AutonomyAid

We are creating web-based app for elderly individuals to enhance their end-of-life experience. The name of our app is AutonomyAid: a union of two words at the center of our stated goal: we want to aid seniors with maintaining and regaining their autonomy to live out the last stage of their lives in the ethical manner they best see fit. That autonomy encompasses making and communicating preferences about health care decisions, about representation of their interest–should they become incapacitated–and about outlining the distribution of their assets. Each and every one of these areas present ethical dilemmas and quandaries that are difficult to openly discuss, thereby creating a void in our everyday vernacular.

We are intentionally creating a Web-based app (as opposed to a mobile app) to increase accessibility for elderly people who have access to public computers but may not have smartphones, or seniors who find smart phones incompatible with degenerative vision problems or decline in dexterity due to arthritis in their hands.

The inspiration behind our Project

One of our team members has first-hand experience living in a community of retirees, as her mother is an on-site manager of the community. She grew up watching elderly seniors struggle with several aspects of the sunset years. For every story of a senior passing on without chaotic circumstances, unfortunately, there are a dozen stories of sad, painful, and disturbing adversity–adversity, that could have been avoided to a large degree with the resources that our app offers.

There are three vignettes that stand out, with three different scenarios–and yet, sharing a similar ethical consideration lurking in the background–serving as a springboard for this project:

One of my mom’s close colleagues, Ben, found out this past year that his mother’s cancer had metastasized. Ben’s family, who lived in the Philippines, seemed to be completely unaware of the gravity of the situation and the difficulties associated with receiving healthcare while abroad. After talking with Ben, we realized that they did not understand what “metastasized cancer,” “palliative care,” and “hospice” implied. In fact, Ben’s family cheerfully told everyone that his mom’s cancer was gone, because the doctors could stop treatment. We faced an ethical dilemma on our part, as we were not sure how to tell Ben that his family had to prepare for the worst. Ultimately, we chose to intervene due to a cultural aspect: the deeply religious, Catholic people of the Philippines strictly adhere to burials in the homeland, instead of cremation or even burial outside of their home village. We were able to offer to be advocates for Ben’s family when talking to his mom’s oncologist, and once the family realized the gravity of the mom’s condition, we were able to convince them to fly her back to the Philippines immediately, in light of their cultural and religious mandates. This incident highlighted the strong need to have an advocate system for marginalized groups of people, such as foreigners.
Another case was presented in our Biomedical Ethics class, when the professor detailed the case of a Japanese tourist who suffered a sudden injury that left him brain dead. According to the hospital’s policy, the patient’s family was consulted and organ donation/turning off life support was strongly recommended, to the point of being pressured to make these decisions immediately, due to the scarcity of hospital bed space since the pandemic. Unbeknownst to the hospital’s ethical committee, according to Japanese cultural norms, patients who are declared brain dead are allowed to be kept on life support, and physically ending another human’s life–even in the case of turning off life support–is considered sacrilegious. In a case of poor communication and ignorance (on the hospital ethics committee’s part) toward differing cultural norms, the hospital appointed a surrogate from the ethics committee and life support was abruptly turned for the patient, in front of the grieving family that was not prepared for the sudden, traumatic intervention, causing severe mental anguish. Again, this case highlighted the desperate need for our society to clearly face and come to terms with end-of-life considerations, however difficult this subject matter is.
When an elderly resident passed away in our team member’s community, the police had no next-of-kin information on file (which was not unusual, unfortunately). In this case, our team member’s mother told us that over the two decades of her career, she has completely tuned in to the idiosyncrasies of elderly residents with no obvious relatives, and she has made it her habit to gently pry these residents for some information. In this instance, when this elderly person told this manager that she had an estranged nephew in Texas who would have to deal with the estate of this person, this manager made the resident write down on his Resident Registration Form the name and number of this relative with a note about him being the next-of-kin. That piece of paper became the central piece of evidence in the probate trial, along with the manager’s testimony after this resident passed away and left behind a very substantial estate, worth over $10,000,000. It seemed completely absurd that someone with that level of fortune thought that drafting up legal documents was a complete waste of money, giving us the idea that free legal forms should most definitely be preferable over scribbly notes on resident registration forms.

What our Project does

AutonomyAid is intended for not just the 58 million American residents over the age of 65, but for their family members and care providers as well. According to the Census Bureau and the CDC, this segment of the population will exceed 73 million by 2030, reaching 22% of the population by 2040, or one in 5 people. The app will aid this substantial group of people in 3 distinct areas, providing psychological, legal, and medical benefits. Let’s take a closer look at each area.

Psychological Impact: getting old is never easy, and facing our own mortality is one of the hardest–if not the most difficult–concepts to come to terms with. The main purpose of our app is to present seniors with the opportunity to take back control over their end-of-life decisions, as well as the decisions impacting the quality of their last stage of life. At the very core of our app is the psychological benefit of empowerment, self-realization, and self-regulation.
Legal Impact: the second core benefit is the supremely tangible benefit of creating legal protection for both the individual and their survivors. The portal not only confronts the users with the benefits of preparing the most basic legal documents that everyone should have regardless of their age: a Power of Attorney for Healthcare, a DNR, organ donation directives, and a Last Will and Testament, but our portal offers easily customizable templates to use.
Medical Impact: One feature of our application will allow elderly people to set up appointments with healthcare providers to properly execute a DNR and have it automatically uploaded to their electronic health record so that they do not have to rely on a family member turning in (or withholding) the DNR for them.

We deliberately chose to round out the central part of our project with miscellaneous, ancillary pages that seem superficial on the surface. The pages we included are: venues for watching podcasts on topics that should interest our main target demographic, as well as Book Clubs, a Music Library with links to the 60s, 70s, and 80s hits, and games & puzzles. Behind these innocuous resources was our very deliberate goal to not just offer much-needed planning tools for seniors facing their end-of-life years, but to offer a constructive way to truly enhance the quality of these seniors’ lives. How so? Medical research is increasingly pointing to a marked correlation between social isolation and mental decline/dementia. One of the most often recommended home remedies for mental decline is social and mental engagement. We wanted our users to have a deeper level of dynamic engagement with our website. We want them to tune in for weekly podcasts, for weekly Book Club Zoom meetings, and to play bingo, work on crossword puzzles, and listen to music they fondly associate with their best years. We can already see enthusiastic posts on our Forum page with people gleefully recounting where they were when that blockbuster Earth, Wind & Fire song came out, when everyone wanted to copy Elvis’s bell bottoms or Elton John’s rose colored glasses, or how they learned to scream R.E.S.P.E.C.T. from the top of their lungs to their downstairs neighbor’s dismay. Our covert message was: “you came for the tangible, no-frills legal resources, but we are going to leave you with something you didn’t even know you needed: social engagement, and a healthy increase in dopamine and oxytocin levels to combat dementia.”

There is one other nuanced, intangible benefit, but we would be completely remiss if we did not mention it: we hope that our website could cultivate a feedback loop for medical professionals, where they could benchmark their patients’ progress/decline by comparing their online activity and engagement quality on our portal. It should be easy to pull data to show how much time our users spend on puzzles, games, podcasts, classes, etc. historically. Finally, a previous project of ours gave us an idea for this platform: during the pandemic, we made an app for our senior condo association where the residents could check in daily and report their health concerns or needs. They could state what they needed from the stores, and someone would sign up to get it for them. A post-pandemic version of this app actually survived, and is still used by those who are challenged with mobility or health issues. A number of residents told us that they feel better about knowing that they check in daily, and if there was no activity from them via the portal, someone would conduct a physical welfare check to see if they are okay.

We will also have a chatbot that prompts the user with questions about their ailments and suggests occupational therapy interventions to improve their symptoms. We will also answer ethical questions pertaining to the last stage of life that are not answered by a DNR, like whether a patient wishes to receive surgery if they will likely lose motor function or if they are blind/death etc.

Our app will focus on accessibility in every possible way: from building the site in a simple, easy-to-navigate format, to using larger fonts, clear terminology, as well as offering translation services for foreign languages spoken by the largest groups of non-native speakers, Closed Captioning for videos, narration instructions, and voice-to-text features for communicating through the portal to make it more user-friendly for elderly individuals who have difficulty typing due to arthritis or other age-related difficulties.

Although there is an ongoing, divisive national debate about the ethical aspects of providing services and resources to non-citizens, we are taking a firm position on not only extending our services to elderly immigrants, but actively tailoring our website to meet the unique needs of members of other nations and cultures. In our opinion, the negligible, nominal cost of providing translation services or highlighting different cultural perspectives toward healthcare cannot be considered against our fundamental duty to provide for the elderly in our society.

Our ultimate goal is to be the best resource for our elderly residents. We have identified a number of short- and long-term developmental goals to get us to that level:

Immediate goals: to be able to provide the much-needed resources (medical forms, legal forms) to the elderly
Intermediate goals: a fully functioning site with daily posts that promote continuous social engagement. This involves posting podcasts with relatable topics (aging, longevity, estate planning, photo/video tape scanning/preserving tips, family tree services through genetic testing sites, novel medical discoveries, research opportunities, new, emerging ethical considerations, like water burial, composting burial, assisted suicide, etc.) These are topics that people do not often talk about, due to the difficult nature of some of these topics. We want to gently break down these emotional barriers to have a platform for open conversation.
Long-term development goals: ideally, we would like to introduce yet another covert benefit: becoming a lifeline to those who don’t have family to surround themselves with. Our goal is to involve the national Girl Scout/Boy Scout Council to offer local troops an opportunity to become the flip-side of “Big Brother/Big Sister,” a multi-generational relationship venue. Girl scouts and boy scouts have traditionally sought these types of opportunities–see the premise of the Pixar blockbuster movie Up!--because see the value of mutual benefits: our elderly neighbors have a lot to teach to the younger generations, while the young ones can offer friendship and companionship to the elderly. It is a win-win proposition.
Another idea for long-term engagement is incorporating something like the MasterClass Series into our platform. MasterClass offers thousands of short classes for a club-med type all-you-can-eat business model. They have offered really affordable group rates over the holiday season, so their business model appears to pivot toward extended families/communities as well. These classes range in topics from cooking to yoga, photography, creative writing, music, social studies, economics, finance, and you name it! Because of the short class time (10-20 minute session series), it should be quite palatable and enjoyable to our audience.
The end goal for our project is to allow the elderly to regain their autonomy as close to fully as possible. There is no way to identify the value of a sense of self-actualization, and self-governance for those who lived their lives in a productive manner and contributed to society for decades with pride in their modus vivendi. With the help of our resources (our aid), our users could reclaim their pride and autonomy.

We strongly feel that–although our long-term goal is most ambitious, by boldly going after becoming the most desirable place for the Baby Boomers to hang out–it is well within our reach.

How we implemented it

Given our collective technical expertise in Python, the adoption of Reflex felt like a natural choice. However, it wasn't until we fully embraced it that we realized its potential for rapid app development. The ability to seamlessly integrate both front and back end within the same Python repository, without the need to meticulously design REST APIs or set up servers, was nothing short of magical. Moreover, the built-in SQL database facilitated swift implementation of user authentication mechanisms, requiring mere minutes to set up. Not just the authentication but also implementing our chat window with GPT was greatly accelerated by the vast amount of available code examples.

Furthermore, Reflex's styling capabilities greatly simplified the process of achieving a consistent and accessible design. By utilizing features like rx.chakra.Button selectors and creating custom style objects to apply across multiple elements, we were able to maintain a cohesive appearance without redundantly specifying styles. This adherence to the DRY (Don't Repeat Yourself) principle allowed us to focus more on product development, spending less time on repetitive tasks.

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