Healthcare workers: what are conditions like in your facility? Let us know by filling out the form below. All submissions will be kept anonymous.

With a career spanning 47 years, Mary Jo Marinelli offers a candid look at the steady decline of the American healthcare system. She began her professional life in Detroit hospitals working in high-intensity environments like the Cardiovascular Intensive Care unit and the Emergency Room. Her extensive journey has taken her through the AIDS epidemic, the COVID-19 pandemic, and now into the private sector of assisted living and hospice care.

In this interview, Mary Jo discusses the corporatization of healthcare, the dangers of short staffing, and the human cost of a healthcare model increasingly dominated by hedge funds and private equity firms. She has also been physically and personally impacted by the decline of the healthcare industry, having undergone six back surgeries as a result of the physical demands of nursing. Additionally, as the mother of a 35-year-old son with severe autism, she navigates the complexities of the medical and social service systems both as a seasoned clinician and a devoted caregiver

Katy: I think first what would be interesting is to hear your thoughts on what you’ve seen happen to healthcare over the course of your career. I think a lot of our readers could benefit from learning about how far the healthcare system, which was never perfect by any means, has declined.

Mary Jo: I have been a nurse for 47 years. There’s so much change that’s taken place, and a lot of it not for the better. I really started my career in the hospital. I worked ICU and Emergency for the most part. When I first started, there was a major discrepancy between people having insurance and those who didn’t, especially in the emergency room. Social workers would sign patients without insurance up for what they called Title 19—now it’s Medicaid. That meant they could do more testing and get them admitted.

Towards the 90s, after the AIDS epidemic, everything got really crazy. Even as an employee, our insurance changed dramatically. We never even had co-pays before, and then premiums went up and we were getting less care. There were always limitations to caring for patients because of insurance, but I don’t remember them being that dramatic until the 90s.

Katy: Can you speak more about what you mean by limitations? I assume this was before The Emergency Medical Treatment and Labor Act (EMTALA) [This act required hospitals participating in Medicare/Medicaid to stabilize all patients in emergency situations.]

Mary Jo: Yes. I remember a horrible thing, a patient who moved from Germany to the U.S., pregnant and engaged to an American citizen. They found out she needed a heart transplant, but because she didn’t have insurance, they wouldn’t even put her on the waitlist. She was only 28 and had an eight-month-old baby. We had her for two weeks and she was getting worse. The nurses got her a book to write her thoughts for her child because we thought she was going to pass away before anyone made a decision. Eventually, some cardiologists stepped up and she was transferred to U of M, but because they dragged their feet so long, I don’t think she had a good outcome. I also saw patients turned away from the ER or denied important testing because they didn’t have insurance.

Katy: How would you describe conditions in healthcare now?

Mary Jo: In general the care is so much worse. In the 80s, I worked at Detroit Receiving and we had the time to really take care of everyone. We could give pretty good patient care. In the 2000’s it started to get much worse. They didn’t want to hire more nurses or nursing aids. They told us if we called in, we’d get penalized. There was a lot of intimidation. We tried to get a union in a community hospital, but that was a joke. We knew it was bad, but we were in the middle of it, so we couldn’t see it clearly. It was this slow drip, and then you wake up one day and realize it’s a hundred times worse than it was.

I don’t work in the hospitals now, but I take care of patients that are discharged from the hospital and they are often in terrible conditions—unbathed, for example. The care is really not how it used to be.

Also I’ve experienced it first hand as a patient too. I’ve had six back surgeries because of how I worked. No one really showed up for me after surgery. You’re on your own.

There are medication errors and falls because of low staffing. New nurses don’t have the clinical background they should. There’s such high turnover in the hospitals, that the most experienced nurse on the unit sometimes has only five or six years. They used to give pensions, which was an incentive to stay and vest yourself in the company, but they don’t do that anymore. It shocks me. I was one of the last nurses to get a pension. Now, it’s not even considered a profession, which they did just so they wouldn’t have to cover tuition reimbursements.

Katy: You mentioned working during the AIDS epidemic earlier. What was that like? 

Mary Jo: The AIDS epidemic was very sad because of the vilification of the LGBTQ community. I remember going to hang blood on a woman who asked if I could guarantee it didn’t have AIDS. I couldn’t guarantee and I found out later we weren’t testing for it yet in blood products. It was a very different time before AIDS. Back then, we didn’t even wear gloves.

A lot of patients would come in through the ER really sick, having seizures. Many had substance abuse issues and we were starting IV’s on them, there’s just blood everywhere, we were really not protected. I remember maybe a year after AIDS started, we started hearing about more healthcare workers who got it. There was a surgeon I remember whose scalpel went through his gloves and he contracted AIDS and died. Then I remember eventually we got all the PPE. But AIDS changed the way nurses worked; some decided not to work in the field anymore. Patients were also treated very poorly, there was a lot of prejudice. It was so terrible.

When COVID started, I was working in hospice and the private sector in assisted living, so I would travel to different facilities to see my patients. There were a lot of places where the owners would just pretend the pandemic didn’t exist. I walked into one place in Royal Oak and asked the owner where the PPE was and he said , “I don’t believe in that. I don’t have to wear all that”. So I just let myself in and found the gown and mask I needed and I walked onto the unit. There was a sign telling me to wear PPE and to keep the door closed, so obviously they knew they had an outbreak.

There were three or four women who all had the same symptoms and they were up walking, moving around and then 24 hours later they were lethargic, fevers, everything. The owner didn’t want us to test them because he was afraid of losing money if families pulled their loved ones out.

These places are owned by hedge fund people who are buying up everything and just taking whatever they can out. Also, I want to add, since so many Psych hospitals are closed, they are putting psych patients into nursing homes where they aren’t being cared for appropriately.

Katy: How much do these facilities cost for patients?

Mary Jo: The lowest cost for assisted living is around $6,000 a month, and that’s without nursing care, you have to be independent. Everything is a la carte—oxygen has a “handling fee” and if you are on more than three pills or something, the cost goes up. It can go up to $15,000 a month. People sell their homes. I had a lady who sold her $400,000 house; she used up every cent in four years and we had to get her on a Medicaid waiver just to keep her there in the end. Families are spending everything just to keep their relatives out of nursing homes, which are even more horrible. They feel better putting them there, but what’s going to happen to the next generation coming up, my generation, we’re not going to have that kind of money.

Now, assisted living facilities are getting away with not having licensed nurses at assisted living facilities, instead calling the person in charge of medical care a “Wellness Director,” who could be someone off the street. In the last six months I feel like I’ve had many experiences where I go into a facility and I ask to see the nurse and they tell me, ‘oh she quit,’ or ‘who knows, they probably got rid of her.’ It went from being an RN in charge to an LPN being in charge to now someone with no medical background. So the care is really poor as well. It bothers me to the end of the earth because these are older people, these are disabled people who have nowhere else to go. And when you walk into these places they look nice at first, but they’re not.

Katy: What do you think it says about a system where the elderly and disabled are treated so terribly?

Mary Jo: I have a 35-year-old son, Michael, with severe autism. He’s nonverbal and can never be left alone. I’ve been through the ups and downs of SSI. Well, he was under the umbrella on an HAB waiver (Habilitation Supports Waiver) which paid for help in the home. And my youngest son was getting paid to take care of him while he’s going to school, going to college. So, that worked out and I’m working.

Well, now with all the cuts and with the government screwing around, I don’t know what they did. I’m in the medical field and even I don’t understand. They make it horribly confusing. But now my son hasn’t been paid. I’m on the phone all the time trying to figure this out and I talked to a social worker and I said, “If I didn’t have someone to take care of him, I couldn’t work, so I would lose my house and where would Michael go? There’s nowhere for him to go.”

I think we’re going to see a lot of people just dump their family members because they won’t know what to do. And imagine if this was happening to you and English was your second language.

Katy: Looking at the political situation, do you see any of the parties addressing this?

Mary Jo: No. This is capitalism gone awry. It’s just not working for everyday people. I was raised in a home that was Democrat and union-driven. I went through the Vietnam War, did walkouts and strikes, and marched on Washington. I watched Martin Luther King on TV. I was raised in a home that was Democrat and union driven, so I didn’t look at being a Democrat as a negative thing, but I do think it was different. My grandparents were taken care of because my grandfather had a “golden card” from GM that paid for insurance for life. Kids growing up now can’t even pay rent.

Katy: What do you think is the path forward?

Mary Jo: I don’t know. I would never vote Republican, but I don’t see Democrats helping. The Republicans always get us into another war. But now it seems like the deficit just gets worse. I’m not saying the Democrats have done much better, but I think they just make it look nicer. We need another party. The Republican and Democratic parties aren’t doing anything for the people ... That can’t go on. It’s just not working.