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Should Doctors Withhold an Alzheimer's Diagnosis?

Doctors must do a better job of honestly and openly communicating and explaining an AD diagnosis with patients and caregivers. Withholding such a diagnosis should not be a doctor's decision. Every patient has the right to receive an honest diagnosis from every doctor.
10/12/2015 05:37pm ET | Updated October 12, 2016
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A survey reported in Time Magazine on March 24, 2015 found that, "As few as 36 percent of doctors said they usually told their patients if they had Alzheimer's." The two major reasons given by doctors for withholding an Alzheimer's disease (AD) diagnosis were "fear of causing emotional distress in their patients," and "lack of time and resources to fully explain the diagnosis."

In my opinion, withholding an AD diagnosis is inexcusable. Not only do I think that doctors should always discuss every diagnosis and make the necessary time to answer all patient questions honestly, but for terminal diseases such as AD doctors should also provide written handouts so patients and caregivers can become even better informed.

I can, however, understand how a doctor may think that a particular patient or caregiver may need time to absorb and process an AD diagnosis before providing more information. If so, then the doctor should issue the diagnosis and schedule a follow-up meeting in a week or two to explain more thoroughly what the patient and caregiver should expect as the disease progresses.

Doctors must understand that when the diagnosis is for a terminal disease such as AD, patients and their caregivers need time to do proper end-of-life planning. It is very important for anyone receiving an AD diagnosis to make sure important documents are in order... will, living will, health care proxy, and durable power of attorney. Patients diagnosed with AD may also need to meet with a financial planner to try to protect, preserve, and grow current assets and income, or to immediately begin taking steps to qualify for Medicaid assistance in the near future. This end- of-life planning may not happen in time if doctors withhold an AD diagnosis.

I can appreciate that doctors do not want to alarm patients with a diagnosis of a disease for which there is no effective treatment or cure. But once AD progresses to the point when patients can no longer make responsible decisions, it is too late for them to decide who is to have power of attorney to care for their assets, or whether or not they want extreme measures taken to prolong their lives.

Doctors should also discuss the value of support groups when an AD diagnosis is made. Support groups can provide emotional encouragement as well as opportunities to learn specific helpful techniques to deal with the progression of AD behaviors from others going through a similar experience. In my spouse caregiver support group, participants often said that they wished that their doctors had given them more information when their spouses were still in the early stages of AD so they could have prepared themselves better with financial matters or future caregiving needs.

I can also appreciate how doctors may feel that a patient's stress, anxiety, or depression can easily be heightened if given an AD diagnosis. But patients who see their memories failing or get lost in familiar places and begin experiencing new unexplained symptoms can also find their stress, anxiety, or depression heightened if they do not know why they are experiencing such behaviors.

When patients leaves a doctor's office, they may or may not take specific actions based upon their diagnosis. Given a truthful diagnosis, patients can make more informed choices about what, if any, actions are necessary. And, with terminal diseases such as AD, caregivers also may need time to prepare for life changes soon to come.

Doctors must do a better job of honestly and openly communicating and explaining an AD diagnosis with patients and caregivers. Withholding such a diagnosis should not be a doctor's decision. Every patient has the right to receive an honest diagnosis from every doctor.

If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net. All of my blogs on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read more than 40 of my previously published articles in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.

My next blog post will be in two weeks. Tentative title... "Five Steps for Caregivers when the Diagnosis is Alzheimer's."