May 19, 2023. By Lindsay Greenwood.
The inevitability of death is one of the only commonalities between people across the globe. No one escapes it and it cannot be permanently prevented. Despite this reality, Americans historically have a difficult time discussing death. The stigma surrounding this conversation brings upon an interesting question: If we all die, why is it so taboo?
One of the leading causes of death for older adults in the United States is dementia. Dementia is a progressive disease where your nerve cells lose connection in your brain, resulting in difficulties in memory, thinking skills, mobility, and changes in personality. It manifests and advances differently for people, but it is universally progressive and has no cure. Having worked in the acute hospital setting, I’ve treated several people at various stages with their dementia. While I observed the stereotypical traits of poor memory or behavioral issues, I also saw a variety of additional complex medical problems stemming from their diagnosis. One very common issue in my patients was dysphagia, or difficulty swallowing.
Dysphagia can lead to food or drink falling into your airways and or lungs (called aspiration) potentially leading to pneumonia, choking, repeated hospitalizations, and even death. According to a study by Dr. John Rosenbek and peers, approximately 84%-93% of people with dementia have dysphagia. Other symptoms experienced at late-stage dementia include limited speech, inability to walk or stand, incontinence, and an increase in agitation and confusion. All of these symptoms can indicate the end of life nearing months or weeks away. Per the Alzheimer’s Society, the leading cause of death for dementia patients is aspiration pneumonia. However, this may not impact whether or not someone’s diet would be restricted.
Prevention of aspiration is one of the highest priorities of speech pathologists in the hospital. I would do whatever is best to protect the health of those I’m treating. But in the case of dementia patients, treatment and prevention of aspiration is not necessarily what’s in their best interest. Some have believed that placing a G tube to give alternate means for nutrition as a preventative measure for dementia patients. According to research published by geriatric physician Dr. Li, placement of a G tube for dementia patients does not prolong their life expectancy. They are not proven to prevent malnutrition or even aspiration. This makes G tube placement a less optimal medical intervention. But there’s a larger point in this conversation of care that can be missed: prolonging life is not the primary goal.
I’ve seen several families in crisis in my time working in the hospital. So many people are rightfully concerned on what kind of intervention will keep their loved one alive. What can get lost in this narrative is does it serve to deprive a dying person their favorite meal or dehydrating them? While the concern of aspirating, choking, or developing pneumonia are real medical consequences, we should be considering the quality of life consequences associated with limiting someone from eating and drinking. It is not honoring or caring to strip a dying dementia patient of one of life’s simplest pleasures.
Death with advanced dementia is inevitable. As a health professional and daughter to aging parents, I have to keep this in mind for plans of care for those I treat and those I love. It is best to have conversations about end-of-life wishes while everyone is healthy and before we are in a health care crisis.
It’s difficult to think about putting your father or significant other at risk of aspiration. It can feel more comfortable to place a G tube and not think about it. Ultimately though, this does not protect their lungs and it certainly does not enhance their quality of life. Instead of running from death when it’s imminent, we should be embracing empathetic care and honor the life of those nearing their final rest.
2022-23 NC Schweitzer Fellow
NCCU Communication Sciences and Disorders, Class of 2023