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, PhDNew England Research Institutes, 9 Galen St., Watertown, MA 02471 USA

This research was supported by NIAID Grant

#AI 40413

BACKGROUND AND OBJECTIVES METHODS

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: Sex: 67% male, 33% female Relationship: 56% single, 33% committed (69% heterosexual,

31% homosexual), 11% married Average age: 41 (sd=7, range 23-62) Ethnicity: 42% white, 43% African-American, 18% Latino Education: 28% <high school (HS), 33% HS degree, 39% >HS Employment: 23% full- or part-time, 56% on disability, 21% other Annual household income: 59% <$10,000, 41% >$10,000

Health background: Average years since infection: 9.8 (sd 5.4); since diagnosis: 7.0 (sd 4.5) T-Cells: mean 440 (sd 305) Health care visits past 4 weeks: mean 1.9 (sd 2.4) Any opportunistic infection: 49%

The design was a randomized clinical trial. Participants: Completed a 45-minute structured in-person interview, Were randomized to receive the video package or an 8-page pamphlet, and Completed a 1-hour follow-up interview 90 days after baseline.

They received $25 at each interview. Measures included:

Sociodemographic and health background characteristics Outcomes: Knowledge, attitudes, intent, and behavior Use of intervention or control materials

RESULTS - Use of Materials Results suggest that: ADs are a complex, emotionally difficult topic for persons living with HIV. 3 months is a short time frame in which to take action, especially if one begins

from a “precontemplation” or “contemplation” stage of change. If providers and counselors can get people to actually view the video and read

the booklet, this can begin the process. Each step, such as discussing ADs with loved ones, has inherent value. For executing an AD, more extensive intervention may be required.

Perceived ProblemsVariable

Mean*

Not knowing enough about healthcare advance directives 3.47

It’s hard for others to think and talk about how sick I might get 3.40

Not having anyone to be my agent 3.11

Other people might not respect it 3.02

Doctors might not follow it 2.87

It might be hard to change or cancel it 2.65

It’s hard for me to think and talk about what lies ahead 2.60

Concerns about privacy or confidentiality 2.58

It takes a lot of effort 2.53

Having to get the forms 2.37

* 1=Not at all a problem to 5=Very much a problem

Perceived BenefitsVariable Mean*

Making things easier for people close to me 4.65

Knowing whom I can count on to make decisions for me if necessary 4.54

Taking responsibility 4.54

Learning about future treatment choices 4.47

Planning ahead so there’s less to worry about 4.41

Knowing in advance how I’ll be treated 4.37

Facing reality 4.37

Talking with my doctor about the future 4.35

Being in control of the future 4.18

* 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: Greater knowledge about ADs More favorable attitudes toward ADs Intent to execute an AD Execution of an AD

THE VIDEO PACKAGE INTERVENTIONRead Read

Read booklet or booklet andNo control watched watched

exposure pamphlet video video(n=135) (n=62) (n=44) (n=38)

Adj Mean Adj Mean Adj Mean Adj Mean FKnowledge:

Correct answers (0-6) 3.6 4.2 3.9 4.46.7***Felt well informed (1-5) 3.5 3.4 3.7 4.26.3***

Attitudes:Importance of factors in favor of AD (1-5) 4.6 4.6 4.5 4.7.42Importance of factors against AD (1-5) 3.3 3.0 2.9 2.56.3***

Intent:Likelihood of making an AD in 6 mos (0%-100%) 46 53 61 727.0***

Fisher’s % % % %

ExactThought about making AD 58% 81% 79% 95%***

Discussed making an AD 20% 29% 30% 42% *Behavior:

Made an AD 5.9% 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.

Control Intervention Interventionpamphlet booklet video(n=143) (n=147) (n=147)

Read/viewed at least part 59% 58% 61% Of these, rated as “very helpful” 45% 64% 53% (“5” on scale of 1 to 5)

Read/viewed entire contents 42% 35% 49%