Withdrawing treatment is not only a medical ethical issue, but a social issue. There has been considerable debate about how to implement withdrawal of treatment. Some scholars in China believe that withdrawal of treatment in ICUs should follow the principle of benefit and respect the patient's willingness and fairness principle . People also believe that decisions on withholding/withdrawing treatment need to take account of the likely success, benefits, burdens and risks of treatment, as well as the patient’s presumed wishes . For children, however, withdrawing treatment is decided by their guardian(s), as children do not have full civil liability, and guardians’ decisions are not always in the best interest of the child. Therefore, in this study we classified cases of withdrawing treatment into two categories: children who were unlikely to survive and whose treatment was withdrawn and children for whom a treatment was indicated but whose guardian(s) chose to abandon treatment.
For the treatment of children with severe illness in China, the general practice of physicians is to have a conversation with the child’s guardian, introduce the child's condition to the guardian, provide medical advice, including whether or not it is worth administering a treatment, and discuss treatment methods and prognosis, after which the guardians are asked to make a decision. In many cases, even if a child has a chance to survive, their guardians choose to abandon treatment. When patients cannot articulate their wishes in American hospitals, it has been reported that ICU physicians and nurses usually leave final decisions in the hands of the families . In the USA, physicians won’t say in absolute terms whether a child will die or whether they will experience poor functional outcomes , and fear of litigation is a major barrier to properly informing a child's guardians in Greece . Physicians in China experience similar restraints. There are some official guidelines for withholding and withdrawing therapy for critically ill patients in some countries and regions [1, 14–17]. There’s no legal procedure and official guidelines for withdrawing treatment in China. In China, especially in the past decade, tension and deterioration of the doctor-patient relationship was increasing, there have been many disputes and contradictions between doctors and patients caused by patients' treatment choice, and even some medical staffs have suffered injuries from radical patients or patients' families. For instance, on October 3, 2016, a pediatrician in Shandong Province was killed by the father of a girl he had treated, and on December 24, 2019, a Beijing emergency physician was killed by a family member of a 95 year old patient with advanced cancer. In such a situation, in order to avoid the troubles caused by medical disputes, doctors will use more obscure technical terms to accurately describe patients' conditions in the process of communication between doctors and patients, although these technical terms may not be fully understood by patients and their families. For the prognosis evaluation and treatment of severe patients, doctors will become more conservative when discussing with patients or their families, especially in importunate patients or their families. This makes it difficult for this part of patients to obtain more active treatment opinions from doctors.
From the results presented in this study— over the past decade in the PICU, there has been a decrease in incidence of withdrawing treatment and an increase in the age of children whose treatment was withdrawn—show that guardians are more willing to actively treat their children. It has been reported that guardians withholding or withdrawing intensive care for extremely preterm infants at the limits of viability has become more acceptable than it was 20 years ago in Germany, Switzerland, and Austria . The incidence of withdrawing treatment in recent years in this study is similar to the incidence of withdrawing treatment of neonatal intensive care in Korea . The frequency of PICU patients who undergo the process of withholding or withdrawing life-sustaining treatment was 1.5% in Chile from 2004 to 2014 . Decisions on end-of-life care in neonates shifted from active resuscitation to non-active resuscitation in Korea between 2001 and 2015 . In contrast, the proportion of non-active resuscitation for critically ill children in China is declining. There are several possible reasons for the change in the attitude of the guardians of critically ill children toward withdrawing treatment. The economic status of children's families has improved over the past decade and families are, therefore, more capable of paying medical expenses. It is interesting to note that a short economic crisis broke out in China between 2007 and 2008, and the incidence of withdrawing treatment especially premature withdrawing reached a peak in 2007. Indeed, economic factors are key in deciding whether or not to abandon treatment . Other studies have also shown that per capita GDP has a high negative correlation with infant mortality in China .
In this study, more than one-half of the guardians stated that their reason for withdrawing treatment was that the child's condition was too severe. Only a few of the guardians ascribed withdrawing treatment to economic reasons, which is inconsistent with another study in which economic reasons accounted for one-half of the total . This difference may be due to variations in the study method. Our medical documents only recorded guardians’ self-reported reasons for treatment withdrawal, which may have introduced a bias. Children at the time of withdrawal of treatment had lower disease severity than at admission , and one in five guardians cited “condition has been improved” as a reason for withdrawing in this study, of most these guardians were guardians of children who experienced premature withdrawing. We suggest that this was not representative of the true reason for withdrawing treatment, guardians may have moderated their statements to alleviate their guilt. Under the influence of Chinese Confucian culture, guardians are used to the expression of compromise. We believe that the main reasons for premature abandonment may be related to economic status and uncertainty of prognosis. Children are often only covered by limited health insurance, and continuing treatment will incur a heavy economic burden. We observed another phenomenon that premature abandonment was rare in children raised in social welfare institutes, in large part because the treatment expenses of such children are ensured by the government.
Although death practices are changing in China, the idea of a death occurring at home or in the person’s hometown, in the main hall in the presence of ancestor tablets is still cherished . This may be one of the factors affecting the guardian’s decision. The low proportion of deaths in hospital of children whose treatment was withdrawn prematurely and the fact that some children experiencing medical withdrawing survived when discharged from hospital may be influenced by the death culture in China. Similar practices can be observed elsewhere: home deaths for critically ill babies/children does occur in the UK, although infrequently . When interpreting the results from this study, some limitations should be considered. This was a single center retrospective study. The region where the hospital is located is undergoing rapid urbanization, and is an economically developed region in China. The results of this study are not representative of all of China. The impact of culture, healthcare insurance status, religion and education on the withdrawal of treatment has not been studied.