The curse of privacy: New rules undercut hospital patients' support systems

June 30, 2003

"IS IT ILLEGAL now for me to add to the parish prayer list prayers for healing for Maggie Smith, about to have heart surgery?" asked a member of the congregation who happens to be a psychologist, though not a doctor to Ms. Smith. She was asking about the strict new privacy regulations from HIPAA (the Health Insurance Portability and Accountability Act of 1996 that just went into effect). The act's provisions constrain health-care workers, hospital staff, clergy, social-service providers and others from disclosing health information of even the most basic sort to anyone not immediately providing care. 


Like most clergy, I recently received memos from my local hospital and other health institutions outlining restrictions on clergy and public access to patients and patient information.

After eight years as a hospital chaplain, and having been a pastoral caregiver through the first decade of AIDS, I am highly aware of the importance of confidentiality regarding people's health and personal information. I was delighted when, in the 1980s, signs went up in many hospital elevators reminding staff not to discuss patients in the public areas of the hospital. This seemed basic to respect and professional ethics. 

But now I wonder ... have we gone so far in trying to protect privacy that we will instead isolate patients from the very systems of support and care that improve and even save their lives? I worry especially for the most elderly and frail patients, who are most likely to be taken to hospital with compromised consciousness, and who may not be able to understand or sign or give verbal consent to questions about which visitors they will admit, who may receive basic information about their health status, discharge plans or even whether they have been admitted and why.

Imagine Mrs. Gregory, 89 and widowed, whose only relatives are a sister and a nephew living across the country. Perhaps she has been managing well enough at home, with a case worker who drops in, Meals-on-Wheels, a church community that calls her daily and runs errands for her, a next-door neighbor who helps out faithfully and is her best friend. Like many people, Mrs. Gregory has not checked her legal documents in a long time, and the brother who had been designated as her next-of-kin for estate purposes has died since they were filled out. 

Mrs. Gregory has a stroke and is found by the case worker and rushed into hospital unable to speak or move her right hand. Her mental status is unclear. The hospital now has the task of trying to track down the sister or arrange a legal guardian for decision-making. But the next-door neighbor who saw the departing ambulance is left frantically calling local hospitals to try to locate Mrs. Gregory, and no one has permission to tell her that her neighbor has been admitted, nor what happened. 

Mrs. Gregory may be frantic about having her cat fed, but, aphasic, she can't tell anyone, nor can she request her church be notified. A parishioner thinks she has gone to North County Hospital and goes down to try to visit, but Mrs. Gregory is now in the ICU and "only family may visit" ... too bad she doesn't have any at hand! 

The priest goes to the hospital, but the staff are now nervous about admitting her to visit, since Mrs. Gregory didn't fill out the religious preference form. The priest calls the nephew and tells him his aunt is in the hospital, but she doesn't know why. The nephew calls the hospital but can't get any information about what has happened to his aunt, since he's not her next of kin ... they just say she is in "serious condition." Mrs. Gregory lies in the ICU incommunicado, frightened and wondering why her friends and church have abandoned her.

This scenario is not likely to be an unusual one under the new regulations. In many hospitals, a majority of patients are elderly and frail, and many of these may have compromised mental status under the stress of an acute illness. The sickest people are likely to be the least able to communicate their wishes about visitors, religious needs and who may be told what about their situation.

Church communities learn to build trust among members as they work and pray together over time. In a healthy community, a certain amount of personal and health information about members is exchanged, not for gossip, but in order to pray well and to be of concrete assistance to one another in times of need. A church where members are embarrassed to ask for prayers when they are sick, or to request Communion or a priest's visit, is a congregation that has not done its work in building trust and care as Christ's Body. 

Our towns and informal associations of friends should seek to function with the same sort of trust and confidence. Where privacy short-circuits care and human connection, it ceases to be a blessing and becomes a curse. Don't let that happen. Laws that do more harm than good must be changed. 

The Rev. Jennifer Phillips, vicar of St. Augustine's Church, Kingston, R.I., and three-time deputy to General Convention, is a poet, theologian and author.

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