Terminal Lucidity – What Family Needs to Know

When asked about counseling families of terminally ill patients on the possibility of an “end-of-life rally” or Terminal Lucidity, Dr. Craig Blinderman, director of adult palliative medicine at Columbia University Medical Center, stated, “I always provide a lot of anticipatory guidance, so that you should not be surprised or alarmed…. Obviously, you don’t want to dash hopes, but you have to make it clear that Dad is not rising from the dead….”

Losing a beloved family member is devastating under any circumstances. Dying can be a long process involving pain and loss of control. A loved one may be unresponsive, requiring total physical care for weeks or months before he dies.

Family, with the help of palliative care or hospice professionals, clergy, or other caregivers, do their best to try to anticipate and meet a loved one’s comfort needs.

The dying process is further complicated when a terminal loved one suddenly awakens and engages with those in the room as if he were completely well.

Experiencing such an incident is shocking and may leave the family wondering if their loved one is dying. This “rally” or burst of energy and clarity at the end of life is called Terminal Lucidity.

What is Terminal Lucidity and who experiences it?

“End-of-life rallies” have been documented for over 200 years, but only recently has the concept been given a name in scientific literature. In 2009, Michael Nahm, a biologist and forester coined the phrase “Terminal Lucidity,” defining it as “the unexpected return of mental clarity and memory shortly before death.”

A person experiencing Terminal Lucidity suddenly awakens from confusion, drowsiness, or an otherwise non-responsive state, recognizing family and friends, speaking to them with clarity, moving his body, and often asking for a favorite food or drink.

This state of energy and clarity may last for minutes, days, or a few weeks before death. It is as if the dying process has temporarily gone into remission.

Terminal Lucidity is not to be confused with deathbed visions, where a dying loved one sees deceased family members in the room and speaks to them, or out-of-the-body experiences, in which the dying person describes floating to the ceiling while observing everything below.

Incidents of Terminal Lucidity have been documented more often in cases of patients with conditions that affect the brain, such as mental illness, dementia, brain tumors, and strokes.

However, Nahm states that “[n]neurodegenerative processes, such as Alzheimer’s disease, brain tumors, and strokes, are no prerequisite for the occurrence of terminal lucidity.”

How frequently does Terminal Lucidity occur

It is difficult to determine how frequently Terminal Lucidity occurs because evidence-based data is hard to find. As we cannot predict who will experience Terminal Lucidity, to conduct formal studies researchers would have to accomplish the following:

Researchers would have to locate dying patients who are active in this process of “rallying”, which may last only minutes to hours.

Medical Ethics Committees must be convinced that the study will benefit patients. Blood tests or other forms of monitoring may be in direct opposition to the dying person's wishes to receive only comfort care if the study aims to determine the cause of Terminal Lucidity.

A study would require determining the mental capacity of the participant as they rally, to determine if he could give informed consent. Getting proper consent would be unlikely given the short period that clarity may last.

Researchers would also have to gather data in such a way that they do not exhaust the person and do not monopolize the time the person has left to spend with family.

What causes Terminal Lucidity

Without further scientific studies on Terminal Lucidity, the reasons cited for its occurrence are pure conjecture. Some of the more plausible theories include:

Swelling in the brain decreases as fluids and food are discontinued at the end of life.

Discontinuation of medications with toxic effects, such as chemotherapy, may allow the individual to temporarily regain brain function.

Finally, a dying brain may release steroid-like chemicals that reduce swelling and allow a brief return to mental clarity.

Engaging with a person experiencing Terminal Lucidity

Dr. Alexander Batthayany, one of the primary researchers on Terminal Lucidity, supports the theory that when someone is dying and “rallies” - it may be because they have something relevant and meaningful to say.

Those experiencing Terminal Lucidity, often awaken suddenly and begin interacting with those around them and their environment. They may want to get out of bed, despite being bed-bound for months.

Special food or meals may be requested. The person may ask to see a family member to make amends or to visit before they die. The person may want to be sure certain things are completed, even if they seem trivial.

I have been with family members and patients experiencing Terminal Lucidity. Last year, I left my father’s bedside at the hospice to go home to shower and change clothes. For several days my father had been sleeping, resistant to any form of repositioning, and unable to eat or drink.

When I returned, my father opened his eyes and motioned for me to come closer. He asked, “is this the end?” Before I could answer, he impatiently said, “Tell me, is this it?” His gray eyes flashed, taking me back to my childhood when you knew you better tell the truth.

Through my tears, I explained to my father that he was dying. He nodded when I asked if he could hear me, despite his significant hearing loss. I held his once powerful, hard-working hands, and felt him gently squeeze mine. We were able to exchange "I love you” one more time before he fell asleep, passing away the next morning.

This short period of Terminal Lucidity provided a gift that I will treasure forever.

How a family member can support a loved one experiencing Terminal Lucidity

There are things family members can do to support a loved one during a period of Terminal Lucidity. These things include:

• Let the palliative care or hospice team know that your loved one is "rallying." Tell them that your loved one is requesting to sit up, eat certain foods, or talk with certain family members;
• Remind yourself that this period of energy and clarity is a gift and will not last indefinitely;
• You should accommodate your loved one's requests for food and fluids, even if they must be pureed or thickened to prevent choking;
• If your loved one wants to speak to a certain family member or friend to make amends, assist him to reach out to that person;
• If he has the mental capacity, your loved one might want to make a Will or funeral arrangements. Make arrangements for him to meet with his legal or financial advisor as soon as possible;
• Your loved one may refuse pain medication to stay alert. Discuss pain management with the palliative care or hospice team to balance mental clarity against adequate pain relief. Look for signs of pain, such as facial expressions, guarding a body area, shallow breathing, sweating, moaning, or statements that your loved one is in pain;
• Remember your loved one has not recovered. He is weak and needs monitoring for safety when engaging in physical activities;
• Watch for signs of tiring and support rest periods.

Palliative care and Hospice caregivers provide education on the signs and symptoms of dying but have little information on how to make an “end-of-life rally” as meaningful as possible.

A Death Doula, a caregiver specializing in end-of-life care, can help you walk through this last stage with your loved one in a way that maximizes this final gift of clarity.

What are the implications for research in the area of Alzheimer’s disease

In some scientific circles, these brief periods of energy and clarity are now being referred to as Paradoxical Lucidity, rather than Terminal Lucidity.

In 2019, the National Institute on Aging (NIA) sponsored a workshop on the topic of “Paradoxical Lucidity in Late-Stage Dementia.” In this study, patients may have advanced neurodegenerative diseases, such as Alzheimer’s, but may not be terminal at the time of mental clarity. NIA funds several other "Lucidity in Dementia" studies, hoping to discover how the brain recovers function for brief intervals.

If your loved one is fortunate enough to experience a period of Terminal Lucidity before they pass, the family can help make the most of this time.

Managing pain without overmedication, taking safety precautions when helping your loved one get out of bed, providing food and fluids requested, as well as accommodating requests to speak with certain people or complete unfinished tasks, can help your loved one die with dignity.

The memories you create during this final period of clarity may support you when you miss your loved one the most.