Delynn suffered from a benign yet rare type of tumor since she was 15 years old. After persisting through 19 years of misdiagnoses, losing her job, and dropping out of graduate school, Delynn started advocating for herself. She got a second, third, and fourth medical opinion and eventually found an OB/GYN who referred her to a surgeon with deep experience in her condition. After receiving care from this specialist, Delynn now enjoys an improved quality of life.
Delynn’s story is likely similar to many other patients who struggle to find relief from their long-standing health issues. The healthcare journey can be confusing, and patients can become disillusioned when their questions go unanswered.
Delynn’s positive health outcomes stemmed from her resolve to exercise patient autonomy. If she hadn’t taken this approach, she might still be suffering today.
Exercising patient autonomy empowers patients to feel more in control and confident in their ability to make educated health decisions and choose the right doctors. Autonomy leads to positive health outcomes, as we will witness in the stories of three patients. We’ll also explore the concept of patient autonomy, why it can be beneficial, and how it can improve patient outcomes.
People exercise autonomy as they mature and develop into adults. They start making decisions independently without their parents’ influence, and their parents also stop making decisions for them.
According to MedicineNet, patient autonomy is defined as:
The right of patients to make decisions about their medical care without their health care provider trying to influence the decision. Patient autonomy does allow for health care providers to educate the patient but does not allow the health care provider to make the decision for the patient.
In the past, patients may have accepted doctors’ decisions without question, and their role was simply to decide whether or not to comply. The patient likely had little to no involvement in the health decisions that involved their treatment and care.
An excerpt from a Journal of American Medicine article states, “Historically, medicine and society subscribed to the ethical norm that the physician’s main duty was to promote the patient’s welfare, even at the expense of the latter’s autonomy. A central assumption of the paternalistic framework was that physicians, because of their medical expertise, knew best what was in the best interest of patients. Accordingly, physicians decided which interventions would promote patients’ welfare; patients, for their part, were expected to comply.”
In today’s world, the concept of patient autonomy suggests that health consumers have an important role to play in their healthcare journey. They might make weighty decisions, conduct research, and assess treatment options before moving forward with a protocol. Essentially, they place themselves in the driver’s seat and steer the direction of their healthcare journey based on the information they glean from medical experts and their own research.
While patients take the driver’s seat, however, this doesn’t mean they need to carry the full weight of figuring out the details of their condition, symptoms, and treatment. Also, the extent to which a patient exercises autonomy may be subjective. Some patients might not want to exert as much control over their decisions. Yet, they can still exercise autonomy by educating themselves and conducting two-way conversations with doctors concerned about their wellbeing.
According to Hospital News, “Patient wellbeing and autonomy go hand-in-hand. Autonomy should not necessarily be seen as ‘patient control of decision-making,’ but as a clinical reality which consists of education, conversation, and concern for patient wellbeing.”
What does patient autonomy actually look like? If you exercise patient autonomy, you might:
Brittany F. is an example of a patient who exercised patient autonomy, and enjoyed a more positive healthcare experience.
In 2014, Brittany experienced body changes and alarming symptoms that prompted her to see a gynecologist. After seeing four more gynecologists over the next five years, she was still not fully satisfied with the level of care she received. She was not getting answers that explained why she was suffering.
A trip to the ER in 2019 landed her in surgery to remove a cyst, which was later found to be an endometrioma. Still experiencing symptoms after her surgery, Brittany decided to exercise autonomy and ask for her surgical notes. She then found a specialist in her condition and requested a consultation, bringing the surgical notes along with her. This specialist conducted additional tests that finally revealed the cause of Brittany’s symptoms. She also received what she felt was a more likely diagnosis based on her symptoms.
Brittany says, “None of this would have happened if I didn’t ask for another consultation and just decided to live with my symptoms, so I know that my advocacy played a part in me getting where I am today. I am currently one week out from my second surgery, this one robotic-assisted, after which I was diagnosed with stage IV endometriosis.”
We’ve established that patient autonomy can empower health consumers to exert more control over their health outcomes. It can also foster collaboration between doctors and patients.
Many doctors value two-way collaboration because it can result in better health outcomes for patients. Instead of engaging in a one-sided conversation with doctors, patients can ask questions, speak openly about their concerns, and collaborate on treatment options. It’s a win-win for both parties.
According to a Harvard Medical School article, “We have moved into a much more enlightened era of care, and many physicians seek to involve patients, to help them understand treatment options, and to work collaboratively to achieve goals of wellness.”
We witnessed doctor-patient collaboration when we spoke with Ben T., a physician assistant who exercised patient autonomy to improve his health condition. As a health professional, Ben already had an understanding of treatment options for various conditions. He decided to research further and gather second opinions after suffering from a painful condition in his left knee that persisted for several years.
Ben received physical therapy and eventually had surgery to “release” some soft tissue on the outer part of his knee cap. According to Ben, “It didn’t make much of a difference,” so a few years later, he decided to do some fairly extensive research and visit a specialist.
Ben brought a list of ideas from his research to discuss with the specialist, ranging from additional physical therapy to lubricant injections and even surgical options.
Ben says, “We discussed all of these ideas, including the pros and cons of each…I ended up doing more physical therapy and also got lubricant injections in the knee (which would probably never have happened if I didn’t advocate for the idea). We decided together that additional surgery was probably not the best idea since it could easily do more harm than good.”
Ben felt empowered to advocate for himself, which resulted in improved communication with his doctor and the ability to make better health decisions.
Health consumers can exercise patient autonomy to research their conditions and find physicians who can provide second opinions or a potentially different point of view.
MediFind enables health consumers to search for doctors by providing three separate functions:
With each search, MediFind also provides information on 10,000+ conditions (current treatments, outlook, prognosis), including the latest clinical studies, research findings, and studies.
Tools like MediFind allow patients like Ben, Brittany, and Delynn to exercise patient autonomy and find better care faster. By taking a little more control over decision-making and fostering better communication with doctors who are experts in the patient’s condition, patients can access a high quality of care and enjoy a more rewarding healthcare experience.
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