As a healthcare consumer (i.e., buyer of healthcare goods and services), what rights or protections do you really have? Do you have the right to know accurate information about your past and present medical status? Do you have the right to hear about all testing and treatment options, be informed about risks and rewards of each, and be presented with all reasonable alternatives (including risks and possible benefits)? Do you have the right to choose your plan of treatment without pressure from the doctor to pick one particular option? Do you have the right to ask questions and to negotiate aspects of treatment? Do you have the right to see a list of all affiliated healthcare businesses (like the local ambulatory care facility or nursing home) your doctor has a financial interest in? These healthcare consumer protections are just a few of the many that American consumers are not guaranteed by law.
What are necessary ingredients for healthcare consumer protections?
In this blog post, I will be talking about the healthcare consumer protections (or rights) that we currently enjoy. You will find that our federal government does not use the name “healthcare consumer” when describing protections and rights. It prefers the more restricted name “patient” even when the healthcare business involved is a health insurance company. In my recent blog post, I described three reasons why I prefer using the name “healthcare consumer” to the name “patient” when describing someone who buys goods or services from healthcare businesses. In the U.S. healthcare system, the healthcare consumer buys from several private healthcare businesses (the sellers). The two most obvious sellers are health insurance companies and healthcare providers (the doctors, hospitals, etc.). When buying health insurance, I am not the insurance company’s “patient”, a name belonging to healthcare providers. My discussion below will make clear what healthcare consumer protections we have and which “seller” is associated them.
Healthcare consumer protections (or more commonly “patient rights”) are much discussed and bandied about for political correctness, but are not worth a hill of beans if the following four criteria do not apply to them:
- Healthcare consumer protections must be clearly defined by law
- Healthcare consumer protections must provide a mechanism for consumers to easily bring complaints against non-compliant businesses to the appropriate agency
- Healthcare consumer protections must be enforced with appropriate funding for agencies (e.g., Federal Trade Commission, offices of attorneys general) tasked to investigate allegations of non-compliance
- Non-compliance of mandated healthcare consumer protections must spell out appropriate punishment (e.g., monetary penalties, loss of license, jail time) for those businesses that fail to comply and avenues of redress open to the consumer (e.g., ability to file individual and class action lawsuits for monetary redress).
Over the years, our federal government has recognized the need to protect consumers from unfair and fraudulent practices by businesses seeking to maximize profit and take advantage of a consumer’s lack of information or bargaining power. Consumer protection laws hold sellers of goods and services accountable. These protections limit anti-competition practices between sellers and ensure accurate information is disclosed to consumers in plain English formats they can understand, especially for goods and services where the consumer is easily bamboozled (with medical jargon, for example) . The more vulnerable the consumer (like the very sick), the greater the need for consumer protection laws becomes. Consumer rights laws exist at the federal and state level and are enforced by various government agencies (like the Federal Trade Commission), offices of attorneys general, and through lawsuits brought by victims looking for monetary compensation.
Sources for Healthcare Consumer Protections
AMA Code of Conduct—doctors self-policing their business practices?
In the United States healthcare system, healthcare consumer protections for buyers of services delivered by healthcare providers (doctors, hospitals, etc.) are largely handled by the American Medical Society (AMA), the lobbying group for medical doctors. Doctors are expected to voluntarily follow the AMA Code of Medical Ethics which defines patient/doctor interactions, treatments, technology use, professional relationships, and self-regulation. This self-policing falls short of the four criteria given above for effective healthcare consumer protections and relies on a private group of doctors to judge what constitutes needing healthcare consumer protections.
This code is vague about when “incompetence, corruption, dishonest, or unethical conduct” needs to be brought before appropriate governmental law enforcement agencies or state board of medical examiners for further investigation. For example, has a doctor ever been brought up on “corruption” charges when over-testing or over-treatment is a foundation for business profit maximization? As a result, only the most egregious and well-publicized situations (e.g., malpractice, sexual misconduct) are ever brought to bear.
The AMA’s Code of Medical Ethics is like the Ten Commandments—they are there written down and everyone expects people to follow them. Unfortunately, reality is very different from expectations so we need additional safeguards to protect people from those who cause harm. This code does not stop healthcare providers from running their businesses for profit maximization ahead of what is best for the healthcare consumer. The healthcare provider is free to over-treat and over-test; downplay risks and exaggerate rewards of high-priced services; and does not have to present lower cost alternative treatments objectively. This robs the healthcare consumer of the safest, highest quality, cost-efficient care.
State and Federal Laws
The major federal laws governing healthcare consumer protections include the following:
- Employee Retirement Income Security Act of 1974 (ERISA) requires employers offering employer-sponsored health plans to provide specific documentation to eligible consumers
- Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) gives healthcare consumers protections from the abrupt loss of health insurance coverage after employees separate from an employer who provides employer-sponsored health insurance.
- Emergency Medical Treatment and Active Labor Act (1986) prevents healthcare emergency medical facilities from refusing needed care to people regardless of citizenship, legal status, or ability to pay..
- Health Insurance Portability and Accountability Act (HIPAA) provides healthcare consumers protections covering medical record privacy and the right to Inspect, copy and amend a medical record. While patients can request that disclosure of protected information be restricted , doctors are not required to always agree.
- Health Information Technology for Economic and Clinical Health Act of 2009 (HITECH Act) “incentivizes” healthcare provider businesses to provide Electronic Health Records (EHR) that are meaningfully useful for patients to use. This requirement is not mandatory and patients have no real way to complain (and get remedies) if meaningful use of EHRs is lacking.
- Patient Protection and Affordable Care Act of 2011 (Obamacare) provides the healthcare consumer protections (called Patients’ Bill of Rights) summarized in the table below.
Obamacare’s “Patient Bill of Rights” should more accurately be called “Health Insurance Beneficiaries Bill of Rights”. As you can see in the above table, Obamacare (PPACA) does not bestow any new healthcare consumer protections for “patients” of healthcare provider businesses (doctors and hospitals) within its list of mandated “Patient Bill of Rights”.
Obamacare (PPACA) does have provisions that are aimed at “incentivizing” healthcare provider businesses to deliver higher quality of care (called value-based health care), but these Obamacare (PPACA) provisions are largely “at the discretion of the Secretary of Health and Human Services (HHS)” and therefore easily eliminated when the political winds change. It should be noted that any repeal of Obamacare (PPACA) will eliminate the healthcare consumer protections given in the above table.
As given in the two tables summarizing federal healthcare consumer protection laws above, our rights as consumers are limited, especially for buyers of healthcare provider services. In addition, complaint mechanisms and enforcement of the laws are not always robust or consumer-friendly. For example, there is no mechanism for healthcare consumers to complain about Electronic Health Record (EHR) problems and enforcement of the law is essentially nonexistent as I personally found out.
Individual states also provide additional laws that protect their healthcare consumers with some looking out for their citizens more than others. Most of these state laws protect consumers against profit maximization practices like balanced billing.
Medicare beneficiaries are one group of Americans that enjoy greater healthcare consumer protections than most. The Centers for Medicare and Medicaid (CMS) identifies beneficiaries rights, maintains a mechanism for consumer complaints, and even provides an easy way to complain either using a downloadable quality of care complaint form or directly talking to a representative of a Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO) tasked to handle healthcare consumer complaints.
These healthcare consumer protections are not guaranteed by the laws given above, but have been implemented by CMS because it recognizes that healthcare consumers are their eyes and ears for what is actually going on in the healthcare provider businesses they pay for services.
Summary of Healthcare Consumer Protections
The only healthcare consumer protections that actually exist are those that are mandated by law, provide a mechanism for consumers to complain against non-compliant businesses, are enforced with appropriate funding for agencies tasked to investigate allegations of non-compliance, and come with appropriate punishment and patient remedies for non-compliance.
These enacted healthcare consumer protections have been aimed largely at health insurance practices that function to maximize profits at the expense of the consumer. These healthcare consumer protections make sure that insurance companies or employers who provide self-insured, employer-sponsored insurance (1) provide adequate documentation about their product(s) to the consumer, (2) keep medical records given them by healthcare providers reasonably private, (3) do not deny coverage to people who are or will potentially be high health spenders, (4) maintain a process whereby the consumer can appeal insurance company decisions, and (5) sell only health insurance plans with specific cost-sharing safeguards.
When healthcare providers (doctors, hospitals, etc.) are the sellers, healthcare consumer protections are skimpy and have been left to the inadequate self-policing found in the AMA’s Code of Medical Ethics. Our government erroneously assumes ALL healthcare provider businesses adhere to the AMS’s Code of Medical Ethics and that healthcare consumer protections beyond those listed are unnecessary. The reality is far from this assumption leaving healthcare consumers woefully unprotected.
Under federal law, healthcare providers must only (1) minimally treat patients who have made their way to emergency room facilities, (2) keep medical records reasonably private, and (3) make patients’ medical records available upon request—a rather skimpy list of healthcare consumer protections by any one’s measure. Our government is particularly reluctant to give the healthcare consumer adequate voice to complain about healthcare provider businesses that fail to comply with the laws, let alone investigate or punish them.
Mechanisms for consumer complaints to address quality of care problems (drug errors, unnecessary or inappropriate surgery, or treatment, getting discharged from the hospital too soon, incomplete discharge instructions and/or arrangements) go unadvertised or are totally lacking except for Medicare beneficiaries. Most healthcare consumers are completely unaware of their consumer rights, are too focused on getting well to navigate the arduous task of complaining, or are fearful to upset the scarce healthcare provider who is treating them. This is not a consumer-friendly environment by any stretch of the imagination.