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.

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.”

Read more in The Avery Review.

Written by External Article
Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection. Have a great story about caregiving? Use our contact form to submit it to us so we can share it with the community!

Related Articles

Monster-in-Residency

Monster-in-Residency

When Carolita Johnson became a live-in caretaker for her 87-year-old mother, reimagining this new life as a multi-year writing residency helped her...

The Man in Room 117

The Man in Room 117

Three years ago, when he stopped taking his antipsychotic medication, her son withdrew into delusions, erupting in unpredictable and menacing...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

0 Comments

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.