Refusing and withdrawing treatment at the end of life: ethical complexities involving patients who lack decision-making capacity

Abstract

Obtaining valid, free and informed consent is not always very easy. It presupposes on the one hand disclosure of fair, clear and appropriate information, and on the other hand the capacity to understand as properly as possible, and then to take a decision.  So when a patient has long-term cognitive impairments and lacks the capacity independently to make or communicate a decision and when this decision is about his or her end of life, the consent may be very complex. how to do it right? The present article does not give «the» solution but it discusses the issue in the French legal and ethical framework. The challenge is to find a crest line between beneficence, respect for autonomy and the refusal of «unreasonable obstinacy» (which defines futility in French Law). Beneficence might mean withdrawing (orwith holding) ongoing medical treatments (chemotherapy, radiotherapy, etc.) when they become increasingly ineffective and furthermore, are aggressive and intrusive for the patient (leading to a decrease in his quality of life). But when the patient cannot consent or seems to disagree, how can we go forward? The contribution will first examine the value of patient decision
making and consent in health care and then the role that family and caregivers can play in supporting these. Since death is a unique, definitive moment, we must not forget that often the experience of relatives with the patient conditions both the decision-making process  and their mourning process. Finally, I will examine and discuss three specific clinical situations when a decision has to be made regarding withholding and withdrawing of treatments: when a patient is conscious, when he/she is unconscious and has no advance directives, when he/she knowingly refuses treatment. The struggle is to know what truly matters to the dying person in order to respect his or her wishes.