Kristen Bishop MJ, MSN, RN, CPPS, CHC
The foundations of our healthcare system are built upon the inherent rights of the individual to have freedom of choice and freedom from government interference. The ability to make an informed healthcare decision without government interference requires both privacy and autonomy. Autonomy is the quality or state of being self-governing (Merriam-Webster).
Currently in Pennsylvania, there is proposed legislation which would require a parent who wishes to refuse a vaccine for their child to provide a signed statement from a physician stating the parent received education based on “scientifically accepted information” regarding vaccination. The argument that healthcare decision making by an individual needs to be based on “scientifically accepted information” is antithetical to the concept of autonomy. The idea that a state should implement legislation to force parents to receive education from a physician prior to making a decision regarding vaccination refusal for their child illustrates not only the disregard for the inherent rights of the individual, but also the woeful lack of knowledge in our legislative bodies regarding both healthcare law and standards of practice.
Is “scientifically accepted information” relevant?
Science is the process of seeking knowledge, or “evidence”, to explain the world, but it is not the knowledge found. It is an ongoing process which makes assumptions and tests hypotheses, and therefore it is never definitive. Any evidence found by testing a hypothesis should lead to new hypotheses. Any “scientifically accepted information” that is being promoted is limited by our current level of understanding, and also by the party controlling the information. The truth regarding all medical interventions, including vaccines, can only be seen in hindsight because the “evidence” is constantly evolving. One example of this conundrum is illustrated in the debate over cholesterol and health. For the past hundred years, there has been conflicting opinion regarding dietary cholesterol and it’s effect on health among both scientists and medical professionals. All you have to do is look to the waxing and waning consumption of chicken eggs to illustrate how science and medicine attempt to influence our diet based on the “evidence” of the time. Historically, eggs have been a popular food source, but within the past fifty years, science and medicine have vacillated on labeling eggs as both nutritious and as a source of cholesterol and a danger to our health. This type of debate and evolution of evidence exists in all aspects of healthcare, including vaccination.
The term “scientifically accepted information” also begs the question of whose science, whose acceptance, and whose information? Unless the patient maintains decision making autonomy for personal healthcare choices, any “scientifically accepted information” being used is subject to manipulation .
The idea of “science” as a system of knowledge is an attempt by man’s ego to control life. Science is a process, and as such it will always be susceptible to manipulation by the person using it.
What is informed consent?
Informed consent is the process that occurs during an established physician-patient relationship where the physician provides the patient with the risks, benefits, and alternatives of a specific intervention so the patient is able to make a voluntary decision to accept or refuse the intervention. The purpose of informed consent is for the benefit of the patient in assisting them to make a choice. Any protective benefit to the physician is entirely secondary and not the purpose of obtaining consent. Informed consent is related solely to the process of giving the patient information, and not on the outcome of the patient’s choice.
Informed consent is well established in our healthcare and legal system. The Nuremburg Code in the 1940’s established principles for our current standards of practice, and subsequent legal decisions have codified the principle. The case decision of Canterbury v. Spence determined that the physician’s overall obligation is to the patient and requires full, and voluntary disclosure of risk, regardless of whether the patient asks for information. The court also found that consent cannot be made if the patient is not given sufficient information, and the sufficiency test should be measured objectively and not subjectively by the perspective of the physician. This means that the physician is already obligated to provide informed consent which makes any patient signature unnecessary and serves only the physician.
The patient is the ultimate decider of what information is relevant to their decision making regardless of whether they are asked to sign a form. The physician is required to provide the risks, benefits, and alternatives of a treatment they propose, but the patient is permitted to seek additional opinions and make their own decisions regardless of the outcome. Additionally, patients are allowed to choose treatment and prevention modalities that are outside the scope of “Western” medicine, and physicians are allowed to prescribe treatments which have not been officially approved and are considered “off label”. Attempting to force the use of “scientifically accepted information” is an attempt to control what information patients and physicians are allowed access to.
Because informed consent is already a standard of practice in our healthcare system, asking a person to sign a document acknowledging they have been educated on scientifically accepted information does not add benefit for the patient and should be viewed as coercive.
True consent relies on disclosure, but it should not be forced by disclosure.
The Harm Perspective
Honoring patient autonomy and consent requires healthcare practitioners and patients to be comfortable with negative outcomes. In patient safety science, harm is always viewed from the perspective of the patient. We are currently facing a moral conundrum where the perspective of harm according to the patient and the perspective of harm according to the healthcare system are no longer in alignment. Our healthcare system continues to steadily move towards a zero risk environment which is unsustainable and erodes patient freedom. Adopting a zero risk environment allows a healthcare system to ignore patient autonomy when it does not align with their beliefs.
Nursing Inspirations 