Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participants
2.3. ACP Discussion Intervention
2.4. Data Analysis
2.5. Trustworthiness
2.6. Ethical Considerations
3. Results
3.1. Participants
3.2. Themes
3.2.1. Theme 1: Refraining from Discussing EOL Care
Wishful Thinking
“I want my health to be better and better, without pain … [I want] to maintain my health condition … no more worsening…. I would like to take care of myself.”(P3)
Feeling Uncomfortable with the Topic
“I am old with ill-health. I have a headache when I think of this topic.”(P15)
“He can’t understand what you have just said. He would not be able to imagine what would happen by then. He didn’t think about such poor situation [health status]…. He cannot digest the information you told, I think. He is not interested in these, probably he is not in a good mood. I don’t want him to think too much. The more he think, the more difficulty for him to get recover. The video may make him more depressed.”(C17)
Finding the Information Difficult to Understand
“It isn’t necessary to think about EOL care. First, I don’t know how to choose [among the treatment and care options]. Second, I don’t understand. I will think about it when the time comes. I don’t have plans for that yet.”(P21)
“It is difficult for him to understand the concept of EOL care and advance directives. It is also difficult for us to these to him.”(C2)
Viewing Saving Life as an Overriding Goal of Care
“So you teach me to refuse resuscitation? [Then,] how can the doctor save you [my life]?”(P10)
3.2.2. Theme 2: Remaining in the Here and Now
No Urgency in Discussing ACP
“It’s hard to tell [the future] as my health condition could change.… It is difficult to tell you my EOL care preference. I have not thought about it because I am still healthy. I don’t know how to set EOL care goals.”(P4)
Letting Nature Take Its Course
“I don’t have any opinions on EOL care. Just let it be! I will think about it when my health gets worse…. God has a plan on when to take you away. When it is the time for you to leave the world, you’ll have to.”(P19)
Living in the Present Moment
“Health is the most precious thing…. The most important thing for me is that I can take care of myself and dine in a restaurant. Other than that, I have nothing to hope for.”(P7)
“Regarding my health, it is difficult to tell about the future … There is no doubt that being able to eat, sleep, and walk are the most important and essential things for living now.”(P22)
3.2.3. Theme 3: Relinquishing Responsibility over EOL Care Decision-Making
Having Trust in Healthcare Professionals
“I won’t make a decision on EOL care beforehand. Let the doctor decide [for me]. I consult the doctor because I trust him. I will agree with his decision.”(P10)
Allowing Flexibility for Family Members
“My views … by the time … let my son make the decision [for me] …. At the last stage of life, suffering would only last for a short period of time. If you keep on like this [being placed on life-sustaining treatments] … my children would be heartbroken when seeing that situation, so let them decide which treatment would be the best [for me] by then. Not necessary to think much about it [now].”(P12)
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Participant | Age | Gender | Marital Status | Education Level | Living Alone | Religion | No. of Diagnosis | Frailty Score | No. of ACP Session | Family Member Present at the ACP |
---|---|---|---|---|---|---|---|---|---|---|
1 | 68 | M | Married | <Primary | No | Buddhism | 5 | 2 | 2 | Wife |
2 | 87 | M | Married | Secondary | No | No | 5 | 3 | 2 | Son |
3 | 84 | F | Widow | <Primary | No | Christianity | 8 | 4 | 2 | 2 daughters & a son |
4 | 78 | F | Married | <Primary | No | Buddhism | 3 | 1 | 2 | Husband |
5 | 72 | M | Married | Secondary | No | Buddhism | 5 | 2 | 1 | Wife |
6 | 86 | M | Married | <Primary | No | No | 4 | 2 | 1 | Wife and son |
7 | 75 | F | Widow | Primary | Yes | No | 2 | 3 | 2 | No |
8 | 77 | M | Married | Primary | No | Christianity | 9 | 3 | 2 | Wife |
9 | 78 | M | Married | Primary | No | Christianity | 5 | 1 | 2 | Wife, daughter & domestic helper |
10 | 89 | M | Married | Primary | No | No | 3 | 2 | 2 | Wife |
11 | 84 | F | Widow | >Secondary | Yes | No | 5 | 2 | 1 | No |
12 | 81 | M | Married | Primary | No | Ancestor worship | 3 | 3 | 2 | Wife |
13 | 77 | M | Married | Secondary | No | Catholicism | 11 | 2 | 2 | Wife & son |
14 | 79 | F | Married | >Secondary | No | Catholicism | 4 | 3 | 2 | No |
15 | 70 | M | Married | <Primary | No | No | 7 | 3 | 2 | Wife |
16 | 84 | M | Married | Secondary | No | No | 7 | 4 | 1 | No |
17 | 91 | M | Married | Secondary | No | No | 8 | 1 | 1 | Wife & daughter |
18 | 83 | M | Widower | <Primary | Yes | Ancestor worship | 8 | 1 | 1 | No |
19 | 80 | F | Married | >Secondary | No | No | 3 | 1 | 1 | Husband |
20 | 67 | M | Married | >Secondary | No | Catholicism | 2 | 1 | 2 | No |
21 | 73 | F | Married | <Primary | No | No | 4 | 4 | 2 | Husband & domestic helper |
22 | 81 | M | Married | Primary | No | Ancestor worship | 5 | 4 | 1 | Wife |
Theme | Subtheme |
---|---|
Refraining from discussing EOL care | Wishful thinking |
Feeling uncomfortable with the topic | |
Finding the information difficult to understand | |
Viewing saving life as an overriding goal of care | |
Remaining in the here and now | No urgency in discussing ACP |
Letting nature take its course | |
Living in the present moment | |
Relinquishing responsibility over EOL care decision-making | Having trust in healthcare professionals |
Allowing flexibility for family members | |
Supporting shared decision-making |
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Share and Cite
Wan, Z.; Chan, H.Y.L.; Chiu, P.K.C.; Lo, R.S.K.; Cheng, H.-L.; Leung, D.Y.P. Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations. Int. J. Environ. Res. Public Health 2022, 19, 5358. https://doi.org/10.3390/ijerph19095358
Wan Z, Chan HYL, Chiu PKC, Lo RSK, Cheng H-L, Leung DYP. Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations. International Journal of Environmental Research and Public Health. 2022; 19(9):5358. https://doi.org/10.3390/ijerph19095358
Chicago/Turabian StyleWan, Zoe, Helen Y. L. Chan, Patrick K. C. Chiu, Raymond S. K. Lo, Hui-Lin Cheng, and Doris Y. P. Leung. 2022. "Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations" International Journal of Environmental Research and Public Health 19, no. 9: 5358. https://doi.org/10.3390/ijerph19095358
APA StyleWan, Z., Chan, H. Y. L., Chiu, P. K. C., Lo, R. S. K., Cheng, H. -L., & Leung, D. Y. P. (2022). Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations. International Journal of Environmental Research and Public Health, 19(9), 5358. https://doi.org/10.3390/ijerph19095358