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Confidentiality and Privacy of Patients with Limited Capacity

by Mark Hughes, MD, MA

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    00:00 We've talked about patients either giving implied consent or expressed consent for release of information.

    00:08 What about patients that don't have the capacity to make these decisions to release information? So patients that actually lack decision-making capacity by definition they can't give consent for disclosure of information.

    00:25 The standard would be that the same protection should apply to them as would apply to a patient that does have decision-making capacity.

    00:34 So, we cannot just, you know, have casual breaches of privacy just because this person has limited capacity.

    00:40 We still need to do our, you know, good effort to make sure that we're protecting the information.

    00:48 And it also means that, you know, patients can be harmed thru breaches of confidentiality or privacy.

    00:55 Even if they, you know, lack capacity they might be harmed as a result of release of information.

    01:02 So, we have to figure out ways to get a decision-maker to give consent when we need to disclose information.

    01:12 And another special instance of this is going to be the adolescent patient.

    01:17 So in pediatrics, and we've talked about this in terms of the developmental milestones that occur as one becomes autonomous, there's going to be an inclination to allow adolescent patients to become more and more involved in making their own healthcare decisions.

    01:34 And often, it's the case that paediatricians will set aside time to meet with the patient alone so that they can foster this developing autonomy.

    01:45 And it's made clear to the child's parent, "Now let me spend some time just with the child alone to talk to them, see if they have any concerns that they wouldn't feel comfortable relaying in front of you." So this burgeoning autonomy of the adolescent is bolstered.

    02:02 It also allows you to learn information that they might be otherwise hesitant to disclose.

    02:09 And especially if it's sensitive information they don't want the parents to know but it's still going to be important for you to provide them care, you want to give them the ability to share this information.

    02:22 The question is going to be "What do you document and how do you document?" It is still going to be important to document this for future clinicians but at the same time you need to safeguard the privacy of the adolescent.

    02:36 Talked in a previous lecture about this possibility of the parent being a proxy, having access to the medical record.

    02:44 There might be means, especially in our electronic medical record, to restrict access to information that you learned with the adolescent patient just in your one-on-one encounter with them excluding, you know, the involvement of the parent.

    03:01 So you're going to need to use your judgment.

    03:03 If you're in pediatrics, figuring out, you know, whether or not this information should be shared with parents.

    03:09 If you think it is of such import that, you know, really will affect the health and well-being of the child, you might try to convince the adolescent "We really need to involve your parents in this" and try to have a conversation with them about accomplishing that.

    03:25 There might be times when it's actually required by law that there is parental notification.

    03:30 Depending on the issue, depending on the condition some jurisdictions might require parental involvement.

    03:39 And I think, you know, first and foremost is the judgment call is based on the best interest of the adolescent.

    03:46 So if you're concerned about their either psychological health, their physical health, or you're concerned that there are implications for others, you know, in adolescent that might disclose that they might be wishing to harm another person, there might be a need to disclose this information either to the parent, to a guardian, to a representative authority from the jurisdiction.

    04:18 Now, another instance where we have to think about confidentiality and privacy is what about the patient that has died.

    04:24 So the same duty to protect confidentiality continues even after the patient's death.

    04:31 Again, they may not want this information to be disclosed to other people.

    04:37 So you're going to have to make a judgment call what information might be relevant to another person, it really depends on the circumstances of "Is it permissible to disclose it or not?" If the patient really had asked that the information remain confidential even after their death, you should be respecting their wishes.

    04:59 It should also be pointed out that certain information is going to be public record.

    05:04 So completion of a death certificate you generally have to list the cause of death and any associated conditions the patient may have had.

    05:13 In that case, it becomes public knowledge. A family member or other people could get access to the death certificate.

    05:21 So, you know, knowing that there are certain limits of what you can protect.


    About the Lecture

    The lecture Confidentiality and Privacy of Patients with Limited Capacity by Mark Hughes, MD, MA is from the course Patient Confidentiality and Privacy.


    Included Quiz Questions

    1. Parental notification may be required by law.
    2. Parents may never obtain the health records of their adolescent children.
    3. Future clinicians may not access the records of adolescents.
    4. Physicians may not share sensitive information with adolescents.
    5. Adolescents are not allowed to make their own decisions.
    1. The duty to protect patient confidentiality continues after the death of the patient.
    2. The duty to protect patient confidentiality ceases 20 years after the death of the patient.
    3. The duty to protect patient confidentiality ceases after the burial of the patient.
    4. The duty to protect patient confidentiality ceases 10 years after the death of the patient.
    5. The duty to protect patient confidentiality applies to patients aged 18–65.
    1. Cause of death
    2. Blood alcohol level at the time of death
    3. History of substance use disorder
    4. History of alcohol use disorder
    5. Toxins in the bloodstream at the time of death

    Author of lecture Confidentiality and Privacy of Patients with Limited Capacity

     Mark Hughes, MD, MA

    Mark Hughes, MD, MA


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