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Advance care planning (ACP) is an under-utilized process that involves thinking about what kind of life-prolonging medical care one would want should the need arise, identifying a spokesperson, and then communicating these wishes.
To better understand what influences individuals to engage in ACP.
Three focus groups using semi-structured interactive interviews were conducted with 23 older individuals from three diverse populations in central Pennsylvania.
Four categories of influences for engaging in ACP were identified: 1) Concern for Self; 2) Concern for Others; 3) Expectations About the Impact of Advance Care Planning; and 4) Anecdotes, Stories, & Experiences.
The motivations for undertaking ACP that we have identified offer healthcare providers insight into effective strategies for facilitating the process of ACP with their patients.
Advance care planning (ACP) is a complex process that requires a person to 1) think about what kind of life-prolonging medical care (if any) they wish to receive should the need arise; 2) create some means for communicating these wishes; and 3) identify a spokesperson to serve as their advocate should they become unable to speak for themself.1-5
Before people engage in ACP, they need to consider the process worthwhile, and the outcomes beneficial. Given the emotional significance of the subject, ambivalence is understandable. Studies show that few individuals have systematically considered the relevant issues and/or communicated their wishes to those who will need to make medical decisions for them;4, 6, 7 and only 15-35% of adults actually complete advance directives.8, 9 Much work has been done to identify reasons for low completion rates and barriers to effective ACP.10-20 Also, much is known about the mechanics and efficacy of ACP, 2, 4, 6, 10, 15, 17, 18, 21-27 the kinds of life-sustaining treatments patients prefer,7, 28-35 and what parts of ACP matter most to them.7, 16
Yet despite this growing literature, there is a paucity of data about what factors influence people to actually engage in ACP.36 Particular circumstances (e.g., a family member’s urging or witnessing end-of-life care gone wrong)23, 37-40 may prompt individuals to engage in ACP. But there are other reasons as well, and if healthcare providers are to systematically help patients take action, a more detailed understanding of motivational influences is needed.
This paper describes findings from focus group interviews that were part of a larger research project on end-of-life decision-making,41 which included asking participants to think about factors that influenced medical decisions around the end of life. During this inquiry, it became clear that before individuals would undertake the process of ACP, a certain set of motivations needed to be in place. Here, we begin to explore those motivations.
The study was funded by the National Institute of Nursing Research (R21 NR008539) and approved by the Penn State Hershey Medical Center Human Subjects Protection Office. Focus group methodology was chosen because small group interactions promote sharing of experiences, values, beliefs, and feelings to uncover areas of consensus or dissent, as well as their sources.42
Study participants were recruited from three distinct settings: 1) a suburban senior center serving a primarily white, elderly, middle class population; 2) an urban senior center serving a frail, underserved, African-American population; and 3) a breast cancer support group whose members had undergone treatment for breast cancer. From each of these groups, individuals whose health experiences would have raised ACP related concerns were specifically invited to participate. Consistent with standard focus group methodology, we chose small groups to optimize group interactions and to encourage open communication.43
Building on previous pilot work, the study team developed questions and prompts to generate discussion on the topic of interest (see Table 1), and then used semi-structured, interactive interviews to gather data.
Each focus group session lasted 60-90 minutes and was led by an experienced nurse researcher with extensive experience in facilitating focus groups (CD). At the start of each focus group, the facilitator explained the study’s purpose and obtained consent from each participant. Due to the sensitive nature of the discussion, options for follow-up with primary care providers or crisis intervention were provided in case a participant experienced undue emotional distress. (None did.) Each group discussion was taped, transcribed, and then checked for accuracy by the facilitator, before field notes were added to the transcripts.
Two of the research team members (CD and MW) independently reviewed each transcript and created a coding schema that identified recurring themes related to the study question: “What influences or motivates patients to engage in advance care planning?” Using an iterative process, these initial reviewers independently coded the complete transcripts from each focus group and, after reaching saturation on identifying themes and assigning transcript data to them, met to compare results. Differences in coding were reconciled by: 1) discussion about the meaning of the code until agreement was reached, or 2) creation of a new code that captured the content of the statement. Once consensus was reached, a third independent coder reviewed the codes for validity. Subsequent coding discrepancies occurred in fewer than 10% of the comparisons, and all were reconciled successfully.
Following this validation, the entire study team met again to conceptualize categories that would capture commonly occurring themes. The entire study team then met and all categories (and theme assignments) were reconciled as per previously and consensus reached. For reliability purposes, contrary cases (i.e., statements that did not fit any category) were identified to strengthen the coding schema.
Twenty-three individuals participated —suburban senior center (n=9); urban senior center (n=7); breast cancer support group (n=7). All participants were English speaking, lived in central Pennsylvania, and were over 50 years old. Participants’ mean age was 74 years (range 54-87), and 15/23 (65%) were female. Full demographic information is available for only 14 participants: 7/14 (50%) African-American; 9/14 (64%) educated through high school or less; and 4/12 (33%) previously completed an advance directive.
As a preliminary exploration into factors that influence individuals to engage in advance care planning (ACP), we focused on discrete categories of influence based on themes that emerged from the data. Had we recognized that these influences were actually motivators that led people to pursue ACP we might have been able to draw on more traditional models of motivation (i.e. Miller & Rollnick)44 in designing the study.
Four distinct categories were identified that explained participants’ reasons for engaging in ACP: 1) Concern for Self; 2) Concern for Others; 3) Expectations About the Impact of Advance Care Planning; and 4) Anecdotes, Stories, & Experiences. (see Figure 1) No differences between the three focus groups were identified (except as noted below regarding quality-of-life).
The richest category (in terms of both the number of themes contained and frequency) was Concern for Self, which comprised the following five themes:
“I love to drive. I don’t care where I drive, who is with me, whatever… I just love to drive. If somebody were to tell me that I could not ever again get behind the wheel and drive… I would say I don’t want [life-saving medical treatment].”
“If you’re going to be able to deal with life, …be physically able to be up and about, then you want to hang in there. That thing [advance care planning] doesn’t come into effect until I become totally incapacitated and I can no longer fend for myself.”
“You live your life, you live it to the best of your ability, you do good things now and you do it now today…. You should try to be happy and make the most of your health. That’s my philosophy.”
“If you’re mentally incapacitated, life is almost zilch.”
“I mean I’m going to do everything I can to stay healthy and stay alive and be vibrant and useful but if that’s not what God has planned for me then that’s OK too… Once a person has outlived his or her usefulness, then I think it’s time to move on.”
“I wouldn’t want them to keep me alive with any artificial means just to say I’m alive. I would just as soon go at that point. If there’s medical treatment available to maintain a pretty good quality-of-life then I say let’s do it, whatever it is.”
“In the end, even if you survive the treatment and everything, what’s it going to be after that? So my chances are 50-50 to survive this, but what is… my quality-of-life afterwards?”
“I would definitely want to know what my chances of survival are …, if I were in a car wreck, am I going to be a vegetable, am I going to be able to walk again, am I going to be in a wheelchair for the rest of my life?… I know they’re not always predictable, [but] I would like to know the worst and the best-case scenarios.”
“I don’t want to be on a machine unless it’s going to do me some good.”
“If this is temporary, I’m for it. But if I knew I was never going to come out of it, then I don’t want that.”
“I don’t want to be on there no two or three months or nothing like that… [J]ust let me die in peace… I don’t want the machines.”
“If you’re just laying there, don’t know nobody, don’t know your kids, unconscious, don’t know nothing. And you’re on the machine… That’s terrible.”
A second category that emerged as influencing one’s decision to engage in ACP was concern for family, friends, and others who would be affected by the individual’s health problems. Three themes within this category were identified.
“I do know that it is more painful for the person trying to make these decisions… sometimes our family members go through more than we do. I do want my husband when he has to make these decisions [to be] in peace when he makes them… [D]irectives are just the beginning of that kind of thing. For real mental peace it has to be a peace-negotiating thing between human beings.”
“I’d like to know, if you can know this, what position I’m putting my family in. What kind of care would be required both in terms of care and finances…”
I’d be more hesitant to do something if it was going to be more of a disadvantage to my family than an advantage to myself.”
“I don’t want on the machine. I don’t want my child to have to go through that.”
“I have a tendency to think more of my family members than myself and I will take that into consideration.”
“My kids came over to the house together and were talking about this… and the spokesman said, mama you all we got and we’ll do anything it takes to keep you alive and they agreed to it.”
“They [children] can’t make [end-of-life decisions] ‘cause I have my will made up.”
A third category captured individuals’ perceptions about the efficacy of ACP, either to influence the end-of-life care one received, or to realize other goals such as providing helpful, unambiguous guidance to surrogates. Diversity of opinion about the likelihood that ACP would make any difference also influenced participants’ inclination to engage in ACP. Two themes were identified here.
“[Y]ou can’t make an informed decision about it, an advance directive, unless you have all the variables that go into making that from your doctor.”
“I can’t imagine a doctor guaranteeing anything.”
“I would want to have shown me … that they’ve done their research, and they can prove to us that this drug… [can] make your life better.”
“Choices have to be made but choices can’t be made unless you’re given guidelines and percentages and options that include everything.”
The fourth and final category that emerged describes the influence that anecdotes, stories, and experiences have on people’s willingness to engage in ACP. Three themes emerged within this category.
“Like this case now down south, this lady has been on it for years. Her husband, they know there’s no hope, so is there a time limit that you can set? Let’s say that after three months or after six months to pull the plug?”
“[T]he politicians shouldn’t be involved in that. It should have been done between the husband and wife a long time ago.”
“We had to take major action with the head of the family because he was not one to take charge… We were so angry [that he] would let [my mother] go downhill just [so she could still] take care of him.”
“This emotional thing that’s involved here is unbelievable.”
“I had a friend that I had to make a decision about … whether to take him off of life support… They said he could never get any better and he would always have to be on life support. So then we had to decide whether to take him off or not… Then all the kids had to come… That is a hard decision to make.”
“my mother-in-law hung on and hung on the longest time. My husband (her son) kept saying, mom don’t give up, keep trying. She had to literally call on the telephone… She called from the hospital bed and asked if she could let go. She said I can’t hang on anymore and he said, OK mom if you have to, it’s OK. It was shortly after that that we lost her.”
This study identifies thought processes, values, and contextual factors that influence individuals to engage in advance care planning. The discussion that follows will focus on how healthcare providers might operationalize our findings in their efforts to promote advance care planning.
Not surprisingly, Concern for Self emerged as the strongest influence for engaging in ACP. This suggests that by helping individuals see a connection with their own interests healthcare providers can motivate them to invest time and energy in the complex and sometimes challenging self-reflective process that is ACP. As such, healthcare providers can show patients how, as a process for clarifying and communicating what is important to them and why, ACP can help 1) articulate individuals’ near and long-term goals; 2) express any relationships between their spiritual views and specific courses of action; and 3) promote individuals’ being treated with dignity and respect.
Because individuals recognize that end-of-life decisions often have the greatest impact on others, it’s important to help patients appreciate that reflecting on and communicating their wishes can alleviate burden to family and friends.7, 45 Our findings suggest that healthcare providers can reinforce this insight by drawing on individuals’ own experiences and observations regarding end-of-life experiences. For these not only contribute to knowledge, but also elicit strong emotional responses that can influence people’s views about ACP.
We also found that the perceived benefit of ACP was related to participants’ views about its expected efficacy. This suggests that to the extent that we as healthcare providers can increase a person’s trust in physicians and/or the medical system, we can promote ACP.16 For despite the many factors that influence whether a patient’s expressed wishes will prevail,6 whether ACP is considered worth engaging in depends greatly on whether an individual thinks it will likely influence end-of-life medical decision-making.
Because this was a small, non-random sample of middle-aged or older, English speaking residents of central Pennsylvania, generalizability may be limited.16, 46, 47 Such restricted participation is a natural consequence of focus group research, which is not designed to generate statistically significant generalizable findings. However our sample included >30% African-Americans; our methodology allowed for open-ended, in-depth interviews to explore and clarify participants’ concerns, motivations, and underlying values;48, 49 and the themes and categories identified are readily generalizable to other populations.
A second limitation common in interview-based research is social desirability bias, with participants presenting themselves so as to be viewed favorably by others. To minimize this, the facilitator did not indicate approval or disapproval of input, there were no “correct” answers, and group discussions were designed with a free-flowing format that allowed for in-depth exploration of people’s values and their origins.
A third possible limitation is that context —i.e., the realities of confronting these issues—may overdetermine individuals’ willingness to engage in ACP.30, 31 The themes identified, however, are not age- or condition-dependent, and include factors readily applicable to diverse populations.
Though advance care planning is viewed positively by patients and healthcare providers,50 relatively little is known about how people understand ACP and/or what motivates them to undertake this process. Our results identify key influences and provide a framework that healthcare providers can use to more effectively engage patients in dialogue and encourage ACP.
This research was supported by a grant from NIH/NINR (R21 NR 008539-01).
Conflict of Interest:
The authors have no conflict of interest to declare with regard to this research.
Benjamin H. Levi, Departments of Humanities and Pediatrics at Penn State College of Medicine in Hershey, PA. Email: bhlevi/at/psu.edu.
Cheryl Dellasega, Department of Humanities at Penn State College of Medicine in Hershey, PA.
Megan Whitehead, Department of Humanities at Penn State College of Medicine in Hershey, PA.
Michael J. Green, Departments of Humanities and Medicine at Penn State College of Medicine.