While a patient usually discusses with doctors various treatment options in addition to LST at the EOL during advance care planning in Western countries, determining LST in the Republic of Korea is possible only if he or she is in the EOL process according to the LST Decisions Act. Therefore, LST discussions are limited to the LST specified in the Act. We found that doctors experience a number of difficulties during LST discussions even after enforcement of the Act. The four major reasons causing the difficulties were the late timing of LST discussions, family-related barriers, lack of communication skills, and limitations of the Act that are not properly applied in clinical practice.
Discussions regarding LST with respect to the patient’s self-determination right in the context of the Act is important. However, the present study results showed that many doctors had difficulty in discussing decisions regarding LST with patients and initiated LST discussions with the family. Due to the patient’s poor status to communicate, which may result from the late timing of initiating LST discussions, the doctors found the situation difficult. The late timing of having LST discussions reflects the Korean culture of not having honest communications about death (15). Furthermore, in clinical practice, doctors are used to discussing LST with family members when the patient is near death (16), thus, this practice apparently remains after the Act. LST discussions should be performed when the patient can understand and communicate properly (17). In a previous study (18), 78.3% of Koreans thought the most appropriate person to make decisions regarding EOL care plans was themself. Initiating LST discussions can be recommended at the time of diagnosis in some patients with advanced cancer (19) and should be initiated at least in terminal diagnosis cases. However, when the best time for LST discussions for patients with non-cancerous diseases is remains unclear (20, 21). In the present study, doctors had a positive attitude for initiating LST discussions when the patient visits the emergency room, has an unplanned admission, or is planning for a procedure or operation with risk of death. We suggest these strategies may help establish an early time for LST discussion.
In the present study, family was a considerable barrier in LST discussions with patients. In previous studies (22, 23), doctors regarded the family’s reluctance to include the patient in discussion as a significant factor interfering with LST discussions. Patients are frequently protected by family members from being shocked or discouraged by bad news and the family may worry whether the patients may lose hope and decline necessary treatment (24). However, family’s paternalistic decisions may not consider the patient’s values or result in reasonable decisions respecting the self-determination right of the patient (25). In addition, family members could suffer from decisional burden and experience depression and grief (26, 27) due to surrogate decision making. The present study results showed that building an environment in which patients and family have open discussions and encouraging LST discussions with patients and family can be strategies to reduce family-related barriers.
The most common difficulty addressed by doctors during LST discussions was communication with patients and family. Lack of communication training has been reported as a barrier to prognostic disclosure in previous studies (28–30). Although the Act designates the doctor in charge as the person who should discuss decision making regarding LST, minimal guidance is provided for doctors about how to communicate with patients and family in this regard. Therefore, doctors may feel unhelpful, abandoned, and experience ethical conflicts in clinical practice (31, 32). Based on the present study results, education regarding communication skills for having LST discussions can help doctors overcome the difficulties encountered.
According to the Act, LST implementation should precede assessment of the EOL process (12). However, prognostic uncertainty due to the underlying disease fundamentally exists, causing difficulty for doctors to correctly assess the EOL process (33). Therefore, uncertainty in the medical assessment may complicate LST discussions and influence decision making (34). The fact that LST decision can only be determined at the EOL aggravates the difficulty of predicting medical prognosis and narrows the options for LST decision, making the decision making more complicated. Although the Act does not state any process to alleviate the uncertainty, further guidance and research to support medical assessment of the EOL process are needed.
Several limitations of the Act were observed in the present study which hinder proper application in clinical practice, especially during the implementation process. After the amendment of the Act, patients or families only document the expansive intention for LST (e.g., the patient does not want LST when in a state of imminent death), and doctors are required to determine which medical procedure is regarded as medically inappropriate LST based on the best interest of the patient in the EOL process. However, the survey from case 1 shows if the patient did not express any wishes or thoughts regarding LST, doctors tended to follow the family’s wishes. Family members are designated as surrogate decision maker in the Act, but this does not mean that the family can always play a role as an ethically appropriate surrogate (35). Although the Act recognizes the patient’s dignity and self-determination at the EOL and stipulates the purpose of the Act is to assure the best interests of the patient, guidelines regarding what the best interest of the patient is or how to address this issue is not provided. Thus, without knowing the patient’s wishes, the best interest of the patient appears to depend on the family’s decision. In case 2, doctors would make different decisions without the documented intention of the patient, even when they already know the verbal do-not-resuscitate status. In this gray area, one third of doctors prioritize the family’s intentions. In these circumstances, which the Act does not address, decision making should be determined in a manner that respects the best interest of the patient, and institutional support for the doctor’s decision is needed.
The present study had several limitations. First, the study was from a single tertiary hospital and included a small number of respondents, thus, the difficulties doctors experience during LST discussions after the Act cannot be generalized. Further studies with a larger sample size should be conducted in various institutional settings. Second, the study population included doctors that practice medicine in specific fields where they frequently experience LST discussions, which may cause selection bias. Third, the recall bias may occur in asking when the doctors had LST discussion, how frequently they had LST discussions, and whether there were disagreements with family or between physicians.
Despite these limitations, the results showed most doctors experienced serious difficulties during LST discussions. To alleviate these difficulties, further institutional support is needed to improve the LST discussion between doctors, patients, and family.