The Act on Life-sustaining Treatment Decisions was enacted in 2018, and the present multiphase study was conducted to determine the clinical implementation status based on EMR data, and the level of awareness among health professionals, patients and their families about LST decisions based on survey data. Analyzing the EMR data indicated that 78.4% of the patients had signed a DNAR form, but only 5.6% had a written decision to discontinue LSTs. Health professionals, and patients and their family members were generally aware of the Act, though there were some discrepancies among them about the timing and who should make the decision.
When to discuss the suspension of LSTs
During the legislative process, the Act aimed to improve the end-of-life care environment for patients who chose to discontinue LSTs; hospice palliative care and LST decisions for patients at the end of life were then integrated into the combined law [17]. According to the law, predictions for end-of-life in patients were classified as imminent end-of-life or terminal state of disease in clinical practice, causing confusion [9, 17]. Our study found that 27.6% of the patients who were subject to LSTs or DNAR forms had not completed them until 1–2 days before they died. The median period from admission to DNAR-order signed was 3 days, from DNAR-order signed to death was 2 days, and from the completion of the LST decision form to death was 1 day.
Health professionals, patients, and their families agreed that the best time to discuss discontinuing LSTs was when the patient was critically ill but conscious. According to a previous survey by the National Institute for Life-Sustaining Treatment, participants wanted to be informed of their end-of-life status 6 months before their expected time of death [17]. LST decisions and implementation should, therefore, be discussed much earlier than they are in the present clinical environment. Even in a stable end-stage condition, a patient may rapidly deteriorate with repeated exacerbations and improvements, making it difficult to determine the end-of-life or terminal stage of the disease. Rather than suggest the timing of end-of-life for implementing the LST Act, the preparation of an LST plan should be permitted when explicit decision-making is possible to respect the right of self-determination.
The preparation of various types of forms according to the time period defined by the Act also revealed numerous practical difficulties, such as the use of confusing terminology and procedure complexity [4]. In our study, 78.4% of patients completed only the DNAR form, while 10.2% completed duplicated forms of LSTs and DNAR. To reduce anxiety about legal responsibility in an emergency situation in which the condition of the patient worsens, it is common to fill out a DNAR consent form together while preparing a statement about LST discontinuation. The present study results suggested that the LST plan should be discussed or drafted on the day that the patient is admitted to the hospital, and the implementation form should be drafted while the patient is deteriorating but still conscious.
Awareness gaps in the LST act among health professionals, patients, and families
In the survey on LST awareness conducted before the Act took effect [18], 61% of health professionals and 33% of patients and their families said they were aware of LST decisions. In the present study, 90% of health professionals and more than 70% of patients and their families were aware of the Act, indicating that the level of awareness had improved. However, the perceptions of LSTs differed among the groups. In the clinical setting, health professionals reported that the decision-making about LST suspension was mostly performed by family members (65.5–83.7%), with the patients being involved in far fewer cases (9.6–23.6%). Nevertheless, most patients and family members believed that LST decisions should be made by the patient.
While health professionals know that LST decisions must be made by the patient, they experience moral difficulties and burnout when their decision is not adhered to in the clinical setting [19, 20]. The possibility of recovery was the most important factor when deciding about terminating LSTs for health professionals. The attending physician and relevant specialists can order LST procedures when they deem it medically necessary, even if they prolong the dying process without causing therapeutic benefit. In terms of “meaningless life-sustaining treatment,” there may be differences among groups [21]. Because there are no objective or valid criteria for determining futility, it is extremely difficult to determine which patients are receiving meaningless treatment and assess their terminal stage. Most patients and their families considered patient suffering to be the most important reason for the discontinuation of LSTs. Only 17.4% of patients and 24.1% of their families considered the possibility of recovery as an important reason. At the end of life, patients and their families value a comfortable and painless death (good dying) over-treating the disease, indicating a clear distinction in perceptions. Life-sustaining treatment can be withheld or withdrawn legally based on a medical judgment about the potential for recovery [7]. However, it is not desirable to evaluate solely from the perspective of healthcare professionals since views about patient benefit and futility may vary. Evaluations should consider the values, preferences, priorities, and desires of patients and their families [22].
Decision to discontinue LSTs for persons with no relatives
The Act was passed to protect the dignity and values of patients at the end of their lives. However, some situations are exempt from the law, such as when a person lives alone and does not have any first-degree relatives. Furthermore, despite being considered a legal family under the current law, it is difficult to implement the Act to protect the dignity and respect the autonomy of patients when there is an inappropriate relationship of interest that would represent the intentions of the patient or where a family cannot be reached because of a breakdown in the relationship [17]. Most health professionals (55–65%) suggested that decisions about LST discontinuation for people without relatives should be made by the ethics committee of the medical institution, along with the primary physician. This clearly indicates that those who decide to suspend LSTs in this situation bear a legal and ethical burden. It is recommended that the ethics committee of the medical institution and the primary physician be involved in the decision-making process about LSTs for people without relatives. This requires that the role of ethics committees is established in legislation. Furthermore, guidelines should be developed to standardize the qualifications of ethics committee members.
Raising awareness and publicity for a good dying culture
Advance care planning (ACP) is reflected in the Korean Act on Decisions on Life-Sustaining Treatment, but the term “ACP” is not explicitly defined. The term ACP encompasses a broad concept of hospice and palliative care, respect for autonomy, Advance Directives, and physician orders for LST. However, it is still unfamiliar to health professionals in Korea [23]. Nevertheless, the domestic law protects human dignity and respects patient autonomy in accordance with ACP, and LST is the form of documentation to reflect ACP. Despite efforts to improve detailed operational procedures through legal amendments, there are still fundamental limitations in ensuring a dignified death for patients. As part of the Act, Advance Directives (AD) and Physician Orders for LST are mandatory, but in clinical practice, completing legally mandated documents takes precedence over conducting ideal ACP consultations [23]. In addition, the Act focuses primarily on whether a decision is made, as well as legal requirements for life-sustaining treatment, thus not adequately addressing various dilemmas relating to the decision-making process, end-of-life care, and environment. A complex legal application process and the unique circumstances of a terminal stage often result in decisions being made without sufficient time to accept a dignified death and discuss the options [24]. It is necessary to promote and educate clinical practitioners about ACP, along with supporting legal and institutional mechanisms in Korea [23].
The experience and knowledge of health professionals act as major factors in the process of determining the prognosis of a patient at the end of their life. However, when communication between health professionals and patients is not effective, the timing of discussions about end-of-life care would be delayed, resulting in family members instead of the patient making decisions about LSTs [25]. Previous studies found that more patients made the decision about their end-of-life care, and the timing of decision-making for LSTs was also faster since the Act was implemented. Nevertheless, examining LST decision documents revealed that only about 30% were filled out by the patients themselves, while the remaining 70% were completed by their family members [15, 25, 26]. In the case of a surrogate decision made by a family member, the average time from filling out the form to the death of the patient is less than 2 days due to death being more imminent than when the patient makes the decision [26, 27]. Many critical factors are required to initiate discussions on LST decisions for patients at an early stage, including medical, legal, and ethical knowledge, effective communication, and changes in the awareness of health professionals [25, 27, 28]. The process of making life-sustaining treatment decisions should, therefore, be supplemented by providing enough time for patients and their families to discuss their prior preferences regarding end-of-life care and documenting them as evidence when necessary [24].
The Act requires the intention of the patient to be explicitly confirmed through an LST statement or plan in advance. If the patient is unable to do so, the decision can be made by the agreement of family members including spouse and first-degree descendants [1]. Different entities involved in life-sustaining treatment decisions have varying levels of knowledge and perception, which creates ethical dilemmas for families who must decide whether to withhold or withdraw LST procedures from a cultural perspective. In Asian cultures, including South Korea, where family is rooted in culture and values, discussion of death is taboo and there is a tendency to think that not directly mentioning death is for the sake of patients. This delays discussions about end-of-life, and LST decisions are often made by the family instead of the patient, as it is recognized as a duty that the family must endure [2, 29, 30].
Patients, healthcare professionals, and their families would be affected by cultural factors when making decisions about life-sustaining treatments. Rather than relying solely on medical judgment, decisions to withhold or withdraw life-sustaining treatment are discussed among healthcare providers, patients along with family members, taking a sociocultural perspective into consideration. In the present study, healthcare professionals identified the opinions of the family as the most influential factor in life-sustaining treatment decisions. While patients and families prioritize the patient’s opinion, they also acknowledge the family’s role in the decision-making process. The practice is in line with the dominant family-centered culture, which takes into account the role of family members in caring for patients at the end of life and in bearing the burden of medical costs. For example, withdrawing life-sustaining treatment can facilitate the death of the patient, causing a strong feeling of guilt among the family members in spite of the patient’s critical condition. Family members often make the decision to continue life-sustaining treatments even when those procedures are no longer beneficial to the patients because East Asian cultures place a strong emphasis on filial piety [31]. In this sociocultural context, it would be more challenging for health professionals to discuss the patient’s preferences for end-of-life care [32, 33]. Therefore, it is necessary to develop educational and promotional programs that can be applied to patients and their families that consider cultural differences in order to increase understanding of the LST decision process. The clinical guidelines based on the Act must take into account the sociocultural context in order to serve as an effective model for guaranteeing the rights of patients under legal provisions pertaining to self-determination along with family decision-making regarding medical treatment.
Since this study was conducted in selected general hospitals, there are limitations in generalizing the results to clinical environments of different sizes and different disease severity. There are also limitations in this study to exploring individual or socio-economic factors that may influence the decision process of LST implementation. Further studies should be conducted in diverse clinical environments, and a future prospective cohort study of the LST decision process undertaken by patients and their families is also required.
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