The Dying Experience

TO THE EDITOR:

The conclusions drawn by Lynn and colleagues [1] from their study of the perceptions of family members of the deaths of seriously ill patients paint a bleak picture of death in the modern hospital. Several points seemed to me to be misleading, however, or at least incongruous with those conclusions.

First, the proportion of patients in this study who had cardiorespiratory disease, failure, or cancer was high; one would therefore expect dyspnea, even severe dyspnea, to be present in the final days. Other than sedation to the point of stupor with or without mechanical ventilation, I am unaware of any way to alleviate dyspnea (or others' perception that the patient is dyspneic) in the presence of a failing lung. Second, I would argue that “fatigue” is really not an appropriate symptom to include in this study. Certainly, I would expect patients in the end stages of terminal or major systemic illnesses to be fatigued and to appear to be fatigued to observers, especially those who knew the patients in times of health. It is certainly reasonable to expect to alleviate pain. However, by lumping such symptoms as fatigue, dysphoria, or even dyspnea together with pain, the authors create the impression that all such symptoms are truly reversible or treatable in the dying experience.

Finally, the authors state that “surrogates usually reported that the patients preferred treatments that focused on comfort … Nevertheless, many patients were treated aggressively.” In fact, only 1 in 10 patients had a resuscitation attempt, a figure that I consider to be appropriately low (although it could possibly be a bit lower still). My reading of the data presented is that the term “aggressive” relies heavily on the placement of feeding tubes (4 in 10 patients). Although this is sometimes an uncomfortable and undesirable intervention, I would argue that feeding tubes are in fact compatible with comfort care, providing hydration and pain medication without the discomfort of maintaining intravenous access. They are not nearly in the same class of aggressiveness as cardiopulmonary resuscitation, other resuscitative measures, or intubation. Even mechanical ventilation (1 in 4 of Lynn and colleagues' patients) can be considered a palliative, symptom-relieving intervention. Is it too aggressive in that case?

I fully support the ultimate goals of this study and the movement to improve the experience of dying patients and their loved ones. This study and SUPPORT in general are a step in the right direction. Unfortunately, I think that at some level we are seeking to fully conquer or “solve” the process of dying just as we do with disease. But it is human nature to struggle against death. As Dylan Thomas wrote, “Do not go gentle into that good night. Rage, rage against the dying of the light … .” The hard part will be collectively deciding which symptoms and interventions can be improved, without creating the expectation that all deaths can be symptom-free experiences.

• Copyright ©2004 by the American College of Physicians