What happened to my roommate? HIPAA and Death

The Health Insurance Portability and Accountability Act (HIPAA) ensures that the personal information of our nursing home residents stays personal, but sometimes it’s taken too far. Well-meaning staff members, not wanting to violate HIPAA, are unsure whether or not to share news of a resident’s death with their friends in the nursing home, so they err on the side of caution. This leaves other residents wondering what happened, and, if they suspect a death occurred, they’re left with the unhappy knowledge that their own death could also pass unacknowledged.

Some members of Psychologists in Long Term Care recently discussed this and the consensus was that since someone’s death is a matter of public record, letting other residents know about it is not in violation of HIPAA. To follow up on this, I contacted the New York State Department of Health Nursing Home Hotline (888-201-4563) and they concurred: it’s okay to tell others that the person died, but not to give medical details.

Similarly, it’s within HIPAA guidelines to let a roommate know, for example, that their friend in the hospital should be returning to the nursing home soon, but not to discuss details of their health condition without the permission of the hospitalized resident or their family.

Part of creating more homelike nursing facilities is honoring the bonds created between residents. It’s important to share news, within the limits of HIPAA, of how friends and neighbors are faring, and it’s especially important to acknowledge the lives and deaths of those in our care.

7 thoughts on “What happened to my roommate? HIPAA and Death”

  1. I stumbled across your blog. You have an ambitious goal: "To make nursing homes somewhere I'd want to live by the time it's my turn to be in one…" I share your view and have been working toward that goal as well.

    In regards to your post I am happy to hear that news…and particularly life and death news as in this case is relayed to those friends or neighbors. You are right people want to be remembered.
    Take care!

  2. MT, I consider it an ambitious but possible goal, especially because there are quite a few of us who share this vision. Thanks for taking the time to comment.

  3. Dr. El,

    Thank you for clarifying this important issue. For years I have neither been comfortable sharing nor keeping quiet about the death/hospital issue because of HIPAA. Finally, I have the answer.

  4. I also confirmed this with DSHS in WA State. Death is not 'health care information' and so the event is not protected by HIPAA (whereas 'cause of death' would be). I look forward to sharing this clarification with staff at the skilled nursing facility where I work. This question has come up for us several times in the past few years…and no one really knew, so erred on the conservative side. Thx!

  5. Sue and Vanya, I think a lot of folks are unclear about it. This post was picked up quickly at Long Term Living Magazine and the National Senior Living Provider Network, where many of my posts get blogged, so I'm guessing the editors there saw the need for clarification too.

  6. I have always been comfortable telling resident's when one of our own has passed away. I don't have any qualms about telling them one of the other resident's has gone to the hospital, either. I suppose at some point I am going to get called on the carpet for this, but I think when you live with someone, you have the right to know (if you want to) if they are "OK" or not.

  7. K. Tree, from what I understand, it would be okay to tell another resident that their friend has gone to the hospital, but not to say exactly why.


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