“Patient’s Rights” has become a buzz phrase for healthcare and patient advocacy groups since the Clinton era. Numerous organizations, including the Department of Health and Human Services have published patient rights manifestos and incorporated these concepts into their mission statements. This phenomenon reflects American societal values as a whole.
“One person’s rights end where another’s begin” is a frequently paraphrased concept in American courts, but it’s also one of the hallmarks of American society; our sense of individualism, balanced by our sense of justice.
Rights vs. Responsibilities?
As healthcare continues into a new era of EMR (electronic medical records), Obamacare and Pay-for-Performance measures, new emphasis has been placed on Patient Rights. But what about the second part of this statement, “Patient Responsibilities”. What are patient responsibilities, and what role do they play in our evolving healthcare landscape? With hospital and physician reimbursement now being tied to patient satisfaction and healthcare outcomes, patient responsibilities are becoming a crucial but often overlooked part of the patient-provider partnership.
Patient rights are responsibilities
While many hospitals downplay patient responsibilities, patient responsibilities are directly related to patient rights. While these rights are sometimes outlined in overly wordy, or verbose forms, the principle patient rights (and corresponding responsibilities) are:
1. The right to be treated with respect regardless of background, beliefs or creed. It is illegal for doctors, nurses and hospitals to treat patients differently because of their religion, race, sexuality, age or gender. This means that whether patients are Muslim, Baptist, Black, or White, all patients will receive equal care at Catholic hospitals, for example.
Conversely, this means that patients have the responsibility to treat all health care providers regardless of rank with courtesy and respect. Nursing assistants, radiology technicians, nurses and other healthcare providers are not indentured servants, and should not be treated as such.
2. The right to safety and protection from harm. All patients are accorded measures to protect their safety from violence while in the hospital. This ‘safe harbour’ includes safety from partner battery, child abuse or other forms of domestic abuse. Hospitals are obligated to offer access to social workers and other protective services.
Just as patients have the right to expect to be protected from harm or abuse while hospitalized, healthcare providers should be able to perform their daily duties without being assaulted, kicked, bitten, slapped or threatened. Unfortunately, this is not the case. In fact, according to OSHA, nurses have one of the highest rate of workplace injuries in the United States. While many of these injuries are caused by lifting and moving patients, a significant portion of these injuries are related to violence directed at healthcare staff. Common perceptions are that this violence is perpetuated primarily by intoxicated or demented/ confused individuals. The creates an impression of an ‘accidental’ injury by a person with diminished capacity to understand the consequences of their actions.
The reality is much grimmer; with several studies including Pompeii et al. (2015) showing that many of the perpetrators of violence against healthcare providers are deliberate and malicious in nature. A 2014 article in the Scientific American graphically illustrates the problems that many health care providers face from patient assaults. While several states have enacted laws in recent years that criminalize assaults on healthcare staff, reporting and enforcement remain woefully low.
However, it is the last right and corresponding responsibility that has the potential to have the greatest impact on American healthcare; ideologically, financially and individually.
3. The right to make autonomous decisions regarding medical treatment, including the right to refuse treatment.
Implicit within the right to refuse treatment is the responsibility to accept the consequences of these decisions. Whether from an active refusal of medical treatment to the more insidious non-adherence, people should be held responsible and accountable for the consequences of these decisions. It is this concept of individual accountability that has the greatest impact of the healthcare system. From the newest vaccination legislation in California, to the runaway costs of treating preventable complications and even life-saving organ transplantation, nonadherence threatens to affect all Americans.
Examples of how the autonomous decision making process can conflict with social, fiscal and individual responsibility abound, in every day healthcare.
The cost of nonadherence
Ms. N, a well-educated and active 63 year old recently presented to a local emergency department with complaints of chest pain. In the ER, Ms. N was diagnosed with unstable angina. She also admitted that she did not take any of her previously prescribed medications for high blood pressure or her diabetes. She underwent cardiac testing, which revealed multiple blockages in her coronary arteries. She was advised to undergo coronary bypass surgery, as the safest and most effective treatment for her condition. She refused, and insisted on have several stents placed as an alternative. Prior to undergoing multiple stent placements, Ms. N. was strongly cautioned on multiple occasions that she would have to remain on a strong anti-platelet drug, plavix to prevent additional cardiac problems including heart attack and sudden cardiac death. She was also advised that stents were an inferior option for her condition, particularly given her history of untreated diabetes. However, Ms. N remained adamant, and doctors deferred to her wishes.
The financial costs of her autonomy: (Nine stents X $25,000 per stent = $225,000) versus open heart surgery ($100,000)
Within two weeks, Ms. N decided to stop taking all of her medications including her plavix. Nine days later, her neighbor called an ambulance when Ms. N collapsed outside. In the ambulance, Ms. N suffered a cardiac arrest. She was then rushed into the operating room for emergent cardiac surgery. Due to the emergent nature of her procedure as well as the damage to her heart from her latest heart attack, Ms. N was critically ill and remained in the intensive care unit for over two weeks. As a result of her heart attack, Ms. N developed advanced heart failure. Doctors have just informed Ms. N’s family that she will need either an LVAD or a heart transplant for long term survival. Ms. N’s family is devastated.
Costs of Ms. N’s noncompliance:
$300,000 hospital bill
Development of chronic illness
Decreased life expectancy (median life expectancy with advanced heart failure, 2-3 years)
(Click here to read Miller, Guglin & Rogers 2013 article on the financial costs of left ventricular devices and heart failure).
This is just one example of how the right to autonomy in health care carries a heavy social responsibility. Additional examples abound, especially in areas of scarce resources such as transplantation, where the lack of medication adherence often means the loss of a transplanted organ. In one study, half of pediatric heart transplant patients died because they didn’t take their anti-rejection medications. In another, more recent study by Olivia et al. in 2013, of over 2,000 transplant patients, 25% of patients died within one year of cardiac transplant due to medication nonadherence. This rose to 33% at two years.
These surprisingly high rates of medication nonadherence in this area also pose an ethical dilemma for transplantation committees who often have to chose from among hundreds of potential recipients for a single donor.
This also translates into enormous healthcare costs for preventable complications. With escalating rates of obesity, hypertension, cardiovascular disease and cancer, as well as the greying of the baby boomer generation, taxpayers and insurers alike should be asking, “Who should foot the bill for complications of these personal decisions?” Should patients be eligible for high cost procedures that result due to a lack of medication adherence?
* Examples are cited from real-life cases.