This paper examines the end-of-life (EOL) decision-making process for mentally incapacitated patients from an ethical perspective. It introduces four common models in EOL decision making: medical paternalism, individualism, familism and the shared decision-making model. According to medical paternalism, the final decision should be made by the medical practitioner, whereas individualism asserts that this decision should be made by the patient before losing decisional capacity. Familism regards the final decision as a collective choice made by the family, whereas the shared decision-making model maintains that the family should jointly make the decision after taking the patient’s wishes, values and beliefs into consideration. The choice of model is affected by different values upheld by different people across different cultures. These values, including autonomy, best interests, family value, and the sanctity of life, are discussed in this paper.
This paper also examines the role of advance directives (ADs) in EOL decision making. There are two kinds of ADs: instructional directives and proxy directives. Instructional directives can be tools with which patients exercise autonomy, and proxy directives can be used to assert the value of the family. The distinction between the execution of ADs and euthanasia is discussed. Four positions are put forth to defend the distinction. First, following an AD can be regarded as an act of respecting the autonomy of the patient. Second, the doctor who duly respects the patient’s wishes does not have the intention to kill the patient. Third, the life-sustaining treatment refused by the terminally ill patient is usually futile. Fourth, the cause of the patient’s death is the life-threatening disease itself.
The paper then discusses the use of ADs and the choice of the EOL decision-making model in Hong Kong. Under the common law in Hong Kong, a valid and applicable AD is legally binding. According to a survey, a significant number of people in the community believe that they should be allowed to exercise their self-determination in the EOL stage when they become mentally incapacitated. ADs are important tools for them to exercise their autonomy. Nevertheless, the same survey shows that more people prefer the shared decision-making model. Therefore, it is argued that advanced care planning (ACP) should be promoted in Hong Kong. ACP is a communication process that aims at promoting a common understanding among patients, their family and health-care professionals, and a close alignment of their expectations regarding the goals and objectives of EOL care. It is argued that ADs also have a role to play in the process because they may help the family and the attending health-care team to make difficult life-and-death decisions for the patient.
Hong Kong is a Chinese society deeply shaped by a strong Confucian ethos. This paper argues that the shared decision-making model, which is an amalgam of familism and medical paternalism, is very suitable for Hong Kong. It recognizes the value of the family because the views of the family members are seriously considered. The involvement of medical practitioners in this model can also help the family to fulfill the responsibility of taking good care of the patient. Furthermore, harmony is an important value in Confucianism. The model takes that value seriously because it aims to develop a consensus among the patient, the family, and the medical practitioner. In sum, the model is very suitable for many people in Hong Kong, though its adoption does not preclude patients from using ADs to exercise their autonomy if they so wish.