It almost goes without saying that if your loved one is admitted to a health care facility, somebody outside of the institution needs to immerse themselves in the treatment & care planning process, read the chart on an ongoing basis, know what’s being prescribed, speak with the care providers or treatment team frequently, and demand answers to reasonable questions about What is being planned, Why it’s being recommended, How it will affect the patient, Where the follow-up care will be, and Who needs to be available to implement a safe follow-up plan. If the family member who is known as the “first responder” is having trouble gaining access to this information, the patient or his/her agent under power of attorney can sign a HIPAA authorization. Somebody has got to keep an eye on what’s going on: there can be a lag time between the time a request is made and when the physician or nurse can act on it; the addition of a new medication can create new symptoms and imbalance for the patient; if the resident exhibits dramatic changes in demeanor such as lethargy, falling, stupor, or increased confusion, the family needs to be able to address it right away. And of course, often, a decision by the family is being demanded in a big rush.
Another reason somebody has got to keep watch over the patient is that there are times when inappropriate or unnecessary treatment is being provided. CNN did a disturbing expose recently about the off-label over-prescribing of a medication called Nuedexta to nursing home residents who have Alzheimers’ disease and other dementias, but also have symptoms of depression. The article says:
The pill, called Nuedexta, is approved to treat a disorder marked by sudden and uncontrollable laughing or crying — known as pseudobulbar affect, or PBA. This condition afflicts less than 1% of all Americans, based on a calculation using the drugmaker’s own figures, and it is most commonly associated with people who have multiple sclerosis (MS) or ALS, also known as Lou Gehrig’s disease. … Since 2012, more than half of all Nuedexta pills have gone to long-term care facilities. The number of pills rose to roughly 14 million in 2016, a jump of nearly 400% in just four years, according to data obtained from QuintilesIMS, which tracks pharmaceutical sales. … Nuedexta is approved by the Food and Drug Administration (FDA) to treat anyone with PBA, including those with a variety of neurological conditions such as dementia. But geriatric physicians, dementia researchers and other medical experts told CNN that PBA is extremely rare in dementia patients; several said it affects 5% or less.
The report goes on to discuss, among other things, severe adverse consequences experienced by many patients who are receiving the drugs inappropriately.
The main point is not that I’m expressing a position on the bona fides of any particular practitioner’s prescribing patterns. It is, rather, to emphasize the extreme importance for every patient and every nursing home resident to have an attentive advocate watching over what is happening.
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