CASE: HIV and Confidentiality John Nichols, a forty-two-year-old engineer, had been a regular patient of Dr. Michael Invis for three years and had been a regular patient in the practice for a similar period ending about six years ago. In the intervening years he had not appeared at the office at all. Up until then and similarly during the three years since his return, he practiced good oral hygiene and appeared faithfully for a checkup every six months. Except for some "catch-up'' restorative and periodontal work that was needed after his three-year absence, during which time he had clearly taken very poor care of his teeth, he has needed only routine care. Regarding the years of his absence, Nichols volunteered to Dr. Lewis that a personal relationship he had invested a lot in came to an end and that put him "into a tail spin." He had not paid much attention to his teeth or "anything else" during that period. His return to the practice and to taking better care of himself followed upon his meeting and eventually marrying his wife. The marriage also brought him two children, a boy now fourteen and a girl now sixteen, from the wife's first marriage. Her first husband had been an alcoholic and after years of trying to make the marriage work, Nichols had explained, she had finally separated and then divorced from the man, especially for the sake of her children. Nichols was devoted to his wife and cared deeply for the two teenagers whom he had now formally adopted. During a recent visit on August 6, Nichols told Dr. Lewis that he was being transferred to another city and would have his new dentist there contact Lewis's office for his records in due course. Dr. Lewis offered his cooperation in the process. Nichols's examination was routine with one exception. Dentists are often the first health care professionals to see signs of HIV/AIDS because some of the earliest manifestations of the disease can occur in the oral cavity. When the examination had been completed, Dr. Lewis asked Nichols to step into his office for a moment and closed the door. He explained to Nichols that there was one more aspect of his examination that they needed to talk about. Nichols had an unusual lesion on his tongue that looked very much like hairy leukoplakia. This is a type of lesion that the human body's defense system routinely eliminates very effectively before it can become established. The fact that it was there could well mean that Nichols was suffering from some sort of immunodeficiency. "You mean AIDS?" said Nichols. "I would strongly recommend that you get tested for HIV as soon as possible. If you are infected, there are now some treatment regimens that have proven very effective for many patients." Nichols did not seem shocked at the proposal that he might be infected with HIV. "I have been afraid of this for years," he volunteered. "During those years when I was off the wall, one of the stupid things I did was drugs, not just snorting but hard stuff, IV stuff I was going down and down and someone offered me some drugs for relief and I got hooked. Sometimes when things are really terrible you don't know who are your friends and who aren't. I thought it would get me out of the pit I was in, and then I fell further in. Every penny I had went to get drugs, and sharing needles was just a way to save money for more drugs. I even lost touch with my parents for nearly two years; but then my brother was seriously injured in a car accident that made the news on TV and I heard about it. One of my street buddies heard the TV in a liquor store and said to me, 'You know a Steve Nichols? He's been in some car accident.' "So I called my parents on the phone and they were incredible. Even with him in the hospital pretty badly hurt, they welcomed me back with open arms and took me in and got me fixed up with a rehab program. Luckily I have a good engineering degree and my work record was good before I went off the deep end. After I got clean I was able to find a job and then, well, I met Connie and my life has turned around." "That is a powerful story and I am honored that you have shared it with me," said Dr. Lewis. "But you really need to get tested for HIV as soon as you can. It is possible that something else is going on, but if your immune system is involved at all, you need to get it looked at." "But the odds are it's HIV, right?" "Yes," said Dr. Lewis, "I am sorry to say that this lesion is extremely rare except in the case of HIV infection." "Well, I think I would like to call my physician in that case. May I use your phone before I go?" "You certainly can." "Also, I trust that this is strictly confidential between you and me. Connie knows what went on with me when I was down and I will need her help to get through this. But I do not want the kids to know, not till they are a lot older, especially when their natural father was an alcoholic and a jerk. I don't want them to know I was a user too. Even though I am clean now, that wouldn't be good for them. It would scare them pretty bad, I think, and maybe do worse things. So, this can stay between us, okay?" "There is an issue that we will need to talk about after you are certain what is going on because you are going to be seeking dental care from a new dentist and his or her staff. I would recommend that you inform any health professionals who care for you about your special health situation since the presence of HIV could affect what treatments are appropriate for you or pose special risks, and HIV can pose risks to health care workers too. We're very serious about the Universal Precautions here in this office and most dentists’ and physicians' offices are the same way. That way, if a patient is immunosuppressed from HIV infection, the dentist and the dentist's staff do not pose a risk to the patient and it provides protection for the dentist and staff as well. So, you should communicate about your condition, if it is HIV, with your new dentist. But you can be sure that dentists and their staffs are committed professionals who learn lots of things about patients that need to be kept private; so I do not believe you would be at any risk in telling them. I would be glad to talk about this more once you and your doctor have a firm diagnosis of what is going on, and 1can help you communicate about it with your new dentist if you want." "I don't see a problem with health care people knowing if they are taking care of me. I can see that they would need to know," Nichols said. "And they know how to keep things like this private, like you say." "Yes," said Dr. Lewis, "they certainly do." John Nichols thanked Dr. Lewis and called his physician before he left the office. His HIV test was positive and he began to receive appropriate treatment. He informed his wife fully about his situation and she was steadfast in supporting him through this difficult time. Nichols fared very well in treatment, meanwhile transferring to another city where he continued his treatment, received a promotion in his work and cared lovingly for his family. His children knew he had some disease that required him to receive regular treatment, but its precise nature was described in terms that did not reveal the downside of his earlier life. As is routine in many states, the positive results of Nichols's HIV test were reported to the state department of public health by the hospital where the test was performed. In all other respects, his status as HIV-positive was protected by the confidentiality structures of the medical records at his physician's office and at the hospital, as well as at Dr. Lewis's office, where an appropriate note had been made in Nichols's confidential record. Unfortunately, the story of John Nichols's interactions with Dr. Lewis's office does not end there. Lewis had installed a computerized record-keeping system several months before Nichols's last visit. This had enabled Lewis to move a lot of physical records out of his office into storage and open a third operatory for the practice's dental hygienist to use. Thanks to the computer system, all the patients' records were still available at the touch of a few keys on the keyboard in each operatory. The computers in his office were hooked up to a server at a company called Medical Data Storage, Inc. (MOS), elsewhere in town. Occasionally, there were hitches in the electronic, hookup to the server because of overload on the telephone lines, but Lewis and his staff found the new system very user-friendly and its hitches no more frequent than the occasions in the "old" days when a patient's physical record would disappear somewhere in the office. MDS had a service offered to physicians and dentists in collaboration with a small collection agency. MDS's computers would automatically send overdue bills to the collection agency after a certain period of time and the collection agency would send a reminder letter to the delinquent client and follow this up with a telephone call to reinforce the need for payment. Dr. Lewis transferred his collections work to this service when he signed up with MDS for data storage. Dr. Lewis's bill for Nichols's last visit must have arrived at Nichols's former address after he and his family had moved and then disappeared instead of being forwarded. In any case, it never reached them at their new home and neither Nichols nor his wife thought to inquire about its absence. The delay in payment triggered MDS's computers to send the Nichols file to the collections agency. A reminder letter was then sent and the follow-up phone call placed several days later. The notation about John Nichols's status as HIV-positive should have been redacted from his record before it found its way to the collection agency; but it had not been removed. When the call was answered, the collection agency caller explained that John Nichols had an overdue dentist bill for Dr. Lewis for the visit in which John's HIV status was diagnosed. Luckily, although Nichols's daughter was at home at the time, it was Nichols's wife who answered the call. What obligations to protect patients' confidentiality does a dental professional have and how are these obligations affected by new technologies for data storage and retrieval?