THE ROAD TO A BETTER DEATH IN AMERICA

    Five domains of quality end-of-life care have been identified by Peter Singer, et al, in order of importance:(1) (1) receiving adequate pain and symptom relief; (2) avoiding inappropriate prolongation of dying; (3) achieving a sense of control; (4) relieving the burden of loved ones; and (5) strengthening relationships with loved ones. In a broader sense, our priorities are (1) longevity; (2) control; and (3) comfort, yet the importance of one over the other often changes as we approach the end of life, such that comfort usually assumes the greatest importance. Transition of priorities and acceptance of death as part of life, even welcoming a good death, takes time. Our ability as physicians to transfer the information our patient’s and families need to prepare them for death is limited. There is typically a huge gap between what we think we tell our patients and what they hear and understand, not only due to limitations in medical literacy, but also due to the vague and indirect manner in which physicians typically explain medically futile or extremely poor prognostic conditions. In addition, we think we know what it’s like to be dying, but we don’t. Our capacity to relate to the extreme emotions and concerns of dying patients is very limited.

    Our tendency, as physicians, is to choose, along with the patient, to continue along the path of “curative” treatment options, even when such efforts are clearly futile. The most common professional problem in end-of-life care is failure to make a deliberate, mutual (with patient, family and other physicians) decision to make the transition from curative to palliative care, based on the timely recognition of medical futility. It is only through embracing palliative care as the primary goal that we can attempt to help our patients have a “good death,” that is (1) free of physical and psychological pain; (2) with a sense of control and autonomy; (3) with family and other support systems in place, with death at home, if possible; and (4) with the opportunity to resolve conflicts, to say “goodbye,” to “let go” of the things most valued during life and embrace death as a natural part of living. 

    As physicians, we must remember that patients usually ”know” when they are extremely ill and dying; usually want information about what to expect and what options are possible; and commonly want to talk about their feelings. Indeed, many patients would greatly appreciate a sincere and candid “goodbye” from their physicians.(2) A recommended approach to saying goodbye is:

    Physicians must seek to accept the death of the individual patient and death in general, and must seek good communication skills in dealing with dying patients in order to realize the potential rewards of caring for patients, not only during health but also during death.

^[1] Singer, Peter. Rethinking Life and Death: The Collapse of Our Traditional Ethics. 1994.

^[2] Back A, Arnold R, Tulsky J, Baile W, Fryer-Edwards K.  On Saying Goodbye:  Acknowledging the End of the Patient-Physician Relationship with Patients Who Are Near Death. Ann Intern Med. 2005;142:682-685.

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