Navigating an End-of-life Rally

Michael, an advanced Alzheimer’s patient, was in hospice care and didn’t have much time. He was experiencing what some believe to be precursors to death, such as loss of appetite, changes in breathing, and more confusion than usual, and his organs were shutting down. His family all flew in to spend his remaining time with him.

As his daughter and son sat on opposite sides of his bed, he pepped up one day and said hello to all of his loved ones, whose names he miraculously remembered. He started talking about current events and sports, his favorite things to discuss. He asked his daughter if she would get him his favorite steak and potatoes, with a brownie-bottom sundae for dessert. His family thought he made a miraculous recovery, since he was back to himself again, and his Alzheimer’s was “gone.” His daughter made a quick run for his carry out request. When she returned, he ate every last bite. The family left that night feeling hopeful. Sadly, within the next few days, Michael took a turn for the worst and died. How could this have happened?

Those of us who have a loved one in hospice may dream of having one final conversation or connection with him or her. For many, that wish becomes a reality, but it is often accompanied by false hope.

“Terminal lucidity” refers to the phenomenon of someone briefly perking up before death. The term was coined by biologist and researcher Michael Nahm and is now more commonly called an “end-of-life rally.” Although these rallies show up differently for different people, oftentimes they appear in a way that is similar to our example, where the patient temporarily improves and asks for a last request, such as a specific food or to see a certain loved one before the end, and then the end comes shortly after (in hours, days, weeks or months). To clarify how long it usually takes, of 49 case studies of terminal lucidity studied by Nahm, the vast majority (84%) occurred within a week of death; 43%, in fact, transpired the final day of life.

Nahm describes the end-of-life rally phenomenon in his 2009 article in The Journal of Near-Death Studies. The article, published less than ten years ago, was the first modern review article on the curious subject of cognitively impaired people becoming clearheaded as their death approaches. According to Nahm, cases of “terminal lucidity” had been recorded for millennia, from accounts by classical scholars such as Hippocrates, Cicero and Plutarch to 19th-century medical luminaries such as Benjamin Rush (who wrote the first American treatise on mental illness). It’s just that, apparently, no one had thought to label or conceptualize these incidents in any formal way before.

In Nahm’s research (with another scientist, Bruce Greyson of the University of Virginia), the end-of-life rally phenomenon can be divided into two subtypes, as follows:

1) In the first subtype, in some patients with chronic mental illness, their psychiatric symptoms become less pronounced, or disappear altogether, starting around a month before their deaths. For instance, one man who’d been completely catatonic for nearly two decades allegedly “became almost normal” before he passed away.

2) In the second subtype, full mental clarity can appear quite abruptly and unexpectedly just hours or days before death. For instance, a 92-year-old woman with advanced Alzheimer’s disease hadn’t recognized her family for years, but the day before her death, she had a pleasantly bright conversation with them, recalling everyone’s name. She was even aware of her own age and where she’d been living all this time. “Such incidents happen regularly,” write Nahm and Greyson.

For cases involving obvious brain damage (such as strokes, tumors, advanced Alzheimer’s disease) that should render the patient all but vegetative, not functioning normally, end-of-life rallies are a genuine medical mystery. Another scientist, Dr. Craig Blinderman, director of adult palliative medicine at the Columbia University Medical Center, said that little to no evidence-based data exists around end-of-life rallies.

According to Blinderman, “Aside from the challenges of catching dying people at the moment of springing back, it’d be tough to get the medical ethics board to determine that the research would benefit the patient. This type of study would require constant drawing of blood and monitoring of patients, which runs counter to the quiet fade away that is a signature element of palliative care.”
For the most part, these rallies remain a mystery. However, Blinderman has one theory. When organs fail, he says, they can release a “steroidlike compound.” This compound could potentially wake up the brain enough to carry out the miraculous-seeming comeback. Then there’s a spiritual or psychological component, which defies scientific explanation. Hospice professionals note a compelling desire to say goodbye or bond with loved ones in those last moments. There’s no way to test this hypothesis, but there’s no way to falsify it, either.

How to Handle an End-of-Life Rally

Live With Care, a project of Westchester End-of-Life Coalition in Bronxville, N.Y., published some advice for handling an end-of-life rally. These tips include

• Follow the lead of the person who is dying;
• Listen carefully and respond to his or her needs for conversation (being silent, talking about the past or future or asking for final goodbyes);
• Don’t be surprised or disappointed if, shortly after a lively time, all of the person’s energy seems gone;
• Regardless of how alert — or not — your loved one is, you can offer support by sitting by the bedside and holding a hand or stroking an arm.

Get Your Advance Directive and Other Documents in Place

Do you have a loved one with an Alzheimer’s diagnosis? As you are likely aware, no one can precisely predict the exact life changes that’ll occur during the course of a mental decline, and whether or not an end-of-life rally will occur when the time comes. In addition, no one can predict the type of health care or long-term care setting he or she will need or how quickly the disease will progress. That’s why planning in advance is so important. Once you have taken the step of speaking with your loved ones about your wishes, it is important to develop incapacity planning documents, including an Advance Medical Directive and a Lifestyle Care Plan, to make your wishes known. If you or a loved one has not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), now is a good time to plan and get prepared. Call us to make an appointment for a no-cost initial consultation:

Fairfax Alzheimer’s Planning Attorney: 703-691-1888
Fredericksburg Alzheimer’s Planning Attorney: 540-479-143
Rockville Alzheimer’s Planning Attorney: 301-519-8041
DC Alzheimer’s Planning Attorney: 202-587-2797

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