Factors Associated with Family Caregivers’ Intentions to Complete an Advance Directive for Individuals with Dementia: A Cross-Sectional Descriptive Study
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Participants
2.3. Data Collection
2.4. Measurements
2.4.1. General Characteristics of Participants
2.4.2. Knowledge of ADs
2.4.3. Preference for EOL Care
2.4.4. Attitudes Toward Withdrawing LST
2.4.5. Intention to Complete an AD
2.5. Data Analysis
3. Results
3.1. Study Population
3.2. Knowledge of ADs, Preferences for EOL Care, Attitudes Toward Withdrawing LST, and Intention to Complete an AD
3.3. Differences in the Intention to Complete an AD According to General Characteristics
3.4. Correlation Between Knowledge of ADs, Preferences for EOL Care, Attitudes Toward Withdrawing LST, and Intention to Complete an AD
3.5. Factors Associated with the Intention to Complete an Advance Directive
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Abbreviations
ADs | advance directives |
EOL | end-of-life |
LST | life-sustaining treatment |
Appendix A
No | Questionnaire Items | Percentage of Correct Responses (%) |
---|---|---|
1 | Hospice and palliative care provide medical services that support terminally ill patients in experiencing a natural and comfortable passing. | 80. 7 |
2 | If hospice and palliative care are provided, the administration of painkillers is discontinued. | 58.6 |
3 | When receiving hospice and palliative care, basic medical services such as nutritional support are provided. | 77.9 |
4 | Terminally ill patients lack decision-making capacity. | 76.4 |
5 | End-of-life patients lack decision-making capacity. | 60.7 |
6 | Life-sustaining treatment refers to the act of treating diseases. | 81.4 |
7 | Cardiopulmonary resuscitation (CPR), as part of life-sustaining treatment, is performed in cases of cardiac or respiratory arrest. | 56.4 |
8 | Any adult aged 19 or older may prepare an advance directive. | 82.9 |
9 | An advance directive is a document in which an adult specifies in advance whether they wish to receive or decline life-sustaining treatment in the event they lose decision-making capacity. | 90.0 |
10 | An advance directive can be completed by family members instead of the individual. | 42.9 |
11 | The person completing the advance directive can designate a proxy to make medical decisions on their behalf. | 12.1 |
12 | An advance directive must be completed at designated institutions only. | 61.4 |
13 | To complete an advance directive, professional assistance from a doctor or nurse is required. | 33.6 |
14 | An advance directive can be modified or revoked at any time. | 82.1 |
15 | A life-sustaining treatment plan is a document prepared by terminal patients nearing end-of-life, specifying whether they wish to receive or decline life-sustaining treatment. | 86.4 |
16 | A life-sustaining treatment plan must be prepared after the doctor directly explains it to the patient. | 57.1 |
17 | Once a life-sustaining treatment plan is prepared, it cannot be altered. | 79.3 |
18 | A life-sustaining treatment plan can be prepared based solely on the opinions of the patient’s family instead of the patient themselves. | 41.4 |
19 | A life-sustaining treatment plan is a document prepared by a doctor. | 33.6 |
20 | Instead of a life-sustaining treatment plan, another form such as a DNR (do not resuscitate order) may be used. | 20.7 |
21 | After completing a life-sustaining treatment plan, all medical care, including painkillers and antibiotics, is discontinued. | 51.4 |
Total | 60.7 |
Appendix B
No | Questionnaire Items | Mean ± SD |
---|---|---|
1 * | Even for patients in an irreversible condition, all possible treatment methods should be utilized to extend their lives. | 2.18 ± 1.23 |
2 | If an irreversible patient and their family request the withdrawing life-sustaining treatment due to financial difficulties, it should be allowed. | 4.19 ± 0.84 |
3 | If an irreversible patient chooses to withdraw life-sustaining treatment over enduring the pain of treatment, it is a decision made for the patient’s benefit. | 4.26 ± 0.83 |
4 | For elderly patients in an irreversible condition, withdrawing life-sustaining treatment can be considered a way to conclude their remaining days. | 4.16 ± 0.94 |
5 | If an irreversible patient or their family requests the withdrawing life-sustaining treatment based on religious beliefs, it should be respected. | 4.30 ± 0.83 |
6 | If an irreversible patient and their family refuse intubation, even if it is deemed necessary, it should not be performed. | 4.04 ± 0.95 |
7 | Even if an irreversible patient’s blood pressure drops, if the patient or their family wishes, the administration of blood pressure-raising medication should be stopped. | 4.04 ± 0.91 |
8 * | Cardiopulmonary resuscitation (CPR) should be performed if an irreversible patient experiences cardiac arrest. | 2.70 ± 1.43 |
9 | Objective and ethical guidelines are necessary when deciding to withdraw life-sustaining treatment. | 4.03 ± 1.04 |
10 | Families have the right to decide on a patient’s death. | 4.17 ± 0.96 |
11 | Patients have the right to decide on their own death. | 4.39 ± 0.85 |
12 | Withdrawing life-sustaining treatment for an irreversible patient should be permitted for organ donation purposes. | 3.26 ± 1.16 |
13 | If the patient’s family wishes, the mechanical ventilator for an unconscious irreversible patient should be stopped. | 4.09 ± 0.96 |
14 | Gradually reducing artificial respiration for an unconscious irreversible patient at the family’s request is a considerate approach for the patient. | 4.21 ± 0.84 |
15 | For patients without dependents in an irreversible condition, withdrawing life-sustaining treatment based on medical judgment is advisable. | 4.17 ± 0.87 |
16 | If the patient’s family requests voluntary discharge of an irreversible patient, it should be granted upon receiving signatures from immediate family members. | 4.22 ± 0.91 |
17 | For irreversible patients where cardiac arrest is anticipated, obtaining consent for a DNR (do not resuscitate order) is advisable. | 4.26 ± 0.78 |
18 * | Even for irreversible patients admitted to the hospital, basic medication such as fluids and antibiotics should be provided. | 3.83 ± 1.14 |
19 * | It is unacceptable for medical professionals to simply watch a patient die without providing any treatment or care. | 2.89 ± 1.27 |
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Characteristics | Category | n (%) | M ± SD |
---|---|---|---|
Age (years) | 20~29 | 10 (7.1) | 41.50 ± 8.48 |
30~39 | 46 (32.9) | ||
40~49 | 62 (44.3) | ||
≥50 | 22 (15.7) | ||
Gender | Male | 20 (14.3) | |
Female | 120 (85.7) | ||
Religion | No | 79 (56.4) | |
Yes | 61 (43.6) | ||
Education level | ≤High school | 36 (25.7) | |
≤Bachelor’s degree | 104 (74.3) | ||
Income level | Low | 19 (13.6) | |
Average | 101 (72.1) | ||
High | 20 (14.3) | ||
Family cohabitation with patient | Living with | 85 (60.7) | |
Living separately | 55 (39.3) | ||
Other family members providing care | Yes | 107 (76.4) | |
No | 33 (23.6) | ||
Subjective health status | Healthy | 80 (57.1) | |
Fair | 53 (37.9) | ||
Unhealthy | 7 (5.0) | ||
Relationship to the patient | Spouse or child | 103 (73.5) | |
Grandchildren or daughter-in-law | 37 (26.4) | ||
Functional status of the patient | Minimal assistance | 50 (35.7) | |
Moderate or greater assistance | 90 (64.3) | ||
Type of dementia care provided | Institutional care | 22 (15.7) | |
Day care center | 57 (40.7) | ||
Family-provided care | 61 (43.6) |
Variables | n (%) | M ± SD | Range |
---|---|---|---|
Knowledge of ADs | - | 12.65 ± 3.30 | 0~21 |
Preferences for EOL Care | - | 3.12 ± 0.56 | 1~5 |
Pain management | - | 3.96 ± 0.68 | 1~5 |
Role of family | - | 3.64 ± 0.97 | 1~5 |
Spirituality | - | 3.64 ± 0.97 | 1~5 |
Decision making by healthcare professionals | - | 3.07 ± 1.13 | 1~5 |
Autonomous decision making | - | 2.28 ± 0.83 | 1~5 |
Attitudes toward withdrawing LST | - | 3.90 ± 0.50 | 1~5 |
Intention to complete an AD | - | - | - |
Yes | 119 (85.0) | - | - |
No | 21 (15.0) | - | - |
Characteristics | Category | Intention to Complete an AD | χ2 (p) | |
---|---|---|---|---|
Yes | No | |||
n (%) | n (%) | |||
Age (years) | 20~29 | 6 (60.0) | 4 (40.0) | 5.88 (0.117) |
30~39 | 40 (87.0) | 6 (13.0) | ||
40~49 | 55 (88.7) | 7 (11.3) | ||
≥50 | 18 (81.8) | 4 (18.2) | ||
Gender | Male | 14 (70.0) | 6 (30.0) | (0.082) |
Female | 105 (87.5) | 15 (12.5) | ||
Religion | No | 61 (77.2) | 18 (22.8) | (0.004 *) |
Yes | 58 (95.1) | 3 (4.9) | ||
Education level | ≤High school | 31 (86.1) | 5 (13.9) | (1.000) |
≤Bachelor’s degree | 88 (84.6) | 16 (15.4) | ||
Income level | Low | 17 (89.5) | 2 (10.5) | 0.96 (0.620) |
Average | 84 (83.2) | 17 (16.8) | ||
High | 18 (90.0) | 2 (10.0) | ||
Family cohabitation with patient | Living with | 73 (85.9) | 12 (14.1) | (0.810) |
Living separately | 46 (83.6) | 9 (16.4) | ||
Other family members providing care | Yes | 92 (86.0) | 15 (14.0) | (0.581) |
No | 27 (81.8) | 6 (18.2) | ||
Subjective health status | Healthy | 69 (86.3) | 11 (13.8) | 1.96 (0.376) |
Fair | 43 (81.1) | 10 (18.9) | ||
Unhealthy | 7 (100.0) | 0 (0.00) | ||
Relationship to the patient | Spouse or child | 91 (88.3) | 12 (11.7) | (0.104) |
Grandchild or daughter-in-law | 28 (75.7) | 9 (24.3) | ||
Functional status of the patient | Minimal assistance | 37 (74.0) | 13 (26.0) | (0.012 *) |
Moderate or greater assistance | 82 (91.1) | 8 (8.9) | ||
Type of dementia care provided | Institutional care | 21 (95.5) | 1 (4.5) | 2.97 (0.226) |
Day care center | 49 (86.0) | 8 (14.0) | ||
Family-provided care | 49 (80.3) | 45 (19.7) |
Variables | Knowledge of ADs | Preferences for EOL Care | Attitudes Toward Withdrawing LST | Intention to Complete an AD |
---|---|---|---|---|
r (p) | ||||
Knowledge of ADs | 1 | |||
Preferences for EOL Care | −0.48 ** (0.000) | 1 | ||
Attitudes Toward Withdrawing LST | 0.38 ** (0.000) | −0.15 (0.084) | 1 | |
Intention to Complete an AD | 0.23 * (0.007) | −0.08 (0.323) | 0.11 (0.206) | 1 |
Variables | B | SE | OR | Wald | 95% CI | p |
---|---|---|---|---|---|---|
Constant | 0.98 | 0.85 | 0.37 | 1.35 | 0.245 | |
Religion * | 1.47 | 0.67 | 4.36 | 4.82 | 1.171–16.265 | 0.028 |
Functional status of the patient ** | 0.88 | 0.53 | 2.41 | 2.78 | 0.856–6.803 | 0.096 |
Knowledge of ADs | 0.15 | 0.07 | 1.16 | 4.55 | 1.012–1.332 | 0.033 |
Nagelkerke R2 = 0.222, p < 0.05 |
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Park, H.; Kang, S.; Kim, Y. Factors Associated with Family Caregivers’ Intentions to Complete an Advance Directive for Individuals with Dementia: A Cross-Sectional Descriptive Study. Healthcare 2025, 13, 1297. https://doi.org/10.3390/healthcare13111297
Park H, Kang S, Kim Y. Factors Associated with Family Caregivers’ Intentions to Complete an Advance Directive for Individuals with Dementia: A Cross-Sectional Descriptive Study. Healthcare. 2025; 13(11):1297. https://doi.org/10.3390/healthcare13111297
Chicago/Turabian StylePark, Hyeseon, Sujin Kang, and Youngji Kim. 2025. "Factors Associated with Family Caregivers’ Intentions to Complete an Advance Directive for Individuals with Dementia: A Cross-Sectional Descriptive Study" Healthcare 13, no. 11: 1297. https://doi.org/10.3390/healthcare13111297
APA StylePark, H., Kang, S., & Kim, Y. (2025). Factors Associated with Family Caregivers’ Intentions to Complete an Advance Directive for Individuals with Dementia: A Cross-Sectional Descriptive Study. Healthcare, 13(11), 1297. https://doi.org/10.3390/healthcare13111297