In 2018, “Nursing homes: Good intentions, sad realities” chronicled Rita Hirschler’s experience in a nursing home after decades of being a private care nurse. In response to the ideas espoused in the article, namely that a person has a right to live and die in their home and risks are unavoidable whether one lives at home or in a nursing home, a commentator asked, “What is the solution?” The intervening 6 years have provided a number of insights and an opportunity to share how things turned out for Rita.

Rita stayed in a Five-Star rated, corporate-owned, non-profit nursing home. According to the Center for Medicare Advocacy and Lu and Lu, ownership and sponsorship type have been shown to significantly impact the quality of care in nursing homes, with for-profits generally having lower staffing levels and poorer patient outcomes. The Centers for Disease Control and Prevention, Meyer, and KFF Health News say for-profit nursing homes now account for approximately 72% of the more than 15,000 U.S. nursing homes, and they provide varying levels of care to 1.3 million residents. 

Four months after the publication of the 2018 article, my dad suffered a stroke that led to his death 13 days later. Rita said, “So many people at the nursing home say to me, ‘Your son was such a wonderful person.’ I want to die, too.”  

To help, I contacted my friend Cheri and shared a job description that included giving my grandmother a reason to smile each week and bringing a homecooked meal. For over one year, Cheri brought carefully curated meals, specialty teas, and infectious enthusiasm.  

Cheri expressed gratitude for the many happy moments she and Rita shared painting, playing cards, laughing, and dancing, but she also spoke of inheriting a burden. Cheri said that the stress and ruminations followed her home for days, especially when calling Adult Protective Services to describe what was happening at the facility and when alerting management to issues with specific employees.

“Watching people go hungry because no one would feed them. It’s a huge reality,” said Cheri. “There were around six to eight of us at a particular table that we regularly sat at. I couldn’t possibly feed all those people, but I’d be damned if I didn’t try. Gram would say, ‘She didn’t eat all morning, and now it’s lunchtime, and she’s barely eating right now, and her food’s sitting right there. Please, help her.’”

Cheri described witnessing employees turn off the emergency buttons when residents were “too bothersome,” patients being medicated “so that they wouldn’t have to deal with them,” an aide purposefully dropping Rita on the toilet out of anger, and mistreatment when she became too demanding. Cheri said it was horrible to see a person be forced to hold it to the point when they “literally cannot hold it anymore.”

“When you watch somebody know and truly understand that people do not care about you, it is a horrible sight,” said Cheri. “And, you can see it. The moment on the face when you’re expecting this and you’re so relieved, and then that person comes in and turns you down and says, ‘No, you’ll sit there. You’ll wait. I don’t have time for you.’ And the look on their face where they just know, and it just hits them, truly, that people don’t care. And it does not matter how nice you are, how good you’ve been your whole life, or how much pain you’re in.”

Twenty-years ago, Gass wrote about the “no-nonsense caregiving” provided by aides: “We are the fast food of the healthcare industry.” In nursing homes, aides are responsible for a large proportion of direct-patient care. They experience high burnout rates, which results in high turnover. This situation is expected to worsen over the next decade as nursing homes experience more severe staffing shortages.

In May 2024, a presentation by Cynthia Balina, MD, medical director at McGregor PACE, inspired me to revisit this story. Dr. Balina, a geriatrician, explained that PACE helps people who want to remain in their home who are 55 years old or older and are certified by the state as meeting the need for nursing home level care. When Dr. Balina said, “We have a high tolerance for risk”, I thought, “Yes!” One week later, we met for an interview.

PACE offers a glimpse into the future of elder care. Dr. Balina highlighted the confluence of costs and care: “It has been proven again and again that this approach saves money. It’s a rare situation where economics and care align. It saves money for everyone. It saves money for Medicare and Medicaid, and it’s exactly what the people want. That never happens.”

Dr. Balina stressed the importance of avoiding a paternalistic approach. “Our goal is their goal. It’s not about what we want or what we think is best,” she explained. “The heart of it is determining what the person’s goal is. Often their goal involves accepting risk, and then our job is to make sure that is being done in a way that makes sense to anyone who is looking at it.”  

This involves creating what the state refers to as a health and safety action plan, which describes the strategies for providing care and minimizing risk. Dr. Balina is hopeful that this model of care, which recognizes the importance of psychosocial health as well as physical health, will spread as people see that healthcare and geriatric care can be delivered in a way that better supports patients’ goals.  

Solutions include organizations, like McGregor PACE, that provide comprehensive in-home nursing care. Additional options for the person who wants to remain in their home include personal care assistants, home health aides, adult day care, telehealth services, respite care, home modifications (installing grab bars, ramps, or stair lifts to improve mobility and safety), meal delivery services, community-based services (transportation, social activities, and support groups), and family and friends who are able to provide informal caregiving supplemented with professional services.

While in the nursing home, Rita had a fall that ended her use of the toilet and led to the permanent, years long use of a Hoyer lift, which allowed her to be cleaned. She endured numerous urinary tract infections, bed sores, and frustrations common in institutional care.  

Being on COVID-19 lockdown for 1 year and without social interactions to distract her from her physical maladies, Rita announced that she no longer wanted medications or nourishment. I imagine she heeded my dad’s advice, “Mom, when you’re ready, just stop eating and drinking.” Within days she was designated as a hospice patient, which, ironically, allowed her to have visitors. I immediately traveled 6 hours to see her. I entered her room with the required gown, mask, gloves, and face shield, and hugged her. Despite the physical barriers and her weakened state, she smiled with appreciation. I played Bing Crosby on my phone, and in a whisper, Gram said, “Thank you.”

Five and a half years after first entering the facility, Rita passed away at the age of 104 on April 3, 2021. Her passing was a blessing and a release from suffering. Rita had been in the nursing home for 2,021 days. The social isolation during COVID-19 was brutal for all of us, but it was especially difficult for nursing home residents. Her physical condition exacerbated a desperate situation.

In an interview 7 years earlier, Gram told me about all the family members she sat vigil over. She then began to cry, “I just hope someone is there for me.” I was by her side during her final 10 days.   

Chris Hirschler is dean of the health and wellness sciences division at Lorain County Community College in Elyria, Ohio.

References

Centers for Disease Control and Prevention. Nursing home care. November 5, 2023. cdc.gov/nchs/fastats/nursing-home-care.htm

Center for Medicare Advocacy. Non-profit vs. for-profit nursing homes: Is there a difference in care? March 15, 2012. medicareadvocacy.org/non-profit-vs-for-profit-nursing-homes-is-there-a-difference-in-care

Gass TE. Nobody’s Home: Candid Reflections of a Nursing Home Aide. Ithaca, NY; Cornell University Press; 2005.

Hirschler, C. (2018, February 10). Nursing homes: Good intentions, sad realities. American Nurse Journal. February 2018. myamericannurse.com/nursing-homes-good-intentions-sad-realities/

Lu LX, Lu SF. Does Nonprofit ownership matter for firm performance? Financial distress and ownership conversion of nursing homes. SSRN. November 18, 2021. papers.ssrn.com/sol3/papers.cfm?abstract_id=3343558

Meyer H, KFF Health News. For-profit groups have vacuumed up over 70% of America’s nursing homes, and health advocates are worried: ‘The care gets really bad’. Fortune. March 12, 2024. fortune.com/2024/03/12/nursing-homes-for-profit-private-equity

Miller VJ, Maziarz L, Wagner J, Bell J, Burek M. Nursing assistant turnover in nursing homes: A scoping review of the literature. Geriatr Nurs. 2023;51:360-8. doi:10.1016/j.gerinurse.2023.03.027.