HIPAA vs Ethical Care: Accounting for Privacy With Neuropsychiatric Impairments

The law presumes that individuals are rational. The reasonable individual, a hypothetical figure whose actions judges and juries weigh against others, will lucidly consider risks versus benefits before acting. Yet, we know that neuropsychiatric impairment can impede the capacity for making these calculated judgments, and in some cases this impairment is associated with a lack of illness awareness (or “insight”) that affects adherence with treatment.

Nevertheless, patients, families, and clinicians must still make critical health care decisions, such as a patient’s determination to engage in or refuse treatment, often with urgency and limited information. The COVID-19 pandemic has compounded the obstacles physicians commonly face in gaining patient acceptance of treatment and psychiatric referral; physicians often encounter exacerbated suspicion, mistrust, and emotional isolation even in individuals who do not suffer from neuropsychiatric impairment.¹

So, what happens when the law inappropriately holds individuals with neuropsychiatric impairment to legal standards that are discordant with the behavioral reality of their conditions, functioning as a barrier to acquiring the information needed to make a life-altering decision?² Specifically, when do we decide to provide care for a patient with neuropsychiatric impairment if the Health Insurance Portability and Accountability Act of 1996 (HIPAA) is of substantial concern? HIPAA is a federal law that requires the creation and maintenance of national standards to protect sensitive patient health information from being disclosed without that patient’s consent or knowledge.³ HIPAA justifiably protects patient information and privacy, but it can also potentially be implemented or interpreted in a manner that compromises the provision of treatment.⁴ Hence, it is vital to remember that there is ample room for physicians to use clinical discretion and professional judgment under HIPAA’s exceptions.

Case Example

“Mrs Martinez” is a woman aged about 55 years presenting with severe depression and symptoms of psychosis, including paranoia. She has become substantially impaired by fears and fixed ideas, isolating herself and unable to work. Her husband is caring for her, but her employer requires a physician’s letter to preserve her job and acquire disability-related reasonable accommodations. The physician, who treats the patient and her entire family, learns of Mrs Martinez’s condition from her parents. However, Mrs Martinez refuses to see the physician. What can be done for the patient and her family while complying with HIPAA requirements? HIPAA aims to protect patient privacy, yet here its operationalization might inhibit care provision, leading to a worse health outcome.

Discussion

Given other circumstances, the patient presumably would have made a deliberate decision by weighing the benefit of timely disclosure against the loss of privacy or control of her personal health information. This measured decision-making process is vital in making decisions that affect one’s health, safety, and well-being. However, neuropsychiatric impairment can diminish this faculty. For example, depression can warp one’s perception of reality to such an intense degree that all hope seems lost, and psychosis can profoundly disconnect one from reality. Thus each, respectively, impairs decision-making. This mismatch between the law’s presumptions of rationality and the behavioral manifestations of neuropsychiatric impairments is most readily on view with forms of severe mental illness, and it creates a perennial hazard that situational factors exacerbate—as seen during the COVID-19 pandemic. Friction between the law’s fundamental assumptions and the clinical realities of neuropsychiatric impairments leads to countless delayed treatments, prolonged illnesses, unnecessary incarcerations, and even death.

Fortunately, there is a practical workaround under HIPAA that provides for limited disclosure. Per 45 C.F.R. § 164.510(b)(3), if:

disclosure cannot practicably be provided because of the individual’s incapacity or an emergency circumstance, the covered entity may, in the exercise of professional judgment, determine whether the disclosure is in the best interests of the individual and, if so, disclose only the protected health information that is directly relevant to the person’s involvement with the individual’s care.

In this case example, the treating physician correctly informed Mrs Martinez’s parents that they could provide information regarding her condition. However, the physician also told the parents that she could not, in return, provide information or share observations of the patient. With the information provided by the parents, the physician drafted a letter that provided Mrs Martinez’s employer with the information required to preserve her job and support eligibility for disability-related accommodations. Since the physician’s letter was necessary to maintain the patient’s insurance coverage for treatment, it fits under the exception to the consent requirement.

Mrs Martinez eventually met with an independent medical examiner, who confirmed her disability and suggested various treatment options with family support. The examiner herself could not provide treatment, just as the treating physician could only give a factual account of her clinical impressions, not an objective disability evaluation. Moreover, although the examiner’s evaluation in this context was not therapy, it ultimately served a therapeutic purpose: After this positive experience with the independent medical examiner, who met with Mrs Martinez in her home office, Mrs Martinez consented to treatment with a psychiatrist.

This resolution highlights how a patient can more readily accept psychiatric treatment in a supportive context and obviates the need for a health care proxy or guardianship, which both pose risks to a vulnerable patient’s agency. Despite neuropsychiatric impairment, clinicians can find ways to respect their patients’ autonomy, dignity, and privacy to provide them with both disability accommodations and treatment. With the pandemic intensifying patients’ usual reasons for resisting psychiatric referral—such as fear of stigma, perceived threats to self-esteem or privacy, and lack of understanding of emotional concomitants of medical illness—physicians can best facilitate such referrals with empathy, clear communication, and reassurance of continued medical care.⁵

Concluding Thoughts

The case study poses a difficult trade-off, balancing the patient’s right to self-determination versus the duty to provide care. However, when neuropsychiatric impairment diminishes the capacity for rational decision-making, the presumption of reasonability must give way. Clinicians can nonetheless respect a patient’s dignity and agency in these instances while concurrently preserving the patient’s well-being. Overbroad interpretations and applications of HIPAA need not outweigh ethical duties to patients. Through sound professional judgment and an understanding of HIPAA exceptions to the consent requirement, we can help patients heal and return to a state of mind where they can truly exercise their autonomy, maintain their dignity, and ensure their right to privacy.

Mr Larrauri is a member of the National Alliance on Mental Illness Board of Directors in Arlington, Virginia. Dr Bursztajn is a faculty member at Harvard Medical School, and a practicing psychiatrist in Cambridge, Massachusetts, with a longstanding interest in decision-making under conditions of trauma and uncertainty. Dr Stein is executive director of the Harvard Law School Project on Disability in Cambridge, Massachusetts.

References

1. Corrigan PW, Druss BG, Perlick DA. The impact of mental illness stigma on seeking and participating in mental health care. Psychol Sci Public Interest. 2014;15(2):37-70.

2. Bursztajn HJ. More law and less protection: “critogenesis,” “legal iatrogenesis,” and medical decision-making. J Geriat Psychiatry. 1985;18(2):143-153.

3. Public health professionals gateway: public health law: Health Insurance Portability and Accountability act of 1996 (HIPAA). CDC. September 14, 2018. Accessed September 8, 2022. https://www.cdc.gov/phlp/publications/topic/hipaa.html

4. Berwick DM, Gaines ME. How HIPAA harms care, and how to stop it. JAMA. 2018;320(3):229-230.

5. Bursztajn HJ, Barsky AJ. Facilitating patient acceptance of a psychiatric referral. Arch Intern Med. 1985;145(1):73-75.