by Sara Wolfson DNP APRN GNP-BC
Department of Geriatrics, Gerontology, and Palliative Care
Certificate in Clinical Ethics
Yesterday, I sat down with a 73 year-old woman and her family to break the news that she had been diagnosed with mild cognitive impairment. She then asked me, “Does that mean I will have dementia?” As I answered, her eyes welled with tears, and I told her we didn’t know for certain what her personal trajectory would be; that for 20-25% of persons over the age of 65, mild cognitive impairment is a precursor to developing dementia of the Alzheimer’s type. This was a diagnosis hurtful for both patient and family to hear, and it’s certainly never easy to give this kind of news. And, unfortunately, I cannot give her any inkling of a prognosis, save for the statistic I quoted her. I cannot give any time frame of a life expectancy, despite having been asked for one, because that’s an unknown.
Mild cognitive impairment (MCI) can be a devastating diagnosis due to the possibility of progression to dementia. It often results in grim consequences. But it’s one the patient needs to be told by the health practitioner. In our liberal political society, practitioners have a duty to disclose significant information, such as this, to the patient whether they perceive it as helpful or not. And, this is my preferred approach.
The difficulty, though, in dealing with a diagnosis of MCI, are all the unknowns. First, it’s unknown whether the patient will actually develop dementia. Second, if the patient does develop dementia, it’s unknown how the disease will progress. Among persons with dementia, no two of them experience the same journey. Lifestyle, health status, genes, and environment all determine the length of that journey. The patient and family trust in me to be truthful. That’s the nature of the practitioner-patient relationship. But, most importantly, the patient has the right to know the diagnosis no matter how uncertain it may be or how painful it may be to hear.
Yet, there is so much information to be given, and I must be aware of the amount of information the patient and family can absorb at one time. While I have an obligation to provide information, the American Medical Association recommends that I can delay the rest “to a later, more suitable time…and done according to a definite plan, so that disclosure is not permanently delayed”. That’s when I need to make sure that what the patient heard is what I actually said, that we have a shared understanding of dementia, its probable consequences, and the interventions that can help slow its progress.
Giving a dementia diagnosis has become commonplace for me. However, according to the Alzheimer’s Association, this is not standard practice among practitioners. According to one study, fewer than 50% of patients with dementia are actually given the diagnosis. This bumps up against the fact that 90% of individuals said if they were showing signs of cognitive decline or memory loss, they would want to know if the cause was Alzheimer’s. Why then is a dementia diagnosis not communicated to the patient?
The reasons for non-disclosure by practitioners vary, but they include 1) feeling they have nothing to offer the patient in the way of help, 2) fear of negative consequences such as harm, loss of self-esteem, or depression, 3) lack of certainty as to whether or not the patient wants to be told, 4) misdiagnosis due to lack of proper training in dementia evaluation, and 5) assumption that cognitive loss is part of normal aging. Additionally, a systematic review by Bamford et al revealed that disclosure of a dementia diagnosis was described by practitioners as one of the toughest aspects of providing dementia care. The study noted that giving such a diagnosis required more time and effort from practitioners than disclosing other diagnoses. Most unfortunately, disclosure of a dementia diagnosis was less likely than giving a diagnosis of cancer or psychiatric illness.
Truthfully, there have been a few rare instances in which I relied on therapeutic privilege to guide my decision-making. These were situations where family members told us in advance that they knew the patient would become depressed if he/she heard the word “dementia” or “Alzheimer’s”. In these situations, there was a high risk of precipitating depression and possibly social isolation. By withholding that piece of information, I must have confidence that the advantage of doing so outweighs the disadvantage. To me, in these complex circumstances, I am put in a position to balance respect for the patient by giving them the diagnosis, while avoiding unnecessary harms to a patient by imparting some degree of psychological distress. (Richard, et al., 2010). https://jme.bmj.com/content/36/6/353
Ironically though, while a practitioner’s intent in withholding information may be to keep a patient from being harmed, it can have the opposite effect. When, for example, I haven’t given my patient the dementia diagnosis, I could be robbing the patient of current interventions and strategies that could slow dementia progression: participation in clinical trials; short term and long term goal planning, current medications that can improve attention and concentration; and building a support system. And, since this patient has enough insight to recognize her memory loss, I may also be robbing her of the sense of relief she might feel in finally knowing the cause of her cognitive change.