Advanced Directives for Dementia
Value sensitive design research project for HCD 450: Methodologies and Research Frameworks in Human Centered Design.
Project Objective
Introduction
Advanced care planning (often used interchangeably with end of life planning) is the process by which decisions are made around what should or should not happen in an individual's end of life care. Advanced care planning is ideally a collaborative process between an individual, their family, their healthcare professionals and their litigators. A number of artifacts are often the result of this planning, most notably Advanced Directives.
Advanced Directives (ADs) are a collection of documents that should include designating a durable power of attorney for healthcare (or healthcare proxy) and a detailed living will. In some states, ADs also include official documents, such as Physician’s Order for Life Sustaining Treatment (POLST), that are used in the case of a healthcare emergency to determine a course of action.
The purpose of these documents is to inform an individual’s family, friends and healthcare providers of their end of life wishes. Information in their ADs range from who should be present at the time of death to whether or not a feeding tube should be utilized when an individual no longer chooses or is able to eat.
No single, standardized form could likely represent an individual’s decisions around the end of their life - ADs are as unique as the individual preparing them. However, there are a number of limiting factors that may prevent individuals from preparing any type of artifact for and with their families. A few are detailed here:
Disparities
According to one study from 2015 (Rao, et al., 2014), a survey of 7,900 nationwide participants revealed that only 25% of participants had an advanced directive. Of that 25%, the majority were white, with only 171 black participants and 178 Hispanic participants having an Advanced Directive.In the same survey, 37% of individuals with post graduate education had an Advanced Directive, compared to those with some college education (25.5%) or just a high school diploma (14.3%). This indicates that while there is a good understanding of advanced care planning among those identifying as white or those with higher levels of education, disparities related to socio-economic factors do exist in end of life decision making and care.
Understanding and efficacy
A study conducted in Maryland (Pollack, et al., 2010) found that out of 1195 participants, only 34% had ADs. Those without ADs identified lack of familiarity with them (27%), being too young or healthy to need one (14%), or uncertainty of the process for adopting one (11%) as reasons for not having one.This finding illustrates a clear disconnect between what most individuals think advanced care planning constitutes and having one in place.
Addressing unique disease states
Good information is available around general advanced care planning and standard Advanced Directive forms. However, there appear to be gaps in understanding around advanced care planning for individuals with dementia related conditions. According to Dementia Directive.org, “dementia is the number one reason people lose the ability to guide their own care.”
It is my hope that this project can uncover challenges related to advanced care planning for dementia and create a more holistic approach to end of life planning. The objective of my HCD 450 project is to explore access and understanding in advanced care planning in dementia, especially Advance Directive documents and other artifacts, and expand knowledge around what approaches are most beneficial.The objective of my research is to explore access and understanding in advanced care planning in dementia, especially Advance Directive documents and other artifacts.
Goals
Understand user experiences with advanced care planning (end of life planning) from diverse user perspectives: healthcare professionals, family members, patients, aging individuals
Uncover challenges related to standard advanced care planning and specialized advanced care planning, like that for dementia related illnesses
Discover potential solutions to better equip individuals and their families for conversations and decisions with their health care providers.
Design Sprint No. 1
Desk Research
Competitive Analysis
I performed a competitive analysis on three major digital platforms that provide guidance to individuals and families in creating advanced directives. This method was used to help me better understand what user needs are being met and what needs require further exploration.
Five Wishes
Documents & scripts for end of life planning
Pros: Diverse user groups (patients, families, communities, health care organizations.)
Cons: Confusing IA; multiple portals
The Conversation Project
Series of guides for individuals and families
Pros: Condition agnostic, resources for stages in life
Cons: Reliant on paper; content feels a bit general
Dementia Directives.org
Informational website with expert informed dementia specific content
Pros: Condition specific; content tailored to stages
Cons: Reliant on paper; User action is very unclear after download
User Interviews
In order to better understand how individuals conceptualize end of life planning as related to dementia, I needed self-reported, qualitative data as a baseline for analysis and recommendations.
I performed four interviews with individuals who had experienced dementia in a family member. Due to the sensitive nature of this topic, my participant pool was quite small and limited to individuals I had established relationships with. I believe that additional interviews with strangers would yield additional barriers and opportunities, and given the opportunity, I would interview not only family members, but care team members as well.
Participants
Two men, two women
Secondary degrees
Ages 29 - 42
Midwest & West Coast urban areas
Full time employment
Protocol
Establish Rapport: Focus on personal definitions and set up the user up to approach the interview from a personal vantage point.
What is your personal definition of a ‘good life’ at the end of life?
Describe what you may know about advanced care planning.
Deep Focus: Asks users to contextualize their experience and provide background information and insights into dynamics, emotions and barriers in dementia related illnesses.
How is dementia the same as other conditions?
What is one thing you wish you had known about dementia before your experience with it?
Feature Exploration: asks users about potential features or tools to research, understand, access to advance directives and advanced care planning in dementia
Tell me how you would go about finding information about Advance Directives.
How could technology support understanding and creation of Advance Directives?
Contextual Inquiry: very basic observations of users visiting https://dementia-directive.org/; note taking of actions, interactions and narration. Asked to describe experience and describe potential solutions for future state
How would you describe this experience?
What changes would you make to this experience?
Interview Analysis
To analyze my user interviews, I utilized Reframer Study (part of Optimal Workshop suite) to collect, code, and analyze interview observations from my transcripts and notes.
The top three codes reflect the ‘storytelling’ aspect of the interview protocol. Because I asked quite a few contextual family history questions, this information was given alongside exposition of relationship dynamics.
The surprisingly numerous codes? Feelings like ‘control’ and ‘fear’, specific information delivery formats, like ‘form’, and solutions like ‘support’.
Reframer Observation code list
Top three codes:
Background info
Family dynamics
Lack of information
Primary barriers?
Lack of information
Lack of clarity
Avoidance
Reframer Bubble chart: the larger the bubble, the more frequently the tag appeared in proximity to the other tags in an observation. This chart shows that ‘lack of information’ frequently appeared alongside tags like 'eduction’ and ‘support’.
Affinity Diagramming
In an effort to externalize and create meaningful clusters of my research insights, I created an affinity diagram based on my observation tags and key interview pull quotes. Once organized, categories were assigned to the data: Values, family systems, positive emotions, negative emotions, disease symptoms/state, barriers, channels of access, potential solutions, outcomes and user interface.
Personas
Two distinct personas were created based on my (limited) interview data and are described in depth below.
Jean Dixon
Jean Dixon is representative of user interview data involving older parents who assume caretaker role or are asked advice from family members. She is approaching sixty, with family history of dementia and was a full time caregiver for her mother with Alzheimer’s, who was recently moved to an advanced Memory Care facility. She has a lot of anxiety that she will have Alzheimers Disease as well.
Jean has a working understanding of advanced care planning and some knowledge of Advance Directives, but wonders what can be done for her own health. and wants to set up her own family for ‘the worst case scenario’.
She doesn’t want to lose her autonomy, but understands that sometimes that is the case and is interested in alternatives to traditional ALF or memory care facilities - ‘dementia villages’, as well as complementary medicine.
Jean is somewhat technologically savvy; she primarily uses email and Facebook to communicate with friends and family, and utilizes online shopping for convenience, but not familiar with cloud based storage platforms. She still prefers to fill out paperwork by hand.
Her support system consists of her church reading group, a few close friends and her adult children - she also utilizes a support group at her mother’s ALF facility.
Evelyn Hamilton
Evelyn is representative of user interview data involving younger professionals with aging parents and a grandparent who passed away from dementia.
Evelyn is a tech savvy, organized professional, whose grandfather passed away last year from dementia complications. Her own parents are getting older, and Evelyn wants to be proactive in setting their affairs in order and currently attends her parent's medical appointments. She also follows dementia awareness social media accounts and plans to participate in the 'Walk for Alzheimer's' later this year.
Her support network consists of her brother, her husband, her close friends and colleagues.
Design Sprint No. 2
Scenarios
“After attending a recent support group at her mother's memory care facility, Jean Dixon is interested in learning more about her own risk of dementia and beginning her own advanced care planning. Despite the social worker being very knowledgeable about these topics, Jean feels overwhelmed by the information and wishes she had a resource to consult at her own pace.
The materials provided at the support group are informative, but Jean feels as though these pamphlets and forms won't be convenient to share with her adult children, who primarily use email. Jean knows she could find similar information on Facebook, but she is concerned about the validity or expertise of those sharing that information.
One flyer from the support group describes an online tool that provides information about dementia risk and a comprehensive advanced care planning toolkit, as well as tools to connect with experts. Jean is curious about this platform and decides to explore the dementia risk information on her home computer.”
User Journey Map
Jean Dixon’s UJM visualizes the experience of finding a digital Advanced Directives for Dementia tool and allows for ideation around potential design solutions to solve barriers and build upon positive experiences. Here we are experiencing Jean’s story, the good, the not so good and the just plain bad, in hopes that a proposed design solution can support her through
User Journey Map for Jean Dixon
Key Task Flows
Task Flows illustrate the motivations and primary steps that a user takes to complete a task or accomplish a goal and help us to visualize the motivations and primary steps that a user takes as they complete a task or accomplish a goal.
Here we can see the two primary tasks Jean Dixon would undertake in utilizing a digital advanced care planning for dementia tool:
Value Sensitive Design Principles + Feature Affinity Diagramming
Given the small number of participants in my data collection, I shifted my research framework from intersectional design to value sensitive design.
Value sensitive design is a research framework codified by two researchers at the University of Washington: Batya Friedman and David Hendry. This framework seeks to provide structure and tools for the design process based on human values. Key to a value sensitive design approach are “analyses of both direct and indirect stakeholders; distinctions among designer values, values explicitly supported by the technology, and stakeholder values; individual, group, and societal levels of analysis; the integrative and iterative conceptual, technical, and empirical investigations; and a commitment to progress (not perfection)” (Friedman, Hendry, and Borning, 2017).
This framework operates on thirteen independent principles: Human Welfare, Ownership & Property, Privacy, Freedom from Bias, Universal Usability, Trust, Autonomy, Identity, Calmness, Informed Consent, Accountability, Courtesy, and Environmental Sustainability.
These principles guide design ideation to address the needs of stakeholders via individual values, which vary from person to person. This approach is especially relevant to discussions and decisions around end of life planning, and in particular, end of life planning for dementia. In an effort to generate product features, I organized potential features around the thirteen VSD principles using a ‘closed’ affinity diagram:
Affinity Diagramming for Product Features based on Value Sensitive Design Principles
Findings
Emerging Themes
Barriers: Internal (emotional) vs. external (systemic, interpersonal)
As expected, barriers to ADs in Dementia Related Conditions are numerous and range from internal barriers (strong emotions) to external (lack of access to resources and understanding, interpersonal emotions). ‘Avoidance’ was the most common barrier, and my limited research suggests that barriers may be more internal than external. However, systems of knowledge and understanding are often closely tied to socio-economic conditions, as demonstrated by the second most numerous barrier, ‘Lack of Information’. 'Proactivity' and 'prevention' were the most closely associated solutions to ‘lack of information’ and additional research is needed to uncover whether or not an internal barrier is directly correlated to an external barrier, or if barriers exist independently.
Values: Individual vs. community
Throughout the data collection and analysis phase, it became clear that values drive conversations around end of life planning i.e. What does the stakeholder find valuable at end of life? What is the stakeholder’s definition of a good ‘end of life’? Are these values reflective of personal values or community values? How are values between distinct stakeholders reconciled? These questions should guide continued research efforts, as any proposed solution must account for the variety in both individual and community values.
Dynamics: Parent <> child, grandparent <> grandchild
Interpersonal dynamics play a key role in end of life planning discussions. From my research, I could gather that relationships to parents with dementia are different than those relationships between grandparents and grandchildren. Grandchildren seem much more engaged with the idea of end of life planning and mentioned often the need for a digital tool to make the education and execution process simple and clear. My assumption is that these relationship dynamics shift considerably when a care team (doctors, nurses, social workers) are introduced, and these dynamics warrant further investigation.
Emotions: Negative (fear, shame, anxiety) vs. positive (control, freedom, happiness)
Solutions: Tangible vs. intangible
The majority of interviewees were highly solutions oriented, and these solutions ranged from tangible (checklists, forms, FAQs) to intangible (conversations, community support, expert opinions). The range of solutions suggests that a successful product should include a system of complementary approaches, such as a ‘primary solution’ like ‘education’, and a secondary solution, like ‘support’.
Tools: Digital vs. physical tools
Tools described throughout my data analysis and design ideation were primarily digital, but given the current nature of documentation in end of life planning, there needs to be an emphasis on the information flow from a digital tool to a physical document.
Insights
Insights are unique points of view to inform design principles based on established research themes. My research has established the following as key insights to guide further design ideation:
Value centric
Values played a large role in personal definitions, background information and descriptions of solutions
Content requirements
Descriptions of solutions included content aspects like tone, audience appropriateness, clarity of language and information. These solutions could be further expanded upon with thoughtful UI and clear information architecture and user flow.
Significant barriers
All participants described one barrier or another to understanding and having an advance directive in place for their loved one - a solution should account for both emotional barriers, like denial or avoidance, as well as access barriers, like health inequities
Conclusions
Discussion
Despite measured success of Advance Directives in easing patient and caregiver burden in end of life planning, there are still a number of limiting factors:
Lack of understanding
Barriers to access
Non-specific disease states or confusion around disease states
The primary goals of this research project were to understand user experiences with advanced care planning (end of life planning) from diverse user perspectives: healthcare professionals, family members, patients, aging individuals, uncover challenges related to standard advanced care planning and specialized advanced care planning, like that for dementia related illnesses and discover potential solutions to better equip individuals and their families for conversations and decisions with their health care providers.
Given the timeline, scope and sensitive nature of this research topic, I would conclude that my research did not achieve the first goal of understanding advanced care planning from diverse perspectives. All participants were white, employed, educated, and within fifteen years of my own age. Additional research should include individuals outside of these demographics, and the interview questions should be vetted by individuals outside of these demographics to ensure sensitivity, clarity of language, etc. For this reason, I shifted my initial design research framework from an inclusive or intersectional framework to a value sensitive design framework, in hopes of identifying through individual values, insights that could inform design and feature ideation.
Value Sensitive Design & Principles
Why Value Sensitive Design?
As described previously, Value Sensitive Design or VSD, is a design research framework that accounts for interactions within a user’s value system, rather than approaching the user as a singular problem to be solved. The tools and methods establish design ethics as a focal point in our design process, rather than an afterthought. VSD considers the spectrum of human experience, and in Advanced Planning for Dementia, helped provide scaffolding on how a solution should consider how technology is shaped by social influences.
Human values, like autonomy, privacy and freedom from bias, do not exist in a vacuum. Our values directly influence - and are influenced by - a complex system of values that are in a constant state of interaction with family, community, societal and global values. In utilizing Value Sensitive Design as a design research framework, this research attempts to account for these complex value relationships and lay groundwork for deeper, more focused work on building out tailored solutions for Advanced Care Planning in Dementia.
Utilizing VSD could help a future design strike a balance between values like ‘Autonomy’, ‘Privacy’ and ‘Human Welfare’ by considering how a feature like a user profile might evolve over time as a dementia condition progresses, and the power dynamic between a person with dementia and their care partner adapts. Design methods that consider a wide range of stakeholders are central to VSD, and in the context of creating features that address complex and sometimes contrary needs, this inherent consideration feels appropriate.
Design Principles for Advanced Directives in Dementia Related Conditions
My preliminary research has demonstrated the relationships between ‘barriers’, like ‘lack of education’ and ‘fear’, and reticence to prepare for Advanced Planning in Dementia as correlated. The following Value Sensitive Design principles are those I consider most central to features in creating a technological solution to barriers in Advanced Care Planning in Dementia
Universal Usability: Simple, audience appropriate user interface. Audience appropriate design choices as well as an emphasis on web accessibility; consider progressive ‘modes’ of design for evolving disease state, or modes for those in care partner or team roles.
Calmness: Clarity and specificity in IA and content. A technological solution should utilize clear and consistent information architecture to establish clear user task flows without creating user confusion or frustration. Consider staged onboarding to alleviate emotional overload.
Autonomy: Consider features to provide support, connection and community i.e. resource content, community support, chat, FAQs; provide adequate affordances and intrinsically motivate users.
Future Work
This project initially proposed an inclusive design framework to help uncover and possibly address these issues of equity and access. Future work should focus on understanding the value systems and relationships of marginalized individuals. This requires co-design or participatory design methods, as this researcher acknowledges gaps in understanding how value systems are influenced by systems of oppression.
Most available tools do not include language to address unique or co-morbid disease states like vascular dementia, Alzheimer’s Disease or Fronto-temporal Degeneration. Additional research methods are needed to establish unique or related value systems for individuals living within this disease constellation:
Expanded contextual inquiries
Continued in depth user interviews and analysis
Co-design or participatory design
Unique surveys for patients, families, healthcare workers, etc.
Once additional insights are collected, analyzed and organized, a proposed design solution would benefit from continued wire framing, wire flows and eventually, a high fidelity prototype. Stringent usability testing should be conducted on a high fidelity prototype in order to continue iterative refinement of a solution for Advance Planning in Dementia Related Conditions.
This project is dedicated to Rollie Wirt and his family for their unwavering courage and grace in the face of a terrible unknown. To learn more about Frontotemporal Degeneration, please visit the Association for Frontotemporal Degeneration.
Bibliography
“Dementia Directive FAQs.” Advance Directive for Dementia. Dr. Barak Gaster. Accessed February 3, 2020. https://dementia-directive.org/faqs.
Pollack, Keshia M., Dan Morhaim, and Michael A. Williams. “The Public’s Perspectives on Advance Directives: Implications for State Legislative and Regulatory Policy.” Health Policy 96, no. 1 (2010): 57–63. https://doi.org/10.1016/j.healthpol.2010.01.004.
Rao, Jaya K., Lynda A. Anderson, Feng-Chang Lin, and Jeffrey P. Laux. “Completion of Advance Directives Among U.S. Consumers.” American Journal of Preventive Medicine 46, no. 1 (2014): 65–70. https://doi.org/10.1016/j.amepre.2013.09.008.