I recently read a landmark study conducted by the Johns Hopkins University School of Medicine that truly shook me. The data indicates that medical error is the third leading cause of death in the United States, claiming more than 250,000 lives every single year.
This means that system-wide failures, diagnostic mistakes, and communication breakdowns trail only heart disease and cancer in taking American lives. While modern medicine possesses an incredible power to heal, it remains deeply vulnerable to human and systemic lapses. For anyone navigating the healthcare system today, patient advocacy is more important than ever.
But for those of us living with Alzheimer’s disease, patient advocacy isn’t just important - it is absolutely critical.
Looking back, I deeply feel this reality. I desperately needed a patient advocate to help Linda and me make my own treatment decisions when Duke Neurology presented us with two competing options: Lecanemab and Donanemab.
Key Findings of the Johns Hopkins Study
Surpassing Respiratory Disease: The study’s estimate of roughly 251,000 deaths significantly outpaces the Centers for Disease Control and Prevention’s (CDC) officially ranked third leading cause of death, respiratory disease, which claims about 150,000 lives annually.
Systemic Failures over “Bad Doctors”: Led by Dr. Martin Makary, the researchers emphasized that the majority of errors are not caused by inherently bad clinicians. Instead, they stem from system-wide issues, including poorly coordinated care, fragmented insurance systems, communication breakdowns during patient handoffs, and a lack of safety nets.
Flawed Data Collection: The primary reason medical errors are excluded from official CDC statistics is the reliance on the International Classification of Diseases (ICD) billing codes on death certificates. Because these codes are designed for insurance billing rather than public health tracking, they do not contain a classification for human or systemic error. If a patient dies from a surgical mistake or a medication mix-up, the death certificate typically lists the underlying cardiovascular or illness condition instead.
For the Patient: Protecting Yourself
Designate a “Captain” of Your Care: If you are seeing multiple specialists or are admitted to a hospital, explicitly ask which doctor is coordinating your overall care.
Verify Your Identity Every Time: Whenever a clinician administers medication, draws blood, or performs a test, ensure they check your hospital wristband and ask for your name and date of birth. This has happily become standard practice at most major medical centers. For example, when I went to the Duke Specialty Infusion Center for my Lecanemab infusions, there were at least six distinct points during the process when my name and date of birth were rigorously confirmed.
Speak Up About Hand Hygiene: Hospital-acquired infections are a major driver of medical complications. It is entirely appropriate to politely ask any doctor, nurse, or technician, “Have you washed your hands or used sanitizer?” right before they touch you.
Confirm the Surgical Site: If you are having surgery, ensure that you, your doctor, and your surgeon are all in agreement about exactly what is being done. Ask the surgeon to physically mark the correct surgical site with a marker while you are awake. While this is common practice at most hospitals, you must remain vigilant and look out for yourself.
The Unique Vulnerability of Cognitive Decline
Alzheimer’s disease progressively strips away a person’s ability to recognize errors, report pain, or speak up for their own safety. In a fast-paced medical environment, an Alzheimer’s patient may not be able to independently verify their identity, track their medications, or explain their medical history.
Even at the early stage of Alzheimer’s or Mild Cognitive Impairment (MCI), a patient may struggle to fully comprehend complex medical information related to their treatment. This isn’t just due to the cognitive symptoms. The sheer gravity of receiving a diagnosis for an uncurable disease can cause an emotional overload, making anyone temporarily incapable of separating raw facts from overwhelming fear.
In my own situation, Linda and I felt an intense sense of urgency to begin treatment immediately to slow the progression of the disease.
Based on the Johns Hopkins study results and my personal experiences at Duke Neurology, I highly recommend taking these four steps before making any major treatment decision:
Assign a Trusted Advocate: Appoint a friend, caregiver, or qualified family member as your official patient advocate. This person should attend all treatment discussions without exception.
Hit the Pause Button: Do not make a rushed treatment decision out of panic. Waiting a week or two to process information is not going to make a difference in the long-term progression of your disease.
Conduct Independent Research: Your advocate should assist you in independently researching the proposed treatment. Do not make my mistake and entirely externalize your trust to the medical team. I have learned the hard way that the information provided by large institutions like Duke Neurology can be unintentionally biased by hospital metrics, clinical trial structures, and institutional goals.
Seek Lived Experiences: Seek specific treatment experience information from other patients and caregivers who are already walking the path. Online communities like Reddit are excellent sources for real, unvarnished personal experiences. If possible, contact a patient directly for advice. Because my Alzheimer’s experience is an open book, several people have reached out to discuss their treatment options with me, and those conversations are invaluable.
Managing Secondary Medications
After you begin a primary treatment, there will inevitably be situations requiring additional medications, often to manage side effects. Before agreeing to take any new pill, I recommend your advocate ask the care team these four questions:
What is the exact name of this medicine, and what is it for?
What is the exact dosage, frequency, and time it should be given?
Are there any side effects, and what should we do if they happen?
Does this interact dangerously with any current medications or food?
The Hospital “Invisible Note” Strategy
Alzheimer’s patients can easily become agitated, embarrassed, or defensive if a caregiver or patient advocate corrects them or discusses their cognitive decline in front of them. An easy way to avoid difficult situations in a medical environment is to discreetly hand a pre-written card to the receptionist or charge nurse upon arrival.
Example Text:
“My loved one has Alzheimer’s disease. They may answer your questions accurately regarding the past, but they confuse current facts, dates, and symptoms. Please direct complex clinical questions to me, but please continue to address them directly to preserve their dignity.”
Safely Navigating an Overnight Hospital Stay
If your loved one must be kept overnight in the hospital, the clinical environment can rapidly become dangerous. A hospital - with its constant beeping, bright lights, shifting staff, and sleep interruptions - is a breeding ground for anxiety and sudden delirium in Alzheimer’s patients.
To reduce patient anxiety and maximize physical safety, implement these strategies immediately:
Bring “Anchors” from Home: Keep the hospital room grounded in familiarity. Bring a blanket they use daily, a clock with large numbers, a few family photos, and preferred comfort items (even a plush toy can work wonders).
Establish a Strict “Do Not Leave Alone” Protocol: Hospitals are chronically understaffed. An Alzheimer’s patient who wakes up disoriented in the middle of the night is at an exceptionally high risk for severe falls, pulling out crucial IV lines, or wandering out of the unit. Organize a rotation of family members or hire a private care aide so a familiar face is present 24/7, especially during the hazardous evening hours.
Flag “Sundowning” Behaviors Early: Inform the nursing staff immediately if the patient experiences “sundowning” (increased confusion, anxiety, or pacing in the late afternoon or evening). Request that routine vitals or blood draws be scheduled during their best time of day (usually the morning) to avoid unnecessary escalation.
Review Psychotropic Medications Closely: In high-stress hospital environments, chemical restraints (sedatives or antipsychotics) are sometimes used to manage patient agitation. Review these orders aggressively with the attending physician. Ask: “Is this medication absolutely necessary, or can we try behavioral modifications, dimming the lights, or changing the environment first?”
Create a Bedside Care Card
Finally, create a single-page document to tape directly to the room’s message board or clinical chart. This outlines the patient’s baseline habits for rotating nurses who don’t know them:
Communication Quirks: What words or phrases do they use when they need to go to the bathroom? What topics or music calm them down when they are upset?
Physical Limitations: Can they safely swallow thin liquids? Do they require assistance to stand up from a chair, or are they a high fall risk?
Daily Routine: What is their normal sleep and wake schedule?
What about you? If you have additional tips, tricks, or personal stories about keeping a loved one safe in the medical system, please leave a comment below. Let’s look out for each other.
Sources:
https://www.washingtonpost.com/news/to-your-health/wp/2016/05/03/researchers-medical-errors-now-third-leading-cause-of-death-in-united-states/
https://hub.jhu.edu/2016/05/03/medical-errors-third-leading-cause-of-death/
https://www.fuchsberg.com/blog/leading-medical-errors-cause-of-death-in-us
A super helpful post Greg - thank you so much!
I’m early in my caregiving role and there’s so much to learn!
Handing medical staff a card describing my LO’s condition is a brilliant way to preserve dignity and make certain the correct information gets conveyed. Similarly, I wouldn’t have thought of how terrifying a hospital stay might be.
Again, very grateful for all your wisdom. I’m so sorry you’re walking this path….Peace.