A GUIDE TO AIDS RESEARCH AND COUNSELING

FOCUSVolume 6, Number 9

August 1991

_THE_AIDSHEALTHPROJECT

Telephone Counselingfor People with HIVDoug Conaway and David Paisley

Telephone-based counseling-offering anonymity, as well asimmediate, round-the-clock, and ongoing access-has been atraditional response to suicide prevention. In the context of HIV­related mental health services, telephone-based counseling canprovide interventions not only to prevent suicide, but also todeliver a broad range of crisis-related emotional support. Workingin cooperation with other agencies, a telephone-based programcan be an essential component of integrated case management.

The AIDS/HIV Nightline, a project of San Francisco SuicidePrevention, provides telephone based emotional support and crisisintervention to people with HIV-related concerns. The Nightlinewas created in response to the increasing number of HIV-relatedcalls to the Suicide Hotline. As a result, it is staffed by volunteercounselors trained not only in crisis intervention and suicideprevention techniques, but also in HIV-related issues such asdeath, illness, sexuality, and drug use.

The Nightline's approach reflects general crisis interventionprinciples that affirm the individual's right to self-determinationand focus on developing confidence and control. By offering asafe, nonjudgmental forum for people to discuss their feelings, theNightline helps validate and normalize these feelings. Rather thansimply providing advice to alleviate the crisis, counselors encour­age callers to identify concerns and possible courses of action. Toreach individuals who are not imminently suicidal, but who maybe at increased risk of suicide, or those who might be inhibitedfrom calling because of the stigma associated with the word"suicide," the Nightline is publicized broadly as an emotionalsupport hotline and not as a suicide hotline.

This article, based on the experiences of N ightl ine counselors,defines the characteristics of telephone-based counseling, thetypes of calls counselors receive, the appropriate responses to HIV­related suicide calls, and the training necessary for telephonecounseling.

Aspects of Telephone CounselingTelephone-based counseling has several characteristics that

distinguish it from face-to-face services. First, it is more available,especially for those with mobility impairments or transportationproblems. In rural areas or communities with limited HIV-sensitiveor general mental health services, telephone-based counselingmay be the only support available. The use of a wide-area, toll-freenumber further increases access for those who might otherwisehave no services available.

Telephone-based counseling also provides immediate sup­port, limited only by its hours of operation. Since many emotionalcrises are temporary, an immediate response can be critical toavoid serious repercussions. Telephone operations, often provid­ing services during the night and on weekends, act as a safety netwhen other mental health agencies are closed.

The anonymity guaranteed by telephone-based services al­lows callers to discuss feelings they might hesitate to mention toface-to-face counselors or therapists with whom they have on­going relationships. Callers always have the option to remain

anonymous, and that option is particularly important for difficultissues such as suicide, sex, drug use, or partner abuse. Forexample, clients may fear that mental health providers in face-to­face sessions may report any mention of suicidal thoughts tosupervisory staff to ensure appropriate clinical and legal responses.Others may fear legal repercussions when discussing illegal druguse or feel inhibited when discussing sexual activity in person.

Types of CallsAs a result of broad public outreach advertising emotional

support, the majority of calls to the Nightline are not from individu­als at immediate risk of committing suicide. While each call isunique, there are several general categories of calls that illustratesome of the uses of telephone-based, HIV-related counseling.

For many callers, the focus of the call is HIV-related educationand support. The fact that someone is calling in the middle of thenight with a basic question about transmission or testing, however,often indicates the presence of emotional issues. Exploration of theevents that prompted the call usually reveals an anxiety- or otheremotion-laden experience, such as a first-time sexual encounter orrecent possible exposure to HIV. Many Nightline callers useinformational questions to "feel out" the service before raisingdeeper issues.

Telephone-based counseling is an effectiveand relatively inexpensive way to provideimmediate/ accessible emotional supportand to complement face-to-face services.

Telephone-based counseling, because it is anonymous, canprovide critical support to those who are awaiting antibody testresults and those who have recently tested seropositive. Nightlinecallers often seek reassurance for their decisions to be tested orfurther information about the test. Individuals awaiting results,generally ineligible for HIV-specific services, may need immediateemotional support during the period before they receive theirresults. Seropositive callers are often too overwhelmed duringpost-test counseling to comprehend the complex emotional andpractical consequences of HIV disease. The Nightline, because itis available on demand, is able to assist these callers atthe momentthey are ready to face these issues.

Some of the most challenging calls come from individualswith severe HIV dementia or chronic mental illness. Rather thanrelying on the standard approach of encouraging the callers toexplore their feelings, the counselor responds by trying to deesca­late the immediate crisis and, if possible, help the caller connectwith appropriate mental health services.

Telephone-based services are Iikely to attract frequent callers.Frequent callers, often with chronic mental illnesses, are identifiedthrough the pattern ·of calls, sound of voice, given name orpseudonym, or other information recorded on call logs. To ensurea consistent and beneficial response to subsequent calls, Nightlineclinical staff and volunteers work together to develop a counseling"directive." Directives usually include diagnostic information,recommended approach, and limits on frequency or length ofcalls, and are available to all volunteers.

The Nightline can become an integrated component of fre-

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Telephone Counseling.continued from cover

quent callers' mental health care. Callers may give permission fortheir outside therapists to work with staff in developing directives.Therapists also refer clients to the Nightline for off-hour support.

Responding to Suicide CallsThe response to HIV-related suicide calls follows a standard

suicide prevention approach, but requires a sensitivity to the. implications of HIV disease. Nightline counselors assess each call

for suicide risk by considering the subject of the call, the severityof the emotional issues involved, and common suicide risk indica­tors, such as past attempts, mental illness, and significant stress.Counselors frequently broach the topic themselves, asking callersif they have been thinking about suicide. The direct approachhelps normalize suicidal feelings and gives suicidal callers imme­diate permission to talk about them.

On the telephone, it is impossible to assess the rationality ofa threatened suicide. Counselors treat all suicidal feelings as val idand free from judgment, regardless of the caller's condition or thecounselor's beliefs about suicide. Since callers have sought outemotional support, however, counselors interpret all suicidal callsas "cries for help" to find alternatives to suicide. In keeping withthe Nightline's philosophy of self-determination, counselors try toget callers to generate their own alternatives and suggestions forcoping, thereby building self-worth and a sense of control.

Since most suicidal episodes are time-limited, the primarygoal is to negotiate a contract with a caller to delay any suicideattempts. Because the process recognizes and val idates the caller'scontrol over his or her Iife, it usually resu Its in the caller agreei ngto some step, even if only a promise not to make an attempt whilestill on the line. As long as the caller is on the phone, the attemptis delayed, and the counselor works with the caller to find ways tomitigate feelings of helplessness and hopelessness.

For H IV-related su icidal callers who face the more immediateprospect of incapacity and death, this may be particularly difficult.Suicidal callers with HIV disease, even those who are asymptom­atic, may have greater difficu Ity than other su icidal callers learn ingovertime to cope and to reduce their suicidal feelings. Counselorsfocus on the immediate future to counter feelings that callers havelittle time left, and on helping callers regain control within thelimits of potential permanent limitations on physical and mentalcapacity, and financial independence.

Special Training for Telephone CounselorsTelephone counseling differs in approach and training from

face-to-face counseling. Physical separation prevents the use ofbody language, facial expression, or touch. Instead, counselorsmust create rapport with callers by verbal izi ng what is often shownthrough gestures, stating explicitly, for example, "Yes, I want tolisten to you," or, "Your concerns are important to me." They mustalso learn to use tone of voice, murmurs, and even silent pauses toconvey their willingness to listen and their concern.

Similarly, separation prevents telephone counselors fromusing callers' physical expression of emotion to assess calls.Instead, counselors rely almost exclusively on "active listening"techniques, such as continually paraphrasing and restating callers'comments, to encourage them to verbalize feelings that would beobvious if there were visual contact.

In order to clearly define callers' feel ings and needs and tocommunicate appropriate responses, telephone interactions maybe lengthier and involve simpler and more direct conversationthan face-to-face encounters. To help counselors develop activelistening skills and overcome the limitations of physical separa­tion, training includes extensive role playing, particularly where"caller" and "counselor" are sitting back-to-back.

FOCUS August 1991, PAGE 2

In a single shift, a counselor may listen to calls from afrightened teenager discovering his or her sexuality, a bereavedfamily member, a relapsing injection drug user, a closeted gayman, a patient near death, and a lonely caregiver. To respond tothe variety of callers and issues, training not only introducescounselors to common HIV-related psychosocial issues, but alsoto issues of cultural diversity, gender, sexuality and sexual devel­opment, and addiction and recovery. Because the lack of visualcues exacerbates the risk that counselors will make assumptionsbased on callers' demographic characteristics, training reinforcesthe idea that each caller is unique.

Nightline counselors are prohibited from making outsidecontact with callers, primarily to preserve the guaranteed anonym­ity of the service. To protect their privacy, counselors use only theirfirst names (or pseudonyms) and do not give out information aboutother counselors, such as their work hours. Training emphasizesthe role of the Nightline as a consistent, immediately availablesource of crisis intervention rather than as a mechanism for callersto develop a relationship with individual counselors. To achievethis goal, counselors must be interchangeable.

Because anonymity allows callers to use a telephone serviceas a dumping ground for their most troubling issues, counselorsmay handle a significant number of stressful calls including, inaddition to emergency and suicide calls, hostile calls. The controlthat callers have over the interaction-they can hang up at anytime-can compound counselors' feelings offrustration. Finally,because contact is anonymous and limited, counselors are notlikely to witness the resolution of callers' concerns.

The variety and volume of potentially stressful calls make itnecessary to develop on-going support mechanisms for counsel­ors. During shifts, staff or other volunteers are available to offeremotionaI support. Regu Iar case conferences, su pport grou ps, andsocial events provide an important forum for counselors to sharetheir experiences and feelings with each other, and simple tech­niques such as keeping a "shift journal" give counselors an outletfor their emotions.

ConclusionAs the epidemic grows and people with HIV disease live

longer, there will be an increasing demand for already overbur­dened HIV-related mental health services. Telephone-basedcounseling is an effective and relatively inexpensive way toprovide immediate, accessible emotional support and to comple­ment face-to-face services. Many communities have existingsuicide and crisis lines or HIV information hotlines, either of whichmight serve as a source of HIV-specific emotional support, particu­larly in terms of HIV-related crisis and suicide prevention. Bycollaborating to adapt existing programs, HIV counseling andcrisis intervention professionals can ensure that emotional supportis only a phone call away.

Doug Conaway is former Director of the A IDS/HIV Nightline andis a writer and HIV educator currently living in San Juan, PuertoRico. David Paisley is the Director of the A IDS/HI V Nightline. Formore information on the AIDS/HIV Nightline, contact San Fran­cisco Suicide Prevention at (475) 752-4866.

FOCUS Changes in SeptemberNext month, FOCUS will grow to eight pages, adding aneditorial column, expanded resources and references, andmore Recent Reports. These additions wi.ll strengthen ourability to deliver a comprehensive overview of a particulartopic. For those of you who appreciate FOCUS for its brevity,be assured that these changes will not diminish our commit­ment to clarity or our respect for your time; our new designwill make FOCUS more accessible and easier to read.

Physician-Assisted SuicideLee R. Siome, PhD andJeffrey Moulton, PhD

HIV disease has added momentum to an already increasinginterest in euthanasia, a patient's right-to-die, and physician­assisted suicide.1,2 Many health care providers receive requestsfrom end-stage HIV-infected patients to facilitate suicide, andanecdotal accounts suggest that physicians do in fact respond tothese requests.

Current standards, however, provide only limited help inaddressing the accompanying legal, ethical, and policy dilemmas.While it is no longer a crime for individuals to commit suicide, itis a felony in many states, including California, to deliberately aid,abet, advise, or encourage suicide. Codes of professional ethics inthe United States clearly forbid active euthanasia, but these areevolving and reflect a more tolerant stance toward practitionerswho choose to facilitate "rational suicide" to end suffering.3.4

Physicians' AttitudesIn a recent study of physicians' attitudes toward assisted

suicide, participants responded to a hypothetical case in whichthey were asked whether they would facilitate a patient's suicide.Sixty-nine clinicians from the San Francisco County CommunityConsortium (CCC), a community-based clinical research organi­zation whose member physicians care for patients with HIVinfection, completed a self-administered, anonymous question­naire. As a comparison, 86 physicians randomly selected from themailing list of the California Medical Association (CMA) alsocompleted the questionnaire. The following case vignette waspresented to study participants:

Tom is a 30-year-old gay male computer programmer diagnosedwith AIDS two years ago. He has severe wasting syndrome andpainful oral ulcers, and responded poorly to treatment for his thirdepisode of Pneumocystis carinii pneumonia. There is no evidenceof neurological impairment, and it is clear that Tom is mentallycompetent. His mood is mildly depressed, but the depression is notpronounced given the seriousness of his condition.

Tom has been in a primary relationship for eight years andworked until several months ago. As his personal physician since hisdiagnosis, you consider Tom a thoughtful, intelligent patient whodoes not appear to have any significant psychopathology. DuringTom's biweekly clinic visit, he aks you to prescribe a lethal dose ofnarcotics for possible use at some future date.

In response to the case vignette, 23 percent of the totalphysician sample indicated they would be likely to assist Tom byprescribing the drugs upon his initial request. If Tom were tobecome adamant, 27 percent of both groups would respond bygranting his request, and more than 50 percent of both groupswould respond by referring him to a mental health professional.Forty-one percent of the total sample would refer the adamantpatient to the Hemlock Society. CCC members, who are veryinvolved in AIDS care, would be more likely to respond to Tom'sadamant request for a lethal dose of medication (35 percent), thanwould CMA physicians (20 percent), who are less involved in AIDScare. CMA physicians would be more Iikely than CCC physiciansto refer Tom to another physician.

Adherence to certain ethical beliefs predicted an intention toassist Tom in committing su icide. A derived variable, descriptivelynamed "universal acceptance," was the strongest predictor ofphysicians' intention to assist in the suicide. Statements compris­ing the universal acceptance variable included: if it were moreaccepted by my peers, I would assist my terminally-ill patients incommitting suicide; if it were legal, I would assist my terminallyill patients in committing suicide; in keeping with humane care, itis acceptable to hasten a patient's death upon their request; andassisted suicide is in keeping with the medical principle of rei ief ofsuffering.

Variables indicating an identification with the patient alsosignificantly predicted a physician's intention to assistTom. Theseincluded: homosexual orientation, felt similarity to one's AIDSpatients in terms of lifestyle, beliefs, and philosophy of life, andperceived risk for contracti ng HIV disease due to personal-I ifestylefactors. Identification may solidify the doctor-patient alliancesince identified physicians may have a greater empathic under­standing of the patient's experiences and desires. Patient-identi­fied practitioners, however, may have greater difficu Ity objectivelyassessing a request for assistance.

Variables that were not predictive of physicians' intentions toassist were notable and surprising. They included: estimations ofwhen a cure for HIV disease would be developed, feelings ofhelplessness in treating HIV disease, and personal and professionalexperience with death and dying.

Evaluating a Suicide RequestClinicians facing decisions about whether to assist in a patient

suicide must evaluate their patients' mental status and motivationto determine whether the suicidal wish is "rational." Do patientshave gross psychopathology, for example, histories of depressionor other affective disorders, psychiatric hospitalizations, or suicideattempts? Are there indications of HIV-related dementia or otherneuropsychological complications? Are patients responding topressure from family or friends to end their lives? Is the suicidalwish temporary, that is, in reaction to short-term complications inpatients' lives, for example, grief resulting from multiple losses?

Physician-assisted suicide is occurring inthe United States as doctors express acompassionate desire to help rationalpatients die a painless and dignified death.

Providers must mon itor their subjective responses to a su iciderequest and remember that these responses can interfere with anassessment of a patient's status and motivation. Crucial to thisprocess is deciding whether the provider can tolerate the moraland legal implications of choosing to aid in a death. Cliniciansstruggling with such decisions should seek objective consultationand advice from colleagues and ethics boards.

Toward a More Universal ApproachPhysician-assisted suicide is occurring throughout the United

States as doctors express a compassionate desire to help rationalpatients die a painless and dignified death. The research cited inthis article, however, suggests that the community standard of careregarding assisted suicide for people with AIDS is anything but"standard" and that widespread discussion is required to resolvethis inconsistency.

lee Siome, PhD is a PsychologyAssociate ofOutpatient Psychiatryat California-Pacific Medical Center in San Francisco and a Post­doctoral Fellow of Psychology at Kaiser Permanente MedicalCenter in Oakland. Jeffrey Moulton, PhD is a clinical psychologistin private practice and the former Director of PsychologicalServices for the HIV Evaluation and Treatment Team at LettermanArmy Medical Center in San Francisco.

References1. Quill T. Death and dignity: A case of individualized decision making (Soundingboard). New England Journal of Medicine. 1991; 324(10): 691-694.

2. Wanzer S, Federman 0, Adelstein J. et al. The physician's responsibility towardhopelessly ill patients: A second look. New England Journal of Medicine. 1989;320(13): 844-849.

3. Goldblum P, Moulton]. HIVdiseaseand suicide. In Face to Face:A Guide to AIDSCounseling. Dilley JW, Pies C, Helquist M, eds. San Francisco: UCSF AIDS HealthProject, 1989: 152-164.

4. Wood G, Marks R, Dilley]. AIDS Law for Mental Health Professionals. 5anFrancisco: UCSF AIDS Health Project, 1990: 59-78.

FOCUS August 1991, PAGE 3

Recent ReportsImpact of Suicide on Psychotherapists. The Menninger Clinic(Bulletin of the Menninger Clinic, Spring 1991).

Following the suicide of a patient, most psychotherapistschanged their approaches to therapy, according to a survey inwhich 39 percent of respondents reported having treated a patientwho committed suicide.

The survey of 105 therapists, included participants at aconference on mood disorders and staff therapists at the Men­ninger Clinic in Topeka, Kan. Subjects had a median age of 40 to49, and a median of 11 to 15 years of professional experience.

After hearing about a patient's suicide, therapists' most com­mon reactions were shock, sadness, anger, a sense of guilt, anxiety,and doubts about competence. Almost all therapists who experi­enced a patient suicide reported dealing with the incident bydiscussing it with colleagues. Nearly a third sought formal consul­tations, and five percent sought treatment.

Therapists changed their work by using more conservative,thoughtful counseling approaches; listening more seriously tosuicidal ideation; being more vigilant about patients' commentsreflecting hopelessness; keeping more clinical notes and seekingsecond opinions more often; acting more quickly to hospitalizepatients; and accepting more often suicide as a possible outcome.

The article, using respondents' comments and a review of theliterature, goes on to discuss the frequency of patient suicide, thephases of therapist response, and coping strategies for therapists.

Suicidal Thoughts and Antibody Testing. Cornell UniversityMedical College and The New School for Social Research Uournalof the American Medical Association, February 2, 1990).

Thirty percentof subjects seeking HIV antibodytests-includ­ing equal proportions of those who tested seropositive and sero­negative-reported suicidal ideation, according to a New YorkCity study. Far fewer expressed suicidal wishes or intent, andtesting suggested that these subjects were clinically depressed.

Researchers interviewed 301 subjects who had engaged inhigh-risk behaviors and were unaware of their infection statuswhen the study began. Forty-nine subjects (16 percent) testedantibody positive and 252 subjects (84 percent) tested antibodynegative. Participants, mostofwhom were men and most of whomwere White, had a mean age of 33, and had been recruited byadvertising and by notices sent to medical clinics. Psychologicaltesting included the Beck Depression Inventory.

For seropositive subjects, suicidal ideation-thoughts aboutcommitting, wishes to commit, or intention to commit suicide­was reported among 29 percent at the time of testing, 27 percentone week after notification, and 16 percent two months afternotification. Ideation was reported for 31 percent of seronegativesubjects at the time they tested, but fell in the follow-up surveys to17 percent and 16 percent, respectively. Two percent of theseropositive subjects expressed suicidal wishes at the time theytested; this rate fell to zero at two months. One seropositive subjectexpressed the intent to commit suicide at the time of testing, but nosubjects expressed this intent in follow-up interviews.

Rates of ideation or changes in ideation in this group may bedifferent from other groups because of the study's recruitingmethods and the extensive pre- and post-test counseling proVided.

Suicide among long-Term Survivors. New York State PsychiatricInstitute and Columbia University (Oral Presentation (M.D.105)from the 7th International Conference on AIDS, June 1991).

A study of 53 gay men who were diagnosed with AIDS at leastthree years earlier found that nearly half had thought aboutcommitting suicide since diagnosis. Three of the subjects hadattempted suicide during this period.

The majority of study participants, who had a mean age of 39,were White men and college graduates. All were clients at a NewYork City AIDS service organization.

Forty-three percent stated they had thought about end ing thei rlives since being diagnosed with AIDS. Nearly three-quarters ofthe men reported having periods of a week or more when theythought a great deal about death; only 12 percent of these subjectshad such thoughts before their diagnosis. Thoughts of deathgenerally occurred in the context of acute illness or pain, afterwitnessing deaths offriends or lovers, or when subjects were in thehospital or alone at night. The group rated in the mild range ofpsych iatric distress scales.

Subjects cited several factors explaining the psychologicalresilience that enabled them to avoid suicide, including having atleast one confidante, having insurance, and receiving excellentmedical care.

AIDS, Euthanasia, and Grief. Netherlands Institute of MentalHealth and University of Leiden (Oral Presentation (M.D.55) fromthe 7th International Conference on AIDS, June 1991).

Researchers in the Netherlands interviewed the relatives of 59deceased people with AIDS and found that euthanasia had beendiscussed with 60 percent of the patients, that it was performed 23percent of the time, and that in another 31 percent of cases,treatment was withheld while pain medication continued to beadministered. (Euthanasia, although illegal in the Netherlands, istacitly accepted by Dutch courts, and euthanasia guidelines arepublished by the Royal Dutch Medical Association.)

The researchers also found that while the decision to proceedwith euthanasia was never simple, euthanasia did not appear tocompl icate the grief process. When this process was campi icated,however, it was because the patient had died immediately after theadministration of medication, the patient had died after hours ofsuffering, or the relative, rather than the patient's doctor, hadadministered the medication.

Next MonthThe media center at the Seventh International AIDS

Conference in Florence th is June was bristl ing with stories onAIDS in the era of vaccines, the continued success of ZDVand its sibl ings ddl and ddc, and new forms of treatment forPCP and other opportunistic conditions. Little ofthe coverage,however, offered insights into the impl ications for counselorsof the conference's more than 5,000 presentations.

In September, to inaugurate our new design (see box onpage 2), the FOCUSeditorial staffoffers health care providersan interpretation of conference findings that puts reports ofepidemiological, basic science, treatment, and psychosocialinformation into the context of daily health care practice.

FOCUS A GUIDE TO AIDS RESEARCH AND COUNSELINGAUGUST 1991. A monthly publication of the AIDS Health Project, which is affiliated with the University of California San Francisco and the San Francisco Department ofPublic Health. Published in part with an equipment grant from Apple Computer, Inc., Community Affairs Department. ©1991 UC Regents. All rights reserved.

Executive Editor and Director, AIDS Health Project: James W. Dilley, MD; Editor: Robert Marks; Staff Writer: John Tighe; Founding Editor and Advisor: Michael Helquist;Medical Advisor: Stephen Follansbee, MD; Marketing: Paul Causey; Production: Joseph Wilson and Stephan Peura; Circulation: Sandra Kriletich.

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