End-of-Life Decision Making in Patients with Advanced Dementia: The Perspectives of the Korean General Population and Clinicians
Article information
Abstract
Objective
Korea’s transition into a super-aged society brings to the forefront the escalating dementia prevalence and the consequent rise in mortality, highlighting the need for effective end-of-life (EOL) care strategies. Despite legislative advancements, gaps remain in addressing the medical and ethical challenges of EOL care for patients with advanced dementia, particularly in evaluating treatment options like nasogastric tube (NGT) use and mechanical ventilation (MV). This study investigates the attitudes of the general population (GP) and clinicians in Korea towards EOL treatment decisions.
Methods
A cross-sectional, web-based survey was conducted among 500 members of the GP and 200 clinicians from a university hospital. Case vignettes were used to assess attitudes towards EOL treatment decisions, specifically focusing on NGT and MV use, and to explore the influencing factors.
Results
There was a notable difference in favorable attitudes toward NGT withdrawal between the GP (62.2%) and clinicians (39.0%). Otherwise, both groups showed higher acceptance of MV withholding (82.2% [GPs] and 82.5% [clinicians]) when informed of the patient’s verbal intention regarding life-sustaining treatment (LST), and attitudes were more positive with written advance directives. Also, it was decreased when patient intentions were unclear.
Conclusion
The results suggested the need to consider NGT as a medical intervention requiring a risk-benefit analysis. Although LST decision-making in patients with advanced dementia is still limited in Korea, this study showed the shared recognition among the GP and clinicians of the importance of EOL treatment decisions that consider patient wishes and quality of life for patients with advanced dementia.
INTRODUCTION
As the fastest aging country in the Organization for Economic Co-operation and Development [1], Korea faces unprecedented healthcare challenges, particularly in the domain of dementia care. The demographic shift (with 17.5% of the population being older adults as of 2022) highlights the urgent need for high-quality end-of-life (EOL) care for patients with advanced dementia [2].
The complexity of making decisions regarding EOL care for patients with dementia stems from several factors. Although a patient’s willingness to engage in certain treatments is crucial for selecting the appropriate treatment option in advanced stages [3], patients with advanced dementia typically lack decision-making capacity [4]. Thus, determining the extent of medical interventions for these patients is exceptionally difficult. Although most people did not want life-sustaining treatment (LST) when they were in advanced dementia [5,6], previous studies have raised concerns about the potential of overly aggressive care, such as the use of feeding tubes and intensive care unit admissions for patients with advanced dementia [7-9]. Recent studies have indicated that patients with dementia are more likely to receive LST within the last 90 days of life, contrary to their EOL preferences, compared to those without dementia [9].
This discrepancy between patient preferences and actual care provided reveals a critical gap in understanding and respecting patient autonomy at EOL, especially in the absence of advance directives (AD) or advance care planning (ACP), communication process that enables a person to express his or her wishes about future care [10]. They need to complete AD documentation in the early stages of their disease; otherwise, they cannot express their EOL care preferences, resulting in surrogate decision-making. These challenges are inherent in making decisions related to LST for patients with advanced dementia. Awareness of ACP is lower in Korea compared to Western countries, where over 50% of individuals are aware of ACP. In contrast, only 24.7% of patients who visit memory clinics in Korea have heard of ACP [6].
In Korea, the need for and attention to high-quality EOL care have been on the rise. In response to this growing demand, the “Act on Hospice and Palliative Care and Decisions on LST for Patients at the End of Life (LST Decisions Act)” was enacted in 2018 [11], allowing withdrawal of LST such as chemotherapy, ventilator, cardiopulmonary resuscitation, and hemodialysis in patients at the EOL. However, unlike in the United States (US) or European countries [12,13], in Korea, this law prohibits the discontinuation of artificial nutrition, which conflicts with international guidelines [14-16] that recommend the selective use of artificial feeding for patients with advanced dementia due to its higher risks compared to benefits. Moreover, clinicians are guided to consider discontinuation of LST only during the terminal phase. Therefore, the application of this Act is largely restricted to patients in the terminal phase of their illness. This approach does not align with the realities of patients with dementia. Compared to cancer, where the theoretical trajectories of dying are relatively predictable, dementia represents a classic example of the frailty trajectory, experiencing a very slow functional decline with steadily progressive disability before dying from complications [17], thereby making it challenging to predict the precise timing of the terminal phase [17-20].
A recent review [21] identified the primary barriers to high-quality EOL care as a lack of recognition of dementia as a terminal illness requiring palliative care and insufficient communication with families. EOL care in Korea often centers on imminent death and is mainly cancer-focused [5,22,23], overlooking the unique needs of patients with dementia. This gap highlights the necessity of a comprehensive understanding of the perspectives of both the general population and clinicians to enhance EOL care for advanced dementia, a field where research remains markedly scarce.
Therefore, this study aimed to investigate the attitudes of the general population and clinicians in Korea toward EOL treatment decisions for patients with advanced dementia, focusing on the most common and clinically challenging treatment decisions, namely, the use of nasogastric tube (NGT) and mechanical ventilation (MV) [4,8]. Furthermore, we explored the factors that influenced these perspectives and decisionmaking processes.
METHODS
This study is part of a cross-sectional online survey conducted in Korea in March 2022. The survey involved presenting three case scenarios (adults in a vegetative state, infants with irreversible hypoxic-ischemic encephalopathy, and older adults with advanced dementia) to patients in clinical situations where treatment-related decision-making can be challenging primarily due to the complexities of determining the terminal phase under the LST Decisions Act. The focus of this study is on patients with advanced dementia.
General population
A sample of 500 individuals (254 men and 246 women) aged 20–69 years was recruited from an web-based questionnaire via telephone calls or text messages in March 2022. Considering that a regression analysis of 21 questions requires 20 individuals per independent variable, the minimum number of participants was 420. To adjust for a 10% survey non-response rate, a minimum of 467 respondents was established, which was then rounded up to 500 participants. Samples from the general population were selected through quota sampling according to sex and age.
Clinicians
Clinicians from Seoul National University Hospital, with an estimated staff of 1,576, including 690 attending clinicians, 274 fellows, and 612 residents. were surveyed online between August and September 2022. Overall 200 participants (109 men and 91 women) answered the questionnaire, with a response rate of 12.7%. The specialties of the clinicians were very diverse, as described in Supplementary Table 1.
Questionnaires in case vignette of a patient with advanced dementia
Based on the literature review and discussions with psychiatrists and palliative care physicians, we created the most representative scenarios for the questionnaire. The scenarios revolved around an 85-year-old patient with advanced dementia having difficulty in performing basic activities of daily living (Supplementary Material). The case sequentially shows three clinical situations: 1) the patient frequently removed the NGT, necessitating reinsertion for nutrition, 2) the patient entered an acute stage with pneumonia, requiring a tracheostomy and MV, and 3) 3 months post-acute stage, with ongoing need for MV and NGT, the patient often appeared unresponsive. In each scenario, respondents were required to make critical decisions. Specifically, they were asked to decide on the withdrawal of the NGT in the first scenario, the withholding of MV in the second, and the potential withdrawal of MV (initiated during the acute stage) in the third. For the third scenario, it was presumed that the patient had undergone a tracheostomy and MV during the acute stage. After 3 months, the patient often appeared unresponsive, gazing blankly while awake. Care was taken to ensure that neither the MV nor the NGT was dislodged by the patient’s movements. In the second and third scenarios, questions were tailored based on the patient’s expressed intentions regarding LST, specifically exploring whether the patient had completed an AD, verbally expressed intentions regarding LST, or had not documented a clear intention.
Demographics and experience data
Additionally, we collected demographic data from the respondents, including age, sex, family background, personal experiences with illness, bereavement, LST decision-making, and completion of an AD. The general population provided information on education and income, whereas clinicians shared details about their roles, experiences with patients with dementia, and LST decision-making.
Statistical analyses
The participants’ characteristics and responses were summarized using descriptive data. Group differences were analyzed using the χ2 test for categorical and Student’s t-test or Wilcoxon rank-sum test for continuous variables. Attitudes toward NGT withdrawal and MV withholding were analyzed separately among clinicians and the general population respondents, along with the reasons for these attitudes, allowing multiple responses, especially regarding MV withholding in the acute exacerbation stage. Statistical analyses used two-sided tests with 95% confidence intervals; p-values <0.05 indicated significance. All analyses were conducted using the STATA software (version 16.0; Stata Corp., College Station, TX, USA).
Ethics statement
This study was approved by the Institutional Review Board of the Seoul National University Hospital (No. H-2202-082-1301). It was conducted in accordance with the principles of the Declaration of Helsinki. The survey was conducted after obtaining consent from the participants to disclose their information and participate in the study.
RESULTS
Participant characteristics
Table 1 presents the characteristics of the general population and clinicians. There were no significant differences in sex distribution between the two groups (p=0.376). However, there was a significant difference between the groups in terms of age distribution (p<0.001). The age distribution of the general population was relatively uniform, ranging from 20 to 60 years. Conversely, the age distribution of the clinicians was primarily concentrated between 20 and 40 years; only 10 individuals (5.0%) were aged ≥50 years.
Attitudes toward the NGT withdrawal
In a situation in which patients with advanced dementia repeatedly remove their NGT and it needs to be reinserted for nutritional support, attitudes towards NGT withdrawal varied significantly between the general population and clinicians. While 62.2% of the general population favored NGT withdrawal, only 39.0% of clinicians shared this viewpoint (p<0.001), indicating a statistically significant difference in attitudes (Figure 1).
Demographic and socioeconomic variables significantly influenced the general population’s attitudes toward NGT withdrawal (Table 2). An incremental trend was noted with advancing age, with older respondents more likely to favor NGT withdrawal (p=0.001). Respondents with spouses exhibited a more positive stance toward withdrawal (p=0.003). Furthermore, a monthly household income exceeding 4 million won correlated with a higher likelihood of supporting NGT withdrawal, as opposed to those with lower income levels (p=0.025) (Table 2).
Contrastingly, clinicians’ attitudes towards NGT withdrawal were not influenced by age or marital status. Instead, personal healthcare experiences notably affected their perspectives. Clinicians with experience of suffering from a disease or an accident over 1 month, were significantly more inclined toward endorsing NGT withdrawal (62.5%) compared to those without such personal medical experiences (37.5%, p=0.045) (Supplementary Table 2).
Attitudes toward MV withholding during the acute exacerbation stage
In a situation where a tracheostomy and MV are necessary to sustain life in an acute exacerbation stage for a patient who had previously expressed that they wanted to die peacefully (i.e., without burdening their family members), 80.4% of the general population and 77.5% of clinicians showed positive attitudes toward MV withholding (p=0.390) (Figure 2A).
In the general population, factors associated with positive attitudes toward MV withholding included older age, having a spouse, and a higher income (Table 3). Among clinicians, having a spouse was the only factor associated with positive attitudes toward MV withholding (Supplementary Table 3).
Reasons for agreement/disagreement on MV withholding during the acute exacerbation stage
When analyzing reasons for agreement to withhold MV, the general population primarily pointed to the potential suffering from MV dependency (69.4%), while clinicians more often assumed the patient’s will to withhold MV (89.0%). Comparing both groups, no significant differences emerged in terms of anticipated patient suffering, likelihood of recovery, or views on resource allocation for incurable patients. However, clinicians more often believed that the patient would prefer to avoid MV (56.7% [general population] vs. 89.0% [clinicians], p<0.001), and the general population more frequently considered family caregiving burdens (60.0% [general population] vs. 46.5% [clinicians], p=0.004) (Figure 2B).
When comparing reasons for disagreement with MV withholding, both groups cited the potential desire of the patient to receive MV as the primary reason (59.2% [general population] vs. 66.7% [clinicians], p=0.393). However, a greater proportion of the general population stated that treatment decisions should be based on the advice of healthcare professionals, compared with the corresponding proportion of clinicians (37.8% [general population] vs. 20.0% [clinicians]; p=0.035) (Figure 2C).
Attitudes toward withholding MV based on the patient’s desires regarding LST
We explored attitudes toward MV withholding during the acute exacerbation stage under three scenarios based on how clearly the patient had expressed their wishes regarding LST. In the situation where the patient had only verbally expressed their intention of not wanting to rely on LST, both the general population and clinicians exhibited positive attitudes toward MV withholding (82.2% [general population] vs. 82.5% [clinicians]) (Figure 3). The presence of an AD further amplified positive attitudes toward MV withholding, a trend observed among clinicians (82.5% to 97.0%) more than the general population (82.2% to 92.2%). Furthermore, in situations where the patient had not expressed any wishes regarding LST, both groups showed a decreased inclination towards MV withholding, with clinicians exhibiting a notably lower rate (39.0%) compared to the general population (52.8%; p=0.001) (Figure 3).
Attitudes toward home ventilation withdrawal after 3 months
The final question explored the withdrawal of home ventilator use under the three aforementioned scenarios. The results were consistent with the results during the acute exacerbation stage. In the presence of an AD, both groups displayed greater positive attitudes toward home ventilator withdrawal. However, when the patient’s preferences regarding LST could not be determined, there was a decrease in positive attitudes toward home ventilator withdrawal. Similar to the acute exacerbation stage, the change in attitude was significantly more pronounced among clinicians than among members of the general population (Supplementary Figure 1).
DISCUSSION
This study investigates the perspectives toward EOL treatment decision-making in the current Korean medical landscape among both the general population and clinicians, specifically regarding the use of NGT and MV in patients with advanced dementia. In Korea, continuing LST is taken for granted even in EOL situations. However, the general population largely demonstrated positive attitudes toward both NGT withdrawal and MV withholding. Clinicians exhibited more conservative attitudes toward NGT withdrawal compared with the general population. However, clinicians also demonstrated positive attitudes toward MV withholding. Interestingly, clinicians’ attitudes depended primarily on patient preferences and AD concerning LST. Furthermore, demographic and socioeconomic variables, including age, having a spouse, family structure, and household income, were significantly associated with EOL decision-making in the general population.
Interestingly, clinicians showed a more conservative stance regarding NGT withdrawal than the general population. This contrast was more pronounced than that in decisions related to MV. In Korea, feeding, traditionally considered as fundamental care, differs from other medical interventions, which are evaluated through risk-benefit analysis. Additionally, Korea’s LST Decisions Act states that nutrition and hydration cannot be withdrawn or withheld. This scope of essential nutrition provision does not classify artificial feeding as LST. Therefore, even if a patient expressed refusal of LST and was instructed not to consider the current law during the survey, 61.0% of clinicians in this study expressed reluctance towards NGT withdrawal, indicating that clinicians are legally bound to continue artificial feeding.
However, international studies have revealed that NGT can cause significant harm without clear medical benefits, emphasizing the need for careful consideration of each patient’s specific situation and preferences in the advanced stages of dementia [14,15,24,25]. According to the American Geriatrics Society feeding tubes in Advanced Dementia Position Statement [14] and Canadian Geriatrics Society [15], the use of feeding tubes is not recommended for older adults with advanced dementia who experience eating difficulties, and careful hand feeding is suggested. The National Institute for Health and Care Excellence guidelines in the United Kingdom also suggest reserving tube feeding for cases where dysphagia is likely temporary [16]. Furthermore, artificial feeding could pose a significant risk for the patient, including the application of restraints [25-27], tube dislodgment [28], and agitation induced by discomfort. Recent studies in the US have reported a nearly 50% decline in the use of feeding tubes for patients with dementia over a 14-year period (2000–2014), which could have possibly been due to the evidence base and guidelines advocating against their use in advanced dementia [29,30]. To avoid the unnecessary use of artificial feeding in patients who prefer not to receive it, and to reduce related burdens, it should be treated as a medical intervention, similar to other LSTs, and aligned with the goals of care and the overall quality of life. The general population’s favorable stance on NGT withdrawal highlights the need for a consensus in Korean society regarding such medical decisions.
Under Korea’s LST Decisions Act, clinicians are guided to consider the discontinuation of LST only during the terminal phase. Although this study could not consider the terminal phase, over 90% of both the general population and clinicians agreed to withhold MV if an AD was in place. This stance is in line with the international guidelines of the European Association for Palliative Care [31] in Australia [32] and the United Kingdom [33], emphasizing patient comfort and respect for the wishes in EOL care in advanced stages without confining decisions to the terminal phase. These guidelines recommend against aggressive treatments, such as cardiopulmonary resuscitation, intubation and MV for advanced-stage patients, and advise careful consideration of antibiotic therapy to avoid unnecessary hospitalization. Despite its potential life-saving role [34-37]. MV use in patients with advanced dementia often leads to prolonged suffering and societal costs without significantly improving the survival rate [38]. The prevalent use of MV in advanced dementia is linked to increased risks of delirium and death [39]. Taken together, the findings highlighted the need for Korea’s LST Decisions Act to assess the terminal phase in dementia more thoroughly to minimize unwarranted interventions and caregiver burden while enhancing patient comfort.
In the present study, the variables that might affect EOL decisions varied between the general population and clinicians. Regardless of agreement or disagreement with withholding MV, clinicians cited the patient’s assumed will for MV treatment as the primary reason for their decision on MV withholding. Moreover, clinicians’ stance on MV was based on the presence of an AD and their understanding of the patient’s LST intentions, with 97.0% favoring MV withdrawal when an AD was documented; however, only a third agreed without clear patient preferences. Our findings suggested that clinicians tend to give more weightage to patient preferences regarding EOL decisions compared to the general population.
Age emerged as a significant determinant in the general population’s decision-making process, aligning with the findings from a Japanese study [40] that indicated a greater propensity among older individuals to withhold LST. Cultural aspects unique to Korea, such as filial piety, emphasis on exhaustive efforts for parental care [41], and the desire to avoid burdening others [5,42], likely contribute to these differing attitudes. Among clinicians, age did not significantly influence decisions, possibly due to the majority being in their 20s and 30s, which may have presented challenges in statistical significance related to age. However, upon examining the numbers, a trend similar to that of the general population appears, where older clinicians tend to have more positive attitudes toward NGT withdrawal and MV withholding (Supplementary Tables 2 and 3).
Individuals who had a spouse or partner exhibited more positive attitudes toward LST discontinuation, and this trend was more pronounced in the general population. Among clinicians, the presence or absence of a spouse influenced the attitude only in cases of MV withholding. The general population primarily focused on patients’ suffering and family burden in their positive responses to MV withholding, with caregiver burden being a more frequent consideration than among clinicians. This reflected a prevailing belief in the Korean general population that avoiding burdening others at EOL is paramount [42]. This perspective aligned with research involving patients with cancer and their caregivers, where the main motive for creating an AD was to avoid burdening the descendants [43]. Accordingly, the general population laid considerable emphasis on family pain and burden in EOL treatment decisions, indicating a significant impact of the presence of a family, especially a spouse, in LST decisions.
Our results showed that members of the general population with a higher household income demonstrated more positive attitudes toward LST discontinuation. These results differ from the findings in a previous Japanese study [40]. Differences in question format make it challenging to directly compare the two studies. Participants in the previous study were asked about their preferences regarding care settings (hospital, care home, and home) and seven LSTs (including NGT and MV). The study revealed that participants with higher income levels were less likely to prefer hospital care settings but expressed a greater desire for LST. In previous research conducted in Taiwan [44] and Japan, it was found that men were less likely to agree to withhold EOL treatment (NGT, MV, and tracheotomy) in cases of advanced dementia. However, in our study, sex did not influence attitudes toward LST discontinuation. Nevertheless, the small number of participants with such experiences may explain the lack of statistical significance.
To the best of our knowledge, this is the first study that analyzed differences in attitudes toward EOL treatment decisionmaking between the general population and clinicians for patients with advanced dementia in Korea. However, this study had some limitations. First, the survey was conducted in a single tertiary university hospital, with the clinicians’ age distribution skewed toward younger demographics, potentially affecting the generalizability of the findings. Studies have shown that the larger the hospital and medical facilities, the more intense the EOL treatments tend to be [45,46]. Given that the medical center in this study is one of the largest hospitals in Korea, caution must be exercised when interpreting these results. Therefore, it is necessary to replicate this study in a multi-center setting with a larger sample size across diverse settings to verify the results. Second, the complex medical scenarios presented in the case vignettes may have been challenging for the general population to fully comprehend. However, communication among clinicians, patients, and caregivers, as well as caregivers’ knowledge regarding EOL care in clinical settings for advanced dementia, may be insufficient. A recent review [21] found that the most common barriers to the provision of palliative care were a lack of awareness that dementia is a terminal illness requiring palliative care and a lack of communication with family members. Therefore, the findings of this study align closely with actual clinical practice, highlighting the existing gaps and challenges in EOL care of patients with advanced dementia.
Clinicians and the general population showed different attitudes toward NGT withdrawal, and the results suggested the need to consider NGT as a medical intervention requiring a risk-benefit analysis. Although LST decision-making beyond the actively dying phase is still limited in Korea, the results highlighted the shared recognition among the general population and clinicians of the importance of EOL treatment decisions that consider patient wishes and quality of life, even when decision-making capacity is compromised. Additionally, implementing a dementia-specific health directive could ease decision-making burdens by clarifying patients’ values and goals and aiding the LST decision-making process.
Supplementary Materials
The Supplement is available with this article at https://doi.org/10.30773/pi.2024.0135.
Notes
Availability of Data and Material
The datasets generated and analyzed during the present study are not publicly available due to ethical considerations and privacy restrictions. However, the data can be made available by the corresponding author upon request, subject to approval by the Institutional Review Board of the Seoul National University Hospital, South Korea.
Conflicts of Interest
The authors have no potential conflicts of interest to disclose.
Author Contributions
Conceptualization: all authors. Data curation: So Yeon Jeon, Shin Hye Yoo, Jung Lee. Formal analysis: So Yeon Jeon, Shin Hye Yoo. Funding acquisition: So Yeon Jeon, Shin Hye Yoo, Hye Yoon Park. Investigation: all authors. Methodology: all authors. Validation: So Yeon Jeon, Shin Hye Yoo, Hye Yoon Park. Visualization: So Yeon Jeon, Shin Hye Yoo, Hye Yoon Park. Writing—original draft: So Yeon Jeon, Shin Hye Yoo. Writing—review & editing: all authors.
Funding Statement
This work was supported by the Patient-Centered Clinical Research Coordinating Center (PACEN), funded by the Ministry of Health and Welfare, Republic of Korea [grant number HC21C0115]; Seoul National University Hospital Research Fund [grant number 04-2020-0070]; Basic Science Research Program through the National Research Foundation of Korea (NRF), funded by the Ministry of Education [grant number RS-2023-00210380]; and Chungnam National University Hospital.
Acknowledgements
We are grateful to Professor Jae-Joon Yim for his efforts in procuring funding for this project, which is indicative of his dedication to supporting important research.