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 . Ethicists believe that the best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts; harm principle provides a more appropriate threshold for state intervention than the best interest standard . For children, however, withdrawing treatment is decided by their guardian(s) in China, as children do not have full legal capacity, 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cases of withdrawing treatment into two categories: children who were unlikely to survive and whose treatment was withdrawn and children for whom a treatment was indicated but whose guardian(s) chose to abandon treatment.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, 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 this happens, although the medical staffs will try their best to persuade the guardian do not give up, or even help the guardian to solve some difficulties. But unfortunately, there will always be some unexpected disputes, and medical staffs even face the risk of legal liability. Therefore, in general, the medical staff have to comply with the requirements of the guardian. 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 . Despite extensive experience with critically ill patients and the availability of prognostic scoring systems, prognostication generally remains imprecise in the ICU, 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, which may damage communications and cause resentment. There are some official guidelines for withholding and withdrawing therapy for critically ill patients in some countries and regions [1,19–23]. Scholars believe that several key ethical concepts play a foundational role in guiding end-of-life care, including the distinctions between withholding and withdrawing treatments, between actions of killing and allowing to die, and between consequences that are intended vs. those that are merely foreseen . 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 subset 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, which was mainly contributed by the decline premature withdrawing—suggests that guardians are more willing to actively treat their children. The increase in the age of children whose treatment was withdrawn also helps to suggest that guardians are more active in treating their children; although this increase may be due to the increase in the age of total children admitted to PICU. 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 frequency of PICU patients who undergo the process of withholding or withdrawing life-sustaining treatment was 1.5% in Chile from 2004 to 2014 . The medical withdrawing defined in our study is equivalent to the withdrawing life-sustaining treatment mentioned in the above literature. Compared with other countries and regions, the incidence of withdrawing life-sustaining treatment shown in our study recent years was moderate. The premature withdrawing children defined in this study were mainly composed of children who discharge against medical advice (also known as self-discharge). Therefore, we speculate that the rate of self-discharge of PICU in our hospital in 2015–2017 was close to that reported in Australian PICU . 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, including economic changes, improvement of medical technology, higher education of parents, reduction of discrimination against girls, etc. The economic status of children's families has improved and health insurance covers more residents over the past decade , and therefore, families are 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 . The proportion of people with higher education doubled between 2006 and 2017 in china , it was reported that low father’s level of education was associated with discharge against medical advice in Iran .
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 [8,32]. 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. When the guardian was asked to report the reasons for abandonment, he / she shall state the apparent objective phenomenon instead of the real reason. We believe that the main reasons for premature abandonment may be related to economic status, poor and uncertainty of prognosis, research data from Changsha of China also showed that these reasons are the main reasons . Although China has established a basic medical insurance system covering almost all residents in the past decade , the coverage of children's serious illness insurance is not perfect, proportion and amount of out of pocket medical care for serious illness are still high,, 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. When the prognosis of the treatment is poor or uncertain, especially for those whose treatment cost a lot of money but still may be not survival, guardians that short of money are more likely to give up the treatment. Although sometimes doctors definitely tell the guardian that the child can survive after treatment, some guardians are afraid that the serious sequelae of the child will affect the quality of life of the family and then decide to give up. This choice tendency of guardians can also be seen in children at social welfare institutes in China, most of the children are abandoned by their parents because of congenital diseases.
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. The mortality rate of children in our study following withdrawal of life-sustaining was significantly lower than that in PICU of Australia . This is because some children in our study retained limited maintenance measures (e.g. AMBU) after most of their life-sustaining were removed, and then leave the hospital immediately to let the death happen at home / hometown. 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.