Attitudes on Life and Medical Care Survey
Good Death or Poor Life, What Do You Choose
A CommonWealth national survey on attitudes toward end-of-life medical treatment lays bare the struggle between choosing a good way to die for oneself on the one hand and being unable to let go of family members on the other.
Good Death or Poor Life, What Do You ChooseBy Whitney Huang
From CommonWealth Magazine (vol. 560 )
The performance known as life has to come to an end eventually. How do Taiwanese people approach the final stage of life?
CommonWealth Magazine surveyed 1866 members of the public chosen randomly and interviewed over the telephone about their views toward life and medical care.
The findings showed that, in contrast to the traditionally held view that "a rough life is preferable to a good death," modern people care more about living with dignity, preferring a life marked by quality rather than duration.
Among those surveyed, 73 percent agreed with the statement, "Sometimes the situation calls for letting go, allowing nature to take its course and the patient to die"; in contrast, only around 20 percent believe that, "No matter what, doctors should do everything possible to save a patient's life." (Table 1)
Especially given the see-saw battle between traditional filial piety and approaches to life and death, the majority of people have made the major transition beyond the tradition of blind devotion to parents and elders.
Filial devotion more than just "doing everything" at the end
Asked if some day when one's parents require emergency care due to illness or an accident, no matter what the chances are for saving their lives, a full 70 percent of survey respondents disagreed with the statement, "Not saving a life is the same as being a bad son or daughter." (Table 2)
"Modern people no longer believe the notion that only 'fighting to the end' is filial," asserts National Taiwan University Hospital (NTUH) Jinshan Branch Superintendent Huang Sheng-Jean, a strong advocate of hospice palliative care.
However, Huang notes bluntly that this sort of outcome still does not dovetail with the "nearly full-on battles" that transpire in hospitals every day.
Offering analysis, he says that the considerable contrast presented can be attributed to the public not being mentally prepared, and not anticipating the emergency care that their parents or elders could require. Consequently, when they do encounter such situations they are caught off guard, and automatically fall into a mode where they figure they should "do everything possible first."
Or perhaps there is a gap in perception between how the hospital and patient regard "remaining hope." Many doctors still subscribe to the approach of "doing everything possible," Huang says, and he has observed "a divide among medical personnel in their concept of life's final stage."
Noting that 18 percent of respondents still hold to the notion that "not saving a life is the same as being a bad son or daughter," Dr. Sun Hsiao-chih, professor of philosophy and director of the Life Education Center at National Taiwan University, says this indicates that "there is still work to be done to teach people about good endings."
Interestingly, under three hypothetical medical scenarios, the public shows that they would choose a "good death" for themselves, while still preferring that family members cling to life no matter how poor the quality, revealing the struggle between reason and emotion. (Table 3)
Caught up in family ties, or afraid of criticism?
When asked, "If you were to fall ill, and the outcome of treatment" were the first proposed scenario, namely "partially conscious, but reliant on machines to sustain life (such as a respirator)," 81 percent of those polled hope the doctors would halt treatment and let nature take its course so death could occur.
Facing the second scenario, an "unconscious, vegetative state," 92 percent of those polled would like to cease treatment and avert such a situation from taking place.
Even in the case of the somewhat less severe third scenario, "completely bedridden, reliant on family or others for 24-hour care," 77 percent of respondents would like to halt treatment and let nature take its course to allow life to come to an end.
However, if the same situations were to happen to family members, reason takes a 20- to 30-percent hit.
If a family member were to be partially conscious and require a machine to sustain life, 57 percent of those polled would hope to cease treatment and allow the family member die.
Even if the family member were to become a vegetable, only 76 percent of those surveyed would want to terminate treatment. And if a family member were to become totally bedridden, only 52 percent of those polled would want to halt treatment and let that loved one pass away.
"It doesn't make complete rational sense, and does not look at things from the patient's perspective. Instead, people's filial behavior is predicated on being caught up in notions of family devotion and fear of being called an ungrateful or bad child," Sun Hsiao-Chih pointedly says.
Females and "sandwich" generation able to let go
When positive and negative attitudes are combined and further cross-analysis undertaken, it becomes evident that females and those aged between 40 and 59, "sandwiched" between parents above and children below, have generally more open and accepting attitudes toward life and are more willing to let go.
For instance, regarding the question, "Is not saving a life being a bad son or daughter?", 65 percent of males did not agree, whilst 76 percent of females disagreed.
This could be related to the predominance of females that take up the responsibility for caring for family members, or those having witnessed the sacrifices and dedication made by their own mothers or sisters to care for someone gravely ill. As a consequence, they are less inclined to accept futile medical care.
In contrast, males are not as often responsible for caring for others, yet are also more likely to be fingered by relatives as shirking family obligations, making them more conservative.
Truly, there is a need for both life education and end-of-life education throughout society.
A full 37 percent of the population has still never given thought (including those that have "never considered" or "not considered much") as to whether they would accept treatment or emergency aid in the event of a serious illness. (Table 4)
Only one percent have signed consent forms
Further, even though 74 percent of the respondents are willing to discuss, while family members are still healthy, whether or not they wish to receive emergency care if one day they are facing the end, due to illness or an accident; meanwhile around 58 percent of those surveyed are aware that they can sign a do not resuscitate (DNR) consent form in advance; whilst 65 percent even indicated willingness to sign. (Tables 5, 6, 7)
Yet only around one percent of all Taiwanese have actually gone ahead and signed such a form, which is then indicated on their National Health Insurance integrated chip card.
This shows that most people have thought about it, but not taken any steps to prepare; even if they have prepared, they have no plan; and if they have a plan, they have not taken action, always missing that one last step.
"You have to take action!" exhorts Huang Sheng-Jean.
How would you like to see the curtain fall on your last act in life?
Translated from the Chinese by David Toman.