the person attending isn’t ‘reasonable’ – for example, is drug-seeking, is planning serious self-harm, has a personality disorder that means they are prone to unusual beliefs and actions?

And what happens if we, as health providers, inadvertently place that person into a high risk situation by prescribing something that they haven’t chosen to disclose to us? Or something they’ve tried before but had a bad reaction to? Or we try something they’ve had before but didn’t work effectively? Or we give them something they’re already getting with a mental health service? (eg CBT)

Along with the right to privacy is the responsibility to adequately disclose information. Sometimes people are completely unaware of the need to tell us something, sometimes they choose not to tell us something, sometimes they deliberately mislead us. Just as it’s important to know about someone’s cardiac status before we begin reactivation, we also need to know about a history of self harm or delusional behaviour or serious depression.

Who is being protected by selective disclosure of health information?  Is it really in the patient’s best interests? Is it in the best interests of the community? Is it in the best interests of the health care provider?  And again, why is mental health information dealt with differently from other health care information?

6 comments

  1. That sounds like an extremely difficult position to be working from.

    We (in the UK) have an obligation to share information would be in a patients’ best interest with other professionals within the health service. Obviously this should be done with consent – but the principle of best interest can still be argued.

    There have though, been a number of enquiries following usually tragic cases where systems have not worked which have all pointed back to lack of services talking to each other – so that one service is aware of some elements that relate to a persons’ care and others don’t which has had serious implications.

    The right to privacy is though, also fundamental and here it is guided by the Human Rights Act but as professionals we have a duty of care as well.

    If this sounds a bit haphazard, further safeguards were introduced under the ‘Caldicott Guidelines’ which were initially established to respond to the growth in IT and the ease in which seemingly patient records and information was distributed across the National Health Service.

    Basically it is to ensure that any information shared is the minimum necessarily and that it is on a strictly need-to-know basis.
    My OT might need to know that I have a history of self-harm but might not need to know that I had my appendix out at the age of 8 (silly example.. but hopefully you get the general idea).
    I have whittered on for too long, I fear, but out of interest (I hope) I have cut and pasted a part of the code of practice regarding confidentiality that we use here

    # Information may be passed on to someone else only:

    * with the consent of the patient (Gillick competency applies)

    * where it is disclosed in the best interests of the patient (e.g. between members of a multidisciplinary team)

    * when disclosure is required by a court (or a court order)

    * when disclosure is required by statute (that is, by law)

    * where disclosure is made in the public interest as described in the defined list of circumstances in ≠Disclosure in the Public Interest≠ below

    * when required by the police in conjunction with the prevention/detection of serious crime (e.g murder, rape, kidnapping, causing death by dangerous driving)

    * do not disclose to schools, employers, DHSS, etc without explicit consent from patient.

    # Adhere to the principles of the Caldicott Report:

    * justify the purpose for each use/transfer of patient-identifiable information.

    * don≠t use patient-identifiable information unless it is absolutely necessary.

    * use the minimum necessary patient-identifiable information.

    * access to patient-identifiable information should be on a strict need-to-know basis.

    * everyone with access to patient-identifiable information should be aware of their responsibilities.

    * understand and comply with the law.

    (website ref: http://confidential.oxfordradcliffe.net/conduct)

    I think the exception for mental health seems particularly difficult to understand as it seems to codify the stigma attached to mental illness. I know this stigma exists, but we should be working in other ways to destroy it – rather than attempting to just keep it hidden.

    (sorry for taking over the comments😉 )

  2. Really interesting topic, along with CB’s comment above!

    I’m a pain management psychiatrist in the US so am involved in both the “medical” side of pain medicine, as well as both a pain management- and general psychiatrist.

    Some of US law is obviously similar. However, 1 difference we have is that, within an institution, you don’t have to get permission from a patient. 1 institution is considered a “team,” so all info that needs to be can be shared.

    Despite understanding the reasons for everyone needing psych records/info, and certainly wanting to decrease the stigma that CB mentions, I come down on the side that psych records should be treated differently than other records. The 2 biggest reasons are 1) the details in psych records are sometimes not needed by other treating clinicians, e.g. psychotherapy notes, so having access to all records is inappropriate. A treatment summary, maybe, but not the whole record. And 2) we still have a way to go to reduce stigma, and until more work is done, having patients control access to that info is most important.

    I guess I’m also more on the side of pt autonomy – pts deciding what to share, even if that means hiding their past or being drug-seeking. I think we have to be ok with others making decisions we wouldn’t, even ones we consider bad. Sometimes people don’t do their exercises at home, or they don’t take their meds… these are along the same lines.

    However, I don’t think that leaves us with no recourse. 1. If you document that the pt tells you no psych history, no drug and alcohol history, etc., and that turns out not to be true, the pt is responsible for a bad outcome.
    2. If I have reason to believe someone is let’s say, drug-seeking, I would insist on getting any info that may help me determine that. Or refuse to treat them.
    3. I think the referring team also has some leverage. If I’m referring a pt with drug/alcohol history to pain management (PM), I’d insist on contacting the person I”m referring to… so both the pt and the PM don’t get into treatment trouble. If the pt refuses, after motivational interviewing, I’d refuse to give them a referral and would refuse to treat them.

    I think this speaks to us being comfortable setting reasonable boundaries for treatment. I tell the residents I teach that there’s “perfect treatment,” i.e. what we’d like to do. But there’s also “adequate treatment,” i.e. maybe not exactly what we’d like to do, but with informed consent of the possible negatives, treatment that is at least allowable for us to participate in.

    Lastly, let’s use the example of a pt being suicidal. I”m the psychiatrist and the pt for some reason refuses to let me tell pain management. While pain management knowing might be more ideal, I’m still involved in the care. PM is not responsible for that aspect of treatment. And I can continue to discuss with the pt the reasons for everyone of the team knowing this – especially how it will help the pt! E.g. PM will give more support, someone else to check in with, etc.

    Yes, it would be better, but is it critical? I”m not sure. Yes, if PM is going to give high doses of TCA’s, but maybe not if a psychiatrist/therapist is still involved.

    Good discussion. Thanks, Adiemusfree.

  3. Hmmm, thanks so much for your comments.
    I’m still firmly on the side of needing to have access to as much health information as possible.

    Even if it’s not ‘our fault’ that a person has come to harm because of nondisclosure, it’s a person who is harmed through our action or inaction.

    And in the case of providing ineffective treatment that has already been tried – that’s simply a waste of resource that could be given to someone else.

    I wonder whether our model of pain management is slightly different in our centre compared with others – we consider the psychosocial along with the medical management of chronic pain, which means we often work with people who are unwell from a mental health perspective. And if it’s a specialist from another service (eg orthopaedic surgeon), he or she may not know that the person is seeing mental health services – and we remain ignorant!

    There is only so much information that can be included in referral letters – and it does rely on the knowledge of the referrer of the possible interventions the pain management team may suggest. Ignorance in health care is not really bliss if the patient is harmed by it.

    With respect to sensitivity about mental health problems – in NZ at least we have had so much increased publicity normalising, or at least destigmatising mental illness that I hope communication between treating health care professionals would be treated as the professional and respectful interaction that it is. We are probably the LEAST likely to treat this information insensitively.

    I really appreciate your comments – I hope others will take the time to join in!

  4. I agree with ‘How to Cope with Pain’ in that I don’t believe it is appropriate to share all details of psychological treatment with non-mental health providers. There are things disclosed in therapy that are not appropriate for viewing across the board. When I worked in the hospital system, we maintained detail psych records, held in the psych. department, but then provided a general, brief summary in the medical records, with our contact number for follow up as necessary. A doctor once referred a patient to our service and documented in the referral letter that the patient had suffered sexual abuse. That letter went into the medical file accessed by god knows who..is that appropriate? I don’t believe so.
    I’m usually happy to discuss cases with anyone where my patient gives me permission to do so, in relation to whatever they specify..ie. this but not this…..or everything related to treatment. I think it’s important to have that level of trust, otherwise how can the therapeutic relationship work? If I feel it necessary to communicate with someone and the patient doesn’t agree, I make sure they understand why I think it is important and the potential consequences their refusal may have.
    Overriding all of this though, and something that is made quite clear to patients, is that anything disclosed that indicates they are putting themselves or others at risk will be acted on accordingly, ie. communicated to relevant others even without permission to do so.

  5. Ah, perhaps I haven’t been especially clear here. In our records, only direct treating clinicians are able to access the notes, and what we’re wanting to access are the summary reports, not the specific treatment sessions.

    I think there is a difference between complete disclosure of mental health records vs summarised mental health records stating things like – has major depressive disorder, hasn’t responded well to these classes of psychotropic medication, has had multiple self harm episodes, is currently seeing XYZ therapist.

    I do agree with you with regard to open disclosure of the content of therapy sessions – but I tend to write summary clinical notes anyway, not full narrative, so these details are never held on file.

    But seriously… who is allowed to view health care notes? Aren’t we all registered health professionals? Aren’t we all required to adhere to ethical use of information disclosed to us? It would be a bit different of the office receptionist or orderlies or porters were able to access the notes!

    But I do think that it’s pretty important that a history of sexual abuse is available to me as a treating therapist – especially in pain management, where the issues of hypervigilance and post-traumatic central nervous system sensitisation are directly relevant.

    A great debate – thank you so much for contributing!

  6. I can tell you that at that particular hospital, medical records were accessed by non-health professionals, meaning administrative staff etc..so, I guess the situation you are describing is certainly different.

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