Safeguarding the unconscious patients’ overall benefit : towards a ‘consensus building’ approach

Abstract

The classical medical-ethical question: ‘What should we do in relation to what we can do?’ assumes a novel dimension in today’s development of knowledge and biotechnology which offer new possibilities to prolong the process of dying. The quality of decision-making process in end-of-life issues in clinical settings when patients are un-conscious depends on taking seriously into consideration the following issues: which fundamental ethical values should be considered; what is meant by the ‘patient’s overall benefit’ or the ‘patient’s best interest’; what is medically meaningful treatment and by whom is this determined; who is the decision-maker; what are the criteria for selecting the decision-maker; if a patient is mentally incapacitated or brain-damaged, what value does an advance directive (an oral or written statement of end-of-life preferences) have; if there is no advance directive, who is the legally valid surrogate responsible for the decision-making; what happens when the legally valid surrogate does not have the best interest of the patient at heart; how should conflicts, such as regarding futile or inappropriate treatment, be re-solved, and how could such conflicts be prevented? End-of-life decisions, particularly in case where patients do not have the capacity to decide on life-sustaining treatment for themselves, is an inclusive process which aims to determine what is the best treatment of the individual, at that time and in that place. It is a negotiating process among all parties involved which should ultimately lead to consensus building. At the end-of-life decision process the issue of deep and continuous palliative sedation often crops up. The thorny issue is whether it is ethically and legally permissible to withhold or withdraw nutrition or hydration when deep and continuous palliative sedation is administered. No ethical problems arise if palliative sedation is administered to a patient in cases when there is a strong objective medical indication for such administration. However, when deep palliative sedation, together with the withdrawing or withholding of artificial nutrition and hydration, is administered without any objective medical indication, simply because it is requested by the patient, serious contentious ethical and legal issues arise. The 1999 Recommendation 1418 of the Parliamentary Assembly of the Council of Europe on the Protection of the human rights and dignity of the terminally ill and the dying explicitly upholds in article 9.c the prohibition against the intentional killing of the life of terminally ill or dying persons. It recognizes the fundamental right to life and declares that a terminally ill or dying person’s wish to die cannot of itself constitute a legal justification to carry out actions intended to bring about death.