The Mystery of End-of-Life Rallies

Susan Linnee had not eaten for weeks by the time she entered a Minneapolis hospice on Oct. 5. A 75-year-old editor, she was dying of a brain tumor and as her body weakened, she grew confused and stuporous. But suddenly, 17 days later, she perked up and asked for what her brother, Paul, called “odd food”: dill pickles, liverwurst and seed bread. Relatives fetched the delicacies and she nibbled a few bites. More animated than in previous days, she engaged in lucid conversation. Soon thereafter, she slipped into a barely responsive state and died two weeks later.

In speaking with the medical team, her brother learned that the brief rebound his sister experienced was called an “end-of-life rally.” Palliative care experts say revivals are common, although no one knows exactly why.

“There’s great mystery around this,” said John Mastrojohn, the executive vice president of the National Hospice and Palliative Care Organization. “But everyone who works in the sector has a story.”

Anecdotally, doctors and nurses interviewed for this article said that a striking number of their dying patients had experienced a rally, also known as terminal lucidity. Bounce-backs generally last only a couple hours, but some go on for so long that the patients can take a break from a hospice for a few months.

Dr. Craig Blinderman, the director of adult palliative medicine at the Columbia University Medical Center, hears lots of accounts. Yet evidence-based data is elusive, if nonexistent, he said. 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.

The National Partnership for Healthcare and Hospice Innovation (NPHI) is a membership organization comprising nonprofit community-integrated hospice and palliative care providers. These members are dedicated to ensuring patients and their families have access to care that reflects their individual goals, values, and preferences. Representing providers from across the nation, NPHI and its members help design more innovative and effective models of care, advocate for comprehensive and community-integrated care customized to meet each person’s unique needs, and build collaboration between national thought leaders, decision-makers, and other healthcare stakeholders to improve hospice care. Learn more about NPHI at nphihealth.org 

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