Negentropic Landscapes reimagines our relationships between the concepts of death, space, institutions, territories, technologies, and politics. In much of the world, death is seen as the ultimate or maximum disorder, and this is reflected in the architecture of healthcare systems. Hospice care, in particular, is located within a fragmented end-of-life care landscape with for-profit services scattered across standalone settings.

This project imagines a way of life that explores an "inside-out" hospice model using the framework of entropy and negentropy (negative entropy). It is designed in opposition to current end-of-life architecture where aging and death are considered to be disposable. "Architecture," in this project refers to structures of thinking, protocols, and logics. By reimagining the way we think about aging and death, it aims to reverse the system of medicine that has been established through the collaboration of insurance and pharmaceutical companies. Instead of speculating on the direct impact of dismantling the current hospice model, this project offers a wider, historical, and more complex discourse with which we may think about the present.

My aim for this thesis is to inspire designers to reorient themselves when designing for dying and death and to show that hospice doesn't have to be an idea we hear towards the end of our life, it, in fact, can become a part of our life and plays a relevant role through all life stages. In order to redirect and redefine hospice care and do it justice in its ontological, ethical, and political terms we need long-term design engagement processes to reconceptualize death, sickness, and caring.

CHALLENGES

Hospice care is constructed to support the multidimensional needs of patients and families during illness and following death as well as improve the quality of life of patients near the end of their lives. However, many older adults living with a chronic life-threatening illness either do not receive any palliative care or receive hospice care only in the last phase of their illness. This is in part because capitalism pathologizes sickness as something to be fixed or cured; under these conditions, terminal and chronic illness cannot be accounted for – nor can it be responded to through care. Instead, capitalist necropolitics dehumanizes sick and disabled people by creating pain-escaping devices and drugs that become commodities to be bought and sold. Given the rising population of older adults in the U.S and the necropolitics of COVID–19, it is imperative to build expansive care systems that give older adults control and autonomy over their own death and extend support to family caregivers.

This project reimagines hospice care at the level of urban planning and community organizing to build an expansive and non-binary model for caring. It uses a participatory urban speculation approach to envision a community-led, future-facing hospice model that embodies ideas of intergenerational care. The community visioning activities designed to build this model suggests how designers, health practitioners, caregivers, and multi-generations can come together to redirect hospice care into their communities and create transparency between hospice services and surrounding neighborhoods. It also explores how long-term design engagement processes might be useful to help marginalized communities develop shared values and collective understandings of institutional problems and develop ideas for future action.

CO-CREATION: CASE STUDY

To explore what a new model for hospice might look like, I first decided to co-create a site-specific model through participatory workshops. This iteration of the project focused on the Crenshaw neighborhood of Los Angeles, home to predominantly African American communities. The percentage of residents ages 65 and older is among the county's highest. With a new subway station at the intersection of Crenshaw and Martin Luther King Jr. Boulevards and new redevelopment plans rapidly gentrifying and displacing the community, Crenshaw provides an opportunity to address the largest senior demographic in Los Angeles, a population that underutilizes hospice care services more than any other. During an in-depth interview with one of the collaborators, Dr. William Morris, a palliative and hospice care specialist, mentioned that the African American community is particularly skeptical of hospice care services because to them hospice might mean giving up on life and an attack by the healthcare system to deny them treatment. This is a community that time and again has been denied access to healthcare. When it comes to raising awareness around hospice in this community it is both more challenging and at the same time of the greatest importance to change perceptions of what hospice is or can be.

CO-CREATION: PROBING

I then started conducting workshops with geriatricians, hospice volunteers, palliative and hospice specialists, and subject matter experts from senior living facilities.

The first activity was built around the individual reflection of their community. Collaborators were asked to draw a map of their neighborhood. They were asked to define the boundaries, add in streets, particular houses, and other physical features. Finally, they were asked to include areas that offered resources for death and dying. This icebreaker allowed collaborators to introduce themselves and learn about their attachments to places in their neighborhood.

CO-CREATION: PROTOTYPE AND TESTING

Collaborators were then asked to organize their ideal community on a map of the site using 2D shapes that represented a mix of intergenerational infrastructures and volunteer-led hospice services.

The activity for the workshop was inspired by James Rojas' public-engagement and community-visioning toolkit, Place-It. Place-It uses simple tools like storytelling, objects, art-making, collaboration, and play to combine urban planning and community organizing. Planners provide the quantitative data through maps, numbers, and policy, Place-It allows participants to provide the qualitative data by expressing their personal narratives based on memories, experiences, and desires. This simple activity provides planners with a comprehensive understanding of the public's urban needs and aspirations.

Based on previous interviews with these collaborators, the map was designed to include where the faith communities in this specific neighborhood are located. The interviews revealed that the faith communities are the ones that guide the residents of this neighborhood through their end-of-life decisions. Once they completed their community models, they were asked to present their maps and explain their site arrangement. After they presented their models, inspired by James Rojas' technique, they were asked to describe an activity in the future using the model. This gave the models a life of their own.

Most collaborators organized senior living and childcare services together surrounded by green space and intergenerational activities such as gardening and arts and crafts. Some of them wanted a concert hall and an outdoor gathering space, art installations scattered around the neighborhood, and lots of green meditative space. Dr. Kaiser Scott, a geriatrician, and director of Geriatric Cognitive Health at the Pacific Neuroscience Institute placed a hospice volunteer education program adjacent to high schools to bring in young volunteers.

Everyone's arrangements seemed to gravitate towards a community core that offered the most comfortable care and connected to micro-clusters across the site that offered educational resources around hospice care. When asked to envision an activity in the future, Dr. Freddi Segal-Gidan, Director of the USC/Rancho California Alzheimer's Disease Center (CADC), who has devoted her career to the care of older adults and those with disabilities, mentioned how schools could turn into support group spaces for older adults. She talked about how nursing homes have gotten a bad reputation because they have turned into isolated islands that only older adults go to. Her site arrangement emphasized building intergenerational infrastructure.

FRAMEWORK

Entropy is defined as a degree of disorder. The second law of thermodynamics states that the net entropy of the universe will always increase as one goes forward in time. Eventually, all the universe will be reduced to a uniform, boring jumble: a state of equilibrium, wherein entropy is maximized.

Negentropy is defined as the quantity of information that enables the structuring of physical systems, by evacuating their entropy. These concepts have been extended to domains other than thermodynamics throughout history. This project takes up these principles and extends them to define the increasing disorder in our end-of-life care systems.

Entropy increases without limit in a closed system. In that sense, when our health systems become closed, there is destruction of knowledge. But when our healthcare systems are open, they return to "knowledge" which is negentropic."Negentropy" in this project suggests that collective knowledge and organizing could "manage" the entropy of our healthcare system.

FINAL PROPOSAL

Negentropic Landscapes is a neighborhood that has collectively been avoiding the lifeless equilibrium state. All matter, living and inert attune to its environment to evade equilibrium. They are agents performing a computation—collecting and storing information about an unpredictable environment and our life cycles— to adapt and predict the disorders.

This utopic neighborhood does not find its truth in making people stay in one place; it does not build walls, physical or symbolic, in order to hold on to their truths. It is a social system that recognizes that all matter is subject to a cycle of organization and decay.

Negentropic Landscapes is an approach to building communities that support processes of death and dying. Spaces are open to constant revisitations and reconstructions of their identities and future based on acceptance and openness rather than rejection and blind allegiance to the status quo. They are designed not to confine people's choices in the name of safety, but to expand them in the name of living a worthwhile life.