Perspective
Everyone Did Their Part, But...
By Therese Zink, M.D., M.P.H.
How mistrust of the health care system thrust an elderly farmer and his family into its maze.
Late in the afternoon, the effects of my mid-afternoon cup of coffee were dwindling. I picked up the chart of a new patient with the chief complaint, “Needs a home-health nurse.” He sounded like a good patient for Melissa, the nurse practitioner student who was working with me, to see and sort through the concerns. In the meantime, I saw two other patients.
Melissa emerged. “You better sit down for this one.”
“Be as concise as you can,” I said, calmly.
The patient, 87 years old, had not seen a doctor for 25 years. Retired from farming, Mr. Gains and his wife lived alone in a farmhouse outside of town. Their son worked the land, and their daughter ran the dry cleaners in town, “just minutes” away. The daughter said she cared for them, making their meals, bathing them, everything. It was getting to be too much. Two days ago, her father quit walking and eating. Mother used a walker. They needed someone to come in and help.
Melissa and I entered the exam room. The daughter, a middle-aged bottle blonde, who was generous with her makeup, rose from her chair. I introduced myself and told her that Melissa had filled me in. “What’s your main concern?” I asked.
“It’s getting to be too much. I need some help, I thought maybe a nurse once a week...” she said as she moved toward the door.
Mr. Gains was frail, wearing a feed cap and overalls. When I addressed him, he made eye contact but didn’t say much. We learned that he spent most of the day in a reclining chair, that he was usually incontinent at night. He never had much of an appetite. Both the daughter and son checked on the couple throughout the day.
“Dad doesn’t have insurance, so my brother doesn’t want much done,” the daughter said tapping her toe on the linoleum floor.
“But he’s over 65. He should have Medicare,” I said.
“Neither of my parents have it.”
Strange, I thought, and asked the daughter to step out of the room while Melissa and I did an exam. She was reluctant to do so, so I walked her down the hall and reassured her that we would bring her in as soon as we were done. “Please, they don’t have much money,” she told me.
I reiterated that we would do the best we could.
When I returned to the room, Melissa had helped Mr. Gains onto the exam table, which was low to the floor, making it easier for elderly patients.
“Pretty unsteady on your feet, aren’t you Mr. Gains,” Melissa said.
“Do you hurt anywhere?” I asked.
Mr. Gains shook his head.
I asked the usual questions about vomiting, fever, chills, diarrhea. Mr. Gains denied all. Finally, I inquired, “Is anyone hurting you?”
Again, Mr. Gains shook his head. As we removed his flannel shirt, I noticed a layer of brown oily scum around his neck and under his arms. His odor was pungent, not like urine, but similar to that of over-ripe fruit. His T-shirt was gray. His lungs were clear, and his heart rhythm was regular. No murmurs. We removed his overalls; they were clean as were his undershorts. The brown scum was also accumulated at his beltline and in his groin. Melissa removed his threadbare socks. Near his ankles were two quarter-sized bedsores.
“Oh Mr. Gains, those must hurt,” Melissa said. “Maybe he’s sitting in the recliner like this.” She posed in a semi-fetal position.
I repeated. “Are these hurting you, Mr. Gains?”
He smiled.
He had no bruises. His vitals signs were stable, no fever. We’d need to get a urine sample and some blood. “Can you urinate for us? Pee?” I asked.
He stared at me.
I repeated it again more slowly and looked at him directly.
“Just went,” he said. The daughter wasn’t going to wait for him to drink water and give us another sample.
I left him on the exam table with Melissa and went to find a nurse to catheterize him and then to talk with his daughter.
She was at the far corner of the waiting room staring out the window at the parking lot. I asked her to follow me into my office. “He’s pretty sick. We’ll need to check some blood and catheterize him for a urine sample.”
The daughter bit at her thumbnail and nodded.
I told her about the bedsores on his ankles. When she said that she had just noticed them, I didn’t remark that they’d been there for a while. “I am worried about you being able to care for him at home. I think we should put him in the hospital for a few days.”
“Can he come home tomorrow?”
“I doubt it,” I said.
“I’ll need to ask my brother,” she said abruptly. I showed her the phone.
Mr. Gains was difficult to catheterize, but one of the experienced nurses was successful. His urine looked like milky coffee. Infection. This would be our reason to hospitalize him. Then we could get a social service consult, sort through the lack of Medicare, and see if he belonged at home. I was worried about neglect but decided not to broach this. The daughter was mistrustful enough.
I talked with the admitting physician at our hospital 30 minutes away. They’d closed the hospital in town about 10 years ago when the clinic was bought by a hospital system. Now, internists from the clinics rotated as hospitalists. Dr. Jones, who worked at our clinic, was on duty for the week. I decided to send Mr. Gains by ambulance. If the brother did not agree to allow us to hospitalize his father, then I’d push the neglect issue and hospitalize him anyway. Knowing that would only antagonize the family, I wanted to avoid it. I pulled Melissa aside and explained my plan. She was relieved.
Luckily, the brother agreed to the hospitalization. “But only for a few days,” the daughter told us.
“We’ll do what we can,” I said. I asked the nurse to call the ambulance and wrote admitting orders in the electronic medical record, pushed the save button, and then clicked send. The mouse had released a human into the maze.
Indeed, Mr. Gains had a urinary tract infection, probably from his large prostate. The hospital social worker learned that the family had never applied for Social Security or Medicare because they were distrustful of the government. Now to apply, they would be required to pay a penalty—several hundred dollars a month for every month past 65 years, over 20 years. If they qualified for Medicaid, then Medicaid would pay the penalty, but that probably meant selling all assets; the farm the son worked was at risk. The way out of this maze was bound to be complicated, with many false starts and dead ends.
Later in the week, when Dr. Jones was back in the office, I asked about Mr. Gains.
“He seems afraid of his daughter. And did you realize he’s deaf?”
I knew he was hard of hearing, but had not noticed that he was lip reading.
“He’s a good lip reader,” she said. “We used an interpreter to further investigate the neglect. Mr. Gains signs, but he was very evasive. He did admit that he and his wife are home alone most of the day.”
“I am not surprised, judging by those bed sores on his legs.”
“We’ll do what we can, but the daughter is pushing to get him home.”
I asked if anyone had checked on his wife, now home by herself.
“Not yet. The social worker is filing a case with adult protective services in order to get someone into the house.”
The next day, I saw that Mr. Gains was on my schedule for the following week. He’d been discharged; the daughter had succeeded. But the next week, Mr. Gains was no longer on my schedule. Memories of Mr. Gains gnawed at me; here was this independent farmer, now vulnerable. Would the system and community agencies serve him well? I asked Dr. Jones about him the next time I saw her.
“Back in the hospital,” she said, shaking her. “Public health did not go out, some screw-up, so the social worker called the local police to check what was going on.”
The long and short of it was that the couple was all alone. Mr. Gains had not been out of his chair in two days, his urinal filled to the brim and his trousers wet. His wife was hobbling around with her walker. She said caring for her husband was too much. So the police took Mr. Gains back to the hospital, and he was admitted through the ER. They did X-rays and found that he had an upper arm fracture and that his left hip had deteriorated.
My heart thumped. Melissa, who’d joined the conversation, stared wide-eyed. “Did we miss that?”
“We walked him at the hospital, and he did fine, but the hip has clearly been deteriorating for a while,” Dr. Jones said.
“I helped him scoot up on the exam table when he was here initially, maybe I caused the arm,” Melissa mused.
I felt guilty for not ordering X-rays on the initial admission. If we’d picked it up earlier, would things be different? The gnawing in my gut had been well-placed.
“But it gets worse,” Dr. Jones said. Another internist cleared him for surgery and ortho did a total hip replacement. The only way he could be independent was to fix the hip, they said. I was not on duty.”
“I’m surprised that he was cleared for surgery,” I said, aghast.
“Well, he shouldn’t have been. He had an MI and a blood clot in the lung.”
The three of us shook our heads in disbelief. This was a nightmare. An independent farmer was now powerless in the system with no one advocating for him. What did the family think now? They were at the mercy of the health care system they distrusted.
“We had to make him safe and treat the initial infection,” Melissa said. “Everyone was just doing their part.”
This was true. We realized that a home-health nurse was not enough and admitted him to the hospital suspicious of neglect. The social worker investigated. Dr. Jones tried to keep him in the hospital and advised nursing home placement. When he was brought to the ER, the physician ordered X-rays and found the hip and shoulder fractures. The orthopedist repaired the hip so Mr. Gains could be independent. But somehow the pieces did not fit together.
In the old days, the local doctor would have been the one caring for him in the hospital, and given the low-tech approach to treating frail, elderly patients, Mr. Gains probably would not have had the surgery. But then he probably could not have returned home, either. Today’s high-tech medicine means that there are many more players, and if a patient is unable to voice his needs and does not have an advocate, then there are no guarantees. The human gets lost in the maze.
Complicating every step was the family’s distrust of the health care system. Because of Mr. Gains’ independence, he had not signed up for the government supports to help the elderly. His health problems smoldered because he hadn’t seen a doctor in 25 years. He had not received the needed care from his children, nor were they acting as his advocates. They wanted him to stay on the farm. No question, this was neglect. But once he had entered the maze, there was a momentum that did not serve him well.
A few days later, one of the long-time clinic nurses handed me an obituary from the previous day. “Thought you’d want to see this.”
Mr. Gains had died. I shared it with Melissa who said, “Now he’s at peace.”
I told the nurse and Melissa that I thought we should go to the viewing or funeral, but that the family probably wanted nothing to do with us.
The nurse asked me if I knew where they lived.
I shook my head.
“You should drive by. It will put everything in perspective.” She gave me the address and directions.
The next day, I drove out to the farm. It took me an hour to locate the right gravel road. I tried to diffuse my frustration with deep breaths and enjoy the scenery. Fields separated by fences and distinguished by the direction of the planted rows rolled out like a patchwork quilt, stretching to the horizon in every direction. The land of big sky, today it was cornflower blue and cloudless. Corn and soybean fields were half harvested, dotted with farm equipment that looked like toys from the distance. I passed two farmers in their colossal tractors on the road, large clumps of earth left in their wake.
At the junction of two gravel roads, the Gains’ house sat in a stand of mature oaks. You could tell the two-story white clapboard house had been lovely in its day, but it was thirsty for paint for at least a decade. Tattered blinds hung in the upstairs window. Rusting cars and farm implements were parked in a patch of weed trees. One of the out buildings had collapsed. A beautiful spot, once upon a time, but like the Gains it had aged.
I realized how isolated the Gaines were because they didn’t drive. In this small community, where everyone knows everyone’s business, no one had come forward about their situation. The invisible rules of silence, not interfering.
I clocked the mileage back to town—six miles, half of which was on gravel roads. More than the few minutes the daughter had described. MM
Therese Zink is a professor in the department of family and community medicine at the University of Minnesota.
The author would like to thank Melissa Baumgarten, who was a student in Winona State University’s nurse practitioner program at the time this was written, for her assistance.