Abstract
Many patients who could benefit from Palliative Care do not receive services because of lack of awareness or misconceptions. This high level of public unfamiliarity combined with inaccurate beliefs equating Palliative Care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. A barrier to widespread public messaging, however, is the scarcity of messages developed with empirical research in public perceptions of the lived experience of receiving palliative care. In this report, we describe qualitative research aimed at identifying the “deep metaphors” associated with palliative care, to provide an empirical foundation for further creative work. We interviewed 8 patients receiving palliative care and 8 caregivers using a qualitative method, Zaltman Metaphor Elicitation Technique, that is specially designed to reveal unconscious metaphors and socially shared associations that participants held about experiencing palliative care. Study participants likened the onset of serious illness as a massive disruption resulting in stunning losses with far-reaching consequences. What serious illness “took away” from them was a sense of certainty about where their lives were going, and these participants described experiencing (1) shame and embarrassment about what was happening to them; (2) a sense that no one was listening to them; (3) feeling lost and uncertain about what to do, feeling stuck; and (4) losing parts of their identity to illness. What they felt in need of, to counter what had been taken away, was (1) validation for what they were going through; (2) agency to determine their own quality of life and have input into their care; (3) guidance to access a network of resources; and (4) regeneration of their self-worth, resulting in a new version of their identity. This research provides guidance for message developers on frames, language, and visuals for future campaigns designed to create public interest in palliative care.
Introduction
Many patients who could benefit from palliative care do not receive services in part because of lack of awareness or misconceptions. While services are limited and referrals often come too late, some patients decline because of misconceptions that accepting palliative care means giving up other treatment or that they are dying; others are just unfamiliar despite the now-widespread availability of inpatient palliative care services. In a 2019 survey of public perceptions, 75% of participants were so unfamiliar with palliative care that they could not give it a favorability rating. 1 Another national survey, also from 2019, found that among persons who considered themselves to be knowledgeable about palliative care, 60% had misperceptions. 2
This high level of public unfamiliarity combined with inaccurate beliefs equating palliative care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. 3 More effective public messaging could increase interest among the general public—and patients with serious illness and their caregivers—in asking for referrals and accepting recommendations for palliative care services.
A barrier to widespread public messaging, however, is the scarcity of messages that have been tested using consumer research techniques. Numerous public health campaigns, including those for gun safety, drunk driving, and secondhand smoke, attribute their success to a method that combines empirical research and professional messaging and copywriting talent.4,5 While the underutilization of palliative care is multifactorial, 6 in this project, we focused on patient perceptions that could be used in public messaging to drive demand. In the approach recommended by a National Academy workshop, 7 empirical research is used to identify how the public sees the issue, and professional writers and strategists develop messages that address public perceptions that are more likely to influence public behavior. Notably, the images of hands and bedridden patients often accompanying palliative care messaging have never been tested in this way, although anecdotal evidence suggests that hands have become a meme for “dying.”
In a prior project designed to develop public messaging for advance care planning, palliative care, and hospice, we conducted a scoping review 8 and a stakeholder process to identify messaging principles, 9 assisted with a national research project aimed at understanding public perceptions about advance care planning, and created a toolkit to equip clinicians, advocates, administrators, and communication professionals to message more effectively. 10 In this report, we describe additional work with a consumer research firm aimed at identifying the “deep metaphors” associated with palliative care to provide an empirical foundation for further messaging work. We decided to focus on palliative care in particular because of the public awareness evidence indicating low public awareness and common misconceptions.
Methods
ZMET interviews
Market research was conducted using the Zaltman Metaphor Elicitation Technique (ZMET®) methodology, an approach drawing from anthropology, psychology, and art therapy that uses metaphors, images, and other nonverbal expressions to uncover people's unconscious emotional needs around a specific topic, which are called “deep metaphors.”11–14 Deep metaphors can be seen as set of unconscious mental frames that extend beyond many cultural differences that reveal aspects of experience that would not be elicited in a typical semistructured interview—to get the things people “won't say out loud.” Because deep metaphors are often considered by respondents to be deeply personal and motivating, this methodology has been utilized successfully for public health messaging by numerous organizations, including the Robert Wood Johnson Foundation and the Bill and Melinda Gates Foundation.
Within these public messaging campaigns, ZMET has been used to shape messaging designed to influence public mindsets, encourage behavior change, and drive demand for specific health services.15–18 In this study, we used the ZMET approach to inform a demand creation strategy by uncovering the unconscious metaphors and socially shared associations regarding palliative care for adults with serious illness.
ZMET interviews were conducted during October 2022, and were all one-on-one in-depth discussions with certified ZMET interviewers with extensive experience (J.S.W., R.D.R.) lasting 60–90 minutes on secure video conference. These ZMET discussions were structured in three steps: Storytelling, Missed Images, and Sensory Metaphors. Before the interview, participants were given the following assignment: “Please collect 4–5 images that express your thoughts and feelings about why you choose an individualized care approach for your life (or: for the person you care for).”
Given the level of misconceptions known to be associated with the term “palliative care”—even among this group of patients who were selected because they were receiving “palliative care”—we used the term “individualized care approach” as a proxy that enabled participants to speak their mind without needing to be “educated” about existing definitions, which could create self-consciousness that constrains the imaginative, associative exploration that is central to the ZMET process.
The homework assignment also included some priming questions around the emotions, decision making, and role of others in their individualized care. These images, which participants gathered individually and independently, from any source they could access, provided a starting point in the Storytelling step, where trained interviewers use nondirective probing techniques (e.g., laddering, metaphor elicitation, exploration,12,14,19 and storytelling).20,21 In the Missing Images step, participants were asked if there were any concepts for which they could not find a representative image. If so, this was followed by similar probes outlined in the Storytelling Step. For Sensory Metaphors, participants were asked for sensorial metaphors (e.g., taste, touch, smell) that represented experiences with serious illness and palliative care.
Participant sampling
Participants were recruited from a qualitative consumer research panel for one-on-one ZMET interviews. Inclusion criteria included 45–65 years; for patients, a diagnosis of serious illness using the Kelley definition 22 (which includes but is not limited to cancer, heart disease, liver failure, chronic obstructive pulmonary disease (COPD), kidney failure, and other diagnoses; dementia and stroke that impaired the individual's ability to participate in an interview were not included) *and* receiving Palliative Care but were not enrolled in Hospice; for caregivers, a responsibility as a direct, unpaid, primary, in-person caregiver for at least three months for someone with a serious illness who was receiving palliative care. For both patients and caregivers, inclusion required that they speak English and that they were able to participate in a video conference interview.
We intentionally did not enroll patient and caregiver dyads so that there would not be duplication of experiences within this sample. Participants were sourced nationwide with geographic and demographic representative spread, as well as a variety of diagnoses. The sample size was determined based on previous empirical market research findings that, for in-depth one-on-one interviews, eight participants per consumer segment is adequate for saturation. 23
Data analysis
The ZMET analysis process uncovers the thought patterns from participants' images and interview responses, revealing deeper emotional meanings and unconscious mental orientations about how people frame the topic. Separate analyses were performed for data gathered in different sections of the interview process to help uncover convergent validity.11,24–26 The Storytelling and Missing Images sections of the interview were coded (J.S.W., R.D.R., K.S.) to identify metaphors, trends, and themes with special attention to sensory metaphors, images, and attributions of human qualities associated with those metaphors and images; video recordings of the interviews and analyses were separately reviewed (A.L.B., M.S.G.) to enhance trustworthiness.
The analysis process began with deep reading and discussion of the linguistic and image trends observed across the sample, based on the constant comparative method. 27 The focus of the analysis is to uncover both the apparent and latent themes brought up by participants. Each participant individually generates a transcript ∼20 pages long. For each participant, the primary interviewer served as primary coder (J.S.W., R.D.R.), and all three coders served as secondary coders. The coding selected and categorized quotations and imagery according to preliminary themes that emerged from the coding process. The resulting collection of preliminary themes was used to identify the final themes presented in the Results below that represent a comprehensive summary of the metaphors used by participants about their experiences with palliative care.
Individual summaries of themes and images from each participant were prepared to ensure that coherence of each participant's experience could be preserved while themes were identified across participants and data sources. Trustworthiness was ensured using triangulation of findings between the analysis team and investigators external to the coding process.
Ethics
This project was discussed with the University of Washington Human Subjects Division, which classified this as market research not subject to formal Institutional Review Board review.
Results
Participants
Participant characteristics are shown in Table 1.
Participant Characteristics
Multiple diagnoses were allowed.
One caregiver participant was younger than the inclusion criteria initially specified, but was recommended by the focus group company because she had fully undertaken the caregiving responsibility we had assumed would require a minimum age of 45 years in our inclusion criteria, the investigator team discussed this and made a decision to include her.
COPD, chronic obstructive pulmonary disease.
Themes
Participants experienced the onset of serious illness as a massive disruption
The images they chose to bring to the interview and metaphors they expressed suggested disaster—disruptions that strained and threatened their capacity to adapt. For example, one participant likened their illness to a California wildfire: “it started all of a sudden and my life was burning and wasting away.” Another participant likened their illness to a transformation in reverse: “I used to be this blue butterfly and I reverted to being this caterpillar.” Other metaphors for the illness included a glacier crashing into the ocean, a lightning strike, and falling into a dark pit. “I was powerful, very daring, and thought life was good. I'm not that way anymore,” said one patient.
What serious illness “took away” from them was a sense of certainty about where their lives were going
Participants—both patients and caregivers—experienced: (1) shame and embarrassment about what was happening to them, being ashamed of feeling ill and weak, and not wanting to ask for help because “It makes you feel very small in your own eyes. It feels like you're a failure.”; (2) a sense that no one was listening to them, as evidenced by providers asking them to tell their story “over and over and over”; (3) feeling lost and uncertain about what to do, feeling stuck, seeing “signs pointing multiple ways; we didn't know which way to go or what to do” and (4) losing parts of their identity to illness, even being “reduced to a number.”—even friends “don't ask you how you're doing, they ask you how treatment is. It can be very easy to think that's all you are.”
What participants felt in need of, to counter what had been taken away, was provided by palliative care in the following ways
(Table 2). (1) validation for what they were going through, with a sense of connection and of feeling heard because “It's not just all about the medical, [my doctor] treats me as a whole person”; (2) agency to determine their own quality of life and have input into their care, realizing “There is power in this illness, but its power is how much I give it over me”; (3) guidance to access a network of resources, not from a doctor giving you “prescriptions from on high” but with clinicians as people you work with to determine your care; and (4) regeneration of their self-worth resulting in a new version of their identity: “I'm working towards something and finding beauty in it.”
Themes Expressed in Quotes Transcribed from Interviews
Overall participants explained that while illness takes, palliative care gives
One participant likened palliative care to feeling like “It's like a choir because there's so many people all singing together…they sing into me…with solos where maybe the oncologist steps forward to take the spotlight in that moment, but there was also the reassurance of everyone being there, ready to step forward. Another participant brought images of puzzle pieces, talking about how ‘it took a lot of different people’ to provide the care they needed, the care ‘didn't fall into place at once’, and ‘everyone had a different piece to play’. Another chose an image of palliative care as a person being pulled up a mountain by another person reaching down to take their hands. Another participant spoke of doing ‘the dance of life’, saying ‘There's hard times. There's sad times. But there's wonderful times.’ And you just have to keep going through it regardless.” This participant said “you don't give up, you just keep going.” Finally, a caregiver brought an image of a gramophone in black and white filling a large white space with colorful music. The gramophone playing the record was her grandmother, and the medical team was represented by a hand “kind of overseeing the process,” all working together to create this “beautiful, colorful thing.”
The images chosen by participants, summarized in Table 3, suggest a visual language that could be used in public messaging.
Themes as Expressed in Images Chosen by Participants
Discussion
Understanding how palliative care benefits patients could enable the creation of public messages that introduce the benefits of palliative care in the way that patients experience those benefits. Thus, this research aimed to draw upon the lived experience of persons receiving palliative care and caregivers to allow the participants to surface and describe metaphors that reveal their unconscious mental frames for how palliative care improved their lives. These metaphors can be used to create messages that respond directly to patient and caregiver experiences of the benefits of palliative care. However, a caution in using these results is that the metaphors are not in themselves the messages—these metaphors could inspire, animate, or suggest visual language for messages that engage the public in wanting to know more about palliative care.
The overarching metaphor is simple: “illness takes, palliative care gives.” For these participants, serious illness was a massive disruption, and the themes identified in this study may best be understood for their relevance to messaging when paired as “what I'm going through” and “what I need.” The experience of shame and embarrassment related to having a serious illness can be addressed with messages highlighting palliative care as offering validation and connection. The experience of not being listened to can be addressed with messages showing how palliative care can restore a sense of agency and involvement in decision making.
The experience of feeling lost and uncertain can be addressed with messages illustrating how palliative care can provide guidance. The experience of having one's identity stolen by illness can be addressed by messages evoking a feeling that palliative care can enable a person to reclaim their identity—not by “fixing” problems but by providing the conditions that enable the person to regenerate an updated identity that gives permission to “not have to be the person that you were before”—but to continue to grow in new ways.
This research was designed to provide data that could form an empirical basis to future messaging work to build campaigns, and it has strengths and weaknesses. The strengths include a novel, evocative methodology utilized by an experienced team; a diverse participant sample; participants who had substantial experience with palliative care; and inclusion of patient and caregiver perspectives. The insights provide deeper insights into the benefits of palliative care than have been described in other studies aimed at describing a good death or elements of palliative care.
Also, the evocative techniques used in this project suggest language and visual cues that provide direction for message creation. The weaknesses are that the findings may not be completely generalizable and may not reach some audiences. That said, this research can be used to strengthen existing messages: it suggests, for example, that “an extra layer of support” might be more evocative if depicted as a force that lifts you up, rather than as a blanket that weighs you down.
The issues not raised by participants are also worthy of mention. Participants did not bring up dying or death. Instead, they did talk about “uncertainty about the future,” and this framing may be useful in messaging and clinical communication. Nor did participants discuss their “bucket lists.” 28 Instead, they talked about everyday thoughts and acts that held meaning, “no matter what else is going on,” such as the small act of laying out their spouse's clothes for the next morning on the dresser every evening.
The type of consumer research we conducted is typically done by marketers, held confidentially, and never published. Our intent in sharing these findings is to stimulate our field's ability to engage in fresh thinking, writing, illustration, and photography that will supercharge public messaging—resulting in patients and caregivers who perceive that palliative care can enable them to move from devastation to clarity, and to feel motivated to press forward in the face of their illness.
Footnotes
Funding Information
The John A Hartford Foundation, Cambia Health Foundation.
Author Disclosure Statement
No competing financial interests exist.