Here are passages from a few more scholarly journal articles on the subject of what to expect when someone is dying.
The full text of this first article, “Ensuring Competency in End-of-life care: Controlling Symptoms” by Frank D. Ferris, Charles F. von Gunten, and Linda L. Emanuel can be found here. It includes 100 works cited, and the great thing here is that there are links to take you to the abstract or full text of the articles listed — if available freely. It looks to me that for at least half of these, such links are provided. Topics covered include:
Approaches to the medical management of pain, depression, anxiety, breathlessness (dyspnea), nausea/vomiting, constipation, fatigue/weakness and the symptoms common during the last hours of life…
“Is This a Bad Day, or One of the Last Days? How to Recognize and Respond to Approaching Demise” by Geoffrey P. Dunn and Robert A. Milch [Journal of the American College of Surgeons, Volume 195, Issue 6, December 2002, Pages 879-887] is freely available here. It has a lot of information, including good summary tables of changes that happen weeks to days and hours before death. A few highlights:
One of the most reliable criteria for differentiating a bad day from one of the last days is the patient’s own report. If the patient states “I am dying,” or has a sense of impending doom, experience often proves him right. . . .
To date, there are no validated, consistently accurate, generally accepted models for predicting life expectancy in either cancer or noncancer diagnoses. . . .
A study of 468 hospice referrals reflecting the national pattern of diagnoses admitted to programs showed that only 20% of prognostications of length of survival were accurate within 33% of actual survival. Sixty-three and one-half percent of physicians overestimated survival, averaging five times greater than the actual survival. More experienced physicians were more accurate, and those with a longer acquaintance with their patient tended to overestimate survival. . . .
Regardless of diagnosis, observable changes during the last days of life include (Table 4): profound weakness (asthenia) and bed-bound state, sleep much of the time, indifference to food and fluids, difficulty swallowing, disorientation to time with increasingly brief attention span, low or lower blood pressure not related to hypovolemia, urinary incontinence or retention caused by weakness, loss of ability to close eyes, oliguria [low output of urine], vivid dreams or nightmares, patient reports of seeing previously deceased individuals important to the patient, frequent references to “going home” (not their street address!), or speech content related to travel to a final destination. . . .
Very late changes (Table 5) related to changes in both brain stem and cortical function heralding demise within a day to hours include: changes in respiratory rate and pattern (Cheyne-Stokes, apneas); mottling and coolness of skin from vasomotor instability with venous pooling, particularly in the pretibial [shinbone] region; dropping blood pressure with rising, weak pulse; and mental status changes (delirium, restlessness, agitation, coma). The majority of patients are comatose at time of death, though up to 30% of patients are reported to be alert until moments before death.
“Care of the Dying Patient: The Last Hours or Days of Life” [BMJ. 2003 January 4; 326(7379): 30–34] can be read here. Drs. John Ellershaw and Chris Ward begin with this fairly amazing observation:
We searched Medline from January 2000 to March 2002 in the English language by using the terms “palliative care” and “terminal care.” The search yielded 253 references, but only a limited number of articles were directly related to the care of dying patients.