We investigated the POLST completion rate in patients with metastatic or recurrent cancer who were undergoing active anti-cancer therapy. When it was suggested by their physicians, 71.3% of patients agreed to prepare POLST, and most of them wanted to suspend CPR, artificial respiration, and hemodialysis. The POLST-completion group showed a higher proportion of highly educated patients and a better understanding of POLST. The participants answered that, typically, they would set up the EOL care plan of their own will. Their reasons for agreeing to or declining POLST were diverse.
More patients responded positively to POLST than expected by the researchers. To our knowledge, this is the first study that involved physicians’ active recommendation of POLST. On the basis of the high rate of POLST completion, we can infer that patients with metastatic or recurrent cancer were ready to begin a conversation about EOL, even during active treatment. However, the high acceptance rate could have been due to the “initial effect” of the policy. As this is the very beginning of POLST legislation in South Korea, the number of patients who had experienced multiple lines of chemotherapy and had considered their EOL in depth would have accumulated over time.
In our study, 67.1% of who completed POLST wanted to maintain chemotherapy in their EOL, which could be a result of misunderstanding. The Korean POLST is a single-step decision for patients. Nevertheless, in implementing the document, doctors’ decision involves two steps: initial time of POLST documentation and near EOL. Therefore, patients could be confused about the timing of POLST application. In our additional follow-up study, there were 35 of the total patients who wanted to maintain chemotherapy in their EOL were available to be asked again. After we had explained the situation thoroughly and asked whether they would still stand by their formal decision, 31 patients (88.6%) revised to not receiving chemotherapy. Based on this phenomenon, we suggest to revise Korean POLST to two-step approach.
Previous investigations from East Asian countries have shown that the decision to discontinue life-sustaining treatment is dominated by patients’ caregivers [4,5,6,7]. However, in our survey, most patients reported that they had made or would make their own decisions about EOL care. This phenomenon might have been owing to the study protocol—we did not give any prior notice about POLST and required participants to make their decision on the same day. Even though the patients had no time to discuss it with their families, more than half willingly completed POLST documentation on the same day.
It was their spouses that patients most often chose to have the discussion with, and doctors were preferred over offspring or siblings. This is consistent with the results of previous studies [8,9,10]. Regarding the reason for preparing POLST, a significant proportion of the participants (34.7%) answered that they did so at their doctor’s recommendation. Further, the wish to be treated by a familiar doctor was one of the major reasons for not using a hospice palliative center (37.8%). Therefore, the health care provider as well as familial support is important in patients’ critical decision-making process and EOL care.
Debate over the self-determination of EOL care has been actively conducted in the West, and POLST and AD originated from the concept of the “living will” that was first proposed by the Euthanasia Society of America in 1967 . With this, lawyers and medical staff in the United States tried to provide legal grounds for living wills at the state level. However, the controversy over the “right to die” continued, and social discussion around EOL care expanded as several historical events occurred [12, 13]. In contrast to historical cases in the West, important cases in South Korea involved older subjects . After several events and legal decisions, South Koreans started reviewing the social consensus on the following question: “What is ‘dying with dignity’?”
While the cases in the West mainly centered around the issue of “self-determination rights” of patients who entered a vegetative state at a younger age, the issues of the burden of support and financial difficulties of families have aroused more social sympathy in South Korea . This is owing to differences in social values and cultural environment. Based on Confucianism, people in East Asian countries such as South Korea feel a high obligation to care for the elderly and provide familial support . In many aspects, the care burden of the elderly has been re-established as a problem to be solved by the household, not by social security services . The pressure and stress created by the issues of who should support and who should be supported are considerably high in South Korea [17, 18]. POLST and euthanasia can be a very dangerous scheme in this sociocultural environment. In some situations, someone may suspend his or her life-sustaining treatment to lessen the burden of the family. This kind of internal or external conflict can seriously undermine the original intent of POLST. In our study, 12.5% of the participants who agreed to complete POLST documentation said they decided to do so mainly because they wanted to ease the economic burden of their families. There was no significant difference when we compared the answers of the groups classified by monthly income, but further clarification is needed.
There has been some argument regarding when to prepare POLST in end-stage patients [19, 20]. In our study, a large percentage of participants answered that it would be desirable to prepare ACP when they were still young and healthy. Caregivers who accompanied the patients during the survey also expressed agreement with the withdrawal of futile life-sustaining treatment and asked whether they could fill out the document too. Although POLST in South Korea is restricted to end-stage patients, it is noteworthy that people are now more aware of the need to prepare for “dying well.”
The more patients understood life-sustaining treatment or POLST, the higher the completion rate was. A total of 66.7% of the completion group answered that they had more than a fair understanding of the system. Most of them got their information from traditional media such as the television or newspapers. A few weeks after the legislation, the South Korean POLST system began being promoted online. However, this is not the most effective way for older patients and those whose general condition is poor to access the relevant information. Physicians were the major source of information about EOL care to patients with cancer; thus, in-hospital education or counseling from medical staff could provide better assistance.
Our study had several limitations. First, the sample size was too small to achieve statistically significant p-values in many aspects. We also could not secure the diversity of cancer type because of the hospital system, making it difficult to represent the complete situation. Second, because different doctors recommended POLST in their own ways, the protocol could not be fully standardized. There was bias due to physicians’ diverse experience and rapport with patients. We assume that all study participants were well aware of the policy, but there might be discordance between doctors regarding eligibility criteria, length of instruction, and understanding of the process. The extraordinarily high rate of patients continuing with chemotherapy (67.1%) might be a result of misunderstanding. Third, because we did not collect detailed data about patients’ income and medical expense sources, we could not fully investigate the specific role of financial problems in POLST decision-making. The information on family members who were present at the completion day is also lacking, making it difficult to account for familial factors.
From social consensus to medical practice, there are still many issues that need to be addressed. Improving structural support for terminally ill patients, developing hospital-based assistance services, and providing education about the system would help yield positive outcomes. This study is meaningful in that it gathered opinions on the medical care of patients from the patients themselves, and not from their caregivers. We hope that the findings of this and subsequent studies can help people understand the POLST system and patients’ real attitudes toward EOL.