Winter, 2005
Question: A 96-year-old-woman is on a mechanical ventilator in the Intensive Care Unit (ICU) because of respiratory failure. She has multiple medical problems that include a severe cardiomyopathy and cerebrovascular disease. The patient had previously told her physician she did not want to be placed on a mechanical ventilator or resuscitated. However, her children have insisted that all life supports be continued and have specifically requested the placement of a feeding tube. The health care team is distressed, because they believe continued treatment is almost surely futile, the patient is suffering needlessly and that by honoring the family's wishes they are violating the patient's wishes.
How would an ethicist in China advise the health care team?
Response: Recently, a similar case involved one of our colleagues whose 84-year-old mother was hospitalized in the ICU with multiple organ failure. The health care team consulted with the colleague about whether to use a mechanical ventilator because of respiratory failure, since otherwise, her mother would die soon. Having taken care of her mother for many years, the colleague often heard her mother say that she did not want to be placed on a mechanical ventilator or resuscitated at the end of life. But other family members, especially the elder brother, didn't agree with her wish to act in accordance with her mother's will.
Her mother was placed on a mechanical ventilator and given full medical treatment. Several days later, no miracle happened, and all family members agreed unanimously to withdraw the breathing machine and stop treatment. The mother died soon afterward. This may be the most common way such problems are resolved currently in China. First, the key element of clinical decision-making is not the will of either the patient or the health care team, but that of the patient's family members. The "patient" has a special role in chinese society and is viewed as someone who deserves care and love and should be free of responsibilities, such as decision-making. Although usually a group decision, it may be expressed by the most authoritative family member, such as the patient's spouse or an adult child if the patient doesn't have a spouse.
Sometimes it is the elder son; usually it is the one who contributes most to the family.
The health care team's advice is very important and usually accepted by the family. The ethical issues here are not only the advice itself, which may be the opinion of the physician in charge (and may be wrong), but also potential conflicts of interest. If there are spare beds in the hospital, the physicians may prefer to accept the patient and administer futile treatment in order to raise the income of the hospital. Conversely, if a patient doesn't pay the hospital, the doctor will be under pressure from his department and the hospital to discharge the patient.
In the case of the 96-year-old mother, in the US health care team's view, the treatment is almost surely futile. But a Chinese health care team would not inform the family member that it is "surely futile," except in the state of brain death,1 when the mechanical ventilator cannot prolong life. We can say that the Chinese health care team usually views the situation from the standpoint of "quantity"
(how long the patient will live), rather than "quality of life." The question the health care team usually asks family members is "Do we give up treatment or not?" and the answer of family members at first usually is don't give up, whether or not the patient has expressed his or her wish for continued treatment. But how long treatment lasts depends on the cost, whether the cost can be covered by patient's insurance and the economic condition of the family. if the economic condition is not good, the treatment will be stopped after a short period. The cost for one day on a mechanical ventilator is 500 yuan ($60.39) or 15,000 yuan ($1812) a month; the average monthly income in China is 1022.62 yuan ($123.50). 2 Therefore, these expenses can be a large amount for a family.
To properly analyze this question, we need to clarify several cultural differences:
1) In the United States, the ethical issue is whether to withdraw treatment. This is not the issue in China, where the decision to "give up" treatment is, in fact, commonly made for economic reasons.
2) There are differences in the role of family members. In chinese tradition each member of the family is not an isolated person but part of the family; family members usually share a similar mindset with the patient,
which reflects the family members' emotions and the effects of external pressure
from other people who may judge them to be lacking in filial piety if they don't treat the patient. The treatment, even if futile, may last for a time during which the family can adjust psychologically. Otherwise, they will feel
guilty.
3) Another significant difference is in the United States, the health care team is distressed by having to administer futile treatment and violate the patient's wishes. Whereas, in China, it is uncommon for the health care team to raise such questions, for they will not regard the interests between patient and family members as in conflict. Only if the whole family has made a decision will the health care team act according to the family's requirement. When the health care team is distressed, usually it is because they think the patient should be treated and believe there would be a good outcome, but the family members don't agree due to the lack of financial support or other reasons.
Theoretically speaking, the ethical issue in such a case is who can represent the best interest of the patient. The US health care team's distress relates to issues of autonomy, both their autonomy and the patient's. But in China, the health care team and whole family share similar values, that is, for the best interest of the patient. Here the "best interest of the patient" is not seen from the view of the patient, but of the health care team and all the family members.
The autonomy and voice of the patient in China has begun to emerge (but not strongly enough) with more attention paid to the patient; however, decisions are still usually made by the family. The patient is not regarded as a person who has the capacity to make decisions, so the health care team will not be troubled by the patient's wish for termination of treatment or by any violation of patient autonomy. Informed consent is obtained mainly from the family, not the patient, and the family's decision is accepted even if the patient would have chosen differently. _
Xiuyun Yin, PhD
Assistant Professor
Benfu Li, MD
Professor, Chair of Chinese Medical Ethics Association
Yali Cong, PhD
Professor, Associate Director of Medical Ethics Program
peking University Health Science Center - ethics@mail.bjmu.edu.cn
Footnotes
1 The concept of brain death as equivalent to death has not been widely accepted by the average Chinese person.
2 Income is higher in cities like Beijing (1500 yuan or $181.16/month) and Shanghai (2000 yuan or $241.55/month).
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
