When my mother was dying, a private, for-profit hospice agency failed her: The assigned nurse was late for the first visit due to staffing shortages. My mother suffered misery without pain medication and our family left the agency and switched to a non-profit organization.
Karen Eshelman was the nurse who came to the rescue, calmly and quickly adjusting pain medications and compassionately preparing us for the inevitable. Grace López died peacefully a couple days later, just below 90.
Eshelman showed up at my mother’s funeral to pay his respects, and recently, almost five years later, I stopped by his home in Concord to thank him.
“For many of us in hospice, something happened in life that made us want to give back,” Eshelman told me in her kitchen, dressed in her blue uniform as she prepared for another shift. She said that she lost her first husband when she was 30 years old and that, having to take care of her two children, she had to learn to face death and overcome it.
“I know the families will get through it,” said Eshelman, who remarried 25 years ago. “Grieving is not easy, but you will come out on the other side and good things will happen to you in life.”
Demand for palliative care will grow dramatically as the population ages, but staffing shortages, corporate profits and a series of Medicare fraud and billing scandals have shaken the industry, with recent exposes in the LA Times and a joint ProPublica-New Yorker investigation. For a while, nonprofits bucked those trends, but Eshelman surprised me with a breaking news story.
She and her colleagues at Hospice East Bay had just voted to join the National Union of Healthcare Workers because they felt industry pressures had begun to affect their agency. Eshelman said the big problem was not money, but the belief that staffing shortages were affecting the quality of care.
“This leads to nurse burnout, and not just nurses, but social workers and spiritual care counselors,” Eshelman said. “And this leads to more people calling in sick because they just need a break and a day off.”
Sal Rosselli, president of NUHW, said the corporatization of what had primarily been a charitable, faith-based and community-oriented industry has led to “a growing push to focus on the bottom line rather than providing appropriate care or taking care of medical care.” workers.”
When you’re holding the hand of a dying loved one, you have a lot on your mind, but you’re not thinking about the outcomes of the hospice agency.
Some hospice employees “are told they only have 30 minutes with a patient,” said Richard Draper, NHWU organizational director, although depending on the level of care needed, a patient could need much more attention. “The biggest issue for us is staffing,” Draper said, “and being able to have a say in how care is delivered.”
Jessica Williams is a registered nurse at the nonprofit Providence Hospice Sonoma County, where 131 employees organized in February. “I think ‘nonprofit’ is really just a name,” said Williams, who began receiving hospice care after her mother died in a car accident and attended a grief support service at an agency. palliative care. She said a layoff and reduced visits by home health aides “make it harder for us to do a good job,” even as executives at the agency’s parent organization pocket millions in compensation.
The director of her hospice agency did not respond to my interview request, but I verified the ProPublica Registry of nonprofit tax records, in which St. Joseph Providence Health, one of the nation’s largest tax-exempt nonprofit health care companies, listed its mission as “steadfast in serving all, especially those who are poor and vulnerable. For fiscal year 2021, according to the record, the company’s CEO, Rod Hochman, pocketed more than $10 million and was one of 11 company executives to earn more than $1 million.
Is this a non-profit organization?
Claire Eustace, a spiritual care clinician at Hospice East Bay, said her job becomes more difficult when the nursing team is understaffed and overworked, and there have been times when nurses have had to work 10 days straight.
“It affects my work in the sense that… loved ones are upset because they’re not getting the support they need,” Eustace said.
“They were asking too much of us and we couldn’t provide good care and we were exhausted,” said colleague Andrea Hurley, a social worker. Caseloads for social workers went from 26 to 30 and up, Hurley said, which may still be manageable except that shortages in other job categories were increasing.
“In previous years, I felt like leadership would listen to us and there might be some changes,” Hurley said.
Bill Musick, interim CEO of Hospice East Bay, said its staffing levels per patient are among the highest in the industry, but admitted the agency is on the edge of a cliff financially. He is short several nurses, he said, because it is difficult to fill positions due to a health workforce shortage. So he’s been using contracted traveling nurses.
“Medicare reimbursement rates have increased slightly over the years, but they have not kept pace with inflation and wage growth,” Musick said. “And so, year after year, we try to determine what we can cut to stay in business.”
Holding on to inherited traditions like grief counseling isn’t easy, Musick said, and he predicts consolidation. But a recent plan to merge Hospice East Bay with another nonprofit fell through.
People can have good experiences in for-profit hospice and bad experiences in nonprofits, said Jennifer Moore Ballentine, executive director of the advocacy and policy group. California Compassionate Care Coalition. In general, he said, “nonprofits have better quality metrics and are doing better work,” but they are struggling to stay afloat.
“Frankly, it’s a disaster,” Ballentine said. “I cry every day for the industry that was hospice because I think it’s really in trouble.”
In the hospice industry, and also in the nursing home field, the provider network was inundated with stock and real estate investors, among other opportunists without the slightest experience in healthcare. Given the inevitability of chronic illness and end-of-life care, they flocked like vultures, eager to cash in.
California has repressed on the proliferation of hospice agencies following the Times exposé, but greater regulation and oversight at the federal level is imperative. Dr. Joan Teno, an industry authority at Brown University, called for a series of reforms in a JAMA article published in May.
“The need for change is urgent to ensure that elderly and frail people receive high-quality care and that fraudulent care is eliminated from the system,” Teno wrote. “Quality measures are important, but integrity oversight needs to be improved. The time is now.”
Ballentine said anyone looking for a hospice agency should take a look at national palliative care locator, which collects data on agency quality. When I checked the Bay Area listings, Hospice East Bay was at the top.
It’s worth noting that when I spoke to my mother’s nurse and her colleagues, they told me that despite their complaints, they want to stay with their employer.
“I moved here because I love this agency and I think it’s really good,” said Eshelman, who is from the Midwest. Unionization, he said, was a way for employees to have a bigger voice in upholding the traditions of the nonprofit model.
The ultimate goal, he said, “is to provide even better patient care.”