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Withholding diagnosis of Alzheimer’s robs patients of the chance to prepare

It’s not hard to understand the reluctance of many health professionals to tell their patients of a diagnosis of Alzheimer’s disease. They worry about inflicting emotional distress, according to the annual report of the nonprofit Alzheimer’s Association, and for good reason. There is no cure for Alzheimer’s. There is only care as a patient loses his memory and ability to function. It’s a terrible diagnosis, for the patient as well as family members and friends.

But it’s hard not to suspect that doctors are also worried about their own emotional distress. It can’t be easy under any circumstances delivering a death sentence, but especially one where the lead up to it is fraught with what may be years of suffering and anguish.

In the end, though, it doesn’t matter whose emotions doctors may hope to protect. By withholding critical, life-altering information from their patients, they are performing a profound disservice and, in fact, violating their oath to do no harm.

The association found that while health professionals’ disclosure rate of diagnoses of cancers affecting the breast, colon, rectum, lung or prostate is 93 percent, the rate for disclosure of Alzheimer’s disease is only 45 percent. That practice robs patients of their ability to plan for their decline as surely as the disease robs them of their ability to remember.

What would anyone want to do if he knew he would soon be unable to function independently? Write a will? Make financial and care arrangements? Visit distant family and friends? A doctor who is afraid of informing his patient of the facts is stealing those critical opportunities.

And what about family members who watch and wonder as a loved one deteriorates? Is it just the forgetfulness of aging they see, or is it something worse? Surely it is better to know – and, again, to be able to plan – than to wander in a no-man’s-land of ignorance.

If it is easy to understand the source of doctors’ reluctance, it is also plain that their aversion needs to be overcome. That suggests the need for a better model of training for doctors, many of whom, by the nature of their work, will be repeatedly called upon to help their patients cope with mortality.

Like most medical procedures, there must be best practices within the medical field that can be identified, implemented or better instilled into students. Clearly, given the dismal proportion of doctors willing to give a diagnosis of Alzheimer’s – and then to follow up on it – the system has broken down somewhere along the line.

Given that a large percentage of Alzheimer’s patients will be older than 65, there may also be a role for Medicare administrators to ensure that a diagnosis of the disease is passed on to the patient and appropriate additional care is offered, including identifying helpful community resources.

There are no happy answers to this issue. A diagnosis of Alzheimer’s remains a dreaded moment. Medicine is making advances, but there is no cure or even an effective treatment yet. All we have is knowledge, and caring. For that, doctors are on the front line.