The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that requires the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge.  On face value, this is a great thing.  We need to hold our medical information close to the vest, for if it were to become public domain information, it could influence many aspects of our lives.  We could face discrimination, potential job loss, and denial of services.  The list of ramifications for the exposure of our private medical information is too numerous and frightening to mention.

And, yet, HIPAA is often the worst nightmare of a caregiver if your sick loved-one with a serious mental illness is over the age of 18.  Often hospitals and doctors will use HIPAA as a cudgel to restrict information and not communicate or engage with the caregiver.  Just at the moment that the caregiver needs access to treatment plans, or strategies, many doctors will refuse to include them.

According to Health & Human Services (HHS), “If the patient is not able to make decisions (for example, due to being unconscious, sedated, severely intoxicated, or disoriented), then the doctors, nurses, and social workers may contact you without the patient’s permission when they determine that doing so is in the patient’s best interests.”  Theoretically, then, doctors can follow this and engage with the caregiver.  However, the majority of the time, they dont.  Why not? And what is the impact?  Unfortunately, it is significant:

Limited Information Sharing: Despite provisions allowing for disclosure of patient information to caregivers in certain situations, such as when the patient is incapacitated or unable to make decisions, healthcare providers often err on the side of caution and withhold information due to HIPAA concerns. According to a survey by the National Alliance for Caregiving, 65% of caregivers reported that healthcare providers did not share important information with them due to HIPAA restrictions (National Alliance for Caregiving, 2021).

Impact on Care Coordination: HIPAA restrictions can hinder care coordination efforts among healthcare providers and caregivers, leading to fragmented care and suboptimal outcomes for individuals with serious mental illness. Research published in the Journal of the American Medical Informatics Association found that HIPAA-related concerns were a significant barrier to information sharing and collaboration among healthcare professionals and caregivers (Mackenzie et al., 2019).

Legal and Administrative Burdens: Caregivers may encounter legal and administrative challenges in obtaining access to medical information and participating in treatment decisions on behalf of their loved ones. A study published in the Journal of Health Communication found that caregivers often face bureaucratic hurdles and misinformation about HIPAA regulations, resulting in delays and frustration in accessing care (Barnes et al., 2018).

Emotional Distress and Isolation: The inability to access timely information and participate in care decisions can cause significant emotional distress and feelings of isolation among caregivers. A survey conducted by the Family Caregiver Alliance found that 75% of caregivers reported feeling stressed or overwhelmed due to difficulty obtaining medical information for their loved ones (Family Caregiver Alliance, 2020).

Inconsistent Implementation: Despite guidelines outlining when information can be shared with caregivers under HIPAA, the interpretation and implementation of these guidelines vary among healthcare providers and institutions. A study published in the Journal of the American Geriatrics Society found significant variability in the practices and policies related to HIPAA compliance across healthcare settings, leading to confusion and uncertainty for caregivers (Arno et al., 2018).

Identifying the patient’s personal representative is a primary task from the outset of care when dementia is involved, yet this seemingly does not apply to serious mental illness. Again, why not?  For many of us in the caregiving space, it purely feels punitive and full of stigma.  If our loved one had a “soft” illness like dementia, we might get more sympathy and engagement from the medical community.  But, sadly, we are seen as pariahs and an annoyance.  We are often not seen as part of the treatment team.

There are ways “around” HIPAA, by either obtaining Guardianship or Conservatorship.  I discuss it in my book (Schizophrenia and Other Related Disorders. Handbook For Caretakers) the ways to obtain these (and what makes most sense in your state).  But sometimes a simple Power of Attorney could do the job.  But, the reality is, EVEN WITH these legal instruments in place, doctors and hospitals may still treat you as an outsider.  Be prepared to be crafty.  Navigating through HIPAA requires perseverance, creative-thinking, and a willingness to “do what it takes.”