Hospice & HIPAA

The Health Insurance Portability and Accountability Act (HIPAA) could also be labeled big and cumbersome . . . but don’t get in its way either!

The Health Insurance Portability and Accountability Act (HIPAA) could also be labeled big and cumbersome . . . but don’t get in its way either!

When saying or hearing HIPAA, I sometimes imagine a hippo.

The hippopotamus—“water horse” from the Greek—is the third largest land animal. It’s cumbersome, thick-skinned, and appears to have been created by a committee forced into decisions before a deadline eliminated funding. The native-to-Africa beast is remarkably fast, whether running or swimming . . . so don’t linger if a hippo heads in your direction!

The Health Insurance Portability and Accountability Act (HIPAA) could also be labeled big and cumbersome . . . but don’t get in its way either!

HIPAA irks me. I rarely remember the letters creating the acronym: HIPPA, HPPA, or HIPAH? And I usually fail to correctly identify what the letters stand for. Doesn’t the “I” mean Information and shouldn’t the “P” be for Patient? Why, please, was the awkward “portability” ever considered as a useful word for the average consumer?

And HIPAA was designed with the average consumer in mind. The simplest way of understanding HIPAA is that it protects an individual’s medical and health data. If you want a more complicated official explanation, you can look here. Every health-related agency, including hospices, must follow all of the HIPAA guidelines. A consumer—aka, you the citizen, you the patient, you that will accumulate massive amounts of health-related data from cradle to grave—is guaranteed privacy because of the 1996 act passed during President Clinton’s administration.

My dislike of HIPAA has other reasons.

In the late 1970s and into the 80s, as a pastor serving my first churches, I could phone a nurse’s station at a hospital and get dirt on a church member. Was Ms. Jones still there? What room was she in? When is Mr. Smith’s surgery scheduled? Who is his doctor? Much of the time, I’d get answers!

Not now.

Back in the day, I’d stroll into hospitals and nursing facilities and chat with nurses or administrators. I’d soon mention being a particular patient’s pastor and the staff would often share details about him or her. As a minister, shouldn’t I be trusted with information? (Well, we could have a long discussion about the trustworthiness of clergy . . .) Nonetheless, once it was easy to learn a few essential facts about how a patient—how a scared-about-surgery or frightened-to-be-alone church member—was doing.

Not now.

All of your information is protected.

My current work at hospice gives access to medical records. Prior to becoming paid staff, I was a volunteer. The background check on me as a volunteer was the most extensive ever undertaken in my professional life. When involved with the “hippo,” you better be well trained, reliable, and able to keep confidences.

hipaa-300x173Staff can be fired for breaching HIPAA confidentiality.

A hospice—and other medical agencies—can face steep fines for breaking HIPAA guidelines.

You, as a patient, should be giddy about this.

When you enter into hospice care, you will be asked who can receive information about you. Who is your DPHA, or durable power for health attorney? Who is the person(s) you’ve officially designated to speak for you about health-related issues if you can’t speak for yourself? You may want others, like your adult children or dearest friend, to be listed on the official medical chart as people entrusted with your information. No one other than those designated by you will have access to your records. If your weird Aunt Tallulah from Hogwash, Oregon—who is the family gossip—calls the hospice to ask about you, she will be told . . . nothing. Good news, eh?

After death, HIPAA rules will still protect your records. Whether it’s a family member with all of the proper IDs or a best friend who was the official DPHA, they can no longer examine your records without taking multiple legal steps.

Why? To protect your information.

In anticipation of California’s End of Life Option Act (EOLOA), the hospice where I work discussed scenarios for future patients. With the EOLOA, terminally ill adult patients able to make their own decisions can choose a medically assisted death. If a hospice patient takes this path, he or she may also prefer to inform only their doctor about their plans. Their cause of death will officially be the terminal illness . . . and not actions based on the EOLOA. However, it’s possible the patient’s records could mention the EOLOA. What if a patient’s surviving family wants to know “everything” about a loved one’s death? In simplest terms, viewing the records will be difficult. If the interested parties go through the legal procedures, they may eventually access the protected information.

But truly, the process won’t be easy.

HIPAA may be hippo-like in its bloated, cumbersome ways. And it’s an acronym hard to remember and with more small print than you can shake a stethoscope at. The Portability Act also means that, as a pastor, I can’t enter a hospital and learn a few “innocent” details about . . . anyone. As someone using medical records at a hospice, those rigorous guidelines make my current job very responsible.

And all of that is good for you.

Your health, and your privacy, is important.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

Picture of the “water horse” comes from here.

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  1. I am grateful for the law, it is a good law, However, most of the time, the issues I have with the law are not with the law itself, but with the implementation of the law. I wonder if the class on HIPAA is about the negatives. Fines, legal issues. Helping the person to navigate the rules, explaining what is required by HIPAA and by each company, and then educating staff to access the information would be nice.

    • Thanks for the comment!

      For everyone, consumer or staff, “navigating the rules” can be tough-going. I suspect there are very few true “experts” that understand the details. On we stumble. But still, privacy is important.

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