Should Patient Autonomy End and Something Else Begin in End-of-Life Decision-Making?

There is discussion in the ethics community about whether patient autonomy (the right for patients to make their own medical decisions) should apply to end-of-life decisions or decisions when the patient has no capacity to make personal medical decisions; This issue is discussed in an article “The End of Autonomy” by Robert A. Burt in the Hastings Center Special Report November-December 2005 “Improving End of Life Care: Why Has It Been So Difficult?”

Prior to the Karen Quinlan Supreme Court decision in 1976 end-of-life medical decisions were essentially made by physicians and paternalistically suggested to patients or their families. Since then there has been an ethical,legal and social consensus that patients themselves have a right and should make their own decisions regarding all medical issues but particularly including those decisions which influence the course when end-of-life is nearing. However, repeated studies and surveys suggest that most patients don’t create advance directives telling the healthcare workers what they, autonomously, want to be done if they are critically ill and the chance for recovery is poor or the results of therapy will be a quality of life that the patient will not want to tolerate. There often is confusion about what the patient would have wanted and disagreement between family members and between family and doctors. Yet decisions have to be made and if not by the patient or paternalistically by the physician then what alternatives are there for end-of-life decision-making?

Robert Burt,in his article, suggests 3 additional possibilities:

1) No one should be authorized to engage in conduct that directly, purposefully, and unambiguously inflicts death, whether on another person or oneself.

2) Decisions that indirectly lead to death should be acted upon only after a consensus is reached among many people. No single individual should be socially authorized to exercise exclusive control over decisions that might lead to death, whether that individual is the dying person, the attending physician or a family member acting as a healthcare proxy.

3) As much as possible, end-of-life care should not depend on explicit decisions made at the bedside of a specific, dying person but rather should be implicitly dictated by system-wide decisions about available resources, personnel, and institutional settings—that is, by setting up definite pathways that implicitly guide and even control caretaking decisions in individual cases.

Should we do away with patient autonomy in end-of-life decision-making and return to physician paternalistic decisions, avoid any action that inflicts death, have the decision made not by the patient or any one person but by a consensus by many people or, finally, a system-wide decision applied to all patients and based not on the patient’s personal interest but on economics,strategy and logistics of the system itself? Or do you have another idea? ..Maurice.