Change in perception of the quality of death in the intensive care unit by healthcare workers associated with the implementation of the “well-dying law”

The importance of dying with dignity in intensive care units (ICUs) is emphasized, and early discussion with patients and families about the goals of care is a key factor for improving the quality of end-of-life care [1‐3]. However, due to the Confucian social order and “Boramae Hospital incident” in 1997 [4], discussion on dying with dignity was not actively conducted in South Korea. In the Boramae Hospital incident, the Supreme Court of Korea convicted doctors for aiding and abetting a homicide because the doctors ordered the discharge of a patient in a vegetative state after brain surgery in deference to the insistent requests of the patient's wife. After this case judgment, South Korean physicians were extremely cautious about requests of the patient's family to discontinue life-sustaining treatment (LST), and discussion on death with dignity was shirked for subsequent years.

Social demand for “dying with dignity” was intensified due to the “Grandma Kim” incident in 2009. Grandma Kim was in a persistent vegetative state from brain damage due to a massive hemorrhage during a lung biopsy, and her family wanted to stop ventilator-assisted breathing. In 2009, the Supreme Court allowed ventilatory support withdrawal after much social discussion and debate, setting a precedent in South Korea by acknowledging the right to die with dignity. Since then, social interest in dying with dignity continued. The South Korean government finally enacted the Hospice, Palliative Care and Life-sustaining Treatment Decision-making Act, also known as the “well-dying law,” in February 2016 and fully implemented this Act in February 2018 [5]. This law enables patients to refuse cardiopulmonary resuscitation (CPR), ventilator support, hemodialysis, or anticancer treatment following a diagnosis of being near death from terminal illness by their primary and secondary specialist doctors. This law presupposes that the patient's self-determination should be prioritized. If the patient's will cannot be estimated, LST can be discontinued based on the agreement of the whole family and confirmation of two doctors or a decision by a legitimate family substitute and two doctors.

Therefore, implementing the well-dying law is expected to reduce non-beneficial LST for incapacitated patients with advanced illnesses. This study aimed to compare the quality of death in the ICU before and after implementing the law using the Quality of Dying and Death (QODD) questionnaire among ICU staff responsible for deceased patients and investigate the factors associated with better quality of death in the ICU.

This study is the first to identify the effect of the well-dying law on the quality of death in ICUs. As expected, there was a significant improvement in the quality of dying (QODD score) after the well-dying law implementation. The well-dying law had a positive independent association with the increased QODD score in the multiple regression analysis, ITS analysis, and multilevel adjustment analysis. In addition, the concordance rate of the medical staff's opinion of the best action and actual action for the LST withdrawal was significantly increased after the implementation of the law.

As mentioned in the results section, the time between receiving a DNR and death increased from 2.5 to 5 days following the implementation of the law. This implies that the “well-dying” law provides an extended opportunity to communicate about death and withdrawal of LST between medical staff and the caregiver/patient much earlier than the point of death. Moreover, the concordance rate of the staff's opinion of the best action and actual action for LST withdrawal showed a 20% increase after the implementation of the law. These findings reflect that the ethical and legal issues around LST withdrawal have been improved by the well-dying law, enabling physicians to act according to their clinical judgment to limit futile LST, thereby leading to an increased concordance between the opinion and the action of LST withdrawal.

The scores of all individual questionnaire items increased after the law. However, both doctors and nurses gave less than three-point scores for the following seven items on the QODD regardless of the enactment of the law: “Q2, 3, 7, 12, 13, 14, and 15” questions about patient autonomy and emotional support at the point of death. The patient's autonomy on end-of-life care is exercised through communication, which may be impossible if the patient lacks the capability. The communication for incapable patients is conveyed through an advanced directive [10] written by patients when they were mentally and physically healthy and could sufficiently consider and decide the right choice of treatment or surrogate decision-making by family, representing autonomy. Therefore, if there is sufficient information for the patient and family, for example, on when to write, what to decide, and others, (i.e., if this information are provided), the patient's autonomy over the end of life could be enhanced. The implementation of extended visitation or an unrestricted visiting policy can alleviate the psychological distress of patients and improve the quality of death [11, 12]. Visiting the ICU is strictly limited to once or twice a day due to concern about distractions from visitors [13, 14] in many countries. Only when the patient is on the verge of death can the caregiver visit the patient more than twice a day in most South Korean ICUs. However, Netzer et al. demonstrated that the extended family visiting hours in the ICU reduced the patient's delirium and improved family satisfaction without affecting the infection rate [15].

A major obstacle that needs to be overcome to improve the quality of death is the disagreement among family members. The problem emerges from the phrase “agreement of the whole family” in the law. If a member of the family is unreachable or missing, this violates the essentials of the legal agreement of the whole family. In fact, the number of cases where LST withdrawal could not be performed due to disagreement among families of patients for whom withdrawal was considered increased by more than 20%, from 33.3% to 58.8%, after the enactment of the law (Table 3). Thus, the medical community has emphasized the need to modify the well-dying law to narrow the scope of family members (from “whole family” to “two family members”). As a result, on December 11, 2018, the Well-Dying Act was amended in this regard, and the revised version became effective on March 28, 2019 [16]. This study was conducted between January 2019 and May 2020; therefore, most of the data extracted for this study should have reflected the implementation of this law, this was not the case. This is because information on the revised law content was not widely disseminated in the clinical field during the study period.

Despite the increase after the law was implemented, the QODD score in South Korea is far below that of Western countries, considering the QODD score of 60–70 in the United States or the Netherlands (supplementary Fig. S2) [17‐21]. This may due to the cultural differences in end-of-life communication. In the Korean Confucian culture, direct discussion about dying is disrespectful, and communication on the issue has long been discouraged. Ko and Lee found that non-Hispanic white patients were more likely to receive discussions about end-of-life care than South Korean Americans [22]. South Koreans tend to avoid conveying any negative information about poor prognosis to their parents and defer open discussion until it is inevitably discussed in proximity to death in many cases [23]. However, the results of our study are not representative of all Confucian countries. There are significant intra-region differences in the ICU physicians’ practices of LST, the roles of families, their understanding of legal risks, and financial considerations in the same Confucian Asian countries [24, 25].

This study has some limitations. First, the QODD was only assessed by nurses and physicians and did not include the family perspective. Second, the before–after design limits the ability to make causal inference as other temporal changes may have confounded the results. However, we performed an ITS analysis, which suggested that the effect of the temporal changes was minimal. Third, the participants were possibly biased, as they were from medical ICUs. Therefore, our results may not be generalizable to other specialized ICUs (e.g., surgical or neurological). However, considering the severity of patients' conditions and number of deaths in the medical ICU compared with those in other ICUs, the frequency of discussion about end-of-life care, LST, and withdrawal must be most frequent in the medical ICU, making the staff suitable for this study. Fourth, the same medical staff answered the QODD questions multiple times due to the limited staff at each hospital. Therefore, multiple comparisons may have resulted in some spurious associations. However, we tried to minimize duplicated participation by limiting response frequencies to five per physician and three per nurse in a month. In addition, multilevel approach using a linear mixed model showed same result. Fifth, we could not assess if the actual use of ICU resources decreased in non-beneficial LST for incapacitated patients with advanced illnesses. Our study was conducted to analyze the quality of dying in the ICU, therefore, we enrolled patients who were already admitted to the ICU and died in the ICU. Patients who had decided not to receive meaningless LST would not have been admitted to the ICU at all. Further studies including the overall in-hospital mortality are needed to analyze whether the use of meaningless LST has decreased.

In conclusion, our findings suggest that the implementation of the well-dying law positively affected the quality of death in the ICU and improved the ethical and legal issues associated with LST withdrawal, thereby enabling physicians to act according to their clinical judgment and limited futile LST. Nonetheless, the quality of death in South Korean ICUs appears relatively low, with much scope for improvement in the quality of care, especially with regard to patient autonomy near death. The well-dying law in South Korea should be revised to improve effectiveness in accordance with clinical opinions.