When I was younger, I vowed to my parents that I would never put them in a nursing home — not even an expensive one with weekend excursions, not even one with a celebrity chef. Admittedly, I know little about geriatric care. I’ve read the medical writings of Atul Gawande and many other compassionate doctors. I’ve done CPR on frail, aging bodies in ambulances as an emergency medical technician and changed their socks in hospital rooms as a volunteer. But I’m not trained in the field, nor have I thought much about the difficult questions facing it. I’m young and live on a college campus, cocooned by people my age.
Then, in June, my grandfather was diagnosed with Parkinson’s, and his condition rapidly deteriorated over the course of the month. He went from being the family caretaker — sending us daily news clippings, caring for sick grandchildren, coaxing us each along our various paths — to needing home hospice care and having barely enough strength to speak. Although we always felt a step behind the disease and his latest infection, we were able to give my grandfather intimate care and limit his time in the hospital.
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Not every family has the luxury of providing the care that they had planned for. Samantha Santoro, a charge nurse in the Center for Restorative Care at Yale New Haven Hospital, describes “caregiver burnout” as the most prevalent form of elder neglect they see.
“We’ll have families who drop off their family members because they can’t care for them any longer,” she said. According to Santoro, such cases are observed at least a couple of times a year in her department at St. Raphael’s Hospital, a branch of YNHH. Dementia, cognitive impairments and lack of mobility can push families to the breaking point and force generations to separate.
The Center for Restorative Care is one of many geriatric outpatient resources that Yale provides to help such families. Elderly patients with acute conditions such as pneumonia can be hospitalized there in a special department. The staff monitors risk factors like mobility and skin condition to prevent common dangers of hospitalization that disproportionately affect the elderly. Santoro says outpatient resources like these are most critical for relieving the burden on family members.
In some countries, generations are used to living together and staying within in a small area. But in the U.S., about one in four adults move within the country every five years, according to a 2013 Gallup poll. When I was an EMT in Israel, one of our greatest challenges was either fitting the whole family in the ambulance or convincing some to stay behind. On one nighttime call, we found an elderly patient living with a middle-aged daughter, who then proceeded to march around the neighborhood, knocking on doors and making the ambulance wait until all the grown children were assembled. Almost all of the elderly patients we visited lived with a spouse, children or both.
If the U.S. is lacking in familial care, we try to make up for it with institutions. The Dorothy Adler Geriatric Assessment Center provides comprehensive geriatric services at YNHH, with inpatient and outpatient locations. Some Yale undergraduates volunteer with Elder Horizons, a program that seeks to accelerate recovery for elders already hospitalized for acute illness and provide them with entertainment. And, in 1990, Yale founded the National Institute on Aging, a multidisciplinary research group that discovered, among other things, that fall prevention is effective and cost-reductive. According to the Connecticut Collaboration for Fall Prevention, 16 percent of all hospital visits are related to falls. The group studies patterns in fall patients and advocates for simple changes to the patients’ environment, gait and footwear.
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Yet, for all our community does, one doesn’t have to look far to find neglect and malpractice in nursing homes, where most elderly patients live. According to Santoro, abuse screening usually occurs in the emergency room. ER nurses report maltreatment to Protective Services of the Elderly, run by the Connecticut Department of Social Services. From there, the steps can vary from restricting visitations to transferring patients to another home.
When I shadowed in the Emergency Department at Yale New Haven, I helped nurses stick an IV into a woman so skinny that they could barely fit the needle in without damaging the bone. She was mostly unresponsive but would moan when the nurses poked her in yet another area to draw blood. Her legs were twisted together, and when we tried to separate them in order to change her diaper, they wouldn’t come apart.
“Someone needs to give you a good stretching,” one of the nurses said. But at the time, I didn’t realize this could have resulted from the nursing home leaving her in bed for too long without shifting her position.
The Paradigm Health Care Center of New Haven has been deemed a Special Focus Facility, a term used by Medicare and Medicaid for nursing homes with increased penalties, more frequent inspections and risk of termination. In 2015, the U.S. Center for Medicare and Medicaid Services fined the nursing home $63,700 for an array of health violations.
Sifting through publicly available Medicare reports is galling. The most egregious cases included neglecting a sore between a patient’s toes until maggots were crawling out of the skin and a gangrenous toe had to be amputated in the hospital. Another patient became dehydrated because proper liquids were not administered for six consecutive nursing shifts. One patient lost 20 pounds in three months due to inadequate feeding. Lesser findings involved failure to vet employees until months after they were hired and leaving food containers open in the fridge.
In April 2015, Orange Care Health Center of New Haven was fined $1,090 when a patient fell. A nurse had left her sitting on a toilet without an attached alarm, despite knowing she was at a high risk for falls. In June 2015, Paradigm’s home in South Windsor was fined $560 for delaying medical care for a resident with two broken femurs. The nurses had waited 10 days for an orthopedist’s appointment, neglecting to take the resident to the ER in the meantime. The Paradigm physician in charge of care was not informed of the delay. This past summer, a resident at Garden Heights Health Care Center in Shelton died after being left outside in the garden for more than three hours during a 95-degree afternoon. The center was fined $3,000.
Each home’s health report, performed annually by Medicare, shows many more violations, both minor and major. These violations seem to stem from a lack of communication between nurses and doctors, inadequate supply of (skilled) nurses and, in some cases, failure to maintain facilities. Often, physicians, residents and family members aren’t notified of changes that nurses have made to treatment plans. In most cases, another set of hands might have prevented an oversight or a lapse in judgment. But, given the resources available, improving nursing home care is easier said than done.
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According to the Connecticut Department of Social Services, Medicaid funds 70 percent of nursing home care. Yet, some nursing homes are not turning a profit. For instance, Paradigm, a for-profit nursing home with a branch in New Haven, is seeking to close its South Windsor branch. The branch hasn’t broken even since before 2011, when the current owners took over. Forty of its 100 beds remain empty.
Genesis is a national company that operates more than 500 nursing and rehabilitation centers across the country, including one nursing home in Groton, Connecticut. Genesis spokeswomen Jean Moore said the Medicaid budget is $28 less per day than the average cost of care that they provide.
In April 2015, Gov. Dannel Malloy helped prevent a strike that would have affected 27 state nursing homes. The organizer was District 1199 of the Service Employees International Union, which represents 29,000 health care workers in Connecticut and Rhode Island. Most nurses are paid barely above minimum wage, and if I learned one thing working as an EMT, it was that nursing is the most difficult and underappreciated career.
At each level of emergency care, someone hands off the problem to a nurse. The family or EMTs bring in the patient, and the nurse tidies up. The nurse checks the patient in and fields complaints about the wait, before the doctor arrives on rounds. The doctor then gives orders to the nurse, sometimes with a dismissive air, and the nurse scurries to carry those out — after checking in on the old lady next door whose fever has spiked again. It’s an endless, unforgiving cycle with little reward.
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During one of my shifts shadowing in a nearby hospital, the chief resident came up to me and told me to follow him. He was confident, with the certain swagger one needs to make split-second crucial decisions on no sleep. Just before we entered a patient’s room, he explained that he was going to have to tell the family their mother was dying, and I should grab some tissues from the cabinet down the hall.
A minute later, I stepped into the room, tissue box in hand, and the resident introduced me to the patient and her son and daughter. The patient didn’t register my presence — she had an infection that was causing her organs to shut down. By the time her son brought her into the hospital, she had stopped producing urine.
The doctor coolly explained the situation, cringing as he told the children that their mother had 24 hours at most to live. To my surprise, neither began to cry. In a rush of words, the son instead poured out the story of how his mother had arrived to this state. She was old — over 90 — but had been living independently for a long time. Then the aides became expensive as she needed more and more time under care, so the children were forced to place her in a nursing home. The son visited her twice daily in the local home and was dissatisfied with the care. His mother sat in bed for most of the day without being turned over enough, and her diaper was changed so infrequently that sometimes it was still damp from the morning when he checked in at night. He took her home, but at that point he realized it was too late. He couldn’t tell that she had an infection, but he did know that she seemed much worse than when she had entered the home. The hospital diagnosed her urinary infection, and the end was looming closer.
The resident explained that there were two options: giving her a tough round of antibiotics that might give her another week but could also kill her, or palliative care. The children agreed that they wanted her to be comfortable.
“I was in Vietnam and she wrote to me every day,” the son explained. “Every damn day. So I just have to be here, you know?” The resident added some words of comfort and left.
I had no real responsibility other than not getting in anyone’s way, so I stayed and listened to the son as he told me about his mother’s life. The sister simply nodded, saying, “Mm-hmm, that’s right.” Eventually, the son’s cathartic speech over, I left them to be with their mother.
My grandfather died in July, a week and a half after moving home from the hospital. It was painless; his children played his favorite Beethoven symphonies, and he was surrounded by family. As my brother said, we had lost him a month ago.
At the burial ceremony after the funeral, when the priest was ready to dump out the ashes, we discovered to our horror that the funeral home had sealed the urn shut. After arguing about how to open the darn thing and whose Leatherman knife would work, our guests standing around waiting, it was decided that his burial would just have to wait. In the end, it didn’t really matter. He had already been laid to rest in peace.