The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 11: Substance Use ProblemsA similar line of thought might well be applied to the use of controlled pain medications. It isbetter to tolerate a degree of manipulation and drug-seeking behavior in a population of patientsthan to allow a high prevalence of un- or undertreated pain. This is especially true in thecase of the26patientspicaswho are the concern of this book—those living with HIV/AIDS who needpalliation and end-of-life care.Symptoms other than pain are managed much the same in the substance-using population as inother groups. It should be remembered, however, that pain (physical, psychic or spiritual) canand will exacerbate suffering associated with a variety of symptoms. If, therefore, pain is notappropriately managed in the substance user, it is less likely that other symptoms will resolveeither.PSYCHOLOGICAL, SPIRITUAL, AND SOCIAL CONCERNS■ Substance users typically have histories of negative interactions with health care institutionsand providers. The palliative care provider may, therefore, find himself or herself faced with amistrustful or even hostile patient requiring considerable effort, time, and compassion. Overcomingthis barrier can be especially rewarding, particularly if it means that a patient is able tomeet his or her death in an environment of trust and respect.Alcohol aside, substance use is an illegal activity. Discovery or admission of substance use carrieswith it fear of criminal prosecution, loss of children, dissolution of family structures, loss ofemployment, and other social sanctions. The clinician should anticipate these fears and have inmind a reasonable plan of action should they be raised. At times, the patient and palliative careteam must have legal advice to ensure that the patient’s interests are protected.Substance users often live in chaotic social situations that make home care impossible. Medicationswith a street value are stolen; violence is common (women living with HIV and substanceuse are at increased risk for physical and sexual abuse); 14 reliable primary caregivers are difficultto identify; and providing security to members of the care team can be problematic. In thesecases institution-based care may be sought earlier than would otherwise be clinically indicated.There are high rates of psychiatric co-morbidity in the substance using population. All patientspresenting with active substance use should therefore have a psychiatric evaluation. (See Chapter10: Psychiatric Problems). Even when substance use is in remission, providers should rememberthat HIV/AIDS is in and of itself a stressor, that stages of clinical deterioration areespecially difficult from a psychological point of view, and that there is high risk for relapse atsuch times.Spiritual concerns among substance users are as varied and universal as among any otherpeople. (See Chapter 13: Spiritual Care.) There are, however, some additional considerations.Many former substance users rely upon deeply held religious convictions to maintain sobriety.It is critical that these beliefs be understood and respected by the palliative care team. If, forexample, a patient is a member of Alcoholics or Narcotics Anonymous, providers may want toinclude the patient’s sponsor as a member of the care team. Active users, on the other hand,may have experienced repeated rejection from religious institutions and initially be mostcomfortable dealing with spiritual concerns in other ways. Many people who are alienatedfrom religious institutions of their youth desire, as their health deteriorates, to re-engage. Itis important, therefore, that the palliative care team maintain a high degree of flexibility andopenness in this regard.XIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 263