Changes in the Patient’s Bill of Rights

Abstract

Understanding the changes of the Patient’s Bill of Rights over the time period since it has become law is imperative because it is easy to see exactly what these changes have done and how the law has changed and become the Patient Care Partnership. These changes have been made in regards to readability, a patient’s ability to understand their rights, and, most importantly, how those rights may have been changed over the past four decades in order to give less rights to the patients. The wording of the Patient Care Partnership has allowed more motivation for insurance companies, a less clear understanding of what rights a patient actually does have, and an simple, comprehensive look at an incredibly complex law. This article examines the nature of the change over four decades in order to examine exactly what has changed and properly understand the Patient Care Partnership.

Significance of The Patient’s Bill of Rights

The Patient’s Bill of Rights, initially put into law in 1973, has undergone several changes over the time period since it has become law. There are many factors that have affected the Patient’s Bill of Rights including changing political attitudes, the difference of opinion between individual states and the federal government, the involvement of insurance companies, and the need to make it a comprehensive Patient’s Bill of Rights that is accessible to read for the public at large. The primary focus of this paper is to examine the changes made to the Patient’s Bill of Rights in response to readability, patients’ ability to understand their rights, and how it became The Patient Care Partnership.

First of all, it’s imperative to understand what the Patient’s Bill of Rights was initially put into place for, as well as what legal elements it created for the patient. There are twelve specific aspects that were designed to give patients certain rights that would allow them to understand the medical process, as well as understand if their rights were being violated in some way. Though there are too many to list, some of the most important aspects of the law include the patient’s right to “privacy, review records, refuse recommended treatment, and reasonable continuity of care” (Passche-Orlow, Jacob, Hochauser, & Parker, 2009, p. 490). These rights are extremely important because they allow patients to understand that they have the right to care, to refuse care, to find out what their records say, and, notably, to privacy.

The original bill was designed to explain the significant factors that Patients need to understand in order to be aware of all of their rights. One of the most interesting rights in the PBOR is the right to refuse medical treatment. There are several instances where people have chosen to forego medical treatment for personal reasons or simply because they did not want to experience a miserable end, but would rather die quietly without treatment in order to maintain at least some quality of their life. One such case was written about by Ruth Davis Konigsberg, in which a cancer patient accepted treatment for depression, but not for cancer stating, “…she still declined. ‘I’m alone. I’ve lived a good life, but I miss my husband, she said’” (2011). Sean Ransom was her doctor at the time and very surprised by this answer, but he had to accept it because it was the law for his patient to refuse treatment. It is also important to know that the patient was a widow in her 80’s. The refusal of treatment, in this case, was not made out of stupidity or naiveté, but rather an informed decision by an elderly woman who simply didn't feel the need to go on living, however she did want to go on living happily until the cancer took her life away. This is just one example of how the Patient’s Bill of Rights has allowed people to choose their way in life.

There are other aspects of the PBOR that are extraordinarily important, such as the right to privacy. In an age where recent news has suggested that the average American may not have the private life they thought they had last year, the right to privacy involving medical care is particularly important. People should have the right to be treated equally regardless of the fact that may have a serious illness. There have been several instances of people that have not been able to live a comfortable life due to being HIV positive or having AIDS. People with medical conditions like this have the right to be able to not answer questions or even tell other people about their illness, which may be for personal reasons or even because they might be harassed by others for their condition. The right to privacy for medical conditions has become a large political controversy.

The Patient’s Bill of Rights contained the right to privacy for a number of reasons, as the aforementioned illustrates, but it also been used for political maneuvering both on the left and on the right. The main issue that comes up in regards to the right to privacy is who does have the right to privacy? In regards to teenage pregnancy and sexual activity, there has been so much political controversy over the past two decades that it is hard to know what side is right or wrong or even if there is a side that actually understands the issue and has answers to these questions. The controversy has been driven by Republicans who wish to know what their teenagers are doing and if they are sexually active, while on the other hand Democrats have tried to maintain privacy for all reasonable ages of teenagers. Of course, both sides still don't have a definition of a what a “reasonable age” is to determine what parents need to know about their children’s medical conditions. This illustrates one of the main reasons that the Patient’s Bill of Rights has been changed over the years. It has been changed to affect the definitions of certain terminology in regards to readability.

Readability and the Patient’s Bill of Rights

The problem with the original version of the Patient’s Bill of Rights is that the readability of the bill was far too complex for many people to understand. The wording and phrasing was designed for a much more educated audience than the average American, which was the beginning of the change of the Patient’s Bill of Rights. This change can be seen as politically motivated, as shown above, financially motivated by insurance companies, or could be interpreted as a right for patients to understand their treatment and treatment options in regards to medical care - especially under the Affordable Care Act.

Insurance companies have always had a vested interest in the medical industry because, quite simply, that is where they make their money. There is a difficult relation to insurance companies and the federal government in regards to medical practices because insurance companies are trying to generate as much profit as possible and the federal government is attempting to keep the lives of its people safe and medically acceptable. The federal government tends to come out of this appearing the more ethical of the two because its attempts to overcome illness and disease are an accepted convention of a government. Insurance companies struggle to model themselves as though they are an ethical part of the process, but the financial reality of their situation dictates that they must, inherently, be a part of the business of trying to get people healthy, but not overwhelmingly healthy. According to Sharon Reece the insurance companies are making treatment compromises as Reece states, “Obviously, weighing cost against human life and quality of life could lead to medical care compromises” (2001, p. 7). Reece’s opinion is that insurance companies, as well as other changes to the Patient’s Bill of Rights have affected medical judgment because they are more interested in solving financial problems than medical ones. This is a huge problem for the Patient’s Bill of Rights, as is the problem of people understanding what it actually says and what their rights really are.

The readability of the Patient’s Bill of Rights has been a major issue because it was first started as a law that was 240 pages long and well above the reading level of the average American citizen. The Patient’s Bill of Rights was originally written at different reading levels varying by state with the average rate of “15.3,” New York at the lowest reading level of “11.6,” and Minnesota at the highest reading level “17.0” (Passche-Orlow, Jacob, Hochauser, & Parker, 2009, p. 491). This discrepancy between state readability is a large problem because people move from state to state on a regular basis. Someone from New York would, very likely, not be able to understand Minnesota’s PBOR because it is at a graduate reading level. Therefore in Minnesota, the highly educated person was the only person that could actually understand the Patient’s Bill of Rights.

This problem has changed over time, but there are other things that have changed with it as well. The Patient’s Bill of Rights has become much easier to read, but has also become much shorter and simpler. This simplification of the bill has, perhaps, placed less protection for patients than the bill initially intended. The AHA website has an easy to download, easy to access PDF brochure of the Patient Care Partnership, which is the current name of the PBOR. Though this brochure has easily accessible information, it may have taken away from some of the initial aspects of the PBOR. For instance, the brochure states, “You will receive privacy a Notification of Privacy Practices that describes the ways we use, disclose and safeguard patient information…” (AHA, p. 4). This is a very different claim than the aforementioned rights initially enumerated in the Patient’s Bill of Rights, which stated that the patient has the right to privacy (Passche-Orlow, Jacob, Hochauser, & Parker, 2009, p. 490). Though this is a little confusing to understand at first glance, it can be examined further to understand a difference in rights.

The Patient Care Partnership brochure does not clearly explain what ways medical institutions will use or disclose any information or what safeguards it has. The right to privacy in the Patient’s Bill of Rights was clear and comprehensive, whereas the Patient Care Partnership has defined that information can be used, disclosed, and may be safeguarded, but to know exactly how, a patient must receive, read and sign a letter stating that the patient received the Notification of Privacy Practices. This is a clear problem because the language of the Notification of Privacy Practices is not entirely clear and is still at a higher reading level than what the average American citizen can actually read at. It is evident in this example that patients’ rights are not the only reason the writing and readability of the PBOR has changed. It has also allowed medical institutions, insurance companies, and other related institutions to gain more power than what was initially intended in the PBOR.

The Patient Care Partnership

The Patient Care Partnership does not fully include the initial twelve rights that were initially a part of the Patient’s Bill of Rights, but rather has simplified them down to seven. Other than the example listed above, changes to the language include “Help with your bill and filing insurance claims, involvement in your care, and a clean and safe environment” (AHA p.2-4). These are all clearly good things, but the language explaining each is so simplistic that is hard to know what any individual patient is actually agreeing to. One of the major problems with simplification is that there is a lot of law lost. When the PBOR was shortened to the Patient Care Partnership, 240 pages were shortened down to a five-page brochure. Although the written law of the Patient Care Partnership is much longer, the patient generally only ever receives the brochure along with other legal documents that the patient may or may not understand. From this it is clear to see that the law, itself, has actually changed over time, in some ways for the better in regards to readability, but in other ways for the worse in regards to actually having the same rights.

In conclusion, by examining the Patient’s Bill of Rights and understanding the initial rights created, anyone is able to see that the law was intentionally passed for good reasons. However, those reasons have changed over time. By investigating how the Patient’s Bill of Rights became the Patient Care Partnership, it also possible to see that rights may have changed and that the original intent of the PBOR may have changed as well. Patients may no longer struggle to read their rights, or at least not as much, but they may also not understand them as clearly as they could have before because the definitions are different. This is the way most laws change over time, but it is something to be aware of and understand because it can be very imperative to understanding the way the government works and the rights that people have.

References

Bedolla, M. (1990). The Patient’s Bill of Rights of the American Hospital Association: a reflection. The Linacre Quarterly, 57(3), 33-7.

This article reflects on the Patient’s Bill of Rights and the development of the rights and responsibilities provided to patients under the document in 1990. The article can be used as background information for the current version of the Patients’ Bill of Rights and to track the evolution of the document.

Konigsberg, R.D. (June 3, 2011). The Refuseniks: Why Some Cancer Patients Reject Their Doctor’s Advice. Time Magazine, 72-77.

In this article for Time Magazine, Ruth Davis Konigsberg details the experiences of cancer patients who have been directly affected by the ramifications of the Patients’ Bill of Rights. She begins by detailing first-hand accounts of the consequences patients have faced after succumbing to the insistence of their physicians without the proper knowledge of their rights. She then brings these experiences into focus by exploring the progress of the America’s Patient’s Bill of Rights and the way that it influences the decisions of unknowing hospital patients.

This article would serve as a great asset in which to explore my research question as well as to provide some background on the nature of the Patient’s Bill of Rights in the U.S. today.

Paasche-Orlow, M. K., Jacob, D. M., Hochhauser, M. H., & Parker, R. M. (2009). National Survey of Patients’ Bill of Rights Statutes. Journal of General Internal Medicine, 24(4), 489-94. Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659155/pdf/11606_2009_Article_914.pdf

In this article, a study was conducted in order to confirm how the current version of the Patient's Bill of Rights, or Patient Care Partnership, truly functions in the United States. By conducting in depth surveys and research, this article outlines how the results of this study reveal the way in which the Patient's Bill of Rights truly functions. Among many other things, the researchers conclude that the revised Patient's Bill of Rights still exceeds the competency level of most American patients and that many hospitals across the country fail to properly implement these rights to their patients.

This article will be very valuable to this project because it provides hard evidence supporting both sides of the Patient's Bill of Rights debate as well as by providing an in depth history of the bill.

Patients More Satisfied When Informed of Their Rights. (1999). AORN Journal, 70(1), 107. Retrieved from: http://go.galegroup.com/ps/retrieve.do

Although a short article, it reports on a study that found that patients want to know their rights and what to expect from their care. The study correlates the level of patient satisfaction with amount of patient information provided to the patient. It can be tied to the Paasche-Orlow et al. article regarding a patient’s ability to understand the information being presented to them.

Reece, S. (2001). The Circuitous Journey to the Patient's Bill of Rights: Winners and Losers. Albany Law Review, 65(1), 17-79.

This article was originally published in the Albany Law Review and outlines the positive and negative effects of the Patient's Bill of Rights throughout its history. The focus of this article is on the financial ramifications surrounding the bill and the effect that the American health care system has had on its status.

This article would provide a great counterpoint to my other sources because it probes the monetary aspects of the Patient's Bill of Rights debate. Besides giving more insight on the history of the bill, it would provide another perspective on the battle to get the bill passed that involves the financial stakes of different parties involved (ie: politicians, medical care companies, etc.).

The Patient Care Partnership. (2003). Patient Care Partnership. Retrieved from: http://www.aha.org/advocacy-issues/communicatingpts/pt-care-partnership.shtml

This brochure is the replacement to the American Hospital Association’s Patient’s Bill of Rights. This brochure is touted as a “plain language” replacement to its predecessor document. It explains to patients what they may expect during their hospital stay regarding their care, environment, privacy, discharge and billing.