Patient Autonomy Investigation Under the Technology-Based Health Care System

Reciprocal Relationships With the Physical Surroundings

When addressing the issue of patient autonomy, Professor Edmund Pellegrino has argued that patient autonomy is “a reciprocal arrangement” (Schulman, 2008). Similarly, Professor W. H. Vanderburg believes that this autonomy involves a reciprocal relationship of a person with his or her surroundings. In his book The Labyrinth of Technology (Vanderburg, 2000), he states that people living in the world have to depend on a reciprocal exchange of matter and energy with their physical, social, and cultural surroundings in order to survive. As we go about our lives, according to the law of conservation of matter and energy, our activities can neither create nor destroy the matter and energy on which they depend. As a result, we depend on a reciprocal exchange of matter and energy with our physical surroundings. At a physical level, people need to eat, drink, and breathe and then transform these intakes and discharge the wastes into our surroundings through a variety of biological processes. Along with these exchanges, our bodies take in toxic materials and harmful organisms, such as bacteria and viruses, which create demands on our immunological resources and body energy. If these demands do not exceed the capacity of those resources, people stay healthy. On the contrary, if the demands exceed these resources, people may fall ill. Therefore, human health on this level may be interpreted in terms of a constant tension resulting from the demands made on our bodies by the exchanges of matter and energy and by the resources with which our bodies have to meet these demands. There can be no question of autonomy on this level, because according to the first law of thermodynamics, our bodily functions can neither create nor destroy the energy on which they depend. However, with intensively developed and extensively used medical technologies, people, sick or healthy, are constantly urged to go through numerous sophisticated checks and to take many medications and treatment procedures. Many of those checks, procedures, and medications are not only useless but also very harmful. Because people do not know which innovations cannot benefit their health and because their bodies may not be able to cope with these medical technological interferences, they may actually get sick because of the side effects; their patient autonomy is thus clearly violated at this physical/biological level in the health care system.

Reciprocal Relationships With the Social Surroundings

After we are born, we grow up in specific social surroundings that act as a social “womb” and are required for the acquisition of a culture (Vanderburg, 1985). To become human, we require socialization in the social womb formed by our community. The need to grow up by learning to make sense of and live in the world imposes certain demands on the social resources of our surroundings. At the same time, the community begins to make demands of the children that grow up in it, expecting them to express themselves and to behave in an acceptable way. As we mature, the reciprocity between us and our social surroundings becomes increasingly important. For a community to function, people have to provide social support to others, as they, in turn, receive social support. This reciprocity involves the placing of demands on a person’s resources. If the demands that our social surroundings place on us exceed our emotional, mental, or spiritual ability to deal with them, we may defend ourselves by withdrawing, and this may turn into depression, anxiety, and mental illness or suicide. On the other hand, when the demands placed on our resources are too small, it is likely to lead to loneliness or social isolation, which can then translate into anxiety, depression, substance abuse, and mental illness.

Part of the reciprocal interactions that exist between people and their social surroundings are the knowledge and information components. In our surroundings, we find a variety of institutions: the university where we study, the corporation where we work, a medical system where we turn for help when we are ill, and so on. All of these places certainly place demands on our knowledge. We must be familiar with the terminology they use, with any theories they may depend on, and with any technologies that are involved. Again, if the knowledge demands made by these institutions far exceed what we are capable of handling in terms of our resources acquired during our education and our experience, creativity, imagination, and culture, we will be unable to function in relation to these institutions or systems. We may have the sense that we are not getting enough information and that we need more to make informed decisions. It is again a reciprocal relationship, because we also place demands on these institutions or systems. We may challenge some decisions that are being made that will affect us. We may come up with better ways of doing things and challenge those of these institutions or systems. We may question the integrity of the information we receive and demand explanations. We support our society by paying taxes and being good citizens, but if we do not have the support that is culturally acceptable and financially feasible, such as basic education and health care from our society, we may feel a sense of unfairness. Specifically, if we do not have timely access to our health care system when we are sick, we may feel that we have been robbed of our autonomy as patients.

Reciprocal Relationships With the Economic Surroundings

“Money talks” is true in almost all societies. On the macro-level, if a country is doing well with its economic development, it can contribute more economic resources to people’s health care, and people’s general access to the health care system is usually better. In the same vein, on the micro-level, households will have a higher income and can afford more for their own health care because income reflects spending power, housing, diet, and medical care. Thus, the financial supply and demand for health care in this case is well balanced, and people feel more secure with their health care in a well-performing economy. In other words, people feel they have more autonomy with regard to their health care. Numerous studies have proved that socioeconomic status is one of the strongest and most consistent predictors of a person’s morbidity and mortality (Blaxter 1987; Marmot, Kogevinas, & Elston, 1987).

Therefore, a country’s healthy economic development and people’s meaningful and fairly paid employment are important factors to ensure a high level of patient autonomy in a specific health care system. However, a rich country and wealthy people may not always guarantee a high level of patient autonomy. It really depends on how well the economic resources are distributed and consumed. If a health care system is encumbered with overconsumption and abuse, for example, that system will not last long, and patient autonomy cannot be secured either. Especially in the modern world, medicine and its technology should be well advanced and reasonably priced. However, patients are generally vulnerable in terms of making treatment decisions with informed consent. Even if you are well educated, when you walk into a medical clinic or a hospital, your knowledge resources may be completely inadequate for the demands placed on them. We may not understand the words that are being used, the procedures that are offered, or the alternative treatments that are discussed. Despite the widespread availability of medical information on the Internet, when it comes to the appropriate course of treatment, consumers of health care are still highly reliant on the advice and guidance of their physicians. In this situation, if there are physician-induced prescriptions because of their economic interests, most likely the patients will experience redundant exams, overmedication, and overtreatment, which induce overuse and misuse of medical resources.

As we know, a nation’s medical resources are very limited even in developed countries, such as the United States and Canada. In the United States., it has been cited that there were about 46 million people who did not have medical insurance before President Obama’s health reform. In Canada, many people do not have family doctors, and the waiting time for treatment is much too long. In both countries, there are many people who cannot afford dental care, medications, and even prescription service fees because of the increasingly unaffordable prices. This issue of accessibility/availability is a prerequisite of self-determination and informed consent as an autonomous patient. If patients do not have any chance to see their doctors, any talking about patient autonomy is meaningless. Therefore, the right of patient autonomy should include the right of patient accessibility to the health care system. The problem has become so critical that, on the one hand, there is a shortage of health care resources, including health care professionals, hospital beds, medications and devices and, on the other hand, there is much waste in terms of misuse and overuse of medical resources in our health care system. In either situation, patient autonomy has been diminished.

Once again this reciprocity involves the placing of demands on people’s economic resources. If the demands that our economic surroundings place on us exceed our financial ability to afford them, we may defend ourselves by withdrawing, which, in turn, may turn to depression, anxiety, and more serious illness or even death. We feel secure with our autonomy only if the financial demands of our health care system do not exceed the resources we have because of a sustainable income from employment.

The Loss of Patient Autonomy

Patients must be able to place complete trust in their doctors, especially in life-threatening situations. This is a public good that we must protect. But can we continue to have faith in the doctor’s ability to do what is necessary on our behalf? This is a topical question, since other commercial interests now feature more prominently in the new health care system as far as health care facilities, insurers, and care providers are concerned.

It is clear that patients may lose their autonomy because of the vulnerability of their physical, social, or economic status. For example, a person may not know his or her sickness is due to his longtime exposure to pesticides that have been applied to his or her neighborhood golf course; the death of a patient could be traced to the sluggishness of health care operations, such as the complexity of hospital registration and rigid medical professional protocol; a treatment for a patient may be declined because of his or her financial difficulty or his or her doctor’s conflicting social or religious beliefs; or patients just may not know what their other options are, other than the approaches that their medical professionals have made for them. citalopram, known as Celexa in the United States, which was widely prescribed for children suffering from autism, was proved to be no more effective than a placebo (King et al., 2009). When the study was published in the Archives of General Psychiatry in June 2009, it was estimated that one third of autistic kids in the United States were taking the useless but poisonous drug. Dr. Bryan King, director of psychiatry and behavioral medicine at Seattle Children’s Hospital and leader of the study, said he was shocked to find that citalopram did not help patients. Not only was the placebo slightly more effective, but the drug’s side effects— such as impulsivity and insomnia—were at least twice as bad, the study found.

In the United States and Canada, guidelines advise doctors to use antipsychotic drugs cautiously and temporarily. But in many nursing homes in North America, many patients with dementia are routinely given the drugs for more than a year. According to a study published in the New England Journal of Medicine, for the treatment of psychosis, aggression, or agitation in patients with Alzheimer’s disease, the adverse effects of taking the drugs well offset their benefits (Schneider et al., 2006). Some experts in this area believe that in some cases, people would be better off with no medication. Simon Lovestone, the Institute of Psychiatry at King’s College in London, said that psychiatrists should try environmental or behavioral therapies instead of antipsychotics (Ballard et al., 2009). Experts are not sure how the antipsychotics increase patients’ risk of dying. But they think the drugs could be damaging to the brain, and their sedative effects make patients less able to exercise and more susceptible to deadly infections.

Another study conducted by a team led by a team of researchers at Erasmus University Medical Center in the Netherlands concluded that up to 42% of prostate cancers detected by a common blood test might never otherwise have come to light in a man’s lifetime (Neergaard, 2009). And this overdiagnosis of the condition has led to countless unnecessary biopsies, surgeries, and radiation treatments, not to mention all the needless anxiety and stress involved. The study reinforces the message that we are overdiagnosing prostate cancer.

These examples come up with one question: whether the patients were well informed before having been prescribed the drugs and the tests. If a health professional does not know the information brought out in the above cases, he or she may continue to prescribe these drugs for his or her patients. Then, obviously, the patients’ autonomy is compromised.

Another question one may ask is why these drugs and tests were authorized at the early stages. Apart from a context in which science is often sketchy, false claims are often made, and the need for treatments is so great that drug companies are pushing industry leaders and politicians to make decisions favoring their economic interests. In 2008, the U.S. and Canadian governments intended to have all the females aged 11 to 26 vaccinated with a vaccine called Gardasil, produced by Merck, or Cervarix, from GSK (GlaxoSmithKline), to prevent cervical cancer, believed to be usually caused by nonprotective sex at an early age. To push sales, both these companies wanted to give preventive shots to all schoolgirls. To do this, the vaccine makers brought the public’s attention to cervical cancer by providing money for promotion activities seen by patients’ and women’s groups, doctors and medical experts, lobbyists and political organizations interested in the disease, sometimes in ways that skirted disclosure requirements or obscured the companies’ involvement. At the same time, advertisements (or propaganda) were heavily aired before shows such as “Sex and the City” and “Law and Order,” in which a multiethnic cast of young professionals urged girls to become “one less statistic” by getting vaccinated. In the United States, hundreds of doctors have been recruited and trained to give highly paid lectures about the vaccine, and some have made hundreds of thousands of dollars. Politicians have been lobbied and invited to receptions urging them to legislate against a “global killer,” and former state officials have been recruited to lobby their former colleagues. The pressure from industry and politics to give the vaccine to all girls once they reached the age of 11 or 12 was incredible. This case shows again how patient autonomy was completely ignored in the following three aspects:

Once again, the story is clear about how the patient autonomy may lose out in the North American health care system, which fails to address three of the most important issues, costs, harm, and treatment options, which prevent it from serving patients’ real needs.

The Loss of Health Professionals’ Autonomy

To many doctors, a patient is the number one priority, and they attach great importance to excellence in expertise and skills, integrity, responsible patient care, and good medical practice. Almost all doctors want to be in a position to apply their knowledge and skills to the benefit of their patients. They, therefore, want to be able to make their own decisions on diagnosis and treatment. This is what we call professional autonomy.

But how much autonomy does the doctor still have? After all, the patients have their own contributions to make. The doctor, however, must abide by protocols. Doctors increasingly work as part of a team and must be able to explain what they are doing to others. So how can they possibly be autonomous? There are, indeed, limitations. However, ultimately it is the doctor in whom the patients place their trust, not the hospital directors, the health insurers, or the policy makers. Stakeholders do recognize the importance of the doctor’s professional autonomy, but also that they are, at the same time, imposing increasing limitations on this autonomy. The risk here is that doctors may nevertheless end up losing their freedom of action. It is this freedom that needs to be more closely safeguarded.

The Loss of Hospitals’ and Hospital Managers’ Autonomy

If both the patients and the doctors are losing their autonomy, then one might assume that the hospitals and their managers must gain the autonomy. The role of a hospital includes, but is not limited to, allocating responsibility, the preparation of service plans and financial plans, and the preparation of personnel policies and transition arrangements. In a word, a hospital has to operate in an effective manner to serve the public by improving the procurement and management of drugs, supplies, and equipment; offering rational clinical unit budgets and effective management, recruiting, and retaining; providing training and changing staff levels; making more efficient use of facilities and encouraging shorter patient stays; and reducing the inappropriate use of drugs, diagnostic tests, and health services. However, the term autonomy carries a number of connotations such as good governance, contractual relationships among hospitals, communities and government, and market exposure. Thus, the identity of an autonomous hospital should include full freedom of decision making in the areas of strategic management, procurement, financial management, self-administration, and clinical governance. Currently, in North America, it is hard for a hospital to meet the different interests of government, communities, insurance companies, and shareholders.

Both the United States and Canada operate under a system of federal government, whereby separate states, provinces, and territories are autonomous in some matters but subject to a central government in others. Whereas the U.S. health care system is a combination of private and public services, all health insurance in Canada is obtained through the government. Thus, the Canadian system is referred to as national health insurance, or a single-payer system. This does not make much difference, however, for either private or public health care services in terms of maintaining high-quality care and providing access in the face of rising costs, increased patient volume, and dealing with the long-term projected costs for some health programs. First of all, there are the skyrocketing costs. Health care costs rise not only for patients but also for hospitals, as costs associated with medications and supply items are continually pushing upward. Hospitals may have to purchase some unnecessary advanced technologies to attract talented doctors and to compete for patients—purchases that have contributed to the huge waste of tests and medications. There are also the rising costs for trained professionals to keep them from moving to other hospitals for better pay.

The second factor is patient safety. It is a major concern not only because of malpractice lawsuits and bad press but also because of high fines imposed by federal and state or provincial regulators for safety violations. Patient safety concerns include medical errors and new diseases that are not only dangerous but can also spread easily.

The third is staffing. Across both countries, there is a staffing shortage in many positions that require specific training. Nurses are at the top of the list. In remote areas that may be too far from larger cities, hospitals struggle to recruit physicians with different types of specialties. However, in big cities, hospital staffs working in the public sector lack motivation to deal with the large volume of work because of rigid manpower management rules and regulations. So it is undeniable that the hospitals cannot meet the needs of the population, especially the underprivileged and disadvantaged in both the United States and Canada. Therefore, hospitals are losing their autonomy in the current system.

In sum, in a system where patients see the new technology as a barrier to their relationship with their physicians and complain that the doctors spend too much time looking at the screen rather than at them, for example, obviously the patients’ autonomy cannot be guaranteed within the system. If patient satisfaction wanes, and if the communication between patients and physicians is blocked, doctors are more likely to alienate themselves with their innovations. The technology that they have created will not work well if they fail to consider the patient’s perspective. In the same vein, if doctors work in a system in which every piece of work is counted, every procedure is coded and followed, and every patient is numbered, they will not feel that they have much professional autonomy. The system is not designed to suit their specialty and workflow. Some of these technologies end up taking more of the physician’s time than the “good old way” of doing things. And the hospital administrators, who are not MDs or not in the medical profession, cannot fully appreciate how cumbersome, distracting, and unproductive an unfriendly technology can be for a physician. Many hospital administrators, in order to compete for patients, doctors, and hospital reputation, invest “big money” to shop for new technologies. It does not matter whether the technology is really needed or not, or whether its adoption is more beneficial or not. Sometimes, the acquisitions are pushed by the manufacturers, or are due to the mistaken perception “the more technology, the higher quality.” All these may result in a huge waste by overuse or underuse.