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THE DYING PROCESS:
TWO POSSIBLE ROADS
Freemon (1981) presents two possible roads to death that include the “usual road” and the “difficult road.” The “usual road” is an uneventful path, moving from normal to sleepy, lethargic, obtunded, semicomatose, comatose, and finally, death. The “difficult road” is a path moving from normal to restless, anxious, tremulous, cognitively impaired, with possible hallucinations, delirium, myoclonic jerks, seizures, and finally, coma followed by death. A well-known clinical picture of the “difficult road” is a previously comfortable individual that suddenly becomes restless, experiences a change in mental status, and is attempting to get out of bed despite significant weakness. As noted earlier, this symptom-trajectory is extremely difficult to reverse.
Marked by the coupling of cognitive impairment with anxiety, the “difficult road” creates a set and setting of fear during the dying process. Its sudden onset tends to escalate pain and other symptoms that may have been previously well-managed. Events such as seizure-activity, out-of-control pain, or a neuropsychiatric emergency can require transport to an acute-care setting at a time when a dying patient is extremely sensitive to movement. A prolonged episode of hiccups can cause extreme discomfort and persistent agonal breathing patterns. The “difficult road” presents obstacles to the implementation of an EOL care-plan for patients and families with a preference for dying at home.
The on-going clinical challenge of the “difficult road” is addressed widely in the literature as “terminal agitation”, “terminal restlessness”, “terminal delirium”, and other clinical-pictures associated with CNS-excitement. Haig (2009) reports that 25% to 80% of patients experience terminal agitation at EOL. Singh, Rees & Sander (2007) estimate that 13% of all cancer patients experience seizure activity. Lawlor et al. (2000) state that 88% of patients dying from cancer experience terminal delirium. De La Cruz et al. (2015) report delirium in half of the patients with cancer admitted to a palliative care unit at Grey Nun’s Hospital in Edmonton, Alberta. A study of high-grade glioma patients by Sizoo et al. (2010) examined symptoms during the dying process and reported seizures in 45% of those patients. This study also reports that 52% of patients experiencing seizures at EOL had greater than one episode of seizure activity, 11% of patients who had been seizure-free throughout their course of illness had their first seizure at EOL, and 7% of patients died during seizure activity. Tradounsky (2013) reports that patients with slow-growing primary brain cancers, such as oligodendrogliomas and low-grade astrocytomas, are at high risk for seizures with a prevalence of 70%-100%.
The difficult road is well-known to clinicians providing EOL care to people with AIDS. Many, if not most, of the individuals with AIDS cared for by this writer experienced the “difficult road” during their dying process. Many other