34 hours before he died, Alan became anxious and agitated. At home, on hospice, he would no longer stay in bed, but kept climbing out, stumbling to the floor, trying to get away. Despite the gentle words of his wife and daughter, always at his bedside, despite multiple visits from hospice and accelerating narcotic doses, he could not be calmed. Finally, exhausted, in the 2:00am darkness, the family called 911. Suddenly, a flame extinguished, still in the house he loved, Alan died.
End-of-Life experts call it “terminal agitation;” a burst of activity, usually with confusion, and perhaps pain, at the end of life. Medically, it signals a final event such as an overwhelming infection like pneumonia, an obvious or hidden bleeding, a massive stroke or perhaps a blood clot to the lung. Patients, who have decided to end their life focusing on comfort and peace, are thrust, with their families, into an emotional crescendo of movement, bizarre behavior and turmoil. Terminal restlessness, delirium or agitation, is different from a simple medical problem, such as constipation, urinary retention or other easily fixed difficulty. Terminal agitation is dying.
This devastating change places a terrible burden on patients, but even more can overwhelm families and result not only in immediate tumult, but in long term guilt. After agreeing on hospice, and a palliative care approach, loved ones hope and may expect that the patient will gradually fade and, perhaps with the assistance of mild sedation, die peaceably. Instead, what happens to patients who experience terminal agitation is a blast of fear, excitement, out of control symptoms and emotional exhaustion.
“Are we doing the right thing?” Perhaps the increase in activity and change in symptom means aggressive medical intervention is required. Maybe the hospital or an intensive care unit can do a better job. Not seeing the “quality of life” they imagined and with the patient agitated and not communicating, tempers rise, prior decisions are questioned and even the support of hospice may be seen as “euthanasia” or simply not caring. Bad choices are made in the moment, resulting in anger and guilt, which poison the years to come.
Faced with an abrupt change in a patient’s condition, and with frightened family members pressing for answers, even doctors may find themselves questioning prior diagnoses and may be tempted to give aggressive care. Patients, who have been receiving hospice and palliative care for months, are rushed to emergency rooms, CT scanners and undergo complex therapy, even surgery. Losing sight of the presence of an incurable advanced illness, physicians may try to fix the new calamitous crisis.
The key to handling the potentially devastating impact of complex end of life events is pre-education and planning. No matter what the disease, cancer, ALS, Alzheimer’s, some single event must occur for life to end. A vital system must fail. The original disease directly or indirectly, causes the final change, and even if we are able to “fix” the new problem, the primary illness is still present. That fatal failure of function results in catastrophic collapse of the body and that may yield agitation, shortness of breath or pain, on the way to causing death.
Families must be informed that when the final hours arrive, death may take this form. Emotionally, friends and loved ones must be ready. Everyone needs to talk and understand, ahead of time, that the last days or hours of life may not be easy. Our bodies do not pass easily from this life, and may flail. In your heart, be ready.
When such an event happens, good communication with the patient’s doctor and hospice staff can help everyone cope with what is happening. In addition, they need to understand that the medicines or methods that doctors or nurses use in an attempt to give comfort are not themselves fatal. While narcotics or sedatives may be accelerated, it is in response to terrible symptoms, not the cause. Many believe that a “morphine drip” is a fatal event which itself causes death. Rather, the event, which is occurring is the cause of the end, and morphine is an attempt to smooth that passing.
Much has been written about the dream of “a good death.” What we really mean is a “good life” until the end. For ourselves and those we love, we hope that the last hours will be gentle and that death will come as a fall breeze through dry leaves, a silent sunset. However, sometimes, the end comes like a storm, screaming in the night, blocking out the light, trying to toss us apart. Stand together. Comfort each other. Remember your love.