Updated: Aug 20, 2021
US health care system is an illusion, great to make money, bad to promote health and save lives. Technically speaking, US does not have a system of health, but rather systems controlled by the private sector operating in a free-market model. Health companies have their own systems of healthcare services. In addition, there are governmental plans and programs, such as Medicaid and Medicare. Although they have government funding, they operate inside the health market depending on the private sector, in a promiscuous relationship that allows, for example, a private provider to refuse to serve a Medicaid patient because this plan does not pay what providers want. Nobel Laurate economist, Angus Deaton, and his partner, Anne Case, both professors at Princeton, suggest a good definition for US health care: “The American health care industry is not good at promoting health, but it excels at taking money from all of us for its benefit” (The New York Times). I couldn’t agree more with their statement as a bioethicist and, now, a person who needed to use this system for the well-being of my family.
The US perspective of health care is dominated by a conception that public, state funded, and universal health care does not work. Socialized and universal systems do not provide the health services people need, when they need, and with the high quality they deserve. These systems do not have incentives for scientific development of medical care, once there is no competition between different market players. Patients must wait a long time to access services and those who are rich cannot purchase better and faster services. They will receive the same health care as any other person. This lack of privilege shocks the US view of individualism and idolatry of money and power. A good example is the contrast between the health care received by President Donald Trump and UK Prime Minister Boris Johnson when both were infected by COVID-19. While Mr. Trump has an entire hospital and dozens of health professionals exclusively serving him, Mr. Johnson was in a regular ICU, among other British citizens, receiving care in a unit of the National Health Services, the UK public, socialized, and universal health system. There is no indication that Mr. Johnson did not receive the care needed to recover his health, but there are many health disparities and evidence that many Americans cannot access the care they need because lack of health insurance.
Although there is resistance of most US citizens against a universal public health system, there is a growing movement of voices asking for health care as a social right in a model of Medicare for all. Honestly, I don’t have hope this will advance anytime soon in the USA. But it is a good sign that people are realizing the limitations, injustices, and fragilities of the current model under the free market. COVID-19 pandemic, the way it has disproportionally impacted marginalized communities, and the accessibility to vaccines (through a system of universal access publicly funded) have contributed to reveal the contradictions and inequalities of the US health care. A few weeks ago, I experienced these contradictions at first hand from the side of the patient’s view.
US Health care, with its promise of a high developed and quality care, is an illusion. It is true that US medicine is very technologically developed. Perhaps, the US is the country with the highest medical technology in the world. The development of a new category of vaccines (mRNA) by the private companies Pfizer/BioNTech and Moderna shows the capacity of the medical technology in this country. But different from accessing these vaccines, access to this very advanced medical technology and its benefits are not universal. It comes with a high cost, accessible only by those who have the privilege of a health insurance and capacity to cover out-of-pocket expenses of co-payment and deductible, or if you are very rich and can pay without any struggle. On the top of this injustice of access to health care based on privilege, US health care is an illusion not delivering what is promised. This was my experience.
I have very good health insurance and enough money to cover extra out-of-pocket expenses with health care. I have this privilege, thanks to my job, although I fight against it because I want all people to access health care as a human right.
Being at the side of the patient, I realized through an unpleasable experience that people do not matter for the US system. Its advanced technology creates a false sense that you have the best health care in the world. The basics of care, with ethics, professionalism, humanism, and medical skills is so distant from this technology. It seems that care for the sick and advanced medical technology do not communicate to each other. US medical facilities are impressive, rooms for patients look more like a hotel, including even a food menu to choose what to eat. However, all of this is only cosmetic in an industry that makes you pay a fortune for a service which its aesthetic aspect is great, but the razón-de-être, that is, the care of health care, is poor.
Here is my experience. My wife and I were joyful when we discovered she was pregnant of twins. Because my wife has a chronic disease and was expecting twins, her pregnancy was qualified as a high-risk pregnancy so that she could have more appropriate care throughout this beautiful journey of generating two new lives. She had 34 weeks of great development, going to all appointments with a physician specialist in high-risk pregnancy. Coming from a different country, I always thought it was strange that our doctor never made a physical examination of my wife, a basic thing that I experienced in other countries. All appointments seemed to be like an “assembly line process.” Maybe this is not a good metaphor, but I mean that every appointment was fragmented in several pieces. Each piece was performed by a different person, almost never the same personnel appointment after appointment, until the last piece: the physician, who came to simply tell what she saw in the score of tests made in the ultrasound and in lab-exams. The informality of all this was unbelievable. It is worth to stress that all occurred in a great medical facility.
During the appointment of week 35, my wife was not feeling her best. She was very uncomfortable, and her feet were swollen. At the appointment, her blood pressure was high, but nothing to be too concerned about, according to the physician. The doctor ordered some lab-exams. After that, we went home and later in the day the result from the labs came back with concerns for pre-eclampsia and it would be good to re-do the tests a few days later. We did that three days later, following all physician’s recommendations. And here began a saga of frustration and disappointment with the “best, highly advanced health care in the world.”
At 35 weeks and four days, my wife and I went back to the hospital to collect blood for new tests. We knew what tests they would be because they were the same as those drawn three days earlier. However, the professional who received us, whose title said medical assistant, had a different order in her computer and she didn’t know exactly what she was supposed to do. She transmitted a lot of insecurity. A great failure of the communication between our physician and this professional occurred in front of us. The computer system, that was supposed to work correctly, was showing something else. The medical assistant left the room and came back saying that she talked to the doctor and now she knew what tests should be done. We left the hospital with a sense that something was wrong, and nobody could tell us. About three hours later, my wife answered a phone call from the physician that she should return to the hospital because she has pre-eclampsia and that the babies must be delivered that day via C-section.
We went to the hospital, now to the emergency room, where we were received first by a security officer than any health professional. I noticed that in the check-in hall of the ER had more security officers that any other professional. So weird. I was shocked realizing that the entrance of an ER in a fancy, modern, and highly developed hospital in the USA looks more like a police station than a healthcare facility with health professionals ready to care for your needs. (And I am not mentioning all the bureaucracy with the paperwork that comes first then the care). While we were waiting for somebody to come to take my wife to the room, security offices were staring at me as I was a bad person who put this place at danger. This was so uncomfortable. Perhaps it was because my race. I am a Latino from Brazil with a brown skin with a white woman in pain. My wife and I experienced a lot of emotions in a mix of excitement, insecurity, and fear.
When we finally arrived at the room and nurses came to care for my wife and later our OBGYN, I realized we were in a hospital that seemed to be a mix between hospital equipment –such as a hospital bed, infusion machines, and ECG – and a hotel with a huge private room. I must admit that it is nice to be in a beautiful, comfortable, and private room like this one. But this is only an aesthetic aspect that has little to contribute to the health care we or any patient need. This aesthetic aspect makes patients to be impressed with the place and create an illusion that we are receiving great health care, but not necessarily. What I am calling aesthetic aspect contributes to make “health care” a luxurious, expensive service that only the health market gains from, not patients who have to pay for this secondary aspect of care without a direct correlation with the medical care needed.
On the one hand, US health systems offer great aesthetic and comfortable facilities. On the other hand, health care in itself – in US marked by its highly advanced medical technology – is full of contradictions, making the care for patients a frustrating experience.
My wife went to deliver our children in a C-section with 19 health professionals in the operating room among many machines. They didn’t meet some of our requests, such as not having inappropriate small talk while doing the surgery and other things to make this experience a gentle C-section. As a supporting person with my wife, I was divided between my excitement for the birth of our children, worried by their and my wife’s well-being, and the frustration of hearing inappropriate conversation between the surgeons.
The night of the delivery was long. The children needed to go the NICU, but they were doing very well for premature babies. But my wife had a long night of suffering with pain, a hemorrhage, and sad for not being with her children. The next day, we went to the post-partum room. The twins responded very well to the extra support they received and less than 24 hours after the delivery, they were in the room with their mother and me. But the contradiction of the system did not end here.
My wife had a difficult time recovering and had to stay extra time in the hospital. The contradiction of the system with a great look of almost a five-stars hotel and a precarious medical care was consistent throughout our entire time there.
Attending physicians and residents would come to the room as they didn’t know what was going on. It seemed they didn’t have access to the patient file, or they didn’t read it. My wife had issues with her incision that was bleeding. Blood vessels were open inside. First, an on-call doctor said that the bleeding was normal with no need of any intervention to stop it. Then the bleeding increased, and another physician affirmed the need of re-doing stiches in part of the incision. After a long wait while she was bleeding, the attending physician and a resident came to do the procedure. It was a show of inappropriate actions. So unprofessional in their way of acting and lack of medical skills. One simple example of this was they broke the sterile camp by touching their pagers with their hands after wearing sterile gloves, increasing the rick of infection. When they prepare for the procedure, they didn’t have all material ready to be used. Even the stiches lines were not ready. In the middle of the procedure, with an open wound bleeding in my wife’s belly, a physician said: “Where are the stiches?” and the other responded: “They’re here” taking them from his pocket. Observing that, while supporting my wife, was a terrible feeling of vulnerability and impotence.
This was not all. They couldn’t solve the problem and the bleeding didn’t stop after they left the room. Late in the day, one of them came to re-do it again. Questioned about what he and his colleague did earlier, he got mad and ridiculed the situation was not a big deal. Sarcastically, he said to the patient: “This is okay. It is not a life-threatening issue, and you are not going to die because of that.” Instead to transmit security and calm down the patient, the doctor made jokes, creating more anxiety and fear. He decided to use a different technique and cauterize the vessels. He made the same mistakes, with the addition of inappropriate comments and jokes on the top of a patient who was aware and extremely physically and emotionally fragile. I was thinking, what was the point to be in this beautiful facility, pay a fortune for this, and receive a kind of care from physicians who can’t do the basic of their profession, that is, acting professionally, ethically, humanely, and with good medical skills?
The arrogance of the physicians was something to notice. They didn’t like to be questioned or challenged. US medicine has absolutized the patients’ autonomy as the highest principle of medical ethics. As a bioethicist, I am a critical of this US absolutization of autonomy, particularly because is based in an individualist conception of this ethical principle. In addition, supporters of the US system argue that one of the strengths of this system is the ability of negotiating with providers; negotiate care and prices. In my experience from the view of a patient or a consumer (as health markets refer to us), US health care manipulates patient’s autonomy, especially in moments of fragility. We can’t negotiate because we don’t have a voice. Autonomy and negotiation are limited to follow physician’s decisions and saying yes to accepting certain procedures and hospital protocols or not, leaving the facility. Patients must accept a full pack offered or go home. There is no space to use practical wisdom with patients to find a justice measure when patients question elements of this full pack offered. Physicians do not like to be questioned. They are not humble to recognize they don’t know everything, and they are human who are susceptible to mistakes. Based on my experience, I realized that all US discussion on autonomy and capacity of negotiation in health-related issues are only theoretical; in most of the cases for not generalizing, especially in those situations you are very vulnerable and must trust in the providers. Ironically enough, even before we left the hospital, insurance and hospital administration already contacted us to talk about costs and payments. In this, US health care is very developed, highly skilled, and efficient.
Perhaps, some of the readers of this reflection are questioning that I am not being fair in my assessment of US health system. My experience represents only an unfortunate one. I agree that my empirical perspective does not apply to many physicians in the USA and to some health institutions. But I fear that those, unfortunately, are the exceptions. US health care is an overload of advanced technology, huge structures, and aesthetic medicine. However, it lacks ethics, humanism, patient-centered care, professionalism, and good basic practical medical skills. In other words, you pay too much for a beautiful building and a poor medical service.
In conclusion, the fragility of the US health system is not only its mechanism of creating injustice and inequalities through structures that perpetuate structural violence against historically marginalized and poor communities, but also the health services accessed by those who can afford them are below an acceptable level of care with quality, ethics, and humanism. Health care is an art based on evidence-based science and ethical principles to restore health and promote well-being. It should be a humble and noble work of servicing people when they are very fragile and vulnerable. Most of the aesthetical aspects of US health care are not necessary for promoting good care. One can’t offer good medical care without competency, skills, professionalism, humanism, and ethics. Medical technology comes to improve the medical care without replacing the art of care that all physicians should have and has been emphasized since the Hippocratic Oath. In my experience, I noticed that those physicians who crossed my way were totally dependent on technology, had poor practical hand-skills, and did not know how to deal with a fellow human being who was sick and vulnerable. They think they are the most intelligent person in the Earth who can’t ever being questioned. (I remember the first conversation with our OBGYN with her stressing how smart she was for having more education than an average person). They don’t want to be held accountable for their poor skills and ethics, and systems are developed for not holding them accountable for failures in their art. I finally understood why the US is the country with most lawsuits against physicians in the world. It seems this is the only way to hold them accountable. Unfortunately, everything moves around and towards money. Life and well-being do not have price; a statement that sounds a utopia in this capitalist society. As said at the beginning, this health system has excellence to take money from us. And I add this system is expensive and an illusion which we pay too much for a poor experience. Humility is my last thought. For a universal health system based on health care as a right for all to work, humility is needed for all people to understand that they are not the only persons who needs health care. Every individual needs to provide their contribution (contributive justice) and have a little patience, so everyone is supported (distributive justice). Although this perspective of justice in health is not part of US system, its highly advanced technological medicine (and individualist) also needs humility, especially from its physicians to understand that they must be humans ethically committed to vulnerable people before they are medical doctors.
*Alexandre A. Martins is 2021-22 Hubert Müder Chair in Health Care Ethics at the Albert Gnaegi Center for Health Care Ethics - SLU; an assistant professor at Marquette University in Wisconsin, USA. Author of several articles and books in social ethics and bioethics, such as Covid-19, Política e Fé: Bioética em diálogo com a realidade enlouquecida (Gênio Criador, 2020); The Cry of the Poor: liberation ethics and justice in health care (Lexington Books, 2020)