Medical Care From The Patient’s Point-of-View

By Mark Hayes

I worked as an officer for a company which served many thousand physicians and patients. But at times I forgot there were patients in the association because I spent hours every day in very pleasant and frank discussions with hospital administrators, physicians and people who are specialists in “managed care.” We talked about the costs of health care services and how to price them competitively. We talked about access to the health care system and how to control it, expand it, or limit it. We discussed marketing techniques and how to achieve greater market share. We seldom mentioned patients unless there was a pressing problem to solve regarding the cost of their care. We assumed that patients would always be there. We presumed that the health care they were getting was good and that they would continue to want it in abundance. We thought that the main problems we had to solve were high costs and too many services; so, we created elaborate systems to track health care providers and their patients, the services given and received. We had it right on paper; it was part and parcel of our discussions, but it didn’t work and we had to ask, “Why?”

The God of Medicine, Asclepius, rudely brought me a new awareness of some answers in the past few years. Five members of my family have had serious injuries or disease that put them in the hospital subject to the skill and whim of teams of doctors and nurses. Consequently, I have spent unusually long periods of time sitting in hospital corridors and clinic waiting rooms watching what happens when patients receive medical care. It has given me another point-of-view. Not one of my family members has died. With the exception of my father, everyone has recovered with less disability than if they had not been cared for by medical professionals.

My father had two strokes. Prior to having strokes, he had four major operations — three on his knee and one on his carotid artery. He was in bad shape before his strokes, but he is in very bad condition now. He caught pneumonia last summer and had to be hospitalized. He was given antibiotics and recovered; but when he started physical therapy, he was too weak to respond. The doctor decided he was not receiving enough nutrition by eating normally, so they put a feeding tube directly into his stomach. They postulated that the strokes had affected his swallowing and that he might have contracted pneumonia from ingesting food particles into his lungs. At the time, these opinions and treatments seemed reasonable, but they still bother him and they continue to bother me. We asked if there was a better method for supplying nutrients rather than feeding him through a tube? Or was that invasive procedure merely the easiest medical option for the staff ?� ( The feeding tube turned out to be the right solution because the stoke had damaged his ability to swallow, but we didn’t understand that when the procedure was done.)� The physicians got the results they predicted. My father got the nutrients he needed and he got stronger, recovering from the worst of his respiratory problems. But he is still disabled and more dependent now than he was before hospitalization and treatment. Is there any way we will ever know the connection between his treatment and his current condition? Is the system designed to distance patients and families from that knowledge?

My father was not hospitalized in just any neighborhood hospital. It was a glass palace. Maybe it was not the Residenz, but it was grand enough by Texas standards. The reception area was designed better than the entrance to Intercontinental Airport, but often no one was sitting at the desk to receive you. The business office had a dozen private booths, but only one person was there most of the time. The nurses’ stations were designed so that they could do all of their paperwork and communicate with every patient over intercoms without ever leaving their chairs.

In the course of my father’s treatment, my mother and I noticed something about my father’s nursing care that seemed to be a common experience with many patients. Every nurse was polite and expressed concern. They answered when Dad called them on his speaker. But to quote Dad, ” Just a minute,” from a nurse really means, “In about an hour.” Is this simple failure to deliver patient care a function of a failed system, or is it the subject of a general decline in excellence across the medical spectrum? Or both, one design causing the other? I believe it is the locus of a system’s failure. Hospitals have designed nurses’ work stations to divorce them from direct contact with the patients. Intercoms, monitors, computer terminals have replaced walkabout — that direct Florence Nightingale tactile reality of confronting patient needs face to face on rounds. These workstations were a most logical design. They should have worked, except that “just a minute” meant “in about an hour” and that hour to a patient who is lying in their own feces, or whose tubes are leaking the contents from some bag onto their bed, is a long, uncomfortable hour. Simple structural design and system implementation have effectively insulated, distanced the nurses from the patients. This failure in attention to my father’s needs may not have been life threatening, but it was not quality patient care either.

There were other problems as well. The chart they kept on my father supposedly recorded the fluids he took in and the fluids he let out, but the record was wrong. For billing purposes, the paper record did not match the number of services he was actually given. Bean counting had supplanted the true administration of medical service. There was no honest connection between what was being recorded and what was actually happening. Nothing happened medically that made much difference and no one really cared about it except my mother, my father, and a few patients they talked with who have had the same hospital experiences.

My wife’s experience during her hospitalization for a kidney stone illustrates another aspect of system failure. About ten years earlier, her doctor had spotted a stone in an x-ray, but it was not causing any pain nor blocking her urinary tract so nothing was done about it. However, one evening the stone moved and blocked her right kidney duct. Her kidney became infected and she was in excruciating pain. I took her to the nearest emergency room, but it was so full of people who had minor problems, no doctor, no insurance, that it was going to be all night before we could even get through the admitting door. We left and drove 35 miles to a medical center hospital in Houston. She was examined about an hour later and they did what they could to make her comfortable, except give her anything for her pain. The doctor examined her and finally agreed with us that she probably had a stone blocking her kidney duct; however, he had to confirm it with x-rays. Eight x-rays were taken over eight hours and they refused to give her any pain medicine until it was nearly morning. Were all those x-rays clarifying the diagnostic or merely covering the possibility of a malpractice suit? She finally told them that she didn’t care whether they confirmed whatever they wanted to know about the stone or not; they could either stop the pain or cut off her head.

The next day, they pushed the stone out of the duct back into her kidney and they began to treat her with antibiotics to cure the kidney infection. She stayed in the hospital for one week; the second week they removed the stone by lithotripsy. She described the treatment as being hit in the back two hundred thousand times with a baseball bat.

During her hospital stay, she had these observations:

1. The staff had more to do than time allowed; mostly, the medical staff did paperwork. She had the sense that they might have cared more about patients, but that option had been taken from them. She compared the situation with her own experience in school where teachers have more to do than time to do it — and most of it does not involve teaching students. As a consequence, they do not teach as well as they are able and the students do not learn as best they might. The consequences with patients are not quite as obvious because most patients have excellent immune systems and will recover in spite of the care they are given; and

2. We have shackled physicians to the point where they are incapable of listening to specified patient complaints and histories. Handcuffed by regulatory agencies, reporting requirements and the fear of malpractice suits,� patient’s complaints and self-diagnosis do not carry quite the weight they should with providers who are more concerned about meeting a patient’s lawyer than meeting a patient’s needs.

It is a question of emphasis, of priority, of focusing on the purpose of health care. It is a matter of stressing one activity over another. Given the purpose of health care — prevention and treatment — bean counting is not more important, nor of a higher priority, than providing quality care for the patient. Our system is skewed and we have lost our way whenever that happens.

The problems in these examples remind me of two books published in the sixties: The Decline of Pleasure by Walter Kerr and The Hospital by Jan de Hartog. Kerr’s book is about the dominance of mediocrity in America. Kerr thought people bought tasteless ice cream, plastic clothes, and shoddy products because that was all mediocre people could produce and all the public would buy. Kerr was pessimistic, but he raised the question of how we will restore the taste of salt when salt has lost its savor and we are no longer capable of discerning the difference. In medical care, what has been lost is the essence — the unconditional care and rehabilitation of the patient.

Let me elaborate. We know that making money practicing medicine is an old tradition; otherwise, they would not have tried to fix fees in the Code of Hammurabi. However, the doctors of the last two generations have expended a lot of time telling themselves and us that patient care comes before money. The reason is very simple: patients are more important than money. Money only becomes more important than patients when it is “your money” and “their people.” And that is when the main purpose of health care is lost. That is why doing the paperwork is more important than caring for the patients. The insurers who pay do not audit patients, they audit records; so, the medical staff works on the records first.

Jan de Hartog’s book, The Hospital, has come true for our whole society. He told us about Jeff Davis Hospital in Houston when that county hospital was abysmal and patient care there was horrifying. He talked about doctors and nurses who acted completely normal and calm under conditions that other people would have rightly called insane. He called this a “disaster syndrome.” Since he wrote his book, the “disaster syndrome” has been pushed into the patient’s rooms and into the waiting rooms, out of sight of the providers of health care. Now all of the talk is about money — who will pay it and who will receive it. Get the records right! To hell with the patients!

Today, we can’t tell the difference between good and mediocre health care. Patients no longer have the pleasure of being cared for unconditionally until they are well. Health care workers know they are working on phony paper systems and not on patients. Physicians know they are not free to do what their gut instincts tells them they must do to really help people. They are afraid of their art. They are afraid of the burgeoning malpractice activity. Everyone is stunned, but they behave normally. They don’t know there is no salt on the food and no excellence in their work.

Since the outcome of the medical care given my family has been essentially good, you may ask: “What is he complaining about?” After all, nobody died and he paid practically nothing other than his insurance premiums for hundreds of thousands of dollars in medical and hospital care. Well, the luck of my circumstances had little to do with the problems I’ve seen. It all gnaws at my gut because I know that whatever was wrong with the care given to my family and the other patients who were with them in the hospitals, is the same reason we often despair about fixing what is wrong with health care in America.

What will we do in the face of these historical problems? How shall we cope with these pressing issues? I am sure everyone will not become a Mother Theresa, and that is not necessarily what we need. We could use a few thousand of her kind, but we really need a few hundred thousand plain folk who know they are not mediocre and who go ahead and take care of people in spite of the insurance companies, the government, and their own greed. Marshall McLuhan said, “There is no inevitability as long as there is a willingness to think.” And act! We do not have to accept less than what is good, less than what is wise, nor less than what we are able to do.

Comments are closed.