Li Yan, a 28-year-old woman in northwest China’s Ningxia Hui Autonomous Region, has been suffering from progres-sive muscular dystrophy since shortly after her birth. Today she can’t move any part of her body except...Li Yan, a 28-year-old woman in northwest China’s Ningxia Hui Autonomous Region, has been suffering from progres-sive muscular dystrophy since shortly after her birth. Today she can’t move any part of her body except for her head and a few fingers.展开更多
The article intends to present a patient＇s illness experience while reflecting on the individual＇s inner struggle. The apparent inconsistencies in the patient＇s care decisions from time to time could actually be th...The article intends to present a patient＇s illness experience while reflecting on the individual＇s inner struggle. The apparent inconsistencies in the patient＇s care decisions from time to time could actually be the result of inner unresolved struggle. Care givers and family members could become easily disenchanted and think the patient is being difficult, or simply refusing care. The author will highlight some issues of ethical importance. First, there is individual struggle by the patient in accepting a terminal diagnosis. While the patient may have an intellectual understanding of a diagnosis, spiritually,the patient needs human support in accepting the reality of a terminal condition. Second, there has to be an acknowledgment of the patient＇s individuality by family and care givers. Third, respect for patient＇s autonomous decision making right. The author will argue that respect for persons essentially recognizes the autonomy of each individual as a decision maker for the self. This has to be recognized with every individual, especially the most vulnerable. When an individual is not able to actively exercise the decision making power, one could use a surrogate decision maker or an advance directive. The author＇s goal is to argue that care givers should make terminal care as compassionate as possible by relating to patient＇s spiritual, psychological and physiological needs.展开更多
文摘Li Yan, a 28-year-old woman in northwest China’s Ningxia Hui Autonomous Region, has been suffering from progres-sive muscular dystrophy since shortly after her birth. Today she can’t move any part of her body except for her head and a few fingers.
文摘The article intends to present a patient＇s illness experience while reflecting on the individual＇s inner struggle. The apparent inconsistencies in the patient＇s care decisions from time to time could actually be the result of inner unresolved struggle. Care givers and family members could become easily disenchanted and think the patient is being difficult, or simply refusing care. The author will highlight some issues of ethical importance. First, there is individual struggle by the patient in accepting a terminal diagnosis. While the patient may have an intellectual understanding of a diagnosis, spiritually,the patient needs human support in accepting the reality of a terminal condition. Second, there has to be an acknowledgment of the patient＇s individuality by family and care givers. Third, respect for patient＇s autonomous decision making right. The author will argue that respect for persons essentially recognizes the autonomy of each individual as a decision maker for the self. This has to be recognized with every individual, especially the most vulnerable. When an individual is not able to actively exercise the decision making power, one could use a surrogate decision maker or an advance directive. The author＇s goal is to argue that care givers should make terminal care as compassionate as possible by relating to patient＇s spiritual, psychological and physiological needs.
