Counseling Chemically Dependent People with HIV Illness
By October, 1993, more than 80,000 heterosexual intravenous drug users had been diagnosed with AIDS in the United States. This group represents 24% of the nation's AIDS caseload. Six percent of the gay and bisexual men reported a history of injecting drugs, making a full 31% of all AIDS cases related to intravenous drug use.
Newmeyer notes that substance use increases an individual's vulnerability to HIV in three ways. First, a person who shares hypodermic needles or other drug using paraphernalia such as "cookers,"(the container in which the drug is dissolved in water) or the "cotton," (the material used to strain the drug solution as it is drawn up into the syringe) with someone infected with HIV is at risk. Secondly, someone who becomes intoxicated may lose inhibitions against risky practices-for example, neglecting the use of a condom during a drunken or stoned sexual encounter. Thirdly, a number of substances, such as alcohol, cannabis, "speed," inhaled nitrates and cocaine, may have direct immunosuppressive properties. If one is already HIV infected, heavy use of an immunosuppressive substance might accelerate the collapse of the helper T-Cell activity.
All workers in the field of substance abuse, both professional and para-professional need to be educated about the spectrum of HIV illness, AIDS and HIV transmission. Similarly, all people working in AIDS must be knowledgeable about issues of substance abuse and chemical dependency. Shernoff and Springer describe many of the difficulties of working with individuals who have a dual diagnosis of chemical dependency and AIDS, including: locating scarce resources and quality medical care; drug treatment and psychosocial services; stigma and discrimination. In addition to the above mentioned professional challenges, the nature of HIV illness and chemical dependency brings up many emotional reactions in the worker which can interfere with optimal delivery of services to these very needy clients.
Chemically dependent clients with HIV are best served by an interdisciplinary team who, in consultation, can together develop appropriate and flexible treatment plans that prepare for and encompass expected fluctuations in the client's bio-psychosocial condition. In addition, workers must be trained to treat the inevitable deterioration in the clients' physical and mental conditions as the illness progresses, including relapse into active use of chemicals. This lesson will outline salient issues and treatment approaches in a variety of modalities which serve chemically dependent people who are infected with HIV or who have full blown AIDS.
During the course of this lesson, the term "chemically dependent" will be used to include all individuals who have a current or past history of abusing alcohol or drugs, even if they have not had a history of actual addiction to substances. Since the majority of people with AIDS who contracted the disease through shared drug injection paraphernalia reside in inner cities and are members of racial minorities, it is often erroneously assumed that categories of people with AIDS are very discrete. This comes from racist and classist assumptions which must be discarded if one is going to be able to work effectively with this population.
Many individuals who work primarily with gay men infected with HIV or who have AIDS assume that their clients contracted the disease through sexual transmission. While this is often correct, many people have engaged in multiple at risk behaviors for contracting AIDS. Six percent of all reported cases of AIDS involved gay or bisexual men who are also IV drug users. Shernoff reported patterns of injected drug use by middle class gay white men. Stall and Wiley found that gay men not only used drugs more often, but used a greater variety of drugs than did heterosexual men.
Every client presenting for AIDS related services should have an alcohol and drug use history taken. Similarly, every client in treatment for substance abuse should be questioned about his or her sexual orientation since the stage of lesbian or gay identity formation can have a significant impact on how to approach treatment issues regarding recovery from use of chemicals. Simply asking an individual "Are you gay?" is not sufficient since many men who have sex with other men do not label themselves as homosexual, and do not identify as part of the gay community. It is more useful to ask "have you ever had sex with another man (or woman)?" If the answer is "yes," then asking "When was the last time?" can provide useful and pertinent information helpful in developing an appropriate treatment plan.
Drug Use and AIDS Prevention
Most AIDS service organizations will not accept an individual who is currently using drugs as a client, unless he or she demonstrates that they are in drug treatment. In the age of AIDS, this approach to working with chemically dependent people, reflecting the current trend that only abstinence from use of chemicals is the goal of drug treatment, needs to be evaluated. The abstinence only focus must be challenged as counterproductive, since the very individuals most in need of bio-psychosocial supports will not receive these supports if they are unable to stop using drugs. These same people are most likely to be transmitting HIV to drug using or sexual partners or their children, and are most likely to be deprived of education or support to change these high risk behaviors. Eight out of ten substance abusers in the United States are not in treatment for their chemical dependency. A majority of these express no desire to seek treatment. However, they do express a desire to avoid AIDS.
Placing abstinence from drugs as the highest treatment priority with this population, unless the client is truly committed to achieving abstinence will only alienate the client or cause the client to begin a dishonest game with the worker. The goal of AIDS prevention work with drug users is simply to prevent HIV transmission from one drug user to another, from drug users to their sexual partners, and from drug users to their unborn children. Springer notes that "the goals of drug treatment and the goals of AIDS prevention must be seen separately. Abstinence from drugs is not the goal of AIDS prevention. While abstinence from drugs may be a strategy for some people in avoiding HIV infection, it is not necessary or desirable for all drug users to embrace this strategy as an AIDS prevention strategy."
Apart from methadone maintenance, abstinence is the goal of the vast majority of drug treatment agencies; the concept that active drug users require and deserve services is controversial. Workers need to embrace the concept that individuals who are not committed to a drug free life also deserve services. Advocating this position with agencies is necessary if the large population of chemically dependent people with HIV who are not committed to giving up drugs or alcohol are ever going to receive life saving AIDS education. Taking this approach does not condone drug use, but merely accepts the reality that people who still actively use drugs are in desperate need of AIDS education services.
Many drug treatment agencies and workers have taken an approach to AIDS risk reduction that encompasses the following:
IF YOU DON'T WANT TO GET AIDS 1. THE BEST WAY IS TO QUIT SHOOTING UP DRUGS: You can get help to stop. 2. IF YOU MUST SHOOT UP: Don't share needles, or cookers. People can look healthy and still carry the AIDS virus. 3. IF YOU MUST SHARE WORKS: Flush needle, syringe and cooker with Chlorox bleach. Rinse well with water. Or boil for 15 minutes. 4. REDUCE THE RISK OF GETTING AIDS SEXUALLY: Use condoms. Avoid contact with semen (cum) or blood. Learn safe sex guidelines.
During initial assessment sessions counselors should specifically discuss the issues in the above list, creating a climate for talking honestly about preventing the spread of AIDS, in addition to other issues important for their recovery.
One controversial approach to reducing the spread of AIDS in drug users is needle exchange programs. These programs offer individuals new syringes free in exchange for used ones. Researchers in New Haven, Ct. and Liverpool, England showed that the spread of HIV declined sharply when addicts were given clean needles; they reported no increase in heroin use. Making needles and syringes available has increased the demand for drug treatment, probably because of the contact the exchange allows between active drug users and service providers
Another radical intervention to fight the spread of AIDS is to have street workers (who are themselves in recovery), do peer education to active drug users on the streets about safe needle use and safe sex. These workers can also distribute condoms, do needle exchange and provide information about where treatment for drug addiction or AIDS can be obtained.
Condoms, and clear instructions about their correct use, should be made available to all clients at drug treatment facilities. Sexually explicit AIDS prevention messages are especially important with this population since many women and men sell sex in order to raise money for the purchase of drugs. Thus workers need to address their own discomfort in talking with clients about sex and should receive training in how to discuss safer sex and safer drug using techniques. Stall et al has documented that a majority of gay men who fail to practice safer sex are under the influence of alcohol and/or drugs. Clearly, workers need training in gay sexuality and how to discuss safer sex with gay male clients as well.
Until fairly recently AIDS prevention programs ignored the needs of lesbians. Since lesbians are exposed to HIV through contaminated needles or sexual partners, workers must also become comfortable with initiating safer sex discussions with women that includes relevant information about woman to woman transmission.
Chemically Dependent Adolescents
Hein notes that "the risk-related behaviors of adolescents put some teenagers directly in the path of the AIDS epidemic." She goes on to say that recent statistics have demonstrated that HIV infection is already present in the United States adolescent population. Thus it is imperative that "adolescent specialists from various disciplines begin to prepare programs and strategies that serve the special population of chemically dependent adolescents who are infected with HIV." Adolescents who are at highest risk for HIV infection fall into four groupings: those who inject drugs; gay and bisexual males; those who work in the sex industry (prostitution) or who barter sex for survival; and those whose sex partners are or have engaged in the above named risk behaviors .
Many of the adolescents who work in the sex industry or who barter sex for drugs, have either run away or have been thrown out of their homes, and are therefore likely to be homeless. Many of these adolescents engage in sex for pay to buy food, drugs, shelter or clothing. One strategy for engaging these hard to reach adolescents is to entice them into the agency with concrete services like medical care, food, clothing, a shower or a referral to a safe place to sleep. The tangible and immediate benefits of these inducements create the opportunity to develop a helping relationship with these high risk youths; this can eventually encompass HIV testing, medical follow up for AIDS related conditions, safer sex and safe drug use information, counseling, referrals for detox and help in stopping use of alcohol or drugs.
Reulbach notes that when adolescents continued to use crack or other drugs they were difficult to treat in a hospital based adolescent AIDS program in a large urban center. He reports that active drug using adolescents were less likely to keep clinic appointments, follow through on health promoting behaviors e.g. taking medication or improving diet and practicing safer sex than those adolescents who were not using drugs.
Reulbach also found that when counseling chemically dependent HIV positive adolescents the worker needed to help the client negotiate the expected psychosocial tasks that include dealing with the ambiguity of HIV positive diagnosis; integrate knowledge of HIV as a progressive, but gradual decline of the immune system; develop disclosure strategies for family and friends; make decisions regarding continuing sexual relationships and safer sex practices; and in general cope with the emotional roller coaster associated with HIV.
If the adolescent has ongoing relationships with family members it is often useful to engage them in treatment as well. In addition friends and other significant others can often help confront the adolescent's denial about both the negative impact of drug use and their own HIV condition. For some homeless or run away youth agency staff or fellow members of twelve step programs may serve many of the functions of family members, and the appropriateness of enlisting them as allies in the treatment process needs to be evaluated.
Chemically dependent individuals who learn that they are infected with HIV or have AIDS are immediately faced with new life stressors. When someone who is chemically dependent learns that he or she is HIV positive, they often cope by behaving in the way they know best: by using drugs. Fontaine states that outpatient psychotherapy, by itself, cannot provide enough support and treatment for a person who is both chemically dependent and HIV infected, especially if the individual is actively using drugs. However, outpatient psychosocial services can add an important component of care within a whole array of treatment by providing a supplemental support system for a client who is already engaged in various other support systems or by becoming the sole support system for an isolated individual.
Fischer et al state that "like any reaction to severe stress, adjustment to a diagnosis of HIV disease is governed by habitual coping mechanisms and psychosocial resources. In the case of active substance abusers, such mechanisms and resources are typically absent, severely strained, undeveloped or maladaptive." If the individual is actively in recovery from substance abuse then he or she is likely to possess more intrapsychic and interpersonal tools and resources for meeting this crisis.
Dr. Stuart Nichols developed the "AIDS Situational Distress Model" which is useful for understanding the process of adjusting to a diagnosis of HIV disease. This model describes four possible stages of adjustment to a diagnosis of HIV disease: crisis, transition, acceptance, and eventually, preparation for death. The following is how Fischer et al summarize the supportive interventions appropriate to each stage.
The initial crisis of an HIV diagnosis is commonly met with denial as a defense against extreme anxiety. Denial has been the prime psychological defense used by chemically dependent people, enabling them to continue using substances that created chaotic life situations. Thus many users remain in denial throughout the entire course of their HIV illness. This defense allows them to continue to engage in self-destructive behaviors that place themselves as well as others at risk for infection. Sometimes HIV status is disclosed to persons who have no need to know out of a desire to gain sympathy or manipulate a situation to their advantage. HIV infection may also cause disclosure of previously disguised drug use to friends or family in an effort to gain much needed emotional support. This may precipitate a crisis if the double stigma and ignorance about AIDS and drug use drives key people away. Workers need to challenge maladaptive denial which leads to increased use of chemicals.
It is appropriate and natural for a person with a life threatening illness to initially deny the threat to his or her existence. Workers must support this kind of denial until "a person can begin to absorb the impact of the implications of diagnosis. If the denial about both HIV and substance abuse is not confronted it can impede progress in other areas vital to a person living with HIV. For example, financial assistance may be used to purchase drugs; physical, emotional and legal problems may be exacerbated.
Fischer et al describe a transitional stage, in which alternating waves of anxiety, anger, guilt, self pity, and depression are typical. Chemically dependent individuals generally experience these feelings as intolerable and historically mismanage these feelings. For people in recovery a diagnosis of HIV or AIDS can be a thoroughly faith shattering and regressive time where self-medication with alcohol and drugs and thoughts of suicide are common. Workers need to prepare themselves for possibly becoming the brunt of the intense acting out or manipulations that are attempts to maintain some semblance of control.
A client who has accepted the realities of being both chemically dependent and having HIV will demonstrate this acceptance by his or her behaviors as well as a willingness to honestly discuss both issues. When clients report seeking appropriate medical consultation for HIV as well as attending Narcotics Anonymous and/or Alcoholics Anonymous meetings that have adapted their agendas to include AIDS, counselors can begin to gently probe for the feelings that accompany a growing acceptance.
Additional support may be gained by helping the client enroll in buddy programs or support groups which have a proven sensitivity to chemical dependency issues. Fischer et al note that gaining support from a substance abuser's family members or a significant other often requires task-oriented family therapy that addresses obstacles present from long standing dysfunctions that preceded HIV.
American society is notorious for being death denying. Working in AIDS causes all people to confront their own mortality, through the deaths of clients and colleagues. Thus when the time for preparation for death nears, it is crucial that workers recognize that chemically dependent individuals and their families are historically ill prepared to manage the feelings and tasks attendant to any loss, much less dying. The result can be an extremely difficult time for families and practitioners who must often be the patient's advocate, in addition to helping arrange wakes, funerals and memorials.
Residential Treatment Facilities
It is estimated that in large cities in the U.S. up to one half of all heterosexual intravenous drug users are infected with HIV. Not surprisingly, many of the clients of residential treatment facilities or therapeutic communities are HIV positive or symptomatic with AIDS. Similarly since many of the staff of these facilities are former drug users, many of them are also either HIV positive or have AIDS. One of the therapeutic aspects of these programs occurs through the role modeling provided by recovering staff who are able to empathize with the difficulties of clients struggling to become and remain drug free.
Residential programs need to have special support groups and special twelve step meetings for clients who have HIV. Staff who are living with HIV can provide meaningful role models to clients who are questioning why should they remain drug free if they now have only a short period of time to live.
use illicit drugs. Workers at drug treatment agencies need to raise this issue with clients, and develop strategies that deal with this high risk situation for relapse into drug use.
Residential facilities must be affiliated with clinics or hospitals that offer state of the art medical care for AIDS related conditions, including the ever increasing number of options for prophlaxing against various opportunistic infections. All residents need information about health promotion that discusses healthy eating, exercise and safe sexual practices. Staff of these facilities must be trained to recognize symptoms of HIV related medical conditions, since early medical intervention is often life saving or prevents major physical disabilities like blindness. Since many HIV medical conditions are now routinely treated at home or as outpatients, residential facilities will have residents with catheters, ports or other medically implanted intravenous access through which they receive medication. Some physicians are reluctant to prescribe these devices for patients who have a history of intravenous drug use since they provide the temptation of an easy way to
Staff need to initiate discussions in treatment groups and community meetings which elicit feelings about residents who have become acutely ill and required hospitalization. When a resident, staff person or recent graduate dies from AIDS there need to be provisions made to mourn his or her death within the community, and to discuss all of the resulting feelings and fears that emerge. Handling these situations directly and honestly within the facility is an opportunity to teach invaluable coping skills to all the clients.
Methadone Maintenence Programs
Most of the issues discussed above also pertain to clients in methadone maintenance treatment programs, (MMTPs). All drug treatment programs need to offer special support groups for clients who are living with HIV and AIDS. Providing groups for significant others of clients with HIV can increase the systemic support the client receives. Another useful treatment option is multiple family groups where all involved can share coping strategies and support.
With clients who are living with HIV or AIDS, the counselor should aggressively pursue a case manager role as liaison between the various professionals on the client's treatment team. Since clients on methadone are often stigmatized and not offered dignified and sensitive treatment at clinics and agencies, once other professionals on the treatment team learn that there is a caring colleague coordinating and monitoring the client's treatment, the patient is more likely to receive quality and humane treatment.
Thus when a client in a MMTP is hospitalized, a visit from the worker can serve a number of useful purposes. The first is to support the client during the stressful period of acute illness and hospitalization. The second is to act as an intermediary and advocate for the client with the nursing staff.
It is important for workers at methadone programs to develop flexible pick up schedules for clients with HIV or AIDS, because long waits at the frequent medical appointments often mean that clients will not be able to come to the clinic with the frequency and at the times assigned by the clinic. As the illness progresses, provisions for delivering methadone to a client's home need to be arranged.
When a client dies from AIDS a notice announcing his or her death and specifics regarding the wake, funeral or memorial is usually posted. Workers should be prepared to elicit reactions and feelings from all clients, especially those who are themselves, or whose spouses are living with HIV. A death can be a potent stressor that has the ability to trigger drug taking as a means of avoiding the feelings. Thus a drug treatment agency is a perfect place to anticipate these reactions, prepare for them and help clients seek out healthy alternatives for dealing with their feelings.
Chemically Dependent People With HIV as Inpatients in Hospitals
Weiss writes that "working with chemically dependent HIV infected patients on an inpatient medical unit poses special problems for the medical staff. These patients are perceived as irresponsible, manipulative, demanding, drug-seeking trouble makers who rarely follow the rules of the ward. Medical, nursing and social work staff working with these patients need support and education to help them with this population". She goes on to say that unless the medical unit is equipped to search patients' possessions and rooms regularly and restrict visitors, illicit drug use on wards is unavoidable. Once staff understands this, their efforts can be directed towards minimizing this phenomenon and its consequences.
Chemcially dependent individuals are used to getting their drugs when they want it, and thus usually have difficulty waiting for medication or declining drugs offered by visitors. This impatience on the client's part is usually expressed as irritability, anger or demanding medication from staff, resulting in staff labelling these patients as "management problems." Weiss states that chemcially dependent patients usually require generous amounts of medication while in the hospital. Staff often withhold from these patients the very medication they need, making these patients even more irritable and difficult to manage. Making the patient comfortable with adequate opiates or sedatives will help the patient feel heard, enhance the patient's trust and improve the working relationship between the chemcially dependent patient and staff.
Social workers or psychiatric nurses are in a perfect position to organize groups that provide clients the opportunity to vent their feelings appropriately and offer one another mutual support. These groups can also be psycho-educational and attempt to teach patients how to better advocate for themselves in ways that the medical staff can respond to.
Attempts should be made to interest hospitalized clients in educational seminars about their health condition, drug treatment and available services once they are discharged. Where hospitals serve large populations of chemically dependent individuals staff shoudl reach out to local intergroup offices to arrange daily meetings of AA or NA in the hospital.
Anxiety disorders are probably the most frequent psychiatric complications of HIV disease in both those who themselves are uninfected but at high risk as well as those who have symptomatic HIV disease. Depression is the next most common psychiatric symptom. Both of these conditions respond well to supportive individual and group psychotherapy. Yet chemically dependent people have historically demonstrated an inability to tolerate these feelings, resorting to self-medication. When the symptoms are severe, it is important to make a referral to a psychopharmacologist who is skilled in both substance abuse and AIDS. Workers should expect that chemically dependent clients are likely to abuse or over medicate themselves with prescription drugs. Close interdisciplinary team work is invaluable in preventing manipulation of one professional against the other. Concrete, cognitive interventions need to point out that taking more than the prescribed dosage will result in a period of time when the patient will have to do without prescribed medication.
Many individuals in recovery and some professionals are reluctant to prescribe anti-anxiety mediciation, anti-depressants or other psychotropic drugs to chemically dependent clients. While twelve step programs and psychotherapy can go far in helping relieve some psychiatric symptoms if left untreated by appropriate medication these clients will generally resort to self-medication and relapse. Since the anxiety or depression often has an organic origin, these clients often respond well to medication. Once they experience relief from psychiatric symptoms they often have the psychic availability to cope with other demanding tasks in the management of their health.
Workers must be alert to any indications of the onset of AIDS related dementia, which often takes the form of short term memory loss or erratic behavior. Drug treatment workers often interpret missed appointments or other bizarre behavior as an acting out or response to being under the influence. An evaluation by a neurologist and psychiatrist skilled in diagnosing AIDS related dementia is essential at the first indications of a change in a client's mental status. These symptoms sometimes resolve after treatment with either antiretroviral drugs or psychotropic medication.
Since people with AIDS take a variety of prescribed drugs, many of which can be mood altering, it is sometimes necessary to develop an appropriate treatment strategy that addresses this reality. Faltz offers the suggestion of drawing up the following agreement during counseling sessions with chemically dependent people with HIV.
Medication Agreement I,__________________________, REALIZE THE FOLLOWING PROBLEMS WITH MY CURRENT USE OF MEDICATION: (Check if applicable) 1. Feeling tired or having a clouded mental state. 2. Feeling "hyperactive" or nervous. 3. Anticipating my next dose ahead of time. 4. Wishing for a higher dose or stronger medication. 5. Supplementing medication with alcohol or drugs. 6. Thinking of asking more than one doctor for medication. 7. Other_______________________________________ I AGREE THAT THESE PROBLEMS INTERFERE WITH MY TREATMENT, AND I COMMIT TO THE FOLLOWING AGREEMENTS: 1. Not to exceed the daily dose of medication prescribed. 2. To discuss any medication problems with my primary Health Care Worker. 3. Not to obtain medication from other sources. 4. Not to self-medicate with alcohol or drugs. 5. Other_______________________________________ Medication Name Dose Frequency ___________________ ________________ ________________ ___________________ ________________ ________________ ___________________ ________________ ________________ ___________________ ________________ ________________ ___________________ ________________ ________________ _______________________ ______________________ ________ Patient Signature MD/Health Care Worker Date
Working with chemically dependent people with HIV is intensely difficult work for a number of reasons. Both people with HIV and people who have injected illicit drugs are stigmatized in contemporary American society. It can be very draining for workers to try setting limits with a population who has as one characteristic a history of chronic impulse control disorder. In order to be effective with this population workers need to readjust their expectations about what constitutes success. Often, it is not appropriate to try and do traditional intrapsychic psychotherapy. Practical problem solving counseling is generally a more realistic mode of intervening. In short much of this lesson has focused on practical suggestions for simply engaging members of this population in needed services that will help improve the quality of their lives as chemically dependent people living with HIV.
Published in The Second Decade of AIDS: A Mental Health Practice Handbook
edited by Walt Odets & Michael Shernoff , New York: Hatherleigh Press, 1995.
© 1995 Michael Shernoff