"There are no great people in this world, only great challenges which ordinary people rise to meet."—William Frederick Halsey, Jr.
Making decisions for another person at the end of their life is indeed a significant challenge. The challenge is even more poignant when the person has lost their voice to the progression of dementia. As a geriatrician specializing in end-of-life care in dementia, most of the people I encounter in my work lament that they would gladly make these decisions for themselves. Yet, it is unbearable to make similar arrangements for their mother, father, or spouse when they don’t entirely know what their family member would choose.
After learning that they have a range of care options from which to choose, and being introduced to the natural course of dementia (understanding that dementia is, in fact, a terminal disease), many family members feel the burden of decision-making lifted, or, at least, diminished. Taking the time to pause, imagine, and discuss what their family member may have chosen for themselves may at first seem challenging, but ultimately provides the decision maker with a sense of comfort. Leaning into the tough conversations is a first step toward managing the tough decisions.
This book came about by virtue of my experience caring for my own mother at the end of her life. I had the medical knowledge and expertise to make the tough decisions, but needed a guide to help me with some of the emotional aspects of letting go of my treasured, loving, and loved mother. Further, I needed a medical guide to help my siblings understand some of the medical decisions that I was making that may limit her lifespan. And, finally, I needed to determine how to communicate these emotionally-charged decisions to family, friends, and health care providers who were each likely to have their own emotionally-charged reactions and opinions. Making Tough Decisions about End-of-Life Care in Dementia is the product of my experience catering to these mixed needs.
How do we reach a place where we can shift focus from cure to comfort?
- We must first understand more about the natural disease process. Dementia, the sixth leading cause of death in the U.S., and the only cause without a cure, is a progressive, neurodegenerative condition. ("Progressive" means it does not improve, but only worsens, and "degenerative" indicates the loss of function of the neural tissue). This loss of function serves as an indicator, which can be used to determine when someone has shifted from living with dementia to dying from dementia. When the body can no longer coordinate speech, walking, and swallowing, dementia has progressed to its final stages.
- We must take into account that healthcare providers are usually not adequately trained to recognize or give counsel regarding this shift and regarding end-of-life care options in dementia. The John A Hartford Foundation released information that only 29% of primary care physicians are trained in end-of-life discussions. The discussion will thus likely need to be initiated by family.
- We should consider a palliative approach to care. Such an approach improves quality of life at the end of life. Evidence reveals that withholding or withdrawing antibiotics and many other medications for chronic conditions (including dementia) can improve quality of life with little, if any, shortening of life.
Shifting your focus from cure to comfort allows for time to deal with the issue of death, to expand your understanding of what constitutes a full life, and to connect in new ways with both your family member and yourself.
My hope is that individuals assisting a family member in the last stage of the journey with dementia will have a place to go to for support, guidance, information, and insight. My book contains the stories of families with whom I’ve worked. Their stories made my own family’s journey with dementia easier. I hope, by putting them on paper, that they will likewise help you and your family.
Anne Kenny, MD, is professor emerita at the University of Connecticut Health Center. She currently practices as a consulting physician. Kenny is the author of Making Tough Decisions about End-of-Life Care in Dementia.