Subdividing older adults into groups with differential ACP-related views and needs
Via the practice partners we included 10 older adults for the planned focus groups investigating research question one. As invitations were spread using a snowballing approach we do not have exact data regarding the total number of people contacted, neither regarding reasons for rejecting participation.
We conducted one focus group with five older adults reflecting the proactive profile and one focus group with five older adults predominantly reflecting the social profile, according to the STEM profiles. For the other three profiles (i.e., the rational, the trusting, and the avoiding) we conducted individual interviews with one person at the time.
An important finding was that most people did not clearly reflect one of the STEM-profiles, but rather reflected a mix of two to five different profiles. Our analyses of field notes and focus group and interview transcripts resulted in prototypical descriptions of five different types of older adults. We used the five STEM profiles as a basis and added the additional information gathered in the focus groups and interviews focusing specifically on ACP related views and needs.
On the health fair we talked with 55 older adults about ACP-related topics. Of those participants, 33 older people took the time to read the five prototypical descriptions of older adults with differential ACP-related views and needs which were developed following the focus groups and interviews in study one. With these participants we engaged into longer conversations specifically exploring ACP-related views, experiences and needs referring to one of those five types which the person most identified with. 22 of the 33 participants identified themselves with the
proactive type (67%), four with the
social type (12%), four with the
avoiding type (12%), three with the
trusting type (9%), and none self-identified as
rational type (0%). Across these five types we identified three different needs regarding ACP-related activities (see next section and Table
2).
Of the 55 older adults 38 informed us about their current status in the process of ACP: 32% indicated they had done “everything” already, 45% indicated that they needed to record their preferences (“writing down”), 18% indicated that they needed more information (“information”) and 5% indicated that they would need to be motivated externally to initiate ACP (“motivation”), for instance by attending activities to raise the awareness for ACP. It is important to keep in mind that the majority of people we talked with (67%) self-identified as proactive regarding ACP.
Identifying adequate ACP-related communication strategies per group
When integrating our results from the focus groups, interviews, and from the health fair, we identified three typical types of reactions regarding ACP conversations across the five initially identified types of people: First, a number of people avoid ACP as a topic. These people often identify themselves with descriptions of the
rational,
avoiding or
trusting types of older people. A second group of people showed no or very little motivation for initiating ACP-related activities, while they did not actively avoid ACP-related topics. People in this group often identified with the descriptions of the
social and
trusting types of older people. Finally, a third group of people, those identifying with the
proactive type of older people, were very open in ACP-related conversations and reported having initiated the ACP process already, or even “having done everything” already (see Table
2 for an overview of tailored communication strategies).
The
avoidant group of people avoids talking and/or thinking about ACP. This is because either it does not seem relevant for this group in their current life or some people of this group perceive it as a taboo (see Table
3 for quotes reflecting the views of the different types of older people). The
avoidant group was most difficult to motivate for participation in our research. The few people reflecting this group who we spoke with did mostly not show interest in communication about the topic. However, one person who self-identified with the
avoiding type mentioned that he/she might be interested to watch some short film or to visit an informal meeting about the topic, reflecting the first of the three steps in the ACP process (i.e., motivation).
The second group of people is not motivated to initiate ACP. However, these people do not find it a taboo, neither do they actually avoid talking about this topic. In this group, ACP conversations do not happen, because the older adults think that either their care network or friends and family do know what they wish for the future, or they do not want to bother others with their issues, or because no one seems to take the initiative for such a conversation. With regards to the three steps within the ACP process, this group of people was interested in receiving help with writing down their wishes and ACP-related decisions, reflecting the third step in the ACP process (i.e., writing down). They also often lacked detailed information about possible ACP-related decisions, reflecting the second step (i.e., information).
The third group of people are proactive concerning ACP. In this group of people many initiate talking about the last phase of life or have taken some sort of action already to write down their last will, their wishes for future care, or restrictions to possible future treatments (e.g., deciding against cardiopulmonary resuscitation (CPR)). Importantly, when asking in-depth questions knowledge gaps became apparent sometimes, for instance concerning the relevance of sharing ACP-related decisions with the general practitioner and all relevant health care institutions (e.g., in addition to having their last will stored with a lawyer). This group of people was interested in activities related to all three steps of the ACP process (i.e., motivational activities, information, and writing down wishes and decisions).
Table 2
Description of three types of older adults with different views and needs regarding ACP.
Reactions of different types of older people with regards to ACP: | Avoid talking about ACP & last phase of life. | Do not initiate ACP and talking about last phase of life. Do not see necessity of ACP. | Initiate ACP process. May lack relevant information. |
Most relevant ACP strategy for health professionals: | Motivation | Information | Writing down |
Implications for practice: next steps in ACP process: | • Sensitizing for relevance of ACP. • Motivating to take initial steps in ACP process. • Involving relatives or other care givers. | • Offering information about ACP. • Motivating to take next steps in ACP process. • Recording ACP-related decisions. • Sharing ACP decisions with relevant health care institutions and relatives. | • Checking whether ACP is complete and up-to-date. • Sharing ACP decisions with relevant health care institutions and relatives. |
Table 3
Quotes reflecting differential views of three types of older people with different reaction towards ACP.
1st group: avoiding ACP | “Life is still far too much fun to think about death right now.” (II5) “I think about it often, because it will happen any day now…. After two seconds I quickly think of something else.” (II4) |
2nd group: not motivated for ACP | “Care decisions may be made by my loved ones when I am no longer able to do so myself.” (II1) “I did it [ACP] because my children asked for it. I would not have done the first steps myself, however now I find it very relaxing to know what to expect.” (HFI: person identifying with social profile) |
3rd group: proactive with initiating ACP | “I enjoy exchanging thoughts and feelings on this subject.” (FG1) “I want to be able to trust that a healthcare professional knows my wishes and respects them. This is why I think about my later stage of life in time and arrange what is needed.” (FG1) |