In November 2022, the New Yorker published a devastating report on the state of hospice care in the United States.¹ In “How Hospice Became a For-Profit Hustle,” Ava Kofman describes how an end-of-life treatment approach that aims to provide comfort rather than cure can make patients sick. For years, Kofman has been tracking the state of the difficult-to-understand and unevenly regulated hospice industry, interviewing sales representatives, untangling corrupt court cases, and compiling a litany of Medicare frauds—from shell corporations to doctor malpractice to hospices blatantly instructing employees to fabricate patient records. Such schemes are, of course, more than just an orchestrated welfare grift: they ruthlessly exploit people who need healthcare but are struggling to access it. Sometimes they are death sentences.

This violence is usually perpetrated by for-profit hospice companies—a concept that would have been anathema to the group of nurses, doctors, clergy, and activists who first brought hospice care to the United States in the early 1970s as an anti-healthcare establishment movement that wanted to change the way people die. In the intervening half century, hospice, as Kofman summarizes, has mutated “into a twenty-two-billion-dollar juggernaut” that is driven not by ideals but a bottom line: “For-profit providers made up thirty percent of the field at the start of this century. Today, they represent more than seventy percent.”²

While Kofman’s investigation focuses on for-profit hospices and how they weaponize Medicare against both patients and the state, it also clearly indicates that hospice workers too are a casualty of this system. This problem is far from new.³ Hospice work suffers from the same historical undervaluing that plagues all home health labor, which has long been low-paying, often non-unionized, and relegated to women, working-class immigrants, and people of color.⁴ It is no coincidence that for-profit hospices primarily operate through home care, only rarely opening inpatient facilities.⁵ Noticeably, as their market share has grown, so too has the pay gap between home- and facility-based hospice jobs.⁶ Throughout, hospice care has become less visible to both the public eye and to the state. This loss of spatial legibility, while in no small part driven by patient preference, has enabled corporations to get away with both wage theft and life-threatening malpractice.

As the United States continues to reel from the pandemic-era revelation of just how much hidden care work props up capitalist society, Kofman’s report provokes timely questions.⁷ What is the relationship between care labor’s devaluation and the shifting spatial conditions in which this labor is performed? And how might the spatialization of hospice care be thought differently so that patients and workers are prioritized over profit? A window might be opened by considering Kofman’s portrait of the present through the lens of a largely forgotten history, one that begins and ends in the quiet suburb of Branford, Connecticut.

61 Burban Drive

Branford’s soft hills and winding, well-maintained roads embody a Connecticut idyll: mostly White, high median income, someone else to mow the lawn. But tucked off Route 1, beyond sight from the road, there is a glitch in the landscape, if you know to look for it. The long, low-slung brick structure at 61 Burban Drive has no inhabitants. Its marshy suburban grounds were, until earlier this year, a favorite daytime walking area for dog owners and retirees—and judging from the constant debris of food, cans, and cigarette butts around nearby benches, a nighttime haunt for another crowd. A Styrofoam plate of cat kibble sat behind one of the columns of the entryway awning. Some days it was full; others, close to empty. It was always soggy.

This is the former Connecticut Hospice, the first purpose-built, freestanding inpatient hospice in the United States. Designed in 1974 and completed in 1980, it embodies the beliefs of a modestly visionary movement that aimed to change how people perceive and experience death. But just as hospice care has transformed from an idealist grassroots practice into a highly codified mode of treatment subject to labor and financial extraction, 61 Burban Drive no longer operates as it used to. The last hospice patient left in 2001; today, the building is being converted into senior housing. Once heralded as an exemplar of innovation that would set the standard for subsequent hospices, its remarkable worker-supportive spatial features—a four-bed patient layout, an attached preschool, and a “scream room”—have been implemented in almost no other facilities.⁸ For hospice workers who solely make home visits, the favorite model of for-profit companies, such features would be difficult to even imagine. As the hospice movement left its beliefs in the power of considered design and in caring for its own caregivers behind, the Connecticut Hospice’s most ideal-driven architectural gestures became increasingly less influential—and in some cases, like the building itself, even obsolete.⁹ But this disposition need not be a permanent one.

Hospice as spatial practice

The US government defines hospice as end-of-life treatment that “provides comprehensive comfort care as well as support for the family” while “attempts to cure the person’s illness are stopped.”¹⁰ To qualify for hospice, a patient must have received a terminal diagnosis and a prognosis of less than six months to live. As the government considers hospice “an approach to care,” it further defines it as “not tied to a specific place.”¹¹ It can occur in a patient’s home, a dedicated facility, a nursing home or other long-term, residential care institution, or a hospital.

While this placeless conception of hospice is now widely accepted and practiced, the modern hospice movement was inspired by and named after a historical building typology—the hospice of the early Christian era—and conceived as an inherently spatial practice.¹² Specifically, hospice was formulated, in the 1950s and ’60s, as a care philosophy that offered an alternative to dying in a hospital, an experience that was becoming increasingly common and increasingly traumatic. Average life expectancy in the United States had risen dramatically in the first half of the twentieth century, from fifty to sixty-eight years, and, as a corollary, death from incurable chronic illness became more prevalent.¹³ The medical establishment, however, did not react in step. Rather than develop new approaches for handling the painful, often slow declines that such diagnoses harbingered, hospitals—sites of both exploding medical knowledge and an arguably naïve postwar technological optimism—vigorously attempted to cure patients until almost the moment of death.¹⁴ As a result, pain control and symptom management were unevenly administered during a patient’s final weeks and days. (This was especially true for women and people of color, whose expressions of discomfort were more likely to be downplayed by doctors.)¹⁵ Caretakers, friends, and families of the dying, too, experienced increasing trauma as they watched this suffering unfold in spaces that were perceived as “unfeeling, uncaring, and impersonal.”¹⁶

In an act of protest against the awful hospital deaths she witnessed, Cicely Saunders, a British nurse, social worker, and eventual doctor, undertook pioneering research on end-of-life care and pain control in the 1950s with a mind toward reform. By the early 1960s, she was convinced that for such reform to be deep and impactful, it could not occur within the space of the hospital, and so she began planning the first contemporary hospice. It would be a purpose-built, freestanding inpatient facility in London, only for terminally ill patients; it would not attempt to cure, nor would it wrap patients in the band-aids of avoidance and denial so overused by hospital doctors.¹⁷ Instead, its carefully designed spaces would offer workers and families a setting of respite and calm, which would provide patients with community, attention, comfort, and acknowledgment, as well as a social support network of loved ones and caretakers, with a stated goal to treat their “total pain.”¹⁸

St. Christopher’s Hospice, designed by the architect Peter Smith in close collaboration with Saunders, opened in South London in 1967 as the first purpose-built space for modern hospice care.¹⁹ The inclusion of care workers within the framework of treatment—a radical notion within the medical establishment at the time, yet one that the US healthcare labor movement was also starting to seize on—was crucial to Saunders.²⁰ If care workers were not themselves valued and provided for, how could they possibly be present for others?

In 1963, Saunders took her research on a lecture tour in the United States, trying to plant the seeds of hospice. One took root in Connecticut. Among the audience members at her talks at the Yale School of Medicine on April 2 and 3 was Florence S. Wald, then the dean of the Yale School of Nursing.²¹ Saunders’s lecture opened a door that would lead Wald to resign her deanship in 1967 and dedicate herself to bringing hospice care to the United States.²² Her husband, Henry Wald, was similarly convinced. He closed his engineering practice in the late 1960s and joined Florence’s endeavor, heading back to school for a master’s in architecture, with the intention of laying the groundwork for an inpatient facility.²³ As only one other hospice (St. Christopher’s) had ever been designed to serve as a precedent, the Walds felt it was crucial to undertake careful study of the potential spatial, technical, and programmatic aspects of a dedicated hospice building.

With guidance and encouragement from Saunders, the Walds gathered a group of New Haven–based nurses, doctors, clergy, and laypeople to form the first hospice organization in the United States: Hospice, Inc., incorporated in 1971.²⁴ Hospice, Inc. would offer both inpatient and home care, the latter of which could be launched relatively quickly and begin to bring in funds.²⁵ Planning and design of the inpatient facility began as soon as the organization was formed.

“The architectural setting is a major contributor.”

A 1972 proposal for the site selection and schematic design of the inpatient facility provides a look into the romantic, somewhat vague, but passionate approach of the early Hospice, Inc. days. This attitude would shape the design of the Connecticut Hospice.²⁶ According to the Walds and the organization’s other founders, a specific, carefully planned building was needed to carry out the goals of hospice:

The plans for the building and site are predicated on the hypothesis that the services can best be provided by a system in which the architectural setting is a major contributor... The structure should convey the philosophy and goals of the Hospice program that is, to maximize the quality of life of patients, to serve the family as well as the member who is ill, and to know what staff needs to function well and provide for those needs.²⁷

Like Saunders, the Walds considered the patient’s support system, including their paid care workers, an integral part of hospice:

We recognize that those who help the terminally ill, whether family, friend or worker expend tremendous energy which needs replenishment. Therefore the quality of the ongoing relations of one worker to another, especially in the openness and concern for one another, is essential to sustain the Hospice community. In this facility we will question certain values. For example how important is privacy? What kinds of people and skills help?²⁸

The stated intent to “question certain values” through the facility’s design would eventually lead Hospice to hire Lo-Yi Chan, a cofounder of the New York–based firm Prentice & Chan, Ohlhausen, as the building’s architect. A young yet accomplished practitioner, Chan had never designed a healthcare facility. This very lack of experience, however, was “a major reason why he was hired,” as the founders of Hospice, Inc. expressly did not want to work with an architect with preconceived notions of what a healthcare space should be.²⁹ Upon receiving the commission, Chan traveled to London in 1973, observing St. Christopher’s use patterns and interviewing patients.³⁰ Like Saunders and Wald, he began to draw a distinction between what hospital architecture prioritized—efficiency, technology—and what the ideals of hospice care demanded instead.

In close consultation with the Hospice, Inc. team, and with the Walds in particular, Chan completed the design for the Connecticut Hospice in July 1974.³¹ The facility was built over the next six years, and on July 7, 1980 received its first patient.³²

Foregrounding care worker needs

The Connecticut Hospice was a modest two-story redbrick building with generous glazing, encompassing approximately 42,000 square feet.³³ By multiple accounts, it was unimposing, inviting, and fit seamlessly into the landscape, more like a small-town civic building than a mega-hospital.³⁴ Its interior was organized around a long corridor: administrative spaces on one side, patient spaces zigzagging along the other. Within the corridor itself were two freestanding nursing stations that served as the primary nodes connecting patients and staff. The patient spaces were carefully perforated and layered in plan to encourage movement and create opportunities for community, connection, and a sense of life: first, public common rooms, dining areas, and a chapel; next, patient rooms; then a shared interior greenhouse hallway; and, finally, two communal outdoor terraces. A partial mezzanine level, almost entirely programmed for staff use, sat atop the corridor and first-floor administrative spaces.

Three features are especially key to considering the building’s attitude toward care workers. The first is its bed configuration: out of its forty-four total beds, just four were in single rooms (usually reserved for special cases, such as patients with infectious diseases). The remaining forty were distributed across ten four-bed rooms. John D. Thompson and Grace Goldin note in The Hospital, their canonical history of the typology, that “no hospital problem has generated more heat in modern times than the issue of privacy, particularly in the United States,” and this would eventually become true for hospices as well.³⁵ But among the founders of the modern hospice movement, it was an axiom that private rooms isolated patients and drove them further into loneliness. Crucially, it was also easier for nursing staff to monitor and care for patients in clusters than in individual rooms. As Dr. Sylvia Lack, Hospice, Inc.'s first home-care director, and Chan explained to a journalist in 1976, the configuration was developed with the well-being of not only patients but also care workers in mind. The low partitions Chan placed between rooms allowed staff to easily see patients from wherever they were, and his design of the rooms themselves allowed patients and their families to assist staff in checking in on other patients, contributing to the emotional labor of routine caretaking.³⁶ Former Connecticut Hospice workers recall that the relationships between patients in these shared spaces both enriched and relieved their responsibilities.³⁷

A preschool was another key spatial and programmatic element of the Connecticut Hospice that supported the imperative “to know what staff needs to function well and provide for those needs.”³⁸ Incorporated into the hospice in early 1982, the Charlie Mills Preschool ran a ten-month, five-day-a-week school year for three- and four-year-olds.³⁹ One of the only such programs ever to exist at a hospice in the United States, and certainly the first of its kind, it thrived for at least six years, usually hosting around twenty-five children at a time. Attendees included children of staff as well as local residents. And while the preschool’s presence ended up providing, per multiple accounts, significant benefits to patients, it was originally conceived for the benefit of children and staff.⁴⁰ Dawn Ralston, whose mother, Dawn D’Amato, was a nurse’s aide at Connecticut Hospice from 1980 to 1984, shared deeply fond memories of attending the preschool in a 2020 interview and said that it “absolutely” influenced her own decision to work in hospice as an adult.⁴¹ In the same conversation, D’Amato noted that the facility lessened her load as a parent.⁴²

Among the design gestures that aimed to support both laborer and patient, the most explicitly worker-oriented feature in the building was also its most architecturally experimental. The “scream room,” tucked away at the northern end of the mezzanine level, was an ellipsoid, soundproof, fully carpeted volume of 114 square feet.⁴³ A stepped platform, carpeted in the same beige as the walls and floor, rose toward the ceiling, where a large skylight swooped down to meet it. There were no other light sources, electric or otherwise.⁴⁴ The room’s furniture consisted of a single bean bag.⁴⁵ This otherworldly interior—more akin to a set piece for a Pierre Cardin ad than to an institutional break room—was Chan’s “idea of architectural therapy”: “a nonobjective space for ventilation of emotions and replenishment of energy” that would “cool the psyche.”⁴⁶ During a particularly difficult shift, a nurse could leave the floor and head upstairs to yell out their frustration, cry, or simply relax in the swaddled room, whose rounded shape made it, according to Chan, “almost womblike.”⁴⁷

Its genesis is as personal as the room is unusual. In the 1970s, Chan had a neighbor in primal therapy, the psychotherapeutic method developed by Arthur Janov that directs patients to release their trauma by vocalizing it. He recalls hearing this neighbor making guttural cries—and though this worried Chan at first, other neighbors explained that it was in fact a healing practice.⁴⁸ The scream room was intended to provide a space for this same type of catharsis, and, in doing so, to address the hospice movement’s stated aim to take care of professional caregivers.⁴⁹ It was without precedent in healthcare architecture.⁵⁰ In recent interviews, four former Connecticut Hospice workers—D’Amato, Deborah Gleason St. John, Genevieve O’Connell, and Dianne Puzycki—all shared unanimously positive impressions of the scream room and cited it as a necessary part of any hospice facility.⁵¹ Puzycki remembered how calming it was, and the advantage of it being hidden away from the main circulation paths, “so that nobody knew you were having a hard time.”⁵² “Everybody loved that room,” said O’Connell. “Sometimes, especially after a difficult conversation with a patient’s family, you just needed to go cry, or go look up at the stars.”⁵³

The crush of the market

That was then; this is now. In the decades following the Connecticut Hospice’s opening, none of its worker-oriented spatial features—the four-bed rooms, the integrated preschool, the scream room—were widely copied.⁵⁴ Instead, as the hospice movement grew in both scope and scale, providers were faced with increasing regulatory considerations, rising costs, and changing consumer preferences that reflected a nationwide trend toward the commercialization of healthcare spaces. As a result, hospice soon began to be shaped less by ideals than by the immiserating pressures of market capitalism.⁵⁵ As Emily K. Abel diagnosed in a perceptive 1986 article,

The early leaders of the hospice movement shared a number of attitudes with the founders of the alternative institutions of the 1960s and early 1970s: nostalgia for simple, old fashioned ways, dissatisfaction with bureaucratic and authoritarian institutions, faith in the power of nature, a determination to avoid domination by experts, and a desire to improve the quality of personal relationships. However, as hospices have become better established, they gradually have been incorporated into the dominant health care system and have lost their uniqueness.⁵⁶

Many factors contributed to this integration of hospice care into the mainstream, but perhaps the most consequential was Congress’s passing of the 1982 Tax Equity and Fiscal Responsibility Act, which created a provisional Medicare hospice benefit.⁵⁷ Hospice advocates generally supported the benefit, as it promised to widely extend the promises of hospice that they so firmly believed in. The Reagan administration’s reason for rubber-stamping it was perhaps less altruistic: After almost ten years of federal trials and studies, the Medicare budget office had reached the conclusion that adding a hospice benefit would be kind to their bottom line.⁵⁸ In 1986, the Medicare benefit was made permanent, and, in the mid-1990s, during the height of the AIDS crisis, hospice also became a benefit of Medicaid.⁵⁹ The availability of federal funding for both institutions and patients has dramatically shaped the succeeding course of hospice. Though it has absolutely expanded care access, this funding has also been exploited by the arrival of for-profit institutions.⁶⁰

The industry’s own perspective on hospice inpatient environments has also changed, and research from the past decade suggests a different hierarchy of organizational goals than those embodied in the design of the Connecticut Hospice. The individual patient and their privacy are routinely identified as top priorities; workers are discussed with less frequency. In 2016, the first-ever post-occupancy evaluation tool was designed for hospice environments; out of the eleven therapeutic goals it determined should be used to evaluate building performance, eight concern the autonomous patient. One each addresses social needs, family, and staff.⁶¹ Similarly, in the Cornell-produced handbook Designing End-of-Life Care Settings to Enhance Quality of Life (2018), design considerations are almost entirely focused on patient needs.⁶² Again, privacy is paramount: “The ideal is to provide single occupancy rooms with closeable doors to give each resident and his or her family full control of privacy.”⁶³ Here, at least, there is the recommendation for a staff break room. Within is a TV, rather than a skylight through which to gaze at Orion on a breathless winter night.

Spatial imbrications, new horizons

Shifting institutional priorities eventually led to the abandonment of 61 Burban Drive. In 1999, after years of considering such a move, the board of the Connecticut Hospice—which no longer included any of its original members—announced it would be selling the Chan-designed facility it had occupied for nineteen years and moving into a significantly larger former corporate headquarters on the waterfront a few miles away.⁶⁴ By 2001, 61 Burban Drive had been sold to the Benedictines of Jesus Crucified, a Roman Catholic order that gives vocations to women with physical disabilities who might otherwise be rejected from religious life.⁶⁵ During their ownership, it became the Monastery of the Glorious Cross and underwent exterior and interior renovations. A bell tower was added to one of the former patient terraces; bathrooms were updated; the four-bed wards were chopped up into smaller cells.⁶⁶

The nuns lasted not quite as long as the terminally ill. In 2018, 61 Burban Drive was once again on the market. “Perfect for school or non-profit,” the listing said.⁶⁷ Three years later—in the summer of 2021—the building was sold to a private real estate developer.⁶⁸ It remained untouched until this past winter, when a thorough interior demolition commenced: the first stage in a plan to convert the former hospice into “The Views,” a fifty-nine-unit senior housing complex.⁶⁹ As winter gave way to spring, more and more of the building’s memory was discarded into dumpsters. Now little more than the structure and façade remains.

What is there to learn from the annals of this remarkable building soon to embark on its third incarnation—in which it will once again house people nearer to life’s end than its beginning? The staggering breadth of exploitation and suffering catalogued by Kofman in her investigation for the New Yorker forestalls any inclination to look for a singular solution to the hospice crisis; it is tendriled and ever-shifting, like capitalism itself. Architecture cannot inhibit the market (usually it does the opposite). But for a moment in history, the Connecticut Hospice sincerely attempted to spatially manifest its ambition to yoke the well-being of patients to the well-being of staff, weaving together the fates of two populations commonly cast aside by the state and by capital as outside the realm of production and therefore without value, yet still ripe for extraction. There may yet be a seed to find, a vine to plant, in furtherance of this radical vision of hospice that foregrounds labor as itself deserving of architectural care.⁷⁰