The Illness Progresses

 

As days pass, Mr. Stanton continues to do poorly. He is losing the will to live and feeling too tired to carry on. He knows that he is getting closer to the end. He is worried that he may not make it out of the hospital. He wants to die with peace and dignity. He also wants to live to see his granddaughter. The doctors are talking in riddles and he is feeling confused, scared, and angry.

He is wrestling with deep spiritual questions, remembering his Catholic upbringing and his wife’s devoted religious practice. He feels guilty, but he also feels angry that he feels guilty. One part of him wants the “sacrament of the sick” before it is too late for “his wife Marie’s sake”, though he does not believe in any of this. Most of all he would like to talk openly to a doctor about all his fears, but only if the doctor is kind and receptive. He refuses to bare his heart to the “know it all” arrogant young doctors.

Within days, Mr. Stanton transitions into the active dying process. He has lost hunger and thirst. He lies quietly in bed. He is not able to swallow. All his medications are given through parenteral routes. He is non verbal.

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Prognostication involves both acts of prediction and the art of communication (Christakis, 1999; Hallenbeck, 2003). The following table illustrates commonly seen symptoms:

Signs of Active Dying in 100 Cancer Patients

Sign

Mean/median hours prior to death (+ SD)

Retained respiratory secretions audible (“Death rattle”)

57/23 hours (82)

Respirations with mandibular movement (Jaw movement increases with breathing)

7.6 /2.5hours (18)

Cyanosis and skin mottling

5.1/1.0 hours (11)

No radial pulse

2.6/1.0 hours (4.2)

Adapted from Morita 1998

 

Mr. Stanton’s doctors knew the importance of communication in sharing prognostic information. In addition to sharing what he knew, he also acknowledged uncertainty. In bringing family members into this uncertainty, he anticipated their not uncommon desire to conduct a “death vigil.” The next table provides some suggestions for incorporating uncertainty into such discussions.

Incorporating Uncertainty into Discussions of Prognosis at the End of Life

  • Acknowledge limits to prognostic accuracy.
  • Give time estimates in ranges, not dates (“minutes to hours,” “hours to days,” “days to weeks,” “weeks to months”).
  • Emphasize that the trend of how the patient is doing is often the most important prognostic tool and that you will provide updates, based on the patient’s trend.

 

If death occurs while family members are away, some may experience guilt, anger, or great regret. Suggesting a positive framing for such an event (“perhaps he found it difficult to leave with you present…”) may provide solace.

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