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Decisions at the end of life: have we come of age?

Linda Emanuel* and Karen Glasser Scandrett

Author Affiliations

Buehler Center on Aging, Health and Society, Northwestern University Feinberg School of Medicine, 750 N. Lake Shore Drive, Chicago, IL 60611, USA

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BMC Medicine 2010, 8:57  doi:10.1186/1741-7015-8-57

Published: 8 October 2010


Decision making is a complex process and it is particularly challenging to make decisions with, or for, patients who are near the end of their life. Some of those challenges will not be resolved - due to our human inability to foresee the future precisely and the human proclivity to change stated preferences when faced with reality. Other challenges of the decision-making process are manageable. This commentary offers a set of approaches which may lead to progress in this field.

One clearly desirable approach can and should be used more often than it is: the routine inclusion of discussions about the goals of care and documentation with all patients who have a poor prognosis. The match between a patient's goals and the care received should be the gold standard for quality palliative care.

Planning for future situations is necessary but hard. In order to achieve efficient elicitation and documentation of advance care planning, research is needed on each individual's thresholds for transitioning from curative to palliative intent and on the trajectory of changed preferences when illness occurs. Another clearly desirable approach is the documentation and use of community preferences, so that proxies making decisions without guidance from the patient can at least know what the majority of people considering similar situations chose to do.

Part of the challenge of achieving 'quality dying' may have to do with the still current (mainly Western) tendency to a death-denying culture and the inability of dying people to enter into the dying role. Awareness of the tasks of the dying role and the provision of time and space for those tasks during the delivery of medical care is essential. Medicine needs to continue to enhance the existential maturity of our profession, our patients and the cultures in which we practice. This state of mind should provide for decisions made with a more settled acceptance of mortality and with more awareness of the necessary connection to our survivors and next generation that mortality creates. Specific interventions, such as Dignity Therapy and advance care planning, may aid this state of mind.