March 26, 2015

If Your Doctor Has Just Made an Alzheimer’s Diagnosis for You, There’s a Good Chance She Won’t Tell You

On March 24, 2015, the Alzheimer’s Association released its 2015 Alzheimer's Disease Facts and Figures report, which recaps some disturbing observations about the way doctors communicate – or don’t communicate -- with Alzheimer’s patients, their families, and caregivers.

Based on its review of Medicare patients, the association found that only 45% of patients diagnosed with Alzheimer's disease (AD) said that their doctors shared the diagnosis with them.

In case you’re wondering if perhaps the AD patients may have forgotten who said what, only 53% of those patients’ family members and caregivers said the doctor communicated any AD diagnosis.

Alzheimer’s as the New Cancer
Compare those low numbers with the percentage of cancer patients who said their doctors shared the cancer diagnosis with them – 90%.

Beth Kallmyer, vice president of constituent services for the Alzheimer's Association, put it this way: "What we found is really shocking. 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 as well."

Why are so many newly diagnosed AD patients not told by their doctors?

It’s a sad excuse, but Keith Fargo -- director of scientific programs at the Alzheimer's Association – said it’s often about time: "It's difficult to disclose a diagnosis of a fatal brain disease in just a few minutes.” 

I find those typical 15-minute appointments – during which the doctor’s attention is focused on his laptop screen, not me – inadequate even for the most routine matters. In cases involving AD disclosures, doctors should simply schedule more time.

Understandable but Unacceptable
Fargo offered a few other reasons why so many doctors apparently don’t share the AD diagnoses they’ve just made with patients and their families:
  • They find it hard to tell people they have a difficult fatal illness that cannot be effectively slowed or stopped by any means.
  • They fear that disclosing AD diagnoses might cause emotional scenes.

Both “excuses” are understandable, but should there be a place for them?

Not according to the Alzheimer Association’s Keith Fargo:
By the time you get to a point where you can be diagnosed with Alzheimer's disease you are already beginning to experience a loss of some of your cognitive functions. That's distressing. And to not know why is confusing, and can be frightening.

Dr. Pierre Tariot, a geriatric psychiatrist who directs the Banner Alzheimer's Institute in Phoenix, described the positive effect of clear AD diagnosis disclosures. He said that his patients and their families are grateful when he speaks candidly to people about their new AD diagnoses:
People are relieved, not distressed. They're relieved to have somebody who knows what's going on and gives a message of at least some hope ... a message that, “We will stand by and navigate this process with you."

Dr. William Klunk, chair of the Alzheimer’s Association's Medical and Scientific Advisory Council, highlighted the importance of the new report:
Based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis, including Alzheimer’s disease. The findings from this report shine a light on the need for more education for medical students and practicing health care providers on how to effectively make and deliver an Alzheimer’s diagnosis.

For Doctors, It Should Get Easier
It’s not hard to see how delivering this kind of difficult news might be challenging, especially for new doctors. Dr. Tariot, the geriatric psychiatrist, acknowledged that it was hard for him – at first – to share AD diagnoses with his patients and their families. 

While he couldn’t recall exact details from his own early AD diagnosis disclosures, he knew they were far from perfect. "I'm sure that I squirmed. I'm sure that I was uncomfortable and somewhat vague and evasive," he said.

With time and experience, Tariot became prepared for the questions he knew would come: “'Is there anything we can do? Am I going to get worse? When am I going to die? or When is she going to die?”

An Important Video Primer for Doctors
The Alzheimer’s Association posted the following video online which shows an experienced doctor delivering an AD diagnosis to a patient and her husband. It should be required viewing for every new doctor.

 The comments from viewers about the video are also very interesting.
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Many media outlets picked up the story from the Alzheimer’s Association. Here are a few:

1 comment:

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