Adelaide Nye has been a medical patient advocate for over 35 years, supporting adult and geriatric patients with spinal injuries, joint replacements, multiple cancers, strokes, and more - including at major medical centers like UC San Francisco and Stanford University. She trained in biology and was a pre-med student on her way to medical school. However, life had other plans… In 1979, her partner was diagnosed with ESRD (End Stage Renal Disease, aka kidney failure). Next came a six year odyssey through the healthcare system as it attempted to introduce new technologies to dialyze such patients. She saw first-hand the many medical challenges patients faced in adapting to dialysis. This forced her to quickly evolve into being a patient advocate.
Nye sees her role as patient advocate to support patients to reach an accurate diagnosis and receive the best treatment. It often begins with helping them to pull together their medical information into an effective medical summary. Then, she assists them in researching treatments (and possible diagnoses) while working to find them the best doctor. Her work supports doctors too. She ensures they more thoroughly understand the patient’s condition and other underlying needs and concerns. Nye enjoys effective and good relations with the doctors of her clients. Physicians quickly see that her work complements and supports their own.
Nye believes that the best physicians continuously strive to be up-to-date in their medical knowledge and to dial in a felt connection to the patient’s ‘lived experience’. We call this ‘bedside manner’. She believes it has clearly improved over the past 30-40 years.
But there are times when a patient might decide to trade off bedside manner in favor of sheer medical skill. An example would be cataract surgery (to replace a clouded lens in the eye). Nye would “search for the highest quality front-of-the-eye-surgeon in the area". For such quick surgeries with typically excellent results she might advise some patients to consider accepting less "bedside manner" in favor of “the best hands”.
However, for patients facing chronic illness, what matters more is that the patient also feel valued and cared about by their doctor. Chronic patients will typically see their physicians for many years and benefit from comfort with their doctor’s manner. “Can your doctor look at and engage you (instead of just staring at the computer) during an appointment? I have the greatest respect for those doctors who speak directly, face to face, with the patient."
She also recommends: “Once you are over age 50, it is vital that you actually enjoy your primary care physician (PCP). As we age, we are more likely to be informed eventually that something is wrong [with our body].” A doctor who knows you well usually does a better job of communicating unnerving diagnoses. Nye is also a Certified Senior Advisor (CSA).
Nye has concerns about how doctors are forced to work by the medical systems within which they practice. Many patients do not realize that the Electronic Health Record (EHR) software which doctors use to track patients is often terribly tiresome to interact with. “This, and today’s shorter appointments, do not help doctors to remain in a 'diagnostic frame of mind'”. It is a way of taking in lots of data and holding it in their mind before they make a diagnosis. That should not be disturbed by poor quality EHR software, yet this is often the case.”
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