Withdrawing treatment is not only a medical ethical issue but also 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 the fairness principle [14]. 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 [4]. 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; the harm principle provides a more appropriate threshold for state intervention than the best interest standard [15]. 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cases of withdrawing treatment into two categories: children who were unlikely to survive and whose treatment was withdrawn for medical reasons, and children for whom a treatment was indicated but whose guardian(s) chose to abandon treatment.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 of survival, their guardians choose to abandon treatment. When this happens, the medical staff will try their best to persuade the guardian not to give up, or will even help the guardian to solve some difficulties. However, unfortunately, there will always be some unexpected disputes, and medical staff even face the risk of legal liability. Therefore, in general, 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 [16]. Despite extensive experience with critically ill patients and the availability of prognostic scoring systems, prognostication generally remains imprecise in the ICU; physicians cannot say in absolute terms whether a child will die or will experience poor functional outcomes [17], and fear of litigation is a major barrier to informing a child’s guardians properly in Greece [18]. Physicians in China experience similar constraints, which may damage communications and cause resentment. There are official guidelines for withholding and withdrawing therapy for critically ill patients in some countries and regions [1, 19–23].
Researchers 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 versus those that are merely foreseen [24]. There is no legal procedure or official guideline for withdrawing treatment in China. In China, especially in the past decade, tension and deterioration of the doctor–patient relationship have been increasing, there have been many disputes and contradictions between doctors and patients caused by patients’ treatment choices, and some medical staff have even suffered injuries inflicted by 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 trouble caused by medical disputes, doctors have generally adopted defensive medicine: they will use more obscure technical terms to describe a patient’s condition accurately in the communication process with patients, although these technical terms may not be fully understood by patients and their families [25–28]. In evaluations of the prognosis and treatment of severely ill patients, doctors have become more conservative when discussing options with patients or their families, especially with importunate patients or their families [27, 28]. This makes it difficult for this subset of patients to obtain more active treatment opinions from doctors.
This study showed that over the past decade in the PICU, there has been a decrease in the incidence of withdrawing treatment, which was mainly contributed to by a decline in premature withdrawal. This suggests that guardians are more willing to treat their children actively. The increase in the age of children whose treatment was withdrawn also suggests that guardians are more active in treating their children, although this increase may be due to the increase in the age of children admitted to PICU. It has been reported that guardian withholding or withdrawing of 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 [29]. The proportion of PICU patients from whom life-sustaining treatment was withheld or withdrawn was 1.5% in Chile from 2004 to 2014 [30]. The medical withdrawal defined in our study is equivalent to the withdrawal of 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 in recent years was moderate. The group of children undergoing premature withdrawal of treatment, as defined in this study, mainly comprised children who were discharged against medical advice. Therefore, we speculate that the rate of self-discharge from PICU in our hospital in 2015–2017 was close to that reported for a tertiary pediatric hospital in Australia [11].
Decisions on end-of-life care for neonates shifted from active resuscitation to non-active resuscitation in Korea between 2001 and 2015 [31]. In contrast, the proportion of cases of non-active resuscitation for critically ill children in China is declining. In our opinion, there are several possible reasons for the change in attitude among guardians of critically ill children towards withdrawing treatment, including economic changes, improvements in medical technology, higher education of parents, and a reduction in discrimination against girls. The economic status of children’s families has improved and health insurance covers more residents over the past decade [9]; therefore, families are more capable of paying medical expenses. It is interesting to note that a short economic crisis occurred in China between 2007 and 2008, and the incidence of withdrawing treatment, especially premature withdrawal, reached a peak in 2007. Indeed, economic factors are key in deciding whether or not to abandon treatment [32]. Other studies have also shown that per capita GDP has a high negative correlation with infant mortality in China [33]. The proportion of people with higher education doubled between 2006 and 2017 in China [34], and it has been reported that a low level of education for the father was associated with discharge against medical advice in Iran [35].
In this study, more than half of guardians stated that their reason for withdrawing treatment was that the child’s condition was too severe. Only a few guardians ascribed withdrawing treatment to economic reasons, which is inconsistent with another study in which economic reasons accounted for half of the total [8, 36]. 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 [36], and one in five guardians cited “condition has been improved” as a reason for withdrawing treatment in this study; most of these were guardians of children who experienced premature withdrawal. We suggest that this was not representative of the true reason for withdrawing treatment, and that guardians may have moderated their statements to alleviate their guilt. Under the influence of Chinese Confucian culture, guardians are used to expressing compromise. When a guardian is asked to report the reasons for withdrawal of treatment, he/she tends to state the apparent objective phenomenon instead of the real reason. We believe that the main reasons for premature withdrawal may be related to economic status and poor and uncertain prognosis; research data from Changsha in China also showed that these are the main reasons [8]. Although China has established a basic medical insurance system covering almost all residents in the past decade [9], insurance coverage of children’s serious illnesses is not perfect, the proportion and amount of out-of-pocket expenses for medical care for serious illnesses are still high, and continuing treatment will impose a heavy economic burden. We observed that premature withdrawal was rare for children raised in social welfare institutes, in large part because the treatment expenses for such children are guaranteed by the government. When the prognosis with a treatment is poor or uncertain, especially for those whose treatment costs a lot of money, and may not ensure survival, guardians who are short of money are more likely to give up the treatment. During our clinical PICU experience, although sometimes doctors definitely tell the guardian that the child can survive after treatment, some guardians are afraid that serious sequelae will affect the quality of life of the family and they decide to give up. This tendency of guardians can also be seen at social welfare institutes in China, where most of the children have been 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 home town, in the main hall in the presence of ancestor tablets, is still cherished [3]. This may be one of the factors affecting decisions by guardians. The low proportion of deaths in hospital for children whose treatment was withdrawn prematurely and the fact that some children experiencing medical withdrawal survived when discharged from hospital may be influenced by the death culture in China. The mortality rate among children in our study following withdrawal of life-sustaining treatment was significantly lower than that in a PICU in Australia [37]. This is because some children in our study retained limited maintenance measures (e.g., Ambu) after most of their life-sustaining treatments had been removed to allow them to leave the hospital immediately to let the death occur at home or in their home town. Similar practices can be observed elsewhere: home deaths for critically ill babies/children do occur in the UK, albeit infrequently [38].
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 regions of China. The impact of culture, healthcare insurance status, religion, and education on the withdrawal of treatment has not been studied.