Column: A visit with my late mother’s nurse and a lesson in what you need to know about palliative care

When my mother was dying, a private, for-profit hospice agency failed her: the designated nurse was late for the first visit due to lack of staff. My mother suffered destitution without painkillers, and our family abandoned the agency and moved to a nonprofit.

Karen Eshelman was the nurse who came to our rescue, calmly and quickly adjusting painkillers and compassionately preparing us for the inevitable. Grace Lopez died peacefully a few days later, just under 90 years old.

Eshelman showed up at my mother’s funeral to pay her respects, and recently, almost five years later, I stopped by her home in Concord to say thank you.

“For many of us in hospice care, 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 she lost her first husband when she was 30, and with their two children to support, she had to learn to face death and move past it.

“I know the families will get through this,” said Eshelman, who remarried 25 years ago. “Grief is not easy, but you will come out the other side and good things will happen in life.”

Demand for hospice care will grow significantly as the population ages, but staffing shortages, corporate profiteering and a series of Medicare fraud and billing scandals have rocked the industry, with recent exposed in the LA Times and a joint ProPublica-New Yorker investigation. For a while, nonprofits resisted these trends, but Eshelman surprised me with a news flash.

Karen Eshelman is a registered nurse who works at East Bay Hospice and cared for Grace Lopez in her final days.

(Steve Lopez/Los Angeles Times)

She and her colleagues at Hospice East Bay had just voted to join the National Health Care Workers Union because they felt industry pressures were starting to hit their agency. Eshelman said the big problem wasn’t money, but the belief that understaffing was impacting the quality of care.

“It leads to nurse burnout, and not just nurses, but social workers and spiritual care counselors,” Eshelman said. “And that leads to more people calling in sick because they just need a break and a day off.”

Nearly 400 employees at five nonprofit hospice agencies in the Bay Area have joined the same union since May 2022, mirroring unionization efforts by hospice agencies in several other states.

Sal Rosselli, president of the NUHW, said the corporatization of what was primarily a faith and community-based charity industry had led to “an increasing desire to focus on the bottom line rather than providing care.” adequate or to take care of health care. workers.”

When you hold the hand of a loved one who is dying, you have a lot of things on your mind, but it’s not the hospice agency’s bottom line that you’re thinking about.

Some hospice workers “are told they only have 30 minutes with a patient,” said Richard Draper, NHWU’s organizing director, although depending on the level of care required, a patient may require much more attention. “The major issue for us is staffing,” Draper said, “and our ability 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 unionized 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 service bereavement support in a palliative care agency. She said a layoff and reduced visits from home health aides “make it harder for us to do a good job” even if leaders of the agency’s parent organization pocket millions in compensation.

The director of her hospice agency did not respond to my request for an interview, but I checked the ProPublica Newspaper of nonprofit tax filings, in which tax-exempt St. Joseph Providence Health — one of the nation’s largest nonprofit health care companies — described its mission as “committed to serve all, especially those who are poor and vulnerable.” For fiscal year 2021, according to the newspaper, the company’s chief executive, Rod Hochman, took home more than $10 million and was one of 11 company executives earning more than $1 million .

Is it a non-profit organization?

Claire Eustace, a spiritual care clinician at Hospice East Bay, said her job is made more difficult when the nursing team is understaffed and overworked, and that there have been times when nurses had to work 10 days straight.

“It’s affecting my work to the extent that… my loved ones are upset because they’re not getting the support they need,” Eustace said.

“We were overstretched and couldn’t provide good care and we were exhausted,” said colleague Andrea Hurley, a social worker. Caseloads for social workers have increased from 26 to 30-plus, Hurley said, which may still be manageable, except that shortages for other job categories are growing.

“In previous years, I felt like leadership would hear us and there might be 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 he admitted the agency is on the brink financially. He has lost several nurses, he said, because it is difficult to fill positions given the labor shortage in the health care sector. He therefore uses traveling nurses under contract.

“Medicare reimbursement rates have increased slightly over the years, but they have not kept pace with inflation and rising wages,” Musick said. “And so, year after year, we try to figure out what we can cut back to stay in business.”

It’s not easy to maintain inherited traditions like grief counseling, Musick said, and he predicts consolidation. But a recent plan to merge Hospice East Bay with another nonprofit failed.

People can have good experiences in for-profit hospice care and bad experiences in nonprofits, said Jennifer Moore Ballentine, executive director of the advocacy and policy group Coalition for Compassionate Care of California. In general, she says, “nonprofits have better metrics and do better work,” but they struggle to stay afloat.

“Frankly, it’s a mess,” Ballentine said. “I cry every day for the hospice industry because I think they are really in trouble.”

In the hospice sector, as well as in the nursing home sector, the provider network has been flooded with stock and real estate investors, among other opportunists without any experience in healthcare. Faced with the inevitability of chronic illness and end-of-life care, they swooped in like vultures, eager to profit.

California has repressed on the proliferation of hospice agencies following the Times’ revelations, but increased regulation and oversight at the federal level is imperative. Dr. Joan Teno, an industry authority at Brown University, has called for a series of reforms in a JAMA article published in May.

“The need for change is urgent to ensure that frail older adults receive high-quality care and that fraudulent care is eliminated from the system,” Teno wrote. “Quality measures are important, but there is a need to improve integrity monitoring. It is now.”

Ballentine said anyone looking for a hospice agency should take a look at the national palliative care locator, which compiles 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 grievances, they wanted to stay with their employer.

“I moved here because I like this agency and I think it’s really good,” said Eshelman, a Midwest native. Unionizing, she said, is a way for employees to have a better voice while respecting the traditions of the nonprofit model.

The ultimate goal, she says, “is to provide even better patient care.”

steve.lopez@latimes.com