This study aimed to examine the effects of empowerment and education intervention to promote Advance Care Planning (ACP) for residents in a highly aged and depopulated region. The study utilized a single-group pre- and post-test design and was conducted in Osakikamijima, Hiroshima, Japan. The researchers and town officials together formed an ACP committee and created an intervention framework. An ACP workshop was held for the participants and a self-administered questionnaire was carried out before, immediately after, and 3 months after the workshop. A total of 125 residents participated in the workshop and 87 of them completed more than 80% of the questionnaire items, whose responses were analyzed as valid responses. The number of participants who completed the AD increased significantly three months after the workshop ( p = 0.008). There was a slight increase in the frequency of consultation with the family, but no change was observed in terms of consultation with healthcare providers. The educational intervention in-creased the respondents’ awareness and knowledge of ACP but did not affect the autonomous decision-making process regarding end-of-life care. This strategic process of ACP empowered the residents’ awareness and attitude towards end-of-life care with an increased completion rate of AD. On the other hand, cognitive barriers remained toward communication and decision-making shared with healthcare providers. Insufficient consultation with family members also became evident. Therefore, a new intervention strategy which helps increase communication with healthcare providers needs to be formulated and guidelines for consultation with the family and others need to be prepared.
In Japan, the rate of aging is currently at 25.1% and is advancing faster than any other rate in the world [
What is causing this gap and why are dying at home not more prevalent? Several factors have been discussed. 1) The large number of hospital beds [
Despite these limitations, Japan is currently compensating for the lack of knowledge of both its citizens and health/nursing care providers through a concept called advance care planning (ACP), designed to promote dying at home. ACP is being promoted in community through the integrated community care system, which is a system designed to support regional home care system by 2025 when Japan’s elderly population is expected to peak [
One reason for this slow uptake is the aforementioned psychological resistance of both health/nursing care providers and citizens. Other reasons include the lack of promotion for the ACP process in order to compensate for the lack of knowledge of both citizens and health/nursing care providers, and that topics regarding end-of- life care tend to be avoided because they conjure images of death.
Community empowerment is effective for widespread awareness of the concepts of ACP and to tie these to implementation. This is a process by which a region’s citizens critically assess their own situation, realize common issues, and take action to improve and resolve the causes of these issues by creating societal change [
Therefore, in this study, we selected one region and performed community awareness activities directed to health/nursing care providers and citizens alike in order to promote ACP in the integrated community care system, and we have reported on the changes to awareness and behavior based on this intervention. Furthermore, we measured promotion through the completion of written AD and discussions about end-of-life care with family and health care professionals as goals for the development of ACP.
In an awareness survey conducted in 2014 by the Ministry of Health, Labour and Welfare on 2179 people in the general population, those with completed AD comprised 3.2%. Meanwhile, 42.2% responded that they had discussed with their families, but only 2.8% responded that they spoke in detail [
Searching literature databases (MEDLINE, the Cumulative Index to Nursing and Allied Health Literature [CINAHL], and the Japan Medical Abstracts Library) for ACP and AD in Japan revealed most studies regarding the awareness of AD or LW. Several studies focused on the complete rate of AD or the practicality of AD [
As demonstrated above, Japan has not yet reached a stage where it can facilitate awareness of study-focused, practical interventions from a community empowerment perspective, despite the fact that the importance of ACP is well known.
Osakikamijima has a population of 8207 and is designated an isolated island. The proportion of elderly people is 45.4%, while those aged over 75 years comprise 26.7% (as of January 1, 2014) [
Participants were non-hospitalized residents aged over 20 years living in the region. A notice was sent to all residents of Osakikamijima, where a workshop was given (
Single-group pre and posttest study.
Intervention method: We outlined the framework and performed the intervention at the corresponding step in
Step 1: Established ACP committee and planned intervention framework: A joint committee between Osakikamijima and the researchers was established in order to create a region where it was possible to live out one’s life on the island. The participating members were the Mayor of Osakikamijima, government employees from Osakikamijima, the town’s medical association, the town’s Council of Social Welfare, the community comprehensive care center, the nursing care service office, the home-visiting nursing station, and an informal municipal organization.
Step 2: Created an ACP workbook: We created a workbook “Ending Notebook” to help guide the ACP process. The contents included wishes for how to live in the future, personal history, messages to important people, preference of medical/nursing care, management of money and assets, and funeral arrangements. For medical/nursing care, participants noted the disease diagnoses and remaining life, if they were given the information from the healthcare provider. Questions regarding palliative care such as pain management and the use of life-prolonging treatments (artificial feeding, cardiopulmonary resuscitation, use of artificial respirator) were answered with one of three options: yes, no, and unsure. Space was included for free comments, as well as inputting the names of each participant’s family physician and the proxy decision makers. Additionally, space was included to record the date when discussions with the healthcare provider and family took place.
Step 3: Announcement of the workshop to residents: We created a leaflet explaining ACP and announced the workshop for the promotion of ACP in the town’s PR brochure, which was distributed to all residents of Osakikamijima. The public health nurse of the town urged opinion leaders, such as the regional welfare commissioner and heads of neighborhood associations, to participate; at the same time, the public health nurse urged citizen participation through door-to-door canvassing.
Step 4: Implemented the workshop: The workshop was implemented over four sessions (60 minutes/session, 2 days). There was a two-week gap between the two workshop sessions (
(knowledge), and psychomotor domain (behavior). We employed a regional key person to increase participant awareness. The regional head priest of the Buddhist temple gave a lecture on living and dying from the perspective of Buddhism. A physician for the head of the town’s medical association gave a lecture on the current state of end-of-life care in Japan, as well as medical knowledge pertaining to end-of-life and life-prolonging treatment. Additionally, the physician shared their thinking regarding end-of-life care. A nursing academic, who was a member of the ACP committee, explained dying in a familiar environment, concepts and processes of ACP and AD, the importance of autonomous decision-making and caregiving at home using social resources. A public health nurse promoting ACP explained the contents of the ACP workbook and provided specific guidance on how to complete it. Additionally, the nurse explained frequently-asked questions while completing the workbook. Finally, to make AD effective, the nurse explained the importance of discussions with family and health care providers.
Theoretical process of having effects in this study is shown in
In order to demonstrate these effects, the AD completion rate was set as the primary endpoint and the number of discussions with health care providers and family as the secondary endpoint. Additionally, the tertiary endpoints were the degree of awareness of ACP, AD knowledge scale, endorsement of ACP, awareness of the importance of ACP, Autonomy Preference Index (API), and preferences toward end-of-life care. Questions regarding awareness and preferences were constructed by the researcher using previous studies as a reference [
We performed self-administered questionnaires according to the 3 points shown in
For awareness of ACP, we asked whether they had knowledge of AD, LW, and legal representatives (yes/no). For testing AD knowledge, the advance directive knowledge test [
Attitudes toward ACP were evaluated by asking whether they agreed with writing an AD or discussing this with healthcare providers and family (endorsement of ACP), as well as whether they thought this was important (awareness of the importance of ACP). API is a measure of the degree of decision-making regarding medical procedures [
To ascertain their end-of-life preference, participants were asked the following: If there is no chance of recovery from your illness, would you like to receive the following treatments? (Examples given were cardiopulmonary resuscitation, artificial ventilation, and artificial nutrition.) Participants chose one of four answers: 1) yes, I would; 2) leave it to the physician to decide; 3) leave it to my family to decide; or 4) no, I would not.
In order to make comparisons before and after the workshop (before and 3 months after the workshop), McNemar’s test was used for the completion of AD, discussions, ACP awareness and endorsement of ACP. The t-test was used for total scores of AD knowledge Scale, the Wilcoxon rank sum test was used for the awareness of importance of ACP and API, and the marginal homogeneity test was used to analyze preferences toward end- of-life care. Statistical significant level was set at p < 0.05.
This study was approved by the Ethics Committee of Hiroshima University. A written consent form was taken from all workshop participants. Before signing, all participants were explained the purpose of this project, that study participation was voluntary, that they could withdraw at any time, that personal information would be secure, and the method of publication with protection of privacy.
A total of 125 people participated in the workshop; 90 participants responded to all three evaluation points, and 87 who completed >80% of items were analyzed as valid responses.
The basic characteristics of the participants are shown in
Tables 2-5 show the changes before and after the workshop.
The completion rate of making AD is the primary endpoint of this study. The number of participants who responded that they had completed the AD was 1 out of 72 (1.4%) before the workshop, which rose to 9 out of 72 (12.5%) at three months after the workshop (p = 0.008) (
N | Mean (±SD) or N (%) | ||
---|---|---|---|
Age (years) | 83 | 64.1 | (13.4) |
Sex (female) | 84 | 63 | (75.0) |
Living arrangement Couple Parents and children Alone With others | 87 | 36 28 16 7 | (41.4) (32.2) (18.4) (8.0) |
Has primary physicians | 86 | 75 | (87.2) |
Health condition Very good Good Fair Poor Very poor | 85 | 10 57 9 8 1 | (11.7) (67.1) (10.6) (9.4) (1.2) |
Past medical history of surgery/hospitalization | 84 | 47 | (56.0) |
Caregiving experience for terminally ill or serious conditions | 87 | 67 | (77.0) |
N | Pre | Post | p-value | |||
---|---|---|---|---|---|---|
Yes | (%) | Yes | (%) | |||
Change of behavior toward developingadvance directives Completed writing advance directives Discussed with the family Discussed with the physician | 72 74 72 | 1 29 5 | (1.4) (39.2) (6.9) | 9 37 4 | (12.5) (50.0) (5.6) | 0.008a 0.057a 1.000a |
Change of knowledge of advance care planning Was aware of advance directives Was aware of living wills Was aware of durable power of attorney | 86 84 79 | 35 23 52 | (40.7) (27.4) (65.8) | 72 62 66 | (83.7) (73.8) (83.5) | <0.001a <0.001a 0.001a |
The advance directives knowledge test score: Mean (±SD) | 76 | 5.1 | (2.2) | 6.2 | (1.8) | <0.001b |
Chanege of attitude toward ACP: Endorsement of ACP Agreed with making advance directives Agreed with discussing end-of-life care | 79 86 | 76 85 | (96.2) (98.8) | 77 85 | (97.5) (98.8) | 1.000a 1.000a |
aMcNemar test, bt-test.
Total | Pre | Post | p-value | |||
---|---|---|---|---|---|---|
N | % | N | % | |||
Making advance directives is important Strongly agree Agree Disagree Strongly disagree | 76 | 32 41 3 0 | (42.1) (53.9) (3.9) (0.0) | 41 33 2 0 | (53.9) (43.4) (2.6) (0.0) | 0.129 |
Discussion about end-of-life care is important Strongly agree Agree Disagree Strongly disagree | 85 | 72 11 2 0 | (84.7) (12.9) (2.4) (0.0) | 67 16 1 1 | (78.8) (18.8) (1.2) (1.2) | 0.157 |
Wilcoxon rank sum test.
Pre | Post | p-value | |||
---|---|---|---|---|---|
Mean | (±SD) | Mean | (±SD) | ||
The important medical decisions should be made by your physician, not by you. | 43.8 | (30.5) | 46.9 | (35.2) | 0.344 |
You should go along with your physician’s advice even if you disagree with it. | 51.2 | (28.3) | 55.1 | (31.9) | 0.132 |
When hospitalized, you should not be making decisions about your own medical care. | 50.8 | (33.6) | 50.8 | (31.8) | 0.917 |
If you were sick, as your illness became worse, you would want your physician to take greater control. | 41.0 | (30.0) | 43.8 | (31.8) | 0.392 |
Wilcoxon rank sum test.
Discussing end-of-life care with healthcare providers and family are the secondary endpoints of this study. Participants who had discussed end-of-life care with family before the workshop totaled 39.2%, which rose to 50% at three months after the workshop; however, this difference was not significant (p = 0.057). Participants who had discussed end-of-life care with healthcare providers before the workshop totaled 6.9%, and this was 5.6% at three months after the workshop; therefore, there was no change (p = 1.000).
Pre | Post | p-value | |||
---|---|---|---|---|---|
N | (%) | N | (%) | ||
Cardiopulmonary resuscitation Yes, I would Leave it to the physician Leave it to my family No, I would not I cannot decide | 14 26 9 26 5 | (17.5) (32.5) (11.3) (32.5) (6.3) | 8 29 13 26 4 | (10.0) (36.3) (16.3) (32.5) (5.0) | 0.486 |
Mechanical ventilation Yes, I would Leave it to the physician Leave it to my family No, I would not I cannot decide | 4 24 11 37 4 | (5.0) (30.0) (13.8) (46.3) (5.0) | 5 21 12 39 3 | (6.3) (26.3) (15.0) (48.8) (3.8) | 0.893 |
Artificial nutrition Yes, I would Leave it to the physician Leave it to my family No, I would not I cannot decide | 6 17 13 41 3 | (7.5) (21.3) (16.3) (51.3) (3.8) | 7 13 9 47 4 | (8.8) (16.3) (11.3) (58.8) (5.0) | 0.275 |
Marginal homogeneity test. Question “If there is no chance of recovery from your illness, would you like to receive the following treatment?”
Awareness and acquisition of knowledge are the tertiary endpoints of this study. A total of 40.7%, 27.4%, and 65.8% of participants responded that they were aware of ACP (AD/LW/durable power of attorney) before the workshop, which rose to 83.7%, 73.8%, and 83.5%, respectively after the workshop. These differences were statistically significant (p < 0.001, p < 0.001, p = 0.001, respectively) (
Most participants agreed prior to the workshop that end-of-life care and AD writing should be discussed; this percentage did not change post-workshop (p = 1.000, p = 1.000, respectively) (
Preferences for life-prolonging treatment―such as cardiopulmonary resuscitation, artificial respiration, and artificial nutrition―did not change before or after the workshop (p = 0.486, p = 0.893, p = 0.275, respectively) (
Compared to the rate of aging for Osakikamijima, the proportion of the elderly in this study was 54.2%, suggesting that a greater number of elderly participated in the workshop. Among participants aged over 65 years, a high proportion answered that their subjective health was good, which, when compared to prior studies [
The workshop was announced widely in the town’s PR brochure and given that participation was voluntary, we surmise that the participants were an active group of individuals with a high degree of interest in end-of-life care. This group comprised people who were older but healthy and who did not live alone. The proportion of participants with a family physician exceeded 80%. Compared to the percentage obtained through an investigation of 5667 people over 20 (32.8%) [
The primary endpoint of the AD completion rate increased significantly as a result of the educational intervention in this study. Compared to the completion rate of 5.7% after intervention reported by Matsui [
Additionally, there are three reasons that might explain our results: 1) Ease of instructions and provision of examples; we distributed a model AD after the workshop. 2) Selection of influential people as the presenters. 3) Ease of writing the AD; AD from Five Wishes [
As a result of investigating methods through collaboration and coordination with the town government from the planning phase, we believe that the group dynamics on the island foster region-wide concerns, ultimately leading to an increase in the number of people writing AD. In other words, resident participation and empowerment were effective in producing the results. Before the workshop, fewer than half of the participants knew the specific methods of ACP, such as AD and LW; this knowledge increased significantly after the workshop. Familiarity with legal representatives and the knowledge scale for AD also increased significantly, suggesting that changes in attitude toward writing are possible.
Knowledge and completion rate increased, on the other hand, the degree of autonomous decisions about API and preferences for life-prolonging treatment did not change before and after the workshop. Even after the workshop, 26% - 50% of participants responded that the decision for life-prolonging medical treatment is up to the family or healthcare provider, and no improvement to autonomy was observed. Even though autonomy is an important factor for promoting ACP [
This study revealed some issues regarding ACP education in Japan. The results showed a slight increase in the number of discussions with family, whereas this number did not change for discussions with healthcare providers. The mentality to defer decision-making to the healthcare provider on specific medical procedures did not change. One reason for this may be that AD is not legislated. In Japan, there is no opportunity for patients to obtain information on AD or to create one, as regulated by the Patient Self-determination Act. Additionally, there is some paternalism when healthcare providers made decisions because patients were dependent on healthcare providers as “citizens do not know any better regarding medical treatment” [
Promoting ACP without organized legislation may be difficult; however, citizens deserve the best medical care, and the mentality that one cannot consider their own QOL at the end-of-life and that it is the responsibility of the healthcare provider must be changed. For this to happen, efforts cannot fall strictly on citizens (patients) and healthcare providers must be willing to facilitate information exchange regarding end-of-life care, including providing the time for discussions. Both sides must make an effort toward autonomous decision-making. In fact, some studies suggest patients who asked to complete AD or receiving an explanation about AD have a higher AD completion rate [
Given that the AD completion rate increased in Osakikamijima, the empowerment and education intervention for the region’s citizens was effective.
There was a slight increase in discussions with family, but no change regarding discussions with health care providers.
The education intervention increased awareness and knowledge regarding ACP, but did not change the autonomous decision-making process regarding end-of-life care.
In Japan, the legislation does not yet provide a forum for thinking about ACP; however, in the future, citizens will have to change their mentality in order to decide their own medical treatment during their end-of- life stage. At the same time, it will be important for health care providers to approach these issues from their perspectives as well.
YaeTakeshita,MikaIkeda,SayakaSone,MichikoMoriyama, (2015) The Effect of Educational Intervention regarding Advance Care Planning for Advance Directives. Health,07,934-945. doi: 10.4236/health.2015.78111