Privacy rules make it hard to monitor friends in hospital

Q. I have a neighbor who is hospitalized frequently. Sometimes when she is not home, I am concerned she has been admitted again to the hospital, but when I call and ask if she is there, they refuse to tell me. Why so secretive?

A. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that oversees transferring health insurance, fraud and abuse and also protects patients’ health information – and that includes a privacy rule enacted in 2003.

HIPAA sets limits and conditions on how a patient’s health information is shared with other entities and individuals – including friends. Patients must give written permission for health care institutions to share information.

Years ago, local ministers could come into a hospital and ask to see a list of patients, announcing they wanted to visit all their hospitalized parishioners, and a list would be handed over. Or a person could call a hospital and ask if a friend was a patient – and receive an answer: “Why, yes, Mary Anderson is here and she is in room 111.”

No more. And you can understand why. Patients may not want their minister to know their health issues or have acquaintances checking up on them.

However, today one can call a hospital and ask to speak to Mary Anderson, a patient, and you could be connected to Mary’s room. Why? Because the hospital operator presumes you already know Mary is a patient. A subtle difference.

Patients’ health information is protected even within the hospital. “I am a nurse so I can check the census to see if my neighbor is here and call our friends” could be cause for immediate discipline or even termination.

Ask your neighbor to call you when she is admitted to the hospital. If you receive no call, she may want her privacy protected. Respect her wishes.

Q. My husband of 57 years passed away two months ago. He had been diagnosed with cancer 16 years ago. I told one friend I was surprised I haven’t been overwhelmed with grief. I felt that at times I experienced grief over the years as we fought each of his cancer battles. Was this perhaps preparation for the main event?

A. Your experience is consistent with what grief experts call “anticipatory grief.” Spouses and others who care for loved ones during long illnesses often imagine life without their loved ones, preparing emotionally for the time death finally arrives.

For some survivors, anticipatory grief seems to lessen the post-death grief. It sounds as if this is your experience. But for others, anticipatory grief makes no difference in the intensity of emotions after their loved ones finally died.

Jennifer Allen, author of “Bone Knowing,” a book about losing her husband after a long illness, writes: “Death – no matter how anticipated – takes away whatever is left of your loved one – for good. Though I was done grieving the incremental losses that came with the territory of a sick spouse, a new grief arose. I longed for the vital man who would have comforted me.”

In an interesting historical note, psychologist E. Lindemann first introduced the concept of anticipatory grief in 1944 after studying wives during World War II.

In a 2006 article at cphJournal.com, grief researchers Linda Reynolds and Derek Botha wrote about Lindemann’s study: “In response to the threat of the death of their loved ones, the wives went through all the phases of grief. It was thought that this reaction would form a safeguard against the impact of a sudden wartime death notice. However, it became evident that grief work could be done too effectively in advance. When soldiers returned from the battlefront, they found that their wives had disengaged themselves and no longer loved them.”