This February, just before he turned 92, Daniel Ellsberg learned he had inoperable terminal pancreatic cancer. Best known in journalism circles for leaking the Pentagon Papers in 1971, Ellsberg had a couple of months’ reprieve before he became bedridden. By April, the longtime activist entered hospice care at home in Kensington. His family hired a local agency, Hospice East Bay, to help.
The support from the nurse assigned to Ellsberg, Jill Tobin, was extraordinary, said Michael Ellsberg, 46, the youngest of Daniel Ellsberg’s three children. His father would pass away in June. “This was the first time that anyone I was very emotionally close to had died,” Michael Ellsberg said, noting the long hours Tobin spent at his dad’s bedside. “Hospice care is a deeply emotional thing,” he continued, “and we were all so grateful for her.”
Tobin did not mention it to the Ellsbergs, but she and her coworkers were beginning a fight they hoped would ensure they—and the dying patients they cared for—got what they felt they deserved from Hospice East Bay. In September, the workers filed papers to hold a union election. On Nov. 3, Hospice East Bay employees voted 56-15 to join the National Union of Healthcare Workers (NUHW), becoming the sixth hospice workplace in California to unionize in the last year.
Union certification at East Bay will also be the latest in a burgeoning labor movement among hospice workers seeking not only better wages but also better jobs.
Hospice care was once the work of charities and nonprofits, but it has more recently become big business. More than half of Americans now die in hospice care, which is often paid for by Medicare. Last year, Medicare spent nearly $24 billion on hospice care, a jump of more than 24% from five years earlier. For-profit companies make up more than 72% of the hospice industry, with more than 100 new for-profit companies entering the field each year. And these companies, though funded at the same daily rate per patient as nonprofits, enjoy more than three times their profit margins.
“In the last 10 to 15 years, there has been an explosion of for-profit hospices, especially in California and throughout the southwest,” said Matt Wilkinson, a spokesperson for the National Partnership for Healthcare and Hospice Innovation, which represents nonprofit hospices and palliative care providers. Nonprofits, he said, have higher costs in part because they typically provide a range of services that for-profits don’t, including bereavement and spiritual care, which aren’t covered by Medicare.
A 2019 report by Milliman, an actuarial firm with a specialty in healthcare, suggested that profit margins are also tied to cuts in core hospice services. The report, commissioned by the National Partnership for Hospice Innovation, found that nonprofit hospices provided patients three times as many physician or nurse practitioner visits and twice as many therapy visits as for-profit ones. In 2023, a RAND Corp. study published in JAMA Internal Medicine reported that caregivers of patients receiving hospice care reported receiving substantially worse care in for-profit hospices than nonprofit ones, though the data showed some variations.
While there is no comprehensive data on unionization rates across the industry’s occupations, which range from home health attendants to spiritual counselors, anecdotal research suggests unionization is growing. Hospice worker unions have organized in Washington, Minnesota and Oregon in the last three years; the National Union of Healthcare Workers and the SEIU-United Healthcare Workers West have organized five workplaces in California in the last year. (Disclosure: NUHW and SEIU are financial supporters of Capital & Main, a nonprofit publication in California.)
Feeling increased pressure to provide more care for less pay has pushed hospice workers to organize, often for the same reasons given by Hospice East Bay workers. Tobin said she joined East Bay in part because the nonprofit agency has a reputation for providing high-quality patient care. But when the company’s leadership changed this spring, “the new focus was much more around numbers and inflexible metrics for productivity,” she said. Soon, workers had reached out to the National Union of Health Workers for help.
Capital & Main spoke to workers at three agencies with hospice union campaigns. All described similar pressures to see more patients more quickly, with little regard to the effect on care.
Brooke Zakar, a veteran social worker at Sutter Health in Sacramento, said her caseload doubled and the frequency of her visits was cut in half. Her home health colleagues went from four patients a day to six, she said.
At Providence St. Joseph Health Hospice in Sonoma County, the NUHW alleged that aides saw their daily caseloads increase by 25%.
Meanwhile, at Hospice East Bay, spiritual counselor Claire Eustace said she was given 30-minute limits for routine meetings with patients and their caregivers. Tobin said many nurses at East Bay did unpaid work to ensure patients got the care they needed.
In response to the organizing drive, Hospice East Bay’s interim president, Bill Musick, sent out a video message to employees, stating that the only thing a union could guarantee was that “you’ll work under union rules and be asked to pay union dues.” The company also distributed an anti-union flyer that said, “Keep in mind, a union organizer’s job is to promote the idea that employees and management have separate, incompatible interests. In fact, we all share the same interests.”
In an emailed statement to Capital & Main, Musick wrote that the agency’s “commitment to patients attracts purpose-driven employees of great skill” who have rated the company a Great Place to Work for the last four years. He denied that they “set strict parameters on the length of any specific interaction” and that they “regularly urge our employees to maintain a healthy balance between work and other aspects of their lives, and compensate them for all reported hours worked.”
A spokesperson for Sutter said that the company “coordinates visits based on patients’ health needs” and that “staffing levels align with best practices and industry standards.” Providence did not respond to a request for comment by the time of publication.
Tobin doesn’t believe Hospice East Bay’s management understands how the push for productivity affects her patients’ needs or her own well-being. After spending the first year of the COVID-19 pandemic as an emergency room nurse, she sought out hospice work in hopes of a job that was “more human and meaningful” and less rushed. Recent months have left her wondering if it would work out that way.
“I’m often having to decide, do I take care of myself and not do this work that would be needed for the person, or do I give what I know my patients and families need,” Tobin said. Indeed, the primary demand of East Bay workers interviewed by Capital & Main is to have more staffing and manageable caseloads that give them sufficient time with patients. “Organizing protects us as workers, but it also protects our communities, because we will have the resources we need to do true hospice work and not drive-by, task-based nursing,” Tobin said.
Michael Ellsberg, who said he supports the union drive, said Tobin’s long hours of dedicated care for his father were exactly what he needed.
“My dad was not the type to take orders,” Ellsberg said. “But Jill somehow won his trust. So if we needed him to eat something that he didn’t feel like eating, we would say, ‘Well, Jill says you need to eat.’ And he would say, ‘Oh, OK, Jill says that—OK, I’ll do it.’… This is a type of medicine where bedside manner really matters. And you can’t have that if you’re rushed.”