Health privacy laws are complex. Here’s how to protect yourself and your loved ones

Imagine not knowing that your fiancé had died in the intensive care unit a day after it happened. This is no hypothetical. In the age of this novel coronavirus, tales of heartbreak are all too real, but what happened to my colleague’s client is uniquely shocking.

Her fiancé was admitted to hospital due to complications from COVID-19 and was later transferred to the ICU. The hospital refused to provide information about the fiancé’s condition, although it did eventually tell her that he had left the ICU.

Alas, her sense of relief was short-lived. She found out the next day that her fiancé had been transferred from the ICU to the morgue. Advance health care directives, powers of attorney, revocable trusts — not so long ago, these estate planning tools felt to many to be almost otherworldly, an intimidating suite of documents that were an expensive luxury designed to provide peace of mind to those who have an abundance of resources.

The coronavirus pandemic has brought into sharp relief how laws designed to protect us can have unintended consequences and cause unnecessary pain and suffering, emotional or otherwise.

The Health Insurance Portability and Accountability Act (HIPAA) privacy law prevents doctors and nurses from disclosing information about a patient’s health, without the patient’s consent, unless such disclosure is necessary to treat a patient or for other critical purposes.

For patients who are unconscious or incapacitated, health professionals can share relevant information about the patient with family and friends, but only if the health professional determines, based on his or her professional judgment, that doing so is in the best interest of the patient.

This puts health professionals in an intolerable position. At a time when a pandemic is raging and doctors and nurses are rightly focused on patient treatment, they are being asked to make value judgments about whether disclosing information to the patient’s family or friend is in the patient’s best interest.

The Department of Health and Human Services recently released a bulletin reminding health professionals that HIPAA privacy rules are not set aside during an emergency. I would urge the agency to consider suspending penalties for HIPAA violations made by health providers in good faith during the pandemic.

Doctors and nurses will err on the side of caution to avoid trouble down the road. Everyone should make sure that they have executed a valid HIPAA authorization where you specify who may receive information about your health if you are incapacitated.

Doctors and nurses are under enough pressure right now; we should relieve them of the burden of having to decide whether disclosure of information is in a patient’s best interest.

We should also relieve doctors, nurses and patients’ families from the burden of having to guess how aggressively an incapacitated patient would want to be treated.

It is well documented that hospitals across the United States have drawn up contingency measures to help doctors to ration ventilators if there are not enough to go around. Would you give up your ventilator to give someone younger the chance to live?

Posing such a question as a non-hypothetical would have been unthinkable just a few weeks ago, but no longer. Some people have decided to document their wish to forego ventilation if a shortage of ventilators meant that a younger person would otherwise die.

That will potentially spare doctors from having to make an impossible decision. Whatever your wishes are, the only way to ensure that they are carried out is to document them in an advance health care directive.

There are many questions to consider. For single patients, who would pay your bills if you become hospitalized and are unconscious? For married couples, who would pay the bills if the spouse who does became incapacitated? What if both of you become incapacitated?

Creating a power of attorney for finances is critical at this time, to make sure that someone you trust is able to access your bank and other accounts if you are unable to.

The coronavirus has deprived us of our ability to take control of so many aspects of our lives. In some matters of life and death, however, we are not powerless. There are estate planning tools that can make sure that the people you love will be kept informed about your condition if you are hospitalized and unable to communicate.

You can remove the burden from your family and treating doctors of having to guess what kind of treatment you would choose if you could speak. As COVID-19 continues its global rampage, hope for the best, but prepare for the worst.

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