In Rochester, MN, at the Mayo Clinic, there is a famous bell. It rings all the time. After counting down the days, weeks, months, numbers of treatments remaining, people receiving treatment for cancer at Mayo arrive at the long-awaited day of their final treatment, and they get to ring the bell.
In Philadelphia, PA, in a pavilion on Independence Mall, is an even more famous bell. It hasn’t rung in 175 years, because nearly every time they tried, it cracked.
Written on that second, broken bell, is a phrase from this week’s Torah reading, Parashat Behar Sinai,
“Proclaim Liberty throughout the land and to all the inhabitants thereof,” the line that gave the bell its designation as the Liberty Bell. The full verse reads, “And you shall hallow the fiftieth year. You shall proclaim release (d’ror, translated by the Quaker smiths that made the bell as “liberty”) throughout the land for all it’s inhabitants. It shall be a jubilee for you: each of you shall return to his holding and each of you shall return to his family.” In celebration of the fiftieth anniversary of Penn’s Charter in 1751, it was the perfect verse.[i]
Yet at the time that the bell cracked permanently and irreparably, there were still millions of Americans falling through its cracks and moving further from liberty and their ancestral holdings than ever. Less than ten years prior to the bell’s death toll on Washington’s Birthday, February 22, 1846, Native Americans by the tens of thousands marched the Trail of Tears, while millions of African Americans remained enslaved in the South and within four years would find liberty moved hundreds of miles further from their reach by the Fugitive Slave Act of 1850.
By contrast to the Liberty Bell, the Mayo bell does a fine job of proclaiming liberty, one person at a time. I have a close friend who has rung it, and have heard tell of other hospitals that now have their own bells to mark people’s liberation from the bonds of their illness.
But even Mayo’s bell, and all that it represents, has cracks that people slip through all the time. There are hidden costs to reaching that festive day, many of them borne not just by the person receiving treatment, but by their entire family, and not just during their treatment but for years, even generations to come.
The most obvious of these cracks is medical debt. Care at Mayo, even with its assistance programs, does not come cheap, and with many of the patients arriving as medical pilgrims from other states, many insurances do not cover its services, preferring their own in-state university hospitals. Mayo is not unique or even unusual in this; the hospital where I trained also routinely welcomes out-of-towners, so frequently that there are three separate locations of Family House, a local charity set up to house their loved ones who travel with them in a home-like environment while they stay in Pittsburgh. But even local patients often find themselves burdened with bills they cannot afford to pay after receiving care they could not afford to forgo.
The cycle of debt that those bills create is the leading cause of bankruptcy in the United States. It can create, or cement, generation poverty for which there seems to be no Jubilee year to look forward to; debts that outlive the debtor pass on to their children. Dan Weissmann, on his podcast, An Arm and a Leg, zeroed in on one hospital, Methodist Hospital in Memphis, TN, to chronicle the hardships that medical debt created for many of Methodist’s patients – many of whom worked for the hospital itself, and found the cost of their care being garnished from their wages.[ii]
But there is a cost hidden even deeper than medical debt, yet equally capable of leaving people in poverty for generations. It is the cost of the care that we don’t pay for, but rather provide ourselves when a loved one is sick, frail or dying.
About 8 years ago I attended a talk by Northwestern University geriatrician Linda Emanuel that made me realize the privilege of being a basically healthy person from a basically healthy family. She detailed the financial burden that families take on when one or more of them quits a job, reduces work hours, or takes a job with less responsibility in order to care for a loved one at home. The burden is typically borne by the women in the family (although in certain cultures, such as the Nepali-speaking refugee community I work with, the responsibility may rest instead with the eldest son), and felt most acutely in poor and minority communities. There may not be money available to pay for professional caregivers to come in, the family may not trust nursing homes or other components of the system to care respectfully for their loved one, or the culture, especially in immigrant communities, may consider putting a relative into a nursing home an abandonment of the honor and responsibility due to that elder. While the resulting system of elders aging in place, and the ill receiving care in their own beds, is a model I wish many more of us could emulate, the cost to the family of doing so is enormous.
Emanuel detailed the financial burden with devastating detail: in 2009, nearly 40% of caregivers were from households with annual income less than $50,000, and half of those from households making less than $30,000. For an adult over 50 leaving the workforce to care for a loved one, mean loss of income and benefits over the remainder of their life averaged around $300,000 in 2011, or as much as people are typically expected to save for their retirements. Within that data, the income loss for women was roughly $40,000 more than for men, adding to the other disadvantages women face in the workforce in America and exacerbating the fact that women have significantly longer life expectancy than men. If we think of retirement as the modern equivalent of a jubilee, where after roughly a half-century of work people can return to the things they love most and live out their days, becoming a caregiver in America essentially cancels any hope of reaching that jubilee.
Commentators are clear that the biblical return to ancestral lands was not only meant for the wealthy householders who fell on unexpected hard times, but for “all the inhabitants” of the land. Among these comments, three are especially relevant:
Chizkuni interprets, “all the inhabitants” to explicitly include women, since the phrase translated here as “each of you” uses the masculine word ish and could be misconstrued to mean only the men, a comment that reminds us that any modern jubilee meant to mend the cracks in the Mayo bell needs to address the disproportionate burden of caregiving on women.
In the same comment, Chizkuni also explicitly includes those who do not have ancestral lands to begin with. This is not just a matter of restoring those who had resources “to their accustomed station,” but of giving everyone, regardless of former stature, a fresh start free of the restraints of their debts and decades-long obligations.
Finally, the Ha’Amek Davar opines that “proclaim freedom” includes soldiers in the service of the king and people attending to affairs of state being allowed to return home. No matter how crucial the task, and what could be more crucial than attending to the needs of those dearest to us, there is an opportunity to be free from those tasks once more.
Achieving this freedom in our day has proven a gargantuan task; in my adult life it has become harder, not easier, for individual citizens to seek the protections of personal bankruptcy to get a fresh start. Insurance coverage has become stingier, not more generous, in its coverage of medications, durable medical equipment, and care services, with ever-increasing burdens of proof and documentation on the providers of that care — often leading doctors and practices to refuse to care for people who are “too complex.” And employers continue to retreat from having actual “employees,” meaning every lost day of work is a day of lost income. Fewer people are covered by paid sick or family leave, fewer qualify for benefits like FMLA that require a year of tenure in a person’s current job, and fewer can even point to having “an employer,” working instead in gig economies or as contract workers where their available hours to work are in a constant tug-of-war with their hours needed to provide care.
As a result, we are here, in the Jubilee year for the War on Cancer that began in the Nixon administration, with thousands of bell-ringers who won the battle with cancer but appear to have become prisoners of war in the process, indentured to the hospitals that cured them. How can we proclaim release for them, and the family members who have cared for them?
Dan Weissmann offers one solution to the debt crisis. His last episode of 2019, entitled, “Christmas in July,” features the work of the Denny Buelher Memorial Foundation and RIP Medical Debt. The Buelher Foundation had an annual softball tournament that would raise about $10,000, originally to pay the medical expenses of its namesake when he was in treatment for leukemia and traveling from Cincinnati to Seattle on a regular basis, and later for other beneficiaries. Eventually, Buelher’s son, Ed, realized that, ridiculous as it seemed, $10,000 was not all that much money in the face of medical debt that often tallied that much for a single night in the hospital. In 2019 he partnered with RIP Medical Debt, an organization that buys up uncollected medical debt, often for a penny on the dollar, and forgives it. Suddenly, Buelher’s $10K was literally a million-dollar idea, enough to make a real dent in the debt burden of people in and around Cincinnati.[iii] RIP Medical Debt[iv] runs campaigns all over the country, not just the one it co-sponsors in Cincinnati with the Buehlers, and the counter on its website is closing in on $4 billion (with a b) forgiven as I write. Join me in donating this week in honor of Shabbat Behar.
But what about the hidden debt, the altered life course of a person caring for an elder or a sick relative? That burden is a major reason why the Biden administration’s American Jobs Plan unveiled in March proposes $400 billion for long-term care infrastructure, including for the type of unrecognized, unpaid services that often lock families into poverty. What’s not clear at the moment is how that money would be spent – raising the wages of home health workers? Paying for equipment, respite, or transportation?
Most states already have state funding in place for people to get home and community-based services[v], with the goal of keeping them out of nursing homes, but the funding, at least here in Pennsylvania, yo-yos up and down each year. When I began working with the program in 2011 or 2012, mental health conditions were not recognized as qualifying diagnoses; people suffering from severe schizophrenia, who perched in a chair sleepless for days at a time, obsessively drinking water and staunchly refusing to be led to the shower, could not access even a couple hours a day of assistance. In other, more generous years, I have seen relatively well elders who leisurely stroll their neighborhoods visiting for hours a day get funding for 10 hours a day of one-on-one care, and torture survivors being awarded subsidized help due to their diagnoses of PTSD. We’re in a lean year now due to COVID; recently I had a family where two wage-earners had quit work to care for a parent dying of cancer complained to me that their caregiver support had been cut back even during their parent’s final weeks on hospice, just as her condition was declining most rapidly.
The program is a lifeline for many families, and in fact can even jump-start small businesses that train paid caregivers and coordinate needs like incontinence supplies and safety equipment. Yet it is as dependable as electricity in the developing world, never 100% assured for tomorrow even if it works today. A dedicated care infrastructure might go a long way to keeping the lights on for those who need this service. Whether you support the American Jobs Plan or have an alternative idea in mind, reach out to those who make funding decisions for the sick, aging, or dying in your community and ask how they plan to address this problem.
One possible answer is Linda Emanuel’s proposal to turn the challenges of caregiving into their own form of capital. She and her colleagues, in a 2013 journal article, propose a system where informal caregivers can parlay the many skills they learn on the job into certifications, training, degrees, and paid jobs when their caregiving responsibilities end, or even in parallel. Caregivers learn administrative skills, medical terminology, healthcare finance, and parts of social work on the one hand, and IV insertion, blood sugar measurement, wound care and pain management on the other. Those tangible skills, paired with some kind of government or societal commitment to formally recognize and reward said skills, could be as much a lifeline out of poverty as getting the ancestral land back.
It’s time to fix the crack in the bell before anyone else slips through it while they ring it.