Preparing for the AIDS patient.

Sheryl A. Riley, National Director of Clinical Operations for Infu-Tech, Inc. and an RN with several years experience caring for AIDS patients, explains the steps necessary, in an interview with NURSING HOMES Managing Editor Laura Bruck.

Bruck: What type of impact is the AIDS pandemic having on nursing homes?

Riley: We all need to move into the twentieth century: to educate our staff and ourselves, and to understand and accept that the HIV and AIDS population is here and growing. We can't avoid admitting these patients. By law, the nursing home isn't permitted to deny admission to any patient. But some facilities are still reluctant to accept AIDS patients, usually out of fear or concern over the reaction of their residents and their residents' families. As always, the key is education for everyone involved.

Bruck: What type of education is available for the nursing staff?

Riley: A good first step would be to encourage the nursing staff to join a professional association, such as the Association for Nurses in AIDS Care (ANAC) or the Intravenous Nurses' Association. These groups, and others like them, hold regular meetings where nurses can discuss their concerns. They also put on a number of educational programs that address everything from basic HIV and AIDS nursing to more advanced topics, such as women and children with AIDS and cultural diversity issues.

Bruck: What about education for the non-nursing staff?

Riley: Their concerns are, of course, equally important. While aimed at nurses, the programs offered by groups like ANAC are open to anyone. But the content is geared toward nurses and nursing issues, and we need to remember that attending these meetings may not be feasible for some of the non-nursing staff because of finances, transportation, or time away from work. This is why nursing home inservices are so important for the entire staff, including nursing. They should begin with the basics: the definitions of AIDS and HIV, the difference between the two, the difference between AIDS and AIDS-related diagnoses, how HIV and AIDS are and are not contracted. Once the basics have been covered, you should move on to the psychosocial issues and the needs of AIDS patients as they relate to every level of employee -- from nursing, to dietary, to housekeeping.

Bruck: Who is best suited to conduct the inservices?

Riley: A nurse AIDS specialist or a physician treating AIDS patients can certainly do the job. But I think the most effective speakers are AIDS patients and family members caring for loved ones with AIDS. As health care workers, we can talk for hours about caring for the AIDS patient, but these are the people who wash their clothing, feed and bathe them and sleep beside them. They are the real experts. You can find these people through local chapters of ANAC, physicians and any number of support groups throughout the country. Nursing home management companies, such as Infu-Tech, Inc., can help the chain-based nursing home tap into these resources.

Bruck: How can staff take appropriate precautions without making AIDS patients feel even more isolated than they already do?

Riley: It's simply a matter of treating our patients -- all our patients -- with the basic respect they deserve. People with AIDS know the public is afraid. But I think they have a right to expect more from the people who care for them. They understand that we need to wear gloves when we're doing something that may put us in contact with bodily fluids. But there's no reason to wear gloves to sit and talk with a patient. If you want to wash your hands after shaking hands -- something all of us should do after shaking anyone's hand -- that's fine. But don't do it in front of the patient. Simply leave the room and do it elsewhere.

Bruck: How can nurses role model this behavior to other staff?

Riley: In the 1980s, when far less was known about modes of transmission of the virus, nurses would glove, gown, mask, hood, boot and goggle to enter an AIDS patient's room. So of course, seeing this, housekeeping wouldn't dare enter to empty the trash and dietary staff would leave meal trays at the door. The rest of the staff is going to follow the lead of nursing and other direct caregivers. They need to understand that the person who delivers the food tray can make a big difference simply by offering to set up the tray, or placing their hand on a shoulder. It amounts to treating the patient as a person, rather than as a disease.

Bruck: Despite the assurances from the CDC, the scientific community is still learning about the virus and new information is always forthcoming. How do you respond to the employee who says, "we still don't know everything there is to know about how AIDS is contracted."

Riley: That would, of course, apply to a number of diseases in addition to AIDS. But I think it's important to stress that there is not one reported case of a family member caring for a loved one contracting the disease. To me, that says a great deal. And these aren't health care professionals. The truth is that we stand a greater chance of contracting any communicable disease in the check-out line of a super market than we do as health care workers, simply because we don't take precautions in our everyday lives.

Bruck: How should nursing homes prepare their residents and families for the admission of AIDS patients to the facility?

Riley: It's probably not the residents who'd mind sharing the facility with patients with AIDS, but their families who don't want Aunt Mary in the room next door. People with no contact with the health care field need the most education. Whether or not the nursing home provides a forum for that education is up to them.

Whatever is decided, patient confidentiality is the top priority. The nursing home is no more obligated to inform its residents' families about admiring AIDS patients than they are about admitting patients with cancer or any other condition. In the case of a new subacute program for AIDS, the nursing home should do what it does when it embarks on any new program: send out a newsletter or a flyer with the bill, introducing the program and welcoming subacute patients. We don't need to -- nor, in my view, should we -- say we will be admitting AIDS patients, although AIDS could be one of the subacute categories listed.

Bruck: How do you reconcile the patient's right to confidentiality with what some staff members may view as their right to know about a patient's diagnosis before emptying their trash or setting up their food tray?

Riley: Universal precautions were set up specifically to assure patient confidentiality. That is to say, regardless of the patient's diagnosis, we should all be wearing gloves to perform any task that potentially places us in contact with bodily fluids -- whether drawing blood, changing linens or emptying trash. Taking these precautions with all patients, not just those with AIDS, guards against any breach of a patient's right to confidentiality.

Anyone in the health care field who isn't taking universal precautions is at risk for contracting any number of diseases. The "need to know" applies to direct care-givers who need diagnostic information to treat the patient. It may also apply to staff members such as social workers who will be counseling patients or doing discharge planning.

Bruck: The death of nursing home residents is something that nurses have to deal with on a daily basis. But the death of patients their own age or younger must be very different. How can you help them cope?

Riley: Nursing management needs to be attuned to the emotions of their nurses, both out of concern for them and for the effect their state of mind may have on the care they deliver. When AIDS patients die, nurses usually don't have the opportunity to go through all the phases of grieving we've all learned about; it's more of an abrupt process. The deaths can evoke some strong emotions and raise some difficult questions that aren't easily expressed.

This is why I strongly recommend monthly counseling sessions for the unit nurses, to give them the opportunity to verbalize their concerns and emotions. The sessions should be facilitated by the DON and a psychologist. Some social workers are trained in this area, but many are not. So it's worthwhile to bring in a psychologist from the outside, if you have to.

We find that a number of questions come up: about their reasons for choosing nursing as a profession, for example -- even questions about a higher power. Some of those questions -- usually the "whys" -- have no good answer. So the staff needs a safe place to vent their frustration, anger and fear. They experience significant conflicts over wanting to provide compassionate care while their own fear level is increasing. And, in addition to everything else, watching a young person die -- someone considered a peer -- makes us think about our own mortality.

The DON should also use the counseling sessions as an opportunity to determine who might need some additional one-on-one counseling. Of course, nurses who get some help in dealing with their own emotions are in a much better position to help the patients' families do the same.

Bruck: Are there other ways to help the staff channel some of their frustrations and anger?

Riley: Believe it or not, nursing home management companies and groups such as ANAC and the American Nursing Association can put facilities in touch with so-called "nurse humorists" through their speakers bureaus. These people show staff how to use humor as a coping mechanism, and they do it very well. The idea has been used for practically every disease entity, but AIDS is probably the greatest challenge.

How are they used? I recommend a staff dinner after work about four times a year, more often if possible. The nurse humorist begins by taking an "emotional survey" of the audience by eliciting their job-related questions and comments. Then she does what amounts to a stand-up routine, except the point is to help the staff vent their anger and frustrations and to show them how to interject humor into their daily lives. In my experience, these sessions have been very well-received and extremely effective.

Bruck: What is the bottom line message for nursing home staff with respect to AIDS?

Riley: The health care worker caring for the AIDS patient has a unique opportunity to be that person's link to humanity. It's not enough that the person with AIDS has a death sentence. He also has to contend with public disdain, isolation, possibly the loss of family and friends. Segregating these patients, showing them our fear, or worse, judging them or treating them with sterile indifference is simply unjust and makes them die even sooner. AIDS is here, there's no way around it, and nursing facilities are being asked to care for some of its victims. We may as well do the job right.