We offer this space to Black Box Lab’s student research associates to share brief descriptions of their honors thesis and independent research. While these the underlying research projects posted here are supervised by faculty in the lab, they are initiated and carried out by students.
Coding Care: My Visit to Village Green Nursing Home
by Leila Henry, Fall 2022
This piece introduces concepts like agency, coping, and inanimacy that will be further explored in my senior thesis on how the biomedicalization of aging affects geriatric caregiving.
The entrance to Village Green Nursing Home and Rehabilitation Center in Brooklyn is hidden by scaffolding. When I visited, on a warm Monday in August, I could not tell if the concealed building bore any resemblance to the one proudly displayed in the facility’s brochure, which depicts the “Penthouse Rehab” adorned with a small sunny front lawn and red tulips. The feeling of incompleteness continued into the lobby where I was greeted by several empty cardboard boxes scattered across the vinyl floors and an unoccupied wheelchair. I would soon learn the cause of the disarray: COVID had stopped the facility’s renovations in its tracks. At the back of the disorderly room, a woman stood behind a folding table with small boxes stacked on top of it. I think she was administering COVID tests to guests.
I checked in with the woman at the front desk and sat in a folding chair. Having a moment to settle, I was suddenly aware of the overwhelming layers of sounds I was hearing: a TV playing the news, a phone ringing, rushed footsteps, a soft beeping, actually several soft beeping noises, none of which had an identifiable source. The woman at the front desk was also now joined by her coworker and they seemed to be FaceTiming a friend and explaining directions through jolts of laughter. Their loud and cheerful voices disrupted the previously chaotic soundscape.
A few minutes later, Rose, the admissions coordinator, scurried into the lobby. I had spoken to Rose a few days earlier about scheduling the tour. Her voice on the phone sounded friendly and businesslike. Today, she seemed rushed and disheveled. While shuffling me into the elevator, she explained that she was the only person “on the floor” and therefore had “very little time today.”
In the elevator, Rose confessed that she never really planned on working in a nursing home. She was somewhat randomly placed into one after graduating from nursing school at nineteen years old and now, seventeen years later, she remains in the industry.
We arrived on the second floor, one of the two Rehabilitation floors. The two units together had sixty-eight beds, all designated for people on ventilators. Our squeaky shoes joined the chorus of alarms and beeps of various tones and tempos. Those sounds, along with the fluorescent lights that bounced off of the vinyl flooring made the hall feel sterile, and more like a clinic than a place where people lived, even if temporarily.
As we walked down the hallway, Rose talked me through the facility’s admissions process. Most residents end up in Village Green because of its Brooklyn location. They are usually coming from a surrounding hospital which are “always going to be our top hospitals [that we get patients from]” Just because they are coming from another facility with a good reputation, does not not mean that a potential patient is guaranteed a spot. Rose explained that the facility has the “right to accept or deny based on needs.”
At first, I thought this meant that people were turned away because they had too many needs. I soon found out that the facility actually screens for people who need the most intensive care. The nursing home cannot accommodate people who are more active, or who have the potential to be. After all, the people living in the nursing home were not referred to as independent “residents,” but “patients,” a word that implies dependence, passivity and objectification. Elderly who would be completely dependent on the nursing home are passive and passive is manageable. If a candidate could walk, for example, they would be “inappropriate for the facility” and labeled “less desirable.” The ability to walk is a liability; it increases risk of falling and risk of wandering around and out of the building. Village Green is not unique for this: according to Rose, “it’s a lot harder to find nursing homes if you can walk.”
Rose knows to look out for “red flags in paperwork” that might signify a “less desirable.” Earlier that morning, she had been reviewing an application from a twenty-eight year old who had been hit by a car and was suffering from a traumatic brain injury. At the moment, as he was unconscious and on the ventilator, he was accommodatable. However, because he is young, there is a possibility that he could “come off of the vent and start walking again.” Though she did not say this explicitly, it was clear that Rose was not going to accept this person.
Rose soon motioned to a room and invited me to look inside while muttering “everyone’s…you know.” This vague phrasing intrigued me. I looked in and understood what she meant: two older women lay in beds next to one another. Their eyes were closed and their bodies motionless.
We continued down the hall and each peak revealed that the rooms were identical, each modestly furnished with a phone, simple dresser, and TV and occupied by two noiseless patients and their purring ventilators that crept down their throats and sometimes into their necks. Every time I stole a glance into a room, it felt like a cruel invasion into these strangers’ lives. And yet, it was clear from the assertive way she entered each room that Rose did not feel this way. It was as if the patients’ inanimacy justified their treatment as passive bodies.
This was the rehabilitation floor, and yet these people appeared so permanent in their inanimate states. Nevertheless, Rose explained that everyone is being actively weaned off the vent. The goal is to get them off in 30 days. When I asked her how successful the program was at actually getting people breathing on their own again, she admitted that she wasn’t sure.
Next, we went to the fourth floor which was split up into two units: people that have a tracheostomy tube and people in long term care. The residents in these units have been deemed unfit to go home. Rose explained that reasons for not being able to go home range from requiring intensive care, such as a feeding tube, to not having an “involved enough family,” to not being able to afford round the clock home care, which can be very expensive. In any case, for residents of these states, it is “very hard to go home.” The nursing home, with its medical technology and (often overworked and understaffed) nurses aides, sustains and enables their lives.
The patients remain in the nursing home until they are deemed fit to go home, or until they die. In the rare case where a resident in long term care can graduate to rehabilitation care and then a potential safe discharge, the nursing home must make an evaluation: What are this person’s needs? Is their home accessible for a wheelchair? Will a caregiver be there? Can the family be trusted? If the resident does not have a family, which Rose identified as the “scariest and saddest part of the industry,” the state will assign them a financial “guardian.” These guardians, though helpful in theory, come from private companies and are assigned fifty or more cases. Rose implied that these corporate guardians may not always have the best interest of their patients in mind, especially if the patient is vulnerable with dementia.
I asked Rose about what happens when a patient in the unit, or any unit for that matter, dies. She explained that first and foremost, when a patient is unresponsive and not breathing in a nursing home, they are “coding,” not “dying.” “Coding” refers to the emergency code that is announced throughout the facility when this happens. It is also a word usually used to describe representations or symbols of things as distinct from the things themselves. The patient is displaying symptoms that represent death, but not actually “dying.” “Dying” would require patients to have been actively “living” before and the facility does not treat them as subjects of life in the first place; coding is seemingly divorced from dying. During our tour, Rose told me that a code had gone over the loudspeaker earlier on the tour but I had not even realized. As with the use of the word “patient,” the language used in the facility perpetuates forced passivity and emotional distancing.
The code status not only announces that someone was unconscious or displaying the signs of dying, but also instructs nurses on how to respond to patients. If a DNR order (do not resuscitate) is not in place, the standard measure of care is to sustain the life by any means necessary. In any case, the death, or lack thereof, is both defined by and synonymous with a code. In the nursing home, death is treated as a logistical and legal concern.
The coded language also serves another purpose: it helps the aides, and likely other residents and visitors, cope with the consistent exposure to death. The language is therefore a form of protection and an effort to avoid the panic that would come from broadcasting that someone had stopped breathing over the loudspeaker.
When I asked if there are memorials or at the very least official acknowledgements of death, she responded, “Nah. We are in the industry. At the most it’s, ‘oh no, that’s so sad she was such a nice patient.’” The lack of institutional remembrance, though also probably viewed as “more efficient” by the facility, is still another example of how people in the nursing home distance themselves from the sadness that surrounds death.
We then journeyed up to the last two floors to the short term care unit. The short term care unit is for people who were deemed close to being able to go home. The dark, shiny floors and big windows indicated that this unit was the only one to have gone through the planned renovations. The patients and aides on this unit seemed more active than the other ones as patients were not confined to their beds, but were being pushed around in wheelchairs by nurses.
One nurse was giving a patient in a wheelchair a back rub. In this sweet moment, the emotional and physical distance that the institution forced onto them collapsed as they joined in physical intimacy. At the same time, besides the physical contact, the two people appeared to not even notice each other and the nurse’s gaze was elsewhere down the hall. Was this an indicator of friendship? Or a mere transaction? Or perhaps both?
I left the nursing home feeling ambivalent. On the one hand, the forced dependency and passivity of patients, enacted everywhere from initial screening processes to the treatment of death, felt uncomfortable. And yet, perhaps treating patients this way was not just a method of making them more “manageable,” but also served to help the staff and patients alike cope with aging and death. The facility was also providing affordable end-of-life care to people who in many cases, did not have another option or support system. Village Green is unique in that it is a private nursing facility that accepts medicaid, medicare and most other insurance policies. Rose explained that almost no residents were paying out of pocket . Is there a way to provide affordable care that supports individual bodily autonomy and coping strategies that still allow for the forming of intimate caregiving relationships?
Electronic Health Systems in Estonia
by Ransho Ueno, Fall 2022
Estonia has the most advanced e-health system in the world. Bertelsmann Stiftung published the data about the Digital Health Index, and Estonia had the highest of 81.92, followed by Canada’s 74.73 and Denmark’s 72.47. Digital Health Index measures how prepared the government is to use technology in the healthcare field. The question here is, how did this small country in the Baltic Sea achieve this score? The author went to the e-Estonia briefing Center in Talin to unlock the myth and found multiple reasons behind it – strong political initiative, data infrastructure, and cultural and contextual reasons.
Before diving into the reasons, let’s see what Estonia’s e-health looks like. One example is the Patient Portal System, which started in 2009. In this portal, citizens can view their data from various medical providers in one place, make declarations including donations allowance, look at their treatment bills, and more. Vice versa, all the licensed healthcare providers can access patients’ information and issue e-transcription. Surprisingly, 99% of the transcriptions were issued online through the Patient Portal system in 2019. This system benefits all the stakeholders – government, hospitals, and citizens. The government can collect patients’ information consistently, doctors spend less time issuing prescriptions, and citizens would receive the benefit of convenience.
Historically, Estonia has long been occupied by the Soviet Union. After 50 years of Soviet independence, it regained its independence in 1991, and since then, the government has had a strong commitment to the digitalization of public administration, and e-health was also achieved under its initiative. Estonia was relatively poor when it gained independence, and its way of modernizing was through digitizing the society. President Kersti Kaljulaid mentioned to CNBC that “We have a generation who has grown up knowing that you communicate digitally with your school because we have an e-school system, with your doctor because of e-health.”
Besides, its advanced digital infrastructure has also been the backbone of the success of e-health, which has two pillars: X-Road, which is the data transfer layer, and a compulsory national digital ID. The X-Road is the data exchange layer that allows secure and efficient data transfer among all the private and public sectors. The combination of the X-Road and digital ID allows the Estonian government to connect and store all the citizens’ information, as explained above. This is incredible, as in other countries, including Japan, much of the medical information is stored in different locations, making it hard for medical providers to comprehensively understand patients, resulting in ineffective healthcare.
From the cultural perspective, Estonia shared certain cultural expectations with other Scandinavian countries, including relatively transparent and evidence-based decision-making due to the widespread exposure to Western media and values even during the Soviet occupation. For instance, no severe privacy concerns have been reported since the Patient Portal system started. This is because there is full transparency in the system where citizens can view who accesses their information as all the activities are logged and available to them, and healthcare providers who violate this will be penalized. Furthermore, historically, Estonia had been the battleground of the inter-state war in Europe, and they had an urge to digitize all the citizens’ information.
Therefore, the strong political commitment to digitize public administration, well-established digital infrastructure, and cultural and historical reasons allowed Estonia to have the most advanced e-health system in the world.