It's an unfortunately common story; a concerned patient approaches a doctor with a litany of unusual and unpleasant symptoms, and is told they are simply old, overweight, pregnant, mentally ill, or some combination of the four. Even as the patient eats healthier, exercises, reduces stress, and confirms they are not pregnant, the symptoms persist or worsen. If the patient is especially concerned or persistent, they may switch doctors, only to face the same dismissals. They may begin to suspect the presence of a particular illness and request testing or treatments, but are repeatedly dismissed by various medical professionals. Eventually, their affliction worsens to a point where it can no longer be ignored, and after a visit to a particularly observant doctor or, more commonly, an emergency room, doctors confirm what the patient knew all along; the patient is seriously ill, and years of neglect have worsened their condition significantly.
If idle speculation and anecdotes are not sufficient to demonstrate the severity of medical dismissal, consider the following conditions. Autoimmune disorders have an average diagnostic period of approximately five years, with patients seeing an average of four physicians prior to diagnosis. Endometriosis, a painful affliction of the uterus, has an average diagnostic period of nine years, with over one-third of patients referred to multiple doctors in that period. Even cancer, a well-known and well-acknowledged affliction, goes undiagnosed, particularly in women and racial minorities, often with deadly results. Medical dismissal leads years of unnecessary suffering, greater medical costs, and worse health outcomes.
Medical dismissal may be especially familiar to women and those belonging to racial minority demographics; prejudice unconsciously predispositions doctors to believe that women are assumed to be hysterical and minorities less educated or more likely to malinger for drugs. (It should go without saying that such assumptions are harmful and very often untrue; hypochondria and malingering are not unique to any demographic.)
To prevent medical dismissal and respect the patient's autonomy, informed consent ought to be the sole criterion for receiving medical treatment[1]. Provided that a patient is mentally competent[2] and fully informed of the consequences and potential risks of a test or treatment, healthcare providers ought to provide the treatment to the patient's specifications.
Ensuring that a patient is fully informed and has consented to a procedure without coercion presents various challenges. First and foremost is the level of knowledge requisite to fully understand a medical procedure; in addition to the high school and college education many readers of LessWrong have received, doctors must spend four further years in medical school and at least four additional years in a fellowship, studying their specific discipline. Depending upon the patient's level of education and the complexity of the procedure, fully explaining a desired test or procedure to a patient in a manner that they can understand ranges from inconvenient to near-impossible. This is not a fatal blow against informed consent; after all, the average voter's knowledge of complex economic and political theory (or lack thereof) does not preclude their participation in democracy. Therefore, the goal of informed consent is not to give the patient a complete understanding of the intricate details of potential medical treatments, but to give the patient a full functional understanding of the procedure's effects and potential risks. Even if the patient has no medical knowledge, it is not difficult to articulate, say, that a medication alleviates insomnia but is likely to cause nausea, or that a particular surgical procedure has a significant risk of death.
A second pertinent issue is coercion; maligned and corrupt individuals may have financial, political, or ideological motivations to take advantage of impoverished, mentally ill, or poorly educated communities, intentionally neglecting to fully inform the patients under their care. While an informed consent framework provides such corruption an avenue to fester, our current system is not without flaws either(there's a different criminal for each linked word), and proper enforcement of the law through a combination of strict punishment for violators and strong incentives for proper behavior ought to limit criminal behavior.
The strongest objection to informed consent is the possibility of regret; detractors claim that doctors ought to place the possibility of patient regret above the patient's autonomy. Such regret demonstrates the importance of informed consent; by fully informing the patient and empowering them to make their own decisions, rather than relying entirely upon a physician's recommendations. More importantly, the patient seeking a procedure under informed consent is fully mentally competent has accepted the results and risks of a procedure; the physician's role is to provide appropriate medical care, not to protect patients from personal responsibility and the consequences of their actions. Physicians ought not to allow their moral philosophy, prejudices, religious beliefs, and personal views influence the care they provide to patients; this includes a personal view regarding the desirability or potential regret of the medical procedure sought.
Informed Consent Against Medical Advice
When a mentally competent patient seeks a procedure against medical advice, and obtains the procedure through informed consent, they accept the potential risks and negative consequences of such a procedure. As long as the physician does not commit malpractice or negligence during the course of the procedure, and fully informed the patient, the physician cannot be blamed and does not bear responsibility for any negative consequences of the procedure.
Optional Procedures
Optional procedures are defined here as medical or surgical procedures intended to induce some desirable result in a healthy person rather than ameliorate an illness. Common optional procedures include sterilization and cosmetic surgery. Optional procedures are generally difficult to obtain under an informed consent framework. Despite high patient satisfaction rates, women who seek sterilization often face resistance due to reasons unrelated to their health, such as social expectations to have children or the disapproval of a male spouse or relative. Before seeking plastic surgery, psychiatric review is often required; in Australia, it is explicitly required by law. A mentally competent individual seeking an optional procedure has no less autonomy than one seeking medically necessary treatment, even if their case is more dire; therefore, the arguments expressed above apply equally to optional procedures.
Drug Addiction
Individuals who are suffering from substance abuse may attempt to use informed consent in order to obtain narcotics or performance-enhancing drugs. To prevent such situations, controlled substances ought to require an appropriate diagnosis before prescription. Patients who believe they have such disorders may use informed consent and the advice of their physician to order the appropriate tests and diagnostic tools.
To respect the autonomy of patients, informed consent ought to be the only criterion for receiving a medical procedure, even if such a procedure is not medically advised or medically necessary.
Disclaimer: Nowhere in this post do I claim that physicians and medical professionals are prejudiced troglodytes who have no idea what they are talking about; doctors, nurses, and medical technicians are highly trained, hard-working, and knowledgeable professionals, and it is wise to follow their recommendations. I advocate for informed consent as an alternative when patients feel that physician-recommended care is insufficient. Outside of these edge cases, I highly recommend that you listen to your medical care team and give them your appreciation and respect.
Insurance and the costs of healthcare are a different issue that I will address at a later date; this post primarily concerns itself with physician-related obstacles to receiving medical care.
I will address the medical rights of adolescents and those who are not medically competent at a later date.