Withholding Alzheimer’s Diagnosis Raises Concerns Over Malpractice, Collusion
More than 50 million people around the world have a terminal diagnosis of Alzheimer’s disease. Alzheimer’s and related neurological disease is rapidly becoming the leading cause of death around the globe. Thanks to a new report from the Alzheimer’s Association, those numbers grew exploded overnight.
The Alzheimer’s Association’s new report raises many scathing questions over ethics, treatment, malpractice, denial of care and mismanagement. The report found that just 45 percent of Medicare patients diagnosed with Alzheimer’s disease were informed of the diagnosis by their physician. By contrast, more than 90 percent of Medicare patients with cancer said they were informed by their doctor.
“What we found is really shocking,” says Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association. “This is reminiscent of what happened in the 1960s and 1970s with cancer. But that’s changed now, and it really needs to change for Alzheimer’s disease as well.”
For years, the association received complaints from family members who say that doctors are reluctant to reveal an Alzheimer’s diagnosis, Kallmyer says. So the association decided to investigate by studying medical records and survey results from Medicare recipients.
To make sure that Alzheimer’s patients hadn’t simply forgotten, the group also looked at Medicare survey responses from family members and other caregivers. The result wasn’t much better: Just 53 percent said a doctor told them of the patient’s diagnosis.
The report also found that patients with advanced Alzheimer’s disease were more likely to receive the diagnosis than people in the early stages of the disease. Doctors often blame the time constraints of short appointments. Or, it could be part of a culture of cost containment, risk management and denial in care.
“It’s difficult to disclose a diagnosis of a fatal brain disease in just a few minutes,” said Keith Fargo, director of scientific programs at the Alzheimer’s Association. “It’s also hard for doctors to tell patients they have a fatal disease that can’t be cured. And doctors often fear the emotional reaction an Alzheimer’s diagnosis can cause. By the time people are diagnosed with Alzheimer’s disease they are already losing cognitive functions. That’s distressing. Not knowing why is confusing and frightening.”
Alzheimer’s Disease Diagnosis Not A Precise Science
Let’s refresh our memories on some critical facts about Alzheimer’s disease diagnoses. It’s far from precise. In fact, it’s impossible to diagnose Alzheimer’s disease without an autopsy (which doesn’t happen). After the process of elimination, doctors can only guess at which neurological disease to diagnose.
This is where it gets complicated. Unfortunately, Alzheimer’s disease is a member of an aggressive family of neurodegenerative diseases known as Transmissible Spongiform Encephalopathy (TSE). Again, the operative word is “transmissible.” Related diseases are killing wildlife and livestock. Unfortunately, the TSE epidemic represents an environmental nightmare. The outbreak threatens every mammal on Earth.
TSEs include Alzheimer’s disease, Creutzfeldt-Jakob disease, Huntington’s disease, and Parkinson’s disease. TSEs also include mad cow disease and chronic wasting disease in deer. Few, if any, mammals are immune. There is no cure and there is no species barrier.
TSEs are caused by a deadly proteins called prions (PREE-on). Prion disease is unstoppable and the pathogen spreads through bodily fluids and cell tissue. Prions linger in the environment, homes, hospitals, nursing homes, dental offices, restaurants and many other places infinitely. They migrate, mutate, multiply and kill with unparalleled efficiency. Prions defy all attempts at sterilization and inactivation. Victims of the disease can spread the disease even further via bodily fluids and cell tissue. Victims often are contagious long before they appear sick.
What does all of this background have to do with an Alzheimer’s disease diagnosis? Doctors can’t tell the difference between any of the human forms of prion disease. They basically read the wind, flip a coin and diagnose the patient’s symptoms as Alzheimer’s disease, Creutzfeldt-Jakob disease (CJD) or Parkinson’s disease. It would better serve the public to stop the name game and use the most common term–prion disease. All patients should trigger the same protocol in care and safeguards to the public.
“The (human) brain diseases caused by prions includes Alzheimer’s, Parkinson’s, Huntington’s, amyotrophic lateral sclerosis (Lou Gehrig’s disease), and other disorders known as frontotemporal dementias,” said Nobel Laureate Stanley Prusiner, who earned a Nobel Prize in Physiology in 1997 for discovering deadly prions.
Safeguard Protocols For Prion Disease Not Uniform
Unfortunately, the protocol for patient care is vastly different for CJD and related prion diseases. That’s a mistake. CJD is handled with the respect that a prion disease demands. Alzheimer’s disease is not. Hospitals, doctors and even coroners handle CJD with a wide berth, if at all. Unfortunately, they fail to warn family members. Meanwhile, no one is talking about the transmissible aspect of Alzheimer’s disease. That’s another mistake.
With this background in mind, let’s get back to the issue of doctors withholding information about patients. What does this pattern of activity suggest:
- The size of the epidemic is much larger than estimates, which means that it will spread even faster. The latest estimates claim about 45 million people globally who are battling Alzheimer’s disease today. It’s been commonly estimated that two-thirds of cases are undiagnosed. This new report suggests that it could be much higher. Alzheimer’s was already the fifth-highest cause of death in the world. If more than half of the cases are going undiagnosed, neurological disease could already top the list.
- Ethical issues abound. Withholding information, even if only suspicions, can delay treatment and humane care. It also can put caregivers in harms way with a sense of false security (given the transmissibility of the disease and the precautions that should be given to caregivers).
- Malpractice issues abound. This knife cuts both ways. Doctors could be withholding opinions to avoid malpractice issues over misdiagnosis. Plus, the protocols for patient care and caregiver precautions are vastly different between Alzheimer’s disease and CJD. Since the diseases are handled differently, malpractice issues over misdiagnosis face doctors and hospitals.
- Many health experts have predicted that the global surge in dementia cases will bankrupt nations, states and insurance carriers that can’t dodge the bullet. What type of industry guidance is shaping this wave of denial in care? Are insurance companies urging doctors and hospitals to avoid the dicey waters of prion disease? Do insurance companies hope to avoid the murky waters and severe costs associated with patient care? Are governments trying to dilute the true size of the largest health threat on the planet today?
- Isn’t it time to offer safeguards and guidance to caregivers and family members to minimize the risk of exposure to deadly prions from patients fighting Alzheimer’s disease, CJD, Huntington’s, ALS and Parkinson’s diseases?
- Given the size and speed of this epidemic, isn’t it time to reconsider what we are doing with the infectious waste from millions of infected people around the world? Is it really a good idea to reuse their wastewater and sewage sludge (biosolids)? Is it a good idea to dump their sewage on our crops, golf courses, playgrounds and lawns or in our rivers and oceans? Hospitals dispose of anything that might have possibly been infected by prions. Sterilization is impossible. Therefore, prions in sewage cannot be stopped with wishful thinking. Prions migrate, mutate and multiply. Prions are an environmental nightmare that make radiation look like candy.
As you can see, the new report from the Alzheimer’s Association sparks more questions than it answers. We seek allies in pursuit of truth and reforms. Please join us.
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