What Caregivers Should Know About End-of-Life Rallies

Rallies can be fleeting — a single facial expression or gesture that calls to mind the person’s old self — or more dramatic. Someone with dementia may joke familiarly with a loved one they haven’t recognized in years. Or a very ill person may temporarily regain lost abilities to walk, talk or eat normally. 

Newport recalls a patient with metastatic cancer who had been non-communicative for weeks. One day, she sat up in bed at 2 a.m., reached for her husband’s hand and had a meaningful 20-minute conversation with him. She died the following afternoon — but the conversation gave her husband peace of mind before she passed, Newport says.

Cases like this one are sometimes called episodes of “terminal lucidity,” because they happen shortly before death.

It’s difficult to say how common these episodes are. They are difficult to study since they are typically short, unexpected and often occur past the point in treatment when people are rigorously tested, Newport says. Limited research suggests that the majority of health care workers have seen at least one episode, but it’s not clear how often they happen overall.

What causes end-of-life rallies?

Some people experience health improvements when they enter end-of-life care, says Kelly Chin, a hospice and palliative care physician with Northwell Health in New York. Sometimes that’s because they’re no longer taking medications that cause side effects or mental fogginess, she says, and sometimes it’s because they are more comfortable when aggressive treatment stops. “Their bodies aren’t fighting,” she says. “They’re not having to wake up every four hours to … take 20 pills.” 

But these prolonged improvements are a bit different from episodes of terminal lucidity, which are typically inexplicable, brief and shortly precede death, explains Vicki Jackson, chief of palliative care and geriatric medicine at Massachusetts General Hospital. 

Some research published in medical journals suggests changes in brain activity, or even brain size, shortly before death may prompt terminal lucidity. But the bottom line is that scientists don’t fully understand what causes it, Jackson says. “I’m very humble that I don’t know what psychospiritual things happen for patients in that very last phase of their life,” she says.

How should caregivers navigate end-of-life rallies?

Hard as it is, it’s important for caregivers to accept that their loved one probably is not getting better, no matter how much they seem to bounce back, Newport says. Periods of lucidity rarely necessitate changes to someone’s treatment plan — although, Karlawish says, they can reinvigorate caregivers.

“Embrace [a rally as] a gift, for however long it is,” Jackson recommends. “This might be just a few hours or days, still in a downward trajectory.” 

During a rally, a caregiver’s most important job is spending quality time with their loved one. Resist the urge to run and grab others, she says, since episodes of lucidity can be over within minutes. “Just be present; take advantage of the opportunity,” Newport says.

If the episode goes on for a while, let the rallying person set the tone. If they’re not up for a deep or complex conversation, don’t force one. In some cases, though, people “come to” with a specific agenda of things they want to do or say, Newport says. If your person is up to it, you can use a rally to sort out emotional or logistical issues, or to ask how they would like their care to progress. 

Bear in mind, though, that even someone who appears lucid may not be fully processing the moment. People sometimes say ambiguous things during lucid episodes, which can be confusing for caregivers, Chin says. “Do what you think your loved one would have wanted,” she says. “There’s no right or wrong answer.”

If nothing else, Jackson says, a rally is a wonderful moment to affirm how much you care for your person. “You can’t really go wrong with ‘I love you,’” she says.