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Palliative Care Perspectives : Chapter 11: The Final 48 Hours : Symptoms of Active Dying

Many people do fine during active dying. However, certain symptoms may arise that require attention.1,4-6 In a study of symptoms that occurred in 200 actively dying cancer patients, Lichter found the symptoms shown in Table 11.1.7

Table 11.1. Symptom Frequency (in percent)
Noisy and moist breathing56
Urinary incontinence32
Urinary retention21
Restlessness and agitation42
Nausea and vomiting14
Jerking, twitching, plucking12

This study provides a useful checklist for symptoms to consider and some interesting food for thought. It is not surprising that incontinence was present in one-third of patients. The clinician may be surprised at the relatively high incidence of urinary retention. Clinicians may be fooled into thinking that lack of urine output reflects dehydration or renal failure. Palpating the bladder and watching to see if the patient is distressed and reaches for the groin may provide clues to occult retention. Nausea tends to fade in the actively dying, which is probably related to decreased oral intake. The percentage of confused patients in this study seems remarkably low to me. The considerably higher percentage of restless and agitated patients suggests that altered states are not uncommon in actively dying patients. This begs the question of how one might distinguish "confusion" from "restlessness and agitation."

Actively dying patients frequently develop irregular, or Cheyne-Stokes, respirations. Irregular breathing is rarely distressing to patients. Dry mouth persists far into the dying process and requires meticulous attention. Agitation or terminal distress can be very troublesome and often requires some degree of sedation. (See section on altered states in Chapter 7.) There is no evidence that such sedation (or treatment of pain with opioids) significantly hastens death in the last 48 hours, as Morita and colleagues found in a study correlating time of death with opioid and sedative doses over the last 48 hours.8 Pains certainly were not rare in the Litcher study. New pains were identified 29.5% of the time. However, no pains were judged as persistent or severe. The study was conducted on a hospice ward. This stands in sharp contrast to the SUPPORT study, in which 50% of dying patients in the hospitals studied were judged by relatives to have had 7 of 10 or greater pain in the last three days of life.9 In the Litcher study, 91% of patients were on opioids, and 91.5% of deaths were judged to be peaceful. This study is good news for those patients, families, and clinicians who want data regarding dying. Contrary to common fears, paroxysms of pain and great distress are uncommon at the very end. Most dying can be peaceful if we support it properly. Ellershaw and colleagues recently documented, using a standarized evaluation instrument, the Integrated Care Pathways (ICP) assessment tool, that 80% of the 168 patients followed had either good control of the three symptoms that were followed (pain, agitation, and respiratory secretions) or only one episode "out of control" in the last 48 hours when good palliative care was provided. "As death neared, there was a statistically significant increase in the number of patients whose pain was controlled."6

Cheyne-Stokes respirations

Cheyne-Stokes respirations refer to a rhythmic change in respirations wherein breathing becomes shallower and shallower variably with a slowing in respiratory rate that culminates usually in complete cessation of breathing for several seconds to more than a minute. This is followed by progressively stronger respirations that become exaggerated and quite deep. This pattern is thought to result from abnormal brainstem responses to CO2 levels in the blood - initially undercompensating and then overcompensating. Cheyne-Stokes respirations can occur in other nonterminal disorders such as heart failure and stroke. It is interesting to note that patients who are able to speak generally say that no distress is associated with this breathing pattern. From this we may extrapolate to dying patients, who usually cannot speak with Cheyne-Stokes respirations, and presume that the syndrome is not disturbing to the patient. However, family members and clinicians may assume or project distress into this syndrome and thus often need to be coached. I usually explain that the pattern results from a breakdown in "cycling" between the lungs and the brain and that, as far as we know, it is not bothersome to the patient. This can also be an opportunity to discuss that at some point breathing will not just pause, but stop altogether, marking the death of the person.

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.