Project Overview
About
At any point, a medical crisis could leave someone unable to communicate their healthcare decisions at the end of life. For this reason, it is important to decide, discuss, and document end-of-life preferences—through medical advance directives—well in advance. But despite broad recognition of the value of advance directives, only a small percentage of Americans have completed one.
My team used a range of qualitative research methods to better understand the psychological and societal factors associated with this gap. Based on our research findings, we then designed a comprehensive museum experience that would increase awareness around—and ultimate completion of—medical advance directives.
Our ultimate goal: to help people plan their peace.
Objective
Institution
Team
Role
Skills
Design a service that promotes higher rates of end-of-life planning among healthy adults
University of Texas at Austin —
M.A. in Design Focused on Health
Isabel Alexander, Sneh Chandan,
Atchayaa Krishnan, Evelyn Syau
Lead Researcher & Strategist
User interviews, contextual observations, intercept surveys, qualitative research synthesis,
service blueprinting, graphic design,
low-fidelity prototyping
Timeline
14 weeks (part-time) — Fall 2023
01. Define
End-of-life planning is not just for people who are old or ill. At any age, a medical crisis could leave someone unable to communicate his or her own healthcare decisions at the end of life.
Advance Directives
Advance directives—comprised of a living will and medical power of attorney—provide a framework to ensure patients' wishes are honored during critical medical situations.
A living will is a legal document that allows individuals to outline their healthcare preferences and treatment choices regarding end-of-life care in advance of actually needing it. These choices include resuscitation, palliative care, and life-sustaining treatments such as mechanical ventilation or artificial nutrition.
A medical power of attorney (also known as a healthcare proxy) is a trusted person who can make medical decisions on behalf of an incapacitated patient. This proxy is tasked with ensuring that the patient's wishes—as outlined in the living will or through discussions—are respected and followed by healthcare providers.
Advance directives provide many benefits, including the opportunity to receive care consistent with one's preferences, better communication with one's healthcare team, decreased utilization of unwanted intensive treatments, less costly care, and improved satisfaction at the end of life.
The problem
Currently, only _1 in 3 Americans has completed an advance directive.
Without clear instructions documented in advance, medical decisions are often based on default protocols. This may result in unwanted aggressive or costly treatment at the end of life—creating anxiety and confusion for patients, family members, and healthcare providers alike.
In the United States, societal expectations around death and dying, combined with advanced medical capabilities and a fee-for-service payment structure, have emphasized prolonging life at all costs—even when aggressive interventions may not align with patients' values or preferences.
02. Research
Using a range of qualitative methods, we sought to understand the existing barriers around end-of-life planning among American adults—regardless of their age or health status.
Contextual Interviews
We conducted 10 in-depth interviews with users and subject matter experts regarding their perceptions of end-of-life planning. Topics included the distribution of formal and informal EOL planning resources; the effect of emotional and cognitive state on EOL planning; and the extent to which one’s life circumstances, health status, and proximity to death inform their likelihood of engaging in EOL planning. In one home-based interview, we were able to walk through the various components of one patient's advance directive, which he stored in a lockbox in his closet.
Intercept Surveys
In addition to our sit-down interviews with recruited participants, we conducted short intercepts at various public locations within Austin. We constructed an interactive survey board that allowed people to string their responses to seven questions, which were designed to gauge levels of awareness, belief, knowledge, and action regarding advance directives. Although there was unanimous belief in the importance of advance directives, only a third of respondents had completed one themselves—a discrepancy that mirrors the national average.
75%
Awareness
general awareness of advance directives
100%
Belief
belief in the importance of advance directives
37%
Knowledge
knowledge about the components of advance directives
31%
Action
action taken to complete an advance
directive
Community Immersion
Lastly, we attended community events in Austin—such as a Death Cafe, an advance care planning workshop hosted by AARP, and a virtual meet-up for death doulas—to better understand existing initiatives to promote EOL planning. I also did a 14-hour ride-along with Austin EMS to observe how paramedics dealt with advance directives in their practice.
Clockwise from top left: AARP workshop; death doula virtual meet-up; EMS ride along
Synthesis and Insights
After synthesizing our primary research, we arrived at the following insights, which highlight the interconnected challenges—and potential avenues for improvement—related to end-of-life planning.
Click to expand each insight below!
Our synthesis board, color-coded based on observations, patterns, analysis, and insights.
03. Ideate
Brainstorming
We generated the following "how might we" statements in response to our research insights, then did a speed round of brainstorming to come up with a variety of initial design concepts.
Concept Prioritization
To decide the direction of our service design solution, we prioritized our ideas based on a 2x2 matrix of impact vs. feasibility. Ultimately, we decided to consolidate several ideas—ranging in both feasibility and impact—into an interactive museum exhibit that would support users from multiple angles.
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Design Principles
In considering change management approaches, we identified the cycle of compliance: comprised of awareness, belief, knowledge, and action. In the case of advance directives, people must first be familiar with the purpose of these documents. This awareness leads to a belief in the importance of ADs, as people recognize the value of expressing their preferences for future medical care. Subsequently, individuals acquire knowledge about the components of an AD. Finally, the cycle culminates in the completion of one's own AD, whereby individuals legally document their end-of-life wishes.
Inspiration
When envisioning our museum exhibit, we were drawn to the idea of a circular layout—something that symbolized closure, connection, and the cycle of life. Our inspiration stemmed from various museums that utilize circular structures, as well as the one-way traffic flow encouraged by the furniture showrooms at IKEA. Similarly, we imagined our museum to have controlled movement (albeit, with designated exit points and shortcuts) to guide visitors through a certain sequence of information.
04. Prototype
A museum exhibit that is contemplative, cohesive, and collective — bringing clarity to the EOL planning process through consolidated resources and spaces for personal reflection.
Museum Concept
Our museum mirrors of the cycle of compliance through interactive exhibits that promote awareness, belief, knowledge, and action regarding advance directives. This consolidation of resources reduces the cognitive overload associated with navigating a fragmented end-of-life planning process.
Visitors enter the museum from the outermost edge of the spiral. As they progress through the formation, the exhibits increase in specificity—starting with general awareness in the outer layer and culminating at a point of action in the center.
Although we originally envisioned our museum as a two-story building, we later modified the design to be single-story (shown below) to allow for semi-permanent construction within existing spaces.
Given the emotional weight of EOL planning, our museum features several outdoor alcoves where visitors can reflect on what they've learned through the exhibits. We also added emergency exits throughout the museum so that individuals can leave at their discretion.
Sketches by Sneh Chandan
Exhibit Content and Sequence
The slideshow below provides an overview of each stage of the museum, color-coded according to the cycle of compliance. Examples of exhibit components include: a welcome packet containing background information on advance directives and a sample template; a designated play area where visitors can initiate EOL conversations through games like The Death Deck—intended to destigmatize conversations that may otherwise seem taboo; and an "open house" area for consultations about EOL planning with clinical and legal experts.
Sketches by Sneh Chandan
Click below for a museum walk-through!
Classroom Prototype
To solicit feedback from several of our interviewees, we created a low-fidelity prototype of our museum concept, with basic representations of exhibit components and sequence. For instance, we hung mock-ups of interactive games in the designated play area and a mosaic of video testimonials. Additionally, we drafted versions of the welcome packet and sample AD templates to visualize how these resources would be presented to visitors. While basic, this prototype served as a foundational model to gather feedback on the museum's effectiveness in promoting EOL planning.
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Pamphlet Design
To visualize some of the potential offerings in our welcome packet, I created two complimentary pamphlet covers to bring some much-needed levity to the process of confronting and selecting a healthcare proxy.
