Reducing Death Anxiety: The Impact of Advance Care Planning

Advanced Care Planning (ACP), including advanced directives, goals of care, and End of Life Conversations (EOL), are the primary method currently available to ensure a patient’s wishes are followed when they are unable to make or express their own decisions. However, these actions are only completed by about 1 in 3 adults even though 90% understood it was an important part of their end-of-life care [1,2]. Conversations about death and dying, post death arrangements, and relationships are at the same time wished for and avoided by patients [3]. A completion rate of less than 30% is lower than desirable for family members and healthcare providers, especially since advanced directives have been shown to decrease hospitalizations and healthcare costs, along with the high stress of medical burdens that are often placed on older adults [4]. EOL conversations are important early on as they encourage discussion between the patient and their support system and allows for an alignment of their ideas, perspectives, and goals of care. One study on the relationship between centenarians and their social system showed a significant difference in how the patient themselves viewed the EOL and how their social system thought the patient felt [5]. It is important for physicians and other providers to encourage these discussions to ensure that the patient’s autonomy and dignity are respected while maintaining their best possible quality of life. 

Death anxiety is a phenomenon that was defined in its early stages as an “emotional reaction provoked by anticipation of death generated by perceptions of a real or imaginary threat to existence of one’s own or of people close to them” [6,7]. This emotional reaction has been shown to have negative impacts on a patient’s physical and mental health, just as other stress reactions impact an individual’s health. The concept of death anxiety has many underlying components; fear of death, suffering, loneliness, separation, the unknown, and life goals left unfulfilled. Many studies have been done on how these conversations impact a patient’s social system and allow them to cope with the patient’s death by finding connection and closure [8]. However, there has been little research specifically into whether these discussions affect the patient’s own thoughts or emotional status relating to death and dying. 

Since it has not been studied extensively, it is difficult to develop a complete understanding of death anxiety or even determine how to measure it. In 2017, this concept was elucidated more concretely by Cai et al., who developed a scale for its measurement focusing on both the emotional and somatic components of death anxiety. For the scale they defined death anxiety “as the state in which an individual experiences physical symptoms of being upset and nervous, and dreaded feelings of worry and fear related to one’s own death and dying generated by an imagined threat to one’s existence.” They narrowed this down further into four dimensions related to physiologic reactivity, rumination on thoughts related to death or dying, emotional reactions of worry when thinking about dying, and a full out avoidance of things related to death and dying [7]. There are some variables that are known to affect levels of death anxiety in patients including spirituality, age, self-esteem, biological sex, presence of symptoms and level of isolation [6]. However, many of these are fixed variables healthcare providers either cannot or should not intervene in. This consideration directly impacts how providers care for those near the end of their life, including treating patient’s mental health comorbidities such as anxiety. 

Unlike other forms of anxiety, effective methods to reduce death anxiety have suffered from little formal study or research. Encouraging preparedness and creating space for discussion about death has the potential to decrease fear and physical responses of anxiety surrounding the subject. A 2017 Delphi consensus stated that ACP is a “process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences” [9]. The benefit here is that patients will increase their preparedness, which has been shown to negatively correlate with death anxiety [10]. Further study is also needed in this area with researchers who performed a systematic review of fifteen randomized controlled trials and concluding that more research needs to be conducted overall for this area to influence healthcare [11]. Therefore, to bridge the need for increased research into both areas while simultaneously aiming for concrete interventions that can impact direct patient care, the correlation between ACP and death anxiety demonstrates great potential for research. This study will compare the presence of death anxiety in two groups, with and without ACP or EOL’s to assess their impact on death anxiety levels in patients over 40 years old. We hypothesized that the SDA serves as a straightforward intervention to assess ACP and EOL as a non-pharmaceutical mechanism to reduce death anxiety.

This study used a cross-sectional design to compare the presence of death anxiety in participants age 40 and older who have participated in Advanced Care Planning (ACP) or End of Life (EOL) discussions with those who have not taken these steps. This study was approved by the institutional review board of the Fort Wayne Medical Education Program, Fort Wayne, IN. This study took place in Fort Wayne, IN at the Family Medicine Center and its associated patient care centers, and skilled nursing facilities, between May 31, 2024, and Jan 17, 2025. The 17 question Scale of Death Anxiety (SDA) questionnaire, developed and validated in Chinese by Cai et al., in 2017 and translated to English by a native Chinese speaker not otherwise associated with this project in 2020. The translated survey was used to evaluate the specific levels of death anxiety in study participants. This survey tool was used to evaluate death anxiety in non-terminally ill patients with consideration given to psychological and somatic components of anxiety. The SDA measures death anxiety across its four components: 5 items for Dysphoria, 5 items for Death Intrusion, 4 items for Fear of Death, and 3 items for Avoidance of Death (Cai et al.,). To gauge death anxiety using the SDA, participants rate their level of agreement to a statement using a standard 5-point Likert scale. Following the SDA questions, two binary questions were included to gauge the participants' EOL preparedness and engagement in ACP: whether they had (1) established formal advance directives and/or (2) discussed EOL wishes with their loved ones. 

Participants in this study were recruited from patients who presented for routine care visits or at community outreach events. The inclusion criteria were patients 40 years of age and older and were able to provide verbal and written consent to the project. Criteria for exclusion were patients under 40 years old and those who were unable to provide consent due to mental status, language barrier, or medical status. A total of 140 patients completed the survey, and the patient population was divided into two cohorts based on age, with cohort 1 including those aged 40-64 and cohort 2 those aged 65 and above. 

Trained research assistants first obtained verbal and written informed consent using a standardized form. To prevent duplicate participation and to aid in assigning cohorts, they securely recorded the participants’ name, date of birth, and patient identification number if available. Demographic data was subsequently anonymized and stored securely for patient privacy in compliance with HIPAA requirements. The survey was conducted in a structured interviewer-administered format, where the research assistants read the statements aloud and recorded the participants’ responses on the Likert scale. This administration format was chosen to provide equity across a population with a large range of health literacy and to limit non-response bias. 

At the conclusion of the data collection period of just under one year, the data was analyzed. A one-tailed t-test was used to evaluate the directional hypothesis that participants who engaged in ACP or EOL discussions will have statistically significant lower levels of death anxiety compared to those who did not. Participants were categorized into groups based on their responses to the two binary questions: (1) whether they had established advance directives and (2) whether they had discussed EOL wishes with their loved ones. Then these responses were compared to those of each of the 17 SDA items separated by two age cohorts. Separate analyses were performed for each of the two cohorts: 40-64 years (cohort 1) and 65 years and older (cohort 2) to provide inter-cohort, intra-cohort, and aggregate comparisons. A p-value of < 0.05 was considered statistically significant.

For this study 88 participants were include in cohort 1 (40 to 64 years old) and 52 participants to cohort 2 (65+ years old) for a total of 140 participants. The significant results presented here are for the aggregate comparisons of those who did or did not have AD’s or EOL’s (Figures 1 and 2). The inter-cohort and intra-cohort comparisons did not add to the study beyond what is shown for the aggregate results so they haven’t been included as figures.

Figure 1: Responses stratified among Q18 (Y/N to advanced directives). Of the 17 questions asked, 9 were found to show a decrease in anxiety among individuals with advanced directives. There were 36/140 participants who advanced directives. 

Figure 2: Responses stratified among Q19 (Y/N to EOL conversations). Of the 17 questions asked, two were found to show a significant decrease in anxiety among individuals who had engaged in EOL conversations. There were 85/140 participants who had previously had end of life discussions prior to this study. 

In comparing individuals who have completed advance directives (n=36) versus those who have not (n=104), 16 out of 17 questions demonstrated less anxiety in the group who had completed ADs (Figure 1). The only question with an inversion of this trend being question 16; “in the past month I have frequently thought about what my own death will be like”. Of the other sixteen, nine questions of the survey were statistically significant in the decreased levels of anxiety (Figure 1). 

When evaluating those who had previous EOL conversations (n=85/140), 15 out of 17 questions showed less anxiety in those who affirmed having these conversations. However, only two of these were statistically significant. Question 9 “When I think about death, I often feel weak, tired, or fatigued” with a p value of 0.036 and question 15 “In the past month I have frequently thought about death related matters” (Figure 2) with a p value of 0.028. 

When turning to the cohort-based analysis, we see multiple questions with statistically significant different responses; however, no discernable pattern can be drawn from these. The p value indicating the highest statistical decrease comes when comparing the responses of those who endorses having EOL conversations, on question 8 “When I think about death, I feel that my life has been pointless or wasted”. These responses show that those in cohort 1 had overall higher levels of anxiety in response to this question with a p value of 0.005. Other specific questions with statistically significant differences including questions 11,14,15, and 16 deal with topics such as dreams, overall fear, and feelings of distance or alarm. While no pattern of significance can be drawn from these intermittent responses, age does appear to have some impact on this topic.

The primary goal of this project was to evaluate the protective effects of AD and EOL efforts by decreasing our patient’s death anxiety. As primary care providers we understand anxiety as a complex psychological and physiologic response that commonly produces measurable physical stress reactions. These stress reactions lead to increased complexities in medical decisions made by providers, and subsequently increased burden to the healthcare system. Death anxiety and lack of preparation also increases the burden on direct caregivers and familial support. Based on the results from this study, increased preparedness for the occurrence of death or impaired decision-making capacity in the event of deteriorating health may reduce this stress. Describing the simple yet beneficial intervention of ADs and EOL conversations using tools such as the SDA would potentially increase patient-driven incentives to complete these invaluable processes. 

In analyzing the collected data, the statistically significant protection of having advance directives in this pursuit were readily apparent. With most of the survey questions that investigate death anxiety showing statistically significant decrease for these participants, we can draw support for our hypothesis. However, we see less of this significant protective factor when considering EOL conversations independently from the AD’s. Finally, when considering the impact of age, we saw that there was no pattern of impact that could be concluded from sub-cohort analysis. 

Additionally, it is imperative that we consider the limitations of our research. There aren’t validated tools for assessing death anxiety in English. The scale of death anxiety used to survey individuals in this study was initially written in Chinese and translated for our use, and though the translation is accurate since it was performed by a native Chinese speaker who is also fluent in English and a physician the degree of semantic similarity between the two translations is uncertain. This issue may have been further complicated by the fact that some individuals in the study were not native English speakers and relied on a translator to understand the questions in the SDA. It is possible that some level of ambiguity was introduced through the initial translation from Chinese and then to a non-English language. It is also important to remain aware that other social determinants of health, that were beyond the scope of this study, may influence participant’s responses to medically related questions [12-14]. Finally, the presented results are from the aggregate responses of all participants since cohort analysis did not expand the results. 

In conclusion, by showing that ACP interventions can significantly decrease a person’s anxiety about death, we can encourage our patient’s participation end of life planning. ACP and EOL discussions are without additional financial cost to the patient and are essentially universally available if offered by their provider. Therefore, as primary care providers we can increase patient-driven involvement with palliative care by offering this non-pharmacological method for decreasing EOL stress. The resulting benefits to society, such as decreased healthcare overutilization, also aid individual patients, caregivers, and support systems.

Our sincere thanks to Dr. Fen-Lei Chang for his help translating the original SDA scale for use in this study.

1. Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, et al. (2017) Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff (Millwood) 36: 1244-1251.
2. Sorrell JM (2018) End-of-life conversations as a legacy. J Psychosoc Nurs Ment Health Serv 56: 32-35.
3. Generous MA, Keeley M (2017) Wished for and avoided conversations with terminally ill individuals during final conversations. Death Stud 41: 162-172.
4. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A (2014) The effects of advance care planning on end-of-life care: A systematic review. Palliat Med 28: 1000-1025.
5. Boerner K, Kim K, Kim Y, Rott C, Jopp DS (2018) Centenarians' End-of-Life Thoughts and Plans: Is Their Social Network on the Same Page? J Am Geriatr Soc 66: 1311-1317.
6. Detering KM, Hancock AD, Reade MC, Silvester W (2010) The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ 340: 1345.
7. Mercês CAMF, Souto JDSS, Zaccaro KRL, de Souza JF, Primo CC, et al. (2020) Death Anxiety: Concept Analysis and Clarification of Nursing Diagnosis. Int J Nurs Knowl 31: 218-227.
8. Cai W, Tang YL, Wu S, Li H (2017) Scale of Death Anxiety (SDA): Development and validation. Front Psychol 8: 858.
9. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, et al. (2017) Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 53: 821-832.
10. Menzies RE, Zuccala M, Sharpe L, Dar-Nimrod I (2018) The effects of psychosocial interventions on death anxiety: A meta-analysis and systematic review of randomised controlled trials. J Anxiety Disord 59: 64-73.
11. Krause S, Rydall A, Hales S, Rodin G, Lo C (2015) Initial validation of the Death and Dying Distress Scale for the assessment of death anxiety in patients with advanced cancer. J Pain Symptom Manage 49: 126-134.
12. Mohammadpour A, Sadeghmoghadam L, Shareinia H, Jahani S, Amiri F (2018) Investigating the role of perception of aging and associated factors in death anxiety among the elderly. Clin Interv Aging 13: 405-410.
13. Missler M, Stroebe M, Geurtsen L, Mastenbroek M, Chmoun S, et al. (2011) Exploring death anxiety among elderly people: A literature review and empirical investigation. Omega (Westport) 64: 357-379.
14. Benton JP, Christopher AN, Walter MI (2007) Death anxiety as a function of aging anxiety. Death Stud 31: 337-350.