The following is a book review which I wrote which was published in the recent Journal of the American Academy of Psychoanalysis and Dynamic Psychiatry 38(4) WInter 2010 followed by a previously unpublished Q&A with the senior author.
Handbook of AIDS Psychiatry by Mary Ann Cohen, Harold W. Goforth, Joseph Z. Lux, Sharon M. Batista, Sami Khalife, Kelly L. Cozza and Jocelyn Soffer, Oxford University Press, New York, 2010, 384pp, $49.95
It is unusual for the Book Review Editor of this journal to request a review about a book that does not have psychoanalytic theory, dynamic psychiatry or the application of these ideas, as it’s main thesis. This book, which is about all aspects of AIDS, is such an exception. It is fitting that it be presented to the readers of this journal since this disease, more than any other modern day medical condition has impacted all aspects of psychiatry and mental health. Those of us who were practicing in the early 1980s, especially if you were doing hospital consultations, first saw this become known as a mysterious disease with dark spots on skin that was universally fatal. It then became associated with homosexuals and drug addicts The disease was believed to be highly contagious and caused by blood and sexual transmission. Medical personal became fearful of contracting the disease from patients. An accidental needle stick while drawing blood or being nicked with a scalpel during surgery, which once was an inconvenience, now became a potentially fatal event. The disease weakened the immune system and could lead to deadly opportunistic infections. It ultimately was identified as being caused by the Human Immunodeficiency Virus (HIV). From it’s discovery in 1981 to 2006 AIDS killed more than 25 million people and is still counting.
Not only did psychiatrists and mental health professional see the impact of this disease in our hospital work but those of us doing outpatient psychotherapy could not help but appreciate the effect of this pandemic on many of our patients. Homophobias, which could be multidetermined at any point in time, became greatly exaggerated because of fears of contamination from AIDS. There was a reexamination of all sexual behavior as people began to realize that heterosexual transmission of this disease was also a reality. Questions were being raised whether couples should exchange HIV testing results before engaging in sexual relations? Then there was the realization that AIDS was devastating the gay and bisexual community. We saw a grieving response that extended beyond immediate close friends and families. People throughout the country visited exhibits of traveling AIDS quilts with patches made as a memorial to individual patients. There were forensic issues encountered by some of our colleagues where people were acting out their anger about being HIV positive by having unprotected sex . There were discussions among therapists of how to deal with a patient whom they knew was HIV positive but was not telling his or her partners.
The NIH and the NIMH has awarded huge amounts of grant money directed towards AIDS and HIV research in the past 25-30 years. As a result many of the psychiatrists practicing today were supported by these grants at some time in their career or were trained by people who had such support and were well oriented about the psychiatric and psychological aspects of AIDS.
All of this is what makes this 2010 first edition of the Handbook of AIDS Psychiatry such a valuable book. Psychiatrist Mary Ann Cohen, a pioneer in the AIDS field and her six outstanding colleagues have written a book, which includes just about everything we should or might want to know about HIV and AIDS. It is billed as a practical book, which it is, but it is also a definitive work on this subject with over 1500 references. Some of the chapters are adapted from an earlier book titled Comprehensive Textbook of AIDS Psychiatry edited by Drs. Mary Ann Cohen and Jack Gorman, published in 2008 also by Oxford. Seven of the contributors to the earlier work took on the task of developing this current book.
This is not an edited book. All the 14 chapters are written by some combination of the seven authors. Dr. Cohen was involved in all but two of the chapters. Drs. Battista and Soffer were listed as residents at the time the book was published. The first 13 chapters were each followed by multiple pages of references and the final chapter on resources had addresses, phone numbers and web sites.
The widespread imprint of this disease and the comprehensive approach of this book is illustrated in the first chapter where the authors lay out the setting and models of AIDS psychiatric care. They start with effective parenting and prevention of early childhood trauma and conclude with the sections on education, HIV testing, condom distribution, rehabilitation centers, chronic care facilities and nursing homes. They touch upon the prejudice and discrimination labeled as AIDSism which unfortunately is ubiquitous and is also discussed in other chapters in the book.
Chapters titled Biopsychosocial Approach and HIV Through The Life Cycle cover material with which a psychiatrist trained in the past twenty-five years should be quite familiar. However the authors are not content with just reminding the reader to take a comprehensive history in areas relevant to this disease, but they offer over 100 suggested questions in doing a sexual history, suicide evaluation, substance abuse history or a violence evaluation. The following are examples of a few questions, which you may not have thought to use:
1. (Taking a sexual history) How do your cultural beliefs affect your sexuality?
2- Are you aware that petroleum-based lubricants (Vaseline and others) can cause leakage of condoms?
3- (To an LGBT person) What words do you prefer to describe your sexual identity?
4- (Evaluating suicidality) Do you plan to rejoin someone you lost?
5- (Taking a substance abuse history) What led to your first trying (the specific substance or substances)?
6- What effect did it have on the problem, crisis, or trauma in your life?
While it is stated that little is known about the relationship between aging and manifestations of psychiatric disorders in HIV positive persons, the discussion and questions raised about this topic in these chapters seem particularly important as treatment is now allowing people with AIDS to become senior citizens.
In the chapter titled Psychotherapeutic Treatment of Psychiatric Disorders it was noted that the enhanced understanding of the conflicts and struggles of the HIV positive patient afforded by psychodynamic psychotherapy has been described by multiple authors. This modality of treatment may be especially suited for patients with a trauma history as physical changes in the body and relationship stresses can awaken conflicts triggered by early trauma and neglect. This history of childhood emotional, physical and sexual trauma as well as neglect is also reported to be associated with risk behaviors and is prevalent in persons with HIV. Other major themes, which were identified, that could surface in psychodynamic work include fears about mortality with the erosion of defensive denial as the illness progresses and conflicts surrounding sexuality. There also was a review of interpersonal psychotherapy, CBT, spiritual focused care, and various group therapy formats.
The chapters on psychiatric aspects of stigma of HIV/ AIDS will also be of particular interest to the readers of this journal who are usually quite involved in dealing with subtle nuances in psychotherapy. Victim blaming, addict phobia and homophobia also called heterosexism are discussed in this context. While clinicians usually don’t have any trouble identifying stigma when they see it, there are scales which can be administered in both research protocols and clinical settings.
Dr. Cozza is the lead author in the chapter concerned with psychopharmacologic treatment issues. It is the longest chapter in the book and can best be summarized by their conclusion that the prescribing of psychotropic or any other class of medications to HIV positive patients taking ART is a complicated undertaking. The chapter provides an explanation of this statement in a narrative style as well as with some detailed tables showing the propensities of various medications to cause inhibition and induction.
Although psychiatrists are usually not involved with the treatment of physical symptoms or the actual administration of therapeutic drugs for medical conditions, if they work with patients with AIDS they will be discussing various symptoms and complications. Dr. Goforth and Cohen put together two chapters which clearly explain symptoms of AIDS, as well as the medical illnesses associated with them. They review fatigue, sleep disorders, appetite problems, nausea and vomiting with a complete differential diagnosis and intervention options. The full range of endocrine problems, dermatological disorders , HIV associated opthamalogical diseases, malignancies, liver and kidney disease as well as the potential symptoms of these conditions are covered.
The one chapter, which was written by four authors, was titled Palliative and Spiritual Care of Persons with HIV and AIDS. This not only covered a discussion of the management of pain, other physical symptoms, behavioral symptoms including violent behavior and suicidality but it offered a review of models for spiritual care. The work of Breitbart and colleagues with cancer patients using meaning centered interventions based on Victor Frankels ideas was introduced as was Kissane and colleagues description of a syndrome of “demoralization” in the terminally ill which is distinct from depression. It consists of a triad of hopelessness, loss of meaning and existential distress expressed as a desire for death. A treatment approach for this state is outlined. This chapter concludes with a review of the role of psychiatrists and other clinicians at the time of death and afterward. This includes a discussion of anticipatory, acute and complicated grief.
Although HIV disease and AIDS is no longer the mysterious disease which people are afraid to talk about and healthcare workers dread seeing patients with, nevertheless it is a very serious illness which cuts across all specialties and has great relevance for psychiatrists and other mental health professionals. It is estimated that more than one million people are living with HIV in the USA. Even now with retroviral treatment available, this disease is expected to infect 90 million people in Africa resulting in a minimum of 18 million orphans. Needless to say, this book should be translated into many languages and should be available internationally. This book gives us a full background about AIDS and allows psychiatrists and other mental health professionals to have this fund of knowledge at our fingertips. Also, if and when there is another deadly virus that appears on the scene, our profession will have a model and a valuable compendium of how to approach it, which is something we did not have thirty years ago.
Take Five with the Author
Questions answered by Lead Author Mary Ann Cohen
MB: How did you get involved in studying AIDS and working with HIV patients?
MAC: During my residency in psychiatry at Albert Einstein College of Medicine in 1972 I observed that some of our patients with psychiatric illness and comorbid complex and severe medical illnesses were not getting adequate medical care nearby city hospitals. It seemed to me that discrimination and stigma led to disparities in the health care they received. As a resident, I sought to address these disparities by establishing a psychosomatic medicine service in one of the hospitals closest to our community-based residency training program in the South Bronx. My goal was to establish a health care environment to meet patients’ needs and use role modeling and education to help to humanize and de-stigmatized mental illness. Subsequently, as a fellow and then as an attending in psychosomatic medicine at Montefiore Medical Center, I worked in the general medical clinic using a similar approach. In July 1981, I re-established a psychosomatic medicine service at Metropolitan Hospital Center, a city hospital in Manhattan, only one month after the first article about AIDS appeared in the MMWR. We were at one of the epicenters of the drug and AIDS epidemics. For me, AIDS was a paradigm of the complex and severe chronic medical illnesses that I had been working with until that time. It had all of the aspects of diabetes mellitus, coronary artery disease, hypertension, and cancer but was also infectious, highly stigmatized, and was associated with complex risk behaviors that posed public health risks as well. It was clear that there was a dire need for establishing another health care environment to meet the needs of persons with AIDS and provide education and support for their caregivers. I was inspired by the fears of patients, families, caregivers, and hospital administrators to work toward humanizing and destigmatizing this new illness. Caring for persons with HIV and AIDS is a challenge and inspiration that continued over the ensuing 30 years and continues to this day.
MB: Are third world countries adequately addressing the psychosocial factors involved with AIDS?
MAC:That is a very complex question that I will address with a very simple answer. The care in resource-limited countries cannot be characterized easily. It is varies from country to country and area to area. Only a small percentages of persons with HIV and AIDS have access to adequate HIV medical care and there are some areas where the only psychosocial support is that provided for dying patients. In some areas it is outstanding and in some it is entirely absent or provided by the small children of dying parents as it was in some of the homeless shelters of the early 1980s in New York City. These disparities in care are evident in resource-limited countries. The lack of access to skilled HIV specialists in medicine and psychiatry as well as lack of access to antiretroviral medication are glaring and tragic disparities that are inadequately addressed in resource-limited countries. In some areas of the United States as well as other countries with resources, care is also less than adequate for some persons with HIV and AIDS.
MB: To what degree has the social stigma with HIV disease diminished in the U.S. and what is the main reason for this change?
MAC:The social stigma of HIV has diminished to a small to moderate degree. The main reason for changes made has been a combination of education, legal strategies, and public health efforts directed at decreasing discrimination.Initially, persons with HIV and AIDS were experiencing overt discrimination that led to loss of homes, jobs, education, and even health care at hospitals, doctor’s offices, chronic care facilities, nursing homes, some houses of worship, and even funeral homes. While legal safeguards and education have led to improvement in all of these areas, the discrimination in family and society is harder to regulate or eliminate. There is still discrimination by some clinicians, in some health care facilities, in schools, and in camps. Although most discrimination is subtle and covert some is still obvious. Some of my own patients in New York City continue to experience this discrimination. In 2009 a 75-year-old retired university provost and minister was admitted to an assisted living facility in Arkansas to be closer to his daughter. He was discharged the next day because when the facility administrators realized he was HIV positive. The with the help of Lambda Legal, the family sued the facility for discrimination, the decision was upheld on appeal, and the case was settled out of court in September 2010.
MB: Is there evidence that psychosomatic factors influence the immune system and therefore effect the course of HIV disease?
MAC:There is evidence that psychosomatic factors influence the immune system in many illnesses including HIV and AIDS. As in many illnesses, depression (Katon et al. NEJM, 2010) can have a direct impact on immune system function, an indirect impact on adherence to medical care, and thus effect the course of illness. In persons with HIV and AIDS depression and stress (Antoni et al, 1996; Cruess et al, 2003, 2005; Leserman et al. 1997, 2000, 2002), PTSD (Cohen et al. 2001), substance use disorders, as well as HIV-associated neurocognitive disorders can have direct and indirect effects on the immune system, adherence, course, and prognosis. Since persons with HIV and AIDS with access to medical care have other multimorbid medical illnesses, psychosocial and psychological factors can have a profound influence on the course of all of these illnesses.
MB:What are the most common reasons that patients with HIV disease or AIDS come to see you as a psychiatrist ?
MAC: Persons with HIV and AIDS are referred or self-referred for many of the same reasons as are persons with other severe and complex medical illnesses. These include depression, PTSD, bereavement, substance use disorders, cognitive disorders, and psychotic disorders as well as for relational problems and crisis intervention. Specific issues related to HIV include depression and suicidal ideation due to HIV stigma, relational issues in serodiscordant couples, reproductive issues, and concerns about disclosure of HIV infection. The care of persons with HIV and AIDS includes crisis intervention, individual psychodynamic psychotherapy, couple therapy, family therapy, addiction treatment, geriatric psychiatric care, couple therapy, group therapy, and family therapy as well as coordinating the complicated psychopharmacological treatment of persons on a multiplicity of other medications. Most important of all, psychiatric care includes collaboration. This entails becoming a part of an integrated health care team of HIV specialists as well as other physicians and health professionals who are caring for the patient.