Health Care Advance Directives: A Video Package Intervention for Persons Living with HIV Allison C. Morrill, JD, PhD  Gordon FitzGerald, PhD  Julie Nannicelli, MPH  Steven Safren, PhD New England Research Institutes, 9 Galen St., Watertown, MA USA This research was supported by NIAID Grant #AI BACKGROUND AND OBJECTIVESMETHODS Health care planning is important for individuals who might become unable to make decisions for themselves. When an individual’s wishes are not known, there is a potential for conflict among loved ones. Despite enactment of the Patient Self- Determination Act in 1991, studies have reported low use of health care advance directives. This study evaluated the effectiveness of a video package, In Good Hands, designed to influence persons living with HIV to make an advance directive (AD). RESULTS - Perceived Benefits and Problems RESULTS - Outcomes by Group CONCLUSIONS PARTICIPANTS 344 adults living with HIV who had never executed an advance directive (or living will, health care proxy, or durable power of attorney), recruited from 5 service agencies in greater Boston: ýSex: 67% male, 33% female ýRelationship: 56% single, 33% committed (69% heterosexual, 31% homosexual), 11% married ýAverage age: 41 (sd=7, range 23-62) ýEthnicity: 42% white, 43% African-American, 18% Latino ýEducation: 28% HS ýEmployment: 23% full- or part-time, 56% on disability, 21% other ýAnnual household income: 59% $10,000 Health background: ýAverage years since infection: 9.8 (sd 5.4); since diagnosis: 7.0 (sd 4.5) ýT-Cells: mean 440 (sd 305) ýHealth care visits past 4 weeks: mean 1.9 (sd 2.4) ýAny opportunistic infection: 49% The design was a randomized clinical trial. Participants: á Completed a 45-minute structured in-person interview, á Were randomized to receive the video package or an 8-page pamphlet, and á Completed a 1-hour follow-up interview 90 days after baseline. They received $25 at each interview. Measures included: ýSociodemographic and health background characteristics ýOutcomes: Knowledge, attitudes, intent, and behavior ýUse of intervention or control materials RESULTS - Use of Materials Results suggest that: ýADs are a complex, emotionally difficult topic for persons living with HIV. ý3 months is a short time frame in which to take action, especially if one begins from a “precontemplation” or “contemplation” stage of change. ýIf providers and counselors can get people to actually view the video and read the booklet, this can begin the process. ýEach step, such as discussing ADs with loved ones, has inherent value. ýFor executing an AD, more extensive intervention may be required. Perceived Problems VariableMean* Not knowing enough about health care advance directives3.47 It’s hard for others to think and talk about how sick I might get3.40 Not having anyone to be my agent3.11 Other people might not respect it3.02 Doctors might not follow it2.87 It might be hard to change or cancel it2.65 It’s hard for me to think and talk about what lies ahead2.60 Concerns about privacy or confidentiality2.58 It takes a lot of effort2.53 Having to get the forms2.37 * 1=Not at all a problem to 5=Very much a problem Perceived Benefits VariableMean* Making things easier for people close to me4.65 Knowing whom I can count on to make decisions for me if necessary4.54 Taking responsibility4.54 Learning about future treatment choices4.47 Planning ahead so there’s less to worry about4.41 Knowing in advance how I’ll be treated4.37 Facing reality4.37 Talking with my doctor about the future4.35 Being in control of the future4.18 * 1=Not at all a benefit to 5=Very much a benefit The video package includes: (a) a 25-minute documentary video that integrates advice from medical and legal experts with the stories of four people whose lives were profoundly affected by having or not having an advance directive, and (b) a 48-page booklet with instructions on preparing an advance directive, plus forms, wallet card, file stickers and a list of local resources. The package was designed with input from consumers at each stage of development. It was offered in either English or Spanish. The objectives of the intervention were: ýGreater knowledge about ADs ýMore favorable attitudes toward ADs ýIntent to execute an AD ýExecution of an AD THE VIDEO PACKAGE INTERVENTION Read Readbooklet orbooklet and Nocontrolwatchedwatched exposurepamphletvideovideo (n=135)(n=62)(n=44)(n=38) Adj MeanAdj Mean Adj Mean Adj MeanF Knowledge: Correct answers (0-6) *** Felt well informed (1-5) *** Attitudes: Importance of factors in favor of AD (1-5) Importance of factors against AD (1-5) *** Intent: Likelihood of making an AD in 6 mos (0%-100%) *** Fisher’s % % % % Exact Thought about making AD58%81%79%95%*** Discussed making an AD20%29%30%42%* Behavior: Made an AD5.9%4.8%9.1%10.5%ns * p<.05, *** p<.001 RESULTS - Outcomes by Exposure At follow-up, 8.4% of the intervention group and 5.4% of the control group had made an AD (Fisher’s exact=n.s.). Group comparisons based on intent-to- treat found only two differences: Participants in the intervention group felt more informed (t=2.23, p<.05), and gave less importance to factors against making an AD (t=2.7, p<.01). Because so many intervention subjects failed to read the booklet or view the video, a “dose-response” analysis compared outcomes by exposure. ControlInterventionIntervention pamphletbookletvideo (n=143)(n=147)(n=147) Read/viewed at least part59%58%61% Of these, rated as “very helpful” 45%64%53% (“5” on scale of 1 to 5) Read/viewed entire contents42%35%49%