It’s a pretty common scenario. A family member contacts a treatment provider about a loved one with severe mental illness who is hospitalized, only to be told, “I’m sorry, I can’t speak with you – HIPAA prohibits it.” In reality, though, there are many ways HIPAA permits doctors to talk with caregivers.
HIPAA was originally intended to help, but it often hurts
The failure to communicate with families or others responsible for caregiving during or in the aftermath of a serious mental health crisis can be very harmful, even tragic. In my years with NAMI, I have heard far too many stories about tragedies that could have been averted had efforts to communicate with caregivers been made – communications that can be lifesaving and serve the best interests of vulnerable individuals. Too often, the HIPAA privacy rule has been used as a bar to compassionate care, rather than as a way to protect the rights of individuals.
The HIPAA privacy rule was adopted to give people control over their own health information and to protect against unauthorized breaches of confidential health records. The need for these privacy protections is unmistakable, particularly for people with medical or mental health conditions that have historically been stigmatized or subjected to discrimination. However, the intent of the rule was never to impede coordination of care or to prevent families from accessing information necessary to serve as caregivers for their loved ones.
There are times when HIPAA permits doctors to talk with caregivers without written consent
There is a widely held perception that HIPAA strictly prohibits communications with caregivers except when the person being treated consents in writing to the sharing of information. The reality of what the HIPAA rule permits in such circumstances is in fact quite different.
Health or mental health providers may share information with caregivers if the person who is the subject of this information consents or does not object. And, it is not necessary for this consent to be in writing. The person may agree verbally or otherwise indicate agreement. You can read more about this in our blog article entitled, “Patient Consent: No Signature Required.”
Of course, some people experiencing psychosis may be unable to provide consent or may refuse to provide consent due to symptoms such as paranoia or delusions. This situation occurs quite commonly when symptoms are so severe that the person is unaware of their mental health condition or can’t perceive their situation or relationships accurately.
Under such circumstances, HIPAA gives treatment providers discretion to determine whether their patient is capable of providing consent and, if not, whether it is in that person’s best interests to share information with their family/caregivers.
The U. S. Department of Health and Human Services clearly states how HIPAA permits doctors to talk with caregivers
The Office of Civil Rights (OCR), which is housed within the U.S. Department of Health and Human Services (HHS), is responsible for overseeing and enforcing the HIPAA privacy rule. Recognizing that there was confusion about communicating information about mental health care to families and other caregivers, the OCR issued guidance on the “HIPAA Privacy Rule and Sharing Information Related to Mental Health.” 
The guidance clarifies that it is treatment providers who decide whether a person with mental illness lacks capacity to provide or deny consent to share information. A court determination of lack of capacity is not required. Rather, the provider, based on professional judgment, may infer lack of capacity based on observations of his or her patient’s symptoms, perceptions, and orientation to reality.
The guidance further specifies that when a provider determines that it is appropriate to share information with caregivers, the information shared should be limited to that which is directly relevant to the care of the person. Examples may include information about treatment and medications, potential side effects of medication, risk factors that should be monitored (for example suicidality) and community resources for follow up care and support.
The guidance notes that when a provider determines that his or her patient lacks capacity to consent, the provider is not obligated to share information with caregivers but may share information if they believe it is in the best interests of their patient. This is important, because it makes clear that a provider if not liable if he or she, in good faith, communicates with caregivers believing it to be in the best interests of his or her patient.
In providing this information, HHS has painted a detailed picture of the space where HIPAA permits doctors to talk with caregivers.
HIPAA Misuse or Hippocratic Oath – Which one are providers going to choose?
This is where a term that is ironically similar to HIPAA becomes relevant – the “Hippocratic Oath.” The Hippocratic oath requires a new physician to uphold professional ethical standards, including to respect a patient’s privacy and also, to do no harm.
The Hippocratic Oath seems relatively straightforward on first reading, but in the context of treating people with severe mental illness, there arise certain circumstances where strictly protecting a patient’s privacy may actually lead to harms. For example, lack of communication with a family caregiver during hospital discharge planning may result in lack of appropriate follow up care or prevent steps to minimize risks of suicide.
The guidance issued by the Office of Civil Rights reflected awareness of the particular vulnerabilities of certain individuals with severe mental illnesses. However, the guidance has mostly not resulted in changes to actual practices. As a volunteer on NAMI-National’s Helpline, I hear regularly from families around the country frustrated because they are denied basic information that they need to best care for their loved ones. There remains a large gap between what HIPAA permits and what happens in actual practice.
Compassionate communication between family and health care providers is good for everyone
In recognition of this problem, HIPAA for Caregivers advocates for compassionate communications between family and health care providers. Since HIPAA permits doctors to talk with caregivers, we work to achieve that end.
To help, this website provides easily understandable information on the home page and answers Frequently Asked Questions on the FAQs page. The goal is to inform providers and advocates about HIPAA and how treatment alliances can be strengthened without violating the privacy rights of persons with mental illness. The information is broadly relevant for mental health stakeholders throughout the nation. The website is a terrific new resource on a topic that has been sadly neglected for far too long.
There is an old saying, “There is no time like the present.” It is time for providers, families and other stakeholders to come together to find a way to best provide compassionate care to people with severe mental illness without compromising their rights.
 U. S. Department of Health and Human Services, Office of Civil Rights, “The HIPAA Privacy Rule and Sharing Information Related to Mental Health,” https://www.hhs.gov/sites/default/files/hipaa-privacy-rule-and-sharing-info-related-to-mental-health.pdf.
Ron Honberg, J. D., M.Ed. is the former Director of Policy and Legal Affairs at the National Alliance on Mental Illness (NAMI). He has expertise on a broad range of issues at the intersection of mental health, law, and public policy. He has worked extensively on policy and legal issues impacting people with mental illness and their families, including health privacy, confidentiality and HIPAA.