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Blue to Cream Gradient

Plan Your Peace

An interactive museum exhibit that encourages

advance care planning among healthy adults.

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

Blue to Cream Gradient

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.
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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.

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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.

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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. 

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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.

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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.

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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.

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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.

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Click to expand each insight below!

  • Social workers, peer support specialists, and community health workers are the connective tissue of healthcare—experiencing both strength and strain.
    At their core, social workers, community health workers, and peer support specialists are liaisons—serving as connective tissue between patients and providers; between patients and community resources; and between social and medical models of healthcare. These social service providers create a shared definition of health that prevents miscommunications and builds mutual investment in patient outcomes. While this connection is essential to providing holistic care, it may create strain for workers who straddle multiple realms. “If a patient wants to communicate with the clinical team, a peer support specialist can be a shortcut to get the doctor’s attention.” (PSS03) “[When] cultural views become directly at odds with the western medical system… the social worker gets brought in the middle, to bring these two views together.” (SW01)
  • In settings where social perspectives on health are deprioritized or devalued, interdisciplinary collaboration falters.
    While medical practitioners are guided by clear diagnostic criteria, social service providers deal largely with issues that transcend organizational and domain boundaries, each with their own challenges and metrics. In other words, traditional medicine views health through a microscope, whereas social service providers view health through a telescope. These different lenses may result in hierarchical friction, misunderstandings of roles, and disjointed collaboration between medical and social providers in certain care settings. When connective tissue is not valued, it breaks down—ultimately compromising the quality of patient care. “[Compared to doctors], social workers can be a bit more squishy in how they’re communicating with people…. But we all have a Masters of Science, and social workers do more than just the touchy feely side.” (SW01) “During one of our cross-hierarchy meetings, one of the surgeons turned to me and said, “What training do you even have?” (SW05) “Typically, social workers are advocating for patients one way, and the medical team the other way.” (SW04) “If we’re only working in silos, and we’re working against each other or not being complimentary, that leads to frustration.” (SW02)
  • A deeply siloed system shifts the burden of data synthesis onto already under-resourced social service providers.
    Originally designed to fulfill reimbursement requirements, electronic health records (EHRs) lack the capacity for seamless integration of patient medical histories. As a result, social service providers often find themselves burdened with time-consuming chart reviews that are at odds with their demanding caseloads—impeding their ability to derive meaningful conclusions that are necessary for comprehensive patient care. “When I do chart review, I want to get a full picture of what’s going on with a patient. But I currently only get snippets here, snippets there. I could spend a whole day just doing one patient’s chart review.” (SW02) "I want to be able to tell the story about what we do and how we do it, and I wish it was easier to pull this info.” (SW04)
  • Social service providers have snapshots of patient journeys. What they need is the bigger picture.
    Due to the fragmented nature of health data systems, it difficult and time-consuming for social practitioners to track longitudinal patient outcomes and provide care continuity. This obscures the big-picture view both within and beyond their own care provision. As a result, social service providers must either go to great lengths, or give up altogether, on visualizing and documenting patient journeys. “Things are not always connected back to each other.” (PSS01) “The lack of follow-up with clients is frustrating. What happened to them? Do they still need connection to services?” (SW07) “It would be nice to close the loop with patients.” (CHW02)
  • A decentralized database of community resources forces social service providers to reinvent the wheel when making patient referrals.
    Given the fragmented and outdated repository of community resources, social service providers go through roundabout and time-consuming processes to find and contact local organizations. Over time, these workers develop their own knowledge base through personal experience and word of mouth—but rarely is that knowledge passed on to the practitioners that follow them, creating a cycle of duplicative learning. “A lot of the resources out other are wrong or outdated. And then we’d have to say to the patients ‘Oh, you don’t qualify for this’ or ‘This doesn’t actually exist.’ Which is more demoralizing than it is beneficial. This is just creating more barriers to patients getting what they need.” (SW01) “We all just have a binder of different resources that we knew of or heard through the grapevine.” (SW05) “We generally have our list of go-to resources… and anything we don’t know about, we crowdsource with each other.” (SW06)
  • Burdensome administrative requirements hijack the time and energy that social service providers have to connect deeply with their patients—preventing these workers from fully utilizing their core skills and passions.
    In trying to satisfy both the administrative and relational components of their work under time constraints, social service providers are forced to prioritize one at the expense of the other. However, achieving balance may mean sacrificing their own professional boundaries in the process. This may lead to feelings of chronic underperformance and failure to meet clients’ needs, ultimately contributing to high rates of staff turnover. "Documentation and billing are a necessary impediment to doing the real work." (PSS03) “Administrative things are taking up too much time, to the point where it’s not worth it anymore.” (SW01) “You don’t need a master’s degree to fill out family medical leave paperwork.” (SW06) "The administrative side piles up, and at that point you’ve forgotten your conversation with the patient…. But when patients see you taking notes, they're not going to share everything with you. So I try to avoid that." (CHW02)
  • Social practitioners feel powerless to fundamentally change the system that they work within, resulting in harsh self-evaluation.
    Given the qualitative and nuanced nature of their work, social practitioners struggle to define success metrics for a job well done. This challenge is compounded by compassion fatigue and the inability to address underlying societal issues, resulting in the problematic tendency to gauge self-worth based on patient outcomes. “Talking with patients is the best part, but it’s also tough to realize that you don’t have all the answers and support for them.” (SW08) “It’s very intense, stressful work. Usually there’s an expiration date on clinicians in this field.” (SW05) “People go into this space because they hold the values and want to enter and disrupt these systems. But you just become pawns of the systems.” “Extension of a problematic system.” (CHW Intercepts)
  • Social service providers believe that they provide inherently human services that cannot be replicated by AI.
    Because they perceive AI to be formulaic, social service providers are concerned about its capability to comprehend and integrate the social nuances that are essential for customizing patient care. Ultimately, they worry about the impact of AI on both their own job security and patient outcomes. “AI is black and white. Social work is grey.” (SW01) “A lot of times, social circumstances don’t fit into a clinical algorithm.” (SME02) “Technology isn’t going to help us get better; it’s the relationships that will help us get better.” (CHW01) “Documenting conversations with patients is where my lack of trust in AI comes in. Much of what I’m documenting is my clinical judgement.” (SW05) “I don’t think a computer program can fully take into account someone’s 20-year history.” (PSS01)
  • AI is intangible and abstract, but social service providers are open to its potential.
    Initially, the hard-to-define concept of AI doesn’t sit well with social service providers who want to ensure their patients/clients are receiving the best possible care. However, once prompted and given the opportunity to think through specific applications, they were cautiously optimistic of its potential. "Could Al actually take bias out of social work?" (SW01) "Maybe Al could democratize access to community resources." (CHW01) “AI has untapped potential.” (PSS03)
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Our synthesis board, color-coded based on observations, patterns, analysis, and insights.

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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.

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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.

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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.

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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

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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.

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Sketches by Sneh Chandan

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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.

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It's always too soon, until it's too late.
Plan Your Peace.

The Team

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Sneh Chandan, Isabel Alexander, Evelyn Syau, Atchayaa Krishnan

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