In a forward to a review1 on the changing relational interface of medicine and society, Neuberger states that systems of health care should begin with the “needs, wishes, and values” of those they serve. In veterinary medicine, such an approach places client expectations at the center of service provision. It necessitates the imperative to ascertain the expectations of clients and then institute best practices to meet and exceed those expectations. Evidence-based innovation in service provision can have profound implications for quality of care. Quality of care, as extrapolated from the human medical literature to the veterinary medical context, is directly associated with client satisfaction,2 which has major implications for increased adherence with medical recommendations, greater client retention, lower rates of malpractice suits, greater profitability, and increased client referrals.3 Across the broadest scope, health-care providers’ attention to client expectations is in everyone's best interests: the client, the patient, and the health-care service.
Despite the centrality of client expectations, studies in the area of veterinary client expectations have been limited.4–6 Case4 identified that clients expect kindness, consideration, and respect; to be given all the information they want on their pet's medical condition, their pet's behavior, and how to keep their pet healthy; to have all their concerns heard and addressed; and themselves and their pets to be treated as individuals. More recent studies5,6 identified that clients expect to be fully informed regarding their pets’ health care, have information provided in a frank and forthright (ie, up-front) manner and in understandable terms, and be attentively listened to as they share their personal perspective. They also expect to be asked appropriate and meaningful questions to ensure the proper care of their pet, to be presented with multiple options for care—and be respected for the options they choose—and to care for their pet within a valued veterinarian-client partnership.6 Regarding the monetary aspects of service, Coe et al5 determined that clients expect the veterinary care of their pet to take precedence over the details of payment and that the veterinarian rather than client be the one to initiate discussions of cost.
The studies by Case4 and Coe et al5 characterized a number of aspects of veterinary-client-patient communication as important, most notably in relation to the exchange of information. Information as a commodity is highly valued; all things considered, it is uncertainty that drives people to seek health-care services in the first place.7 Given the value of information, its importance as a stand-alone component of veterinarian-client-patient communication becomes readily apparent. Over the past decade, the rapidly expanding body of literature on veterinarian-client-patient communication has focused on the process aspects of communication, particularly how information should be provided and why. To our knowledge, the content aspects, or what information should be given and why, has not yet been highlighted as a stand-alone component of veterinarian-client-patient communication, leaving a gap in empirical knowledge as how to most effectively communicate with veterinary clients.
Since the early 1960s,8 an extensive body of knowledge regarding patient expectations for care has accumulated in the human medical literature. Expectations for care have been studied within different medical specialties, medical care contexts, and patient and caregiver populations.3,9–13 Of the 10 most commonly addressed categories of patient expectations, information is that which is most commonly addressed.3 Studies in human medicine have focused on expectations related to the quality of information (accuracy and truthfulness),14–16 type of information (diagnosis, prognosis, treatments, adverse effects, and quality of life),15–17 need for information (related to the type of and time since diagnosis),18–20 preference for information (related to numerous patient, physician, and situational factors and ranging from a minimal amount to as much as possible),3,17,21–26 function of information (understanding, decision making, and future planning),19,27,28 psychological benefits of information (reduced psychological morbidity and enhanced psychological adaptation),21,24,29–33 and outcomes of information (knowledge, understanding, recall, compliance, health status, recovery, quality of life, coping, psychological wellness, and satisfaction).30,34–38
Considering the similarities between veterinary and human medicine,39 much of what informs best practices in human medicine may be applicable within veterinary medicine. At the same time, there is the imperative for the veterinary profession to establish its own foundation of knowledge for application in this unique field. Presently, there is minimal empirical evidence as to what clients want to know and why and how veterinarians can best provide services to meet clients’ information expectations. Furthermore, what is known, on the basis of studies thus far,4–6 is derived from primary care practice. An area of specialty practice in which clients may have particularly high and ongoing needs for information is oncology, wherein the unpredictability of both cancer and response to treatment precipitates ongoing uncertainty.40 Shedding light on the information expectations of clients would provide oncology services an opportunity to augment communication strategies to better enable clients to successfully manage their pets’ treatment and disease progression, and in this manner, promote the best interests of patients, clients, and service personnel. Whenever client expectations are met or exceeded, the opportunity for best outcomes becomes possible, making identifying and fulfilling expectations an inherent goal of quality veterinary care.
The overall purpose of the study reported here was to determine the expectations of clients accessing oncology care services at a tertiary referral center for dogs with life-limiting cancer. In conducting this study, the foremost expectation identified was information, which was subcategorized into the content aspects of information and the process aspects of information-giving. This report is focused on the content aspects of the information expectations of clients, specifically the quality of, type of, variation in, and function of the information expected. Details of the process aspects of information-giving, or in other words, the communication expectations of clients, are reported separately.41
Materials and Methods
Study design—The study consisted of 30 semistructured interviews with pet owners who were seeking cancer treatment for their dogs from the referral oncology service of the OVCHSC in Guelph, ON, Canada. The study protocol was reviewed and cleared by the University of Guelph Research Ethics Board. Pet owners were interviewed at the early, middle, or late stage of their dog's cancer treatment program. For each stage, 10 interviews regarding 10 dogs were conducted. At the time of each interview, the primary caregiver for each dog completed a short demographic form and the LAPS,42 a widely used questionnaire with established psychometric properties for measuring the human-animal bond.
General information obtained from the primary caregivers included their age, level of education, and annual household income; the number of routine visits with their dog to their family veterinarian; and previous and current pet ownership. Information regarding the dogs included age, sex, age at time of acquisition, and the type of cancer. On the basis of the scores derived by use of the LAPS, attachment of the owner to the pet was categorized as follows: score of 54.9 (SD, 9.2), very attached; score of 44.8 (SD, 10.3), somewhat attached; score of 32.6 (SD, 9.3), not very attached; and score of 26.2 (SD, 13.6), not at all attached.43 The interviews were conducted over a 7-month period (April to October) during 2009.
As classified by Kravitz8, client expectations were defined as value expectations:
expressions of desire (what is wanted), necessity (what is perceived to be needed), entitlement (that which is owed or to which one has a right), normative standards (that which should be), or importance (a hybrid category since wants, needs, and rights may all be rank ordered in importance).
Study participants—Participants, as single owners or co-owners, were prospectively recruited from the clientele of the oncology service at the OVCHSC as a convenience sample. When more than 1 family member participated, demographic and LAPS data were collected from the self-identified primary caregiver. Clients were considered eligible for study participation if their dog had any type of life-limiting cancer and was receiving any form or combination of ongoing treatment (surgery, radiation therapy, or chemotherapy) during the early, middle, or late stage of treatment as defined by the specified treatment protocol. Treatment programs ranged from 2 weeks to 6 months in duration. Those clients categorized as having dogs in the early stage of treatment were interviewed during 1 of the first 2 appointments for the treatment program and were designated as early-stage clients. Those clients categorized as having dogs in the middle stage of treatment were interviewed at the midpoint of the expected duration of the treatment program and were designated as middle-stage clients. Those clients categorized as having dogs in the late stage of treatment were interviewed during 1 of the last 2 visits of their treatment program and were designated as late-stage clients.
Recruitment followed a stepwise process. Potential participants were initially identified by the oncology technicians and oncologists through screening the oncology appointment schedule. An oncology team member then briefly explained the study to the owner either during a telephone call that preceded an upcoming appointment or in person during an appointment. If the client was interested in participating, permission was obtained for the principal author (DLS) to contact the client to describe the study in detail. The principal author then either contacted the client by telephone prior to the dog's next oncology appointment or, in the case of early-stage clients, in person at the time of their dog's first appointment. The purpose and format of the study were explained. Those choosing to participate were presented with the informed consent form during the appointment. Written consent was obtained in person.
Interview structure—A semistructured interview, following 1 of 2 interview guides (Appendix) that each contained a series of standardized, open- and closed-ended questions was conducted to explore each client's perceptions, experiences, and expectations of the oncology care service. One interview guide was for use among early-stage clients and the other interview guide was for use among middle- and late-stage clients. The 2 interview guides differed only in relation to an expansion of 1 question (question 4) to create 2 questions to identify potential changes in expectations through time and a slight variation in the wording of another question (question 7) to account for time differences. The interviews (1 interview/dog) were scheduled to be 1 hour in duration and conducted by the principal author in a private office. Interviews involved the primary caregiver alone or the primary caregiver and another family member. When more than 1 family member participated in an interview, comments from both interviewees were recorded for later analysis. An intentionally curious, dispassionate, and nonpartisan interview stance was taken throughout the interviews. Interviews were recorded with 2 devices synchronously.a,b The resultant audio recordings were transcribed verbatim in orthographic format by a professional transcriptionist. The transcriptions were reviewed by the principal author in tandem with the audio recordings to ensure uniformity of quality and accuracy of the transcribed interview data. Words that were inaudible, implied, or adjusted in tense are reported in square brackets to most clearly represent the findings. In addition, client, patient, and oncology service provider names are replaced with nonidentifying descriptors in curly brackets to maintain anonymity.
Data analysis—Demographic data (obtained from each dog's primary caregiver) were summarized to provide general descriptors of the participant and patient populations. The LAPS scores (obtained from each dog's primary caregiver) were summarized (mean, SD, and range) to provide a quantitative measure of participants’ emotional attachment to their dogs. Thematic analysis44 of the transcripts from the interviews involving all participating primary caregivers and 13 co-owners was performed groupwise by the stage of the treatment (10 interviews/stage of cancer treatment). Initially, interesting features of the data were coded to generate a listing of codes supported by data extracts. The codes were then sorted into subthemes, resulting in a collation of the relevant data extracts within each subtheme. Related subthemes were drawn together via mapping to create main themes. The interrelationships between these themes were then defined and described. This process required multiple passes through each transcript, among transcripts, and among the 3 transcript sets generated on the basis of stage of treatment to identify similarities and differences. Thematic analysis is a recursive rather than linear process, involving back and forth movement between the phases of analysis.44 As a qualitative study, the data generated were words, not numbers; hence, the findings are reported as descriptive summaries. Although some general frequency patterns were noted, the results do not represent a quantitative analysis and therefore were not amenable to statistical generalizability.
Results
Client and patient demographics—Thirty-three individual owners or co-owners of dogs with life-limiting cancer were invited to participate in the study; the response rate was 91%, and 30 dogs were represented by the participants. Nonparticipants were individuals with dogs in the early stage of treatment. Seventeen interviews involved individual participants, whereas 9 interviews involved a husband and wife; 4 interviews involved mother-daughter dyads. Thus, the study included 43 interviewees. Among the 30 primary caregivers, 22 (73%) were female and 26 (87%) were between 30 and 64 years of age (range, 18 to > 65 years). The primary caregivers’ education levels varied: of these persons, 3 (10%) had less than a grade 12 education, 7 (23%) had a high school education, 11 (37%) had a college or university education, and 6 (20%) had a postgraduate education. Three (10%) primary caregivers had an alternate education (eg, trade certification). With regard to annual household income among the 30 primary caregivers, 2 (7%) reported being in the ≤ $35,000 category, 3 (10%) reported being in the $36,000 to $60,000 category, 8 (27%) reported being in the $61,000 to $100,000 category, and 15 (50%) reported being in the > $100,000 category; 2 primary caregivers did not report their income category.
The median number of routine visits to the family veterinarian made by owners and the dogs included in the study was 2/y (range, 1 to 12/y). Twelve of the 30 (40%) primary caregivers had previously accessed the OVCHSC, either with the dog represented in the study or with other pets; 2 of these pets had undergone cancer treatment. Of the primary caregivers, 26 (87%) grew up with 1 or more pets, 25 (83%) had owned another dog as an adult (other than the dog represented in the study), and 17 (57%) currently owned > 1 pet.
Of the 30 dogs with cancer, 14 had multicentric lymphoma, 3 had appendicular osteosarcoma, 3 had a mast cell tumor, and 3 had hemangiosarcoma; 7 dogs had other types of cancer. The dogs’ mean age was 8.7 (SD, 2.5) years. Eighteen (60%) were male, and all dogs included in the study were neutered. Twenty-three (77%) dogs were acquired at ≤ 6 months of age.
Comparison of the demographics of the early-, middle-, and late-stage clients (ie, the primary caregivers) or their dogs revealed that the data were essentially uniform across groups with the exception of variation in participant annual household incomes, number of pets in the home, and the types of cancer among the dogs. Even the LAPS scores were comparable among the 3 groups. Mean score for both the early- and middle-stage clients was 60.9 and that for the late-stage clients was 59.7; the overall mean among those 30 primary caregivers was 60.5 (SD, 6.6; range, 40 to 69). The early-stage clients were in the highest 2 annual household income categories (with 9 persons in the > $100,000/y category); the middle- and late-stage clients were more evenly distributed between the highest 2 categories as well as having 3 and 2 participants in the lowest 2 categories respectively. Most of the early- (n = 7) and late-stage clients (6) had > 1 pet, whereas most of the middle-stage clients (6) had just the 1 pet. Clients in the early- and middle-stage groups each had dogs with 1 of 6 types of cancer, whereas clients in the late-stage group had dogs with 1 of just 3 types of cancer (lymphoma [n = 6], osteosarcoma [3], and hemangiosarcoma [1]).
Expectations for information—From the comments recorded during the 30 interviews with 43 clients, it was evident that the participants’ expectation for information was qualified by one central clear-cut criterion: it had to be the truth. Participants did not want the situation “sugar-coated,” “buttered-up,” or “made prettier” than it really was. Instead, they wanted “the straight goods,” “the truth,” “the facts—good or bad” so they could “deal with it as best they [could],” avoid “surprises” and “disappointment,” and “be prepared.” They were adamant in wanting to face whatever it was directly and deal with the reality of the situation, rather than be sustained with a moderated version that could result in “false hope.” As 1 client remarked, “I was never given any false hope here, which I think is really important. What I did get is the facts—no promises—but I got the facts. And what else can people offer? You need the truth.”
Participants wanted to be informed about all aspects of their dog's cancer and its treatment from the beginning (ie, diagnosis) to the end (ie, the expected outcome). Most participants wanted to know about the cancer itself and what the natural course of events would be without treatment; the treatment options available and associated prognoses, including the pragmatic details of financial, time, and emotional investments required; and the details of what the treatment process would entail. These details included information about the diagnostic and monitoring procedures needed; potential treatment effects, adverse effects, and complications; expected time lines for response, remission, and relapse; and potential for cure. This is clearly captured in the words of 1 client as she reminisced about her initial consultation:
I really needed their guidance as to what was appropriate to do and what my options would be in terms of therapy for her… laying out what [was] possible, right from doing nothing to doing half body radiation, so everything from nothing to the most you could possibly conceive of doing to try and effect cure, if you want to look at it that way. And what the percentage response was, what the side effects were, and more pragmatically what the cost was, both in terms of time and money, and emotional input too. So, all those things I needed to hear. I needed to hear those things.
Importantly, the interviewed clients also wanted to know how to measure their dogs’ quality of life, because the prevention of undue suffering was deemed fundamental to engaging in and continuing treatment, and when “enough is enough,” specifically when it would be “right” and “best” to discontinue treatment or euthanize.
Effects of time, background knowledge, and preferences on expectations for information—Participants’ expectations for information varied over time. As reflected in the discussions of the early-, middle-, and late-stage clients, the expectation for information was highest in the early stage of their dog's treatment when the cancer situation was completely novel (when they were gathering “the facts” and seeking “guidance” to choose the course of action) and lowest in the late stage of their dog's treatment, suggesting that their expectations had been met over time. As 1 client recalled, “We had a lot of questions on what to expect and what would happen. We had no idea. We were blind coming in. A little bit more informed now, ‘cause you learn from experience.”
Participants had diverse information backgrounds. Most participants arrived at the oncology service with only a rudimentary appreciation of their dog's specific type of cancer and the potential treatment options. However, there were some exceptions, with a few clients who were better informed either through communication with their family practitioner or through Internet-based research. Those who were uninformed generally based their opinions on what they knew about cancer in humans. For example, 1 client was worried that his dog might become “nasty” after limb amputation, saying, “I mean, I have nothing else to compare it to other than your human experiences,” explaining that he had “seen that people who lose limbs can become rather rude and mad at the world.” Many participants assumed the adverse effects of cancer treatment would be the same as they are in humans and considered this similarity “scary” because they feared a similar “toll” on the body of their dog. Instead of thinking of different cancers with different disease patterns, treatment responses, and associated prognoses, they tended to generalize from one cancer to another.
Although previous experience with cancer was not formally presented as an area of discussion in the study interviews, most participants voluntarily raised the topic. In half of the interviews, participants referred to their experiences of cancer with immediate and extended family members, friends, and coworkers, and 2 persons self-identified as survivors. Nearly the same proportion reported cancer (treated or not treated) affecting previously owned pets, sometimes gauging their current experience with that of the past. Just a few persons overtly pointed to their lack of experience with cancer. Although previous experience influenced the degree of awareness and specific information needs of each of these participants, there was no evidence to suggest that it influenced their overall information needs. On the contrary, most participants expressed expectations for as much information as possible, independent of experiential background.
Previous experience also influenced the attitudes and decisions of the participants, as evidenced in the following client's comment,
{Niece} has been cancer-free for 4 years now, so there's hope… Maybe that experience with {Niece} and the end result—and [then] we found {Patient} had cancer—maybe we're a little more positive about the whole thing. Because otherwise, as soon as you hear the word “cancer,” you're like, “Oh, that's it. You're done.” And maybe even more so when you're thinking about a dog.
Participants’ preferences for the amount of information provided varied. Although most participants wanted to know “as much as possible,” a few appeared to be satisfied with substantially less. At 1 extreme, the need for information was intense, as appreciated in a particularly passionate rendering:
I needed to know if we did nothing. And I needed to know if we did everything. And I needed to know if we did in-between. I needed to know. I needed to scientifically know… Give me—you have the information—give me that.”
This participant continued, “Most owners don't need to know every detail, but I feel I do.”
In contrast, a few participants were very comfortable with comparatively little information despite openly having acknowledged its importance. Instead of needing to know “every detail,” these individuals appeared to rely on trust in the expertise of the oncology service personnel. As 1 participant openly acknowledged, “So some of the technical things, it doesn't matter to us ‘cause we don't know. We wouldn't have any input in any case, right? So, I mean our job is to trust the experts, and they're the experts.”
Of interest, 2 clients, when asked, were unable to name the type of cancer their dog had. In fact, in stark contrast to the participant who needed to know “every detail” about every potential prognosis, another reported having “blocked out” his dog's prognosis, saying,
I was doing some filing, and trying to get all his records alphabetical, and I came across this 1 piece of paper and read it: 4 to 7 months. Now I know they gave it to me because I had it, but I don't remember reading it, or I chose to ignore it. I'm sure they told me—they almost have to tell you that—but I chose to block that out, which is probably a good thing.
With this in mind, it is possible that client may have also “blocked out” the name of his dog's cancer. Compared with most participants who insisted on as much information as possible, some appeared to manage better with less.
Importance of information with regard to clients’ trust, decisions, and preparedness—Information enabled trust and confidence in the oncology service. Through exposure to the expertise and technology the service could offer while learning about their dog's cancer and options for treatment, participants developed the trust and confidence necessary to move forward in undertaking a cancer treatment program. As 1 client explained it,
The sense of knowing that they're knowledgeable… like, I'm not the type of person to just put my dog in someone else's hands… being blind to what's going on. I spent hours and hours of research—days and days of research—so I was very well-researched before I came in with millions of questions. Every question I had, they were able to very thoroughly answer it. They answered questions I didn't have, that I should have had, and I knew I wanted a certain protocol and they were automatically going to use that protocol…. They've never shown me a side where I've questioned their ability…. Virtually every visit they kind of reaffirm their ability as far as their knowledge and their wisdom.
Later in the interview she indicated,
Just having that comfort of someone to fall back on that you trust explicitly is huge when you're in this situation, where you're vulnerable and you don't know what to do, and there's nothing you can do. So to hand your pet over to someone you trust so much is… (filled with emotion, she is unable to find the words). I'm optimistic—very optimistic—that “yes,” they will help me make decisions in the future for {Patient} and provide me with their knowledge of the situation and their wisdom… I have complete trust in them.
Information was needed to make informed decisions. “Doing” what was “right” and “best” was repeatedly expressed by clients as the universal underlying directive and guiding algorithm underpinning care. Participants took this responsibility seriously. One client alluded to the burden inherent in the decision-making process by contrasting his or her situation to the human context, saying, “You know, at least people get to make their own decision most of the time, where[as] we're trying to decide what's right for her.” Although the “right” decision was aimed to benefit the patient, it also benefited the client. The ability “to do,” to take action, moved clients from a position of helplessness to empowerment. It engendered a sense of control and capability and fostered hope for a future that could be better than originally forecasted. This can be appreciated in the following comment, “There was one point where I really felt that she was sick, and I was helpless. But then coming to [the service], all of a sudden it was as if I had a team and we were all working for {Patient} together… helping me do what we can for her.”
Because the participants found cancer and its treatment to be both fear provoking and fraught with uncertainty, they would sometimes second-guess their decisions, most especially at the start of their dog's treatment program. However, the information provided, often repeatedly and reassuringly, helped them to make the decisions that were necessary and retain confidence in those decisions. One early-stage client's struggle with confidence over the week following the start of treatment was evident in the following comment, “The rest has been sort of a whirlwind (large out-breath) of trying to analyze it, what we've done—not what we've done but what's been done for him—and reassuring ourselves, and with the reassurances of everybody else, that we are doing the right thing.”
Information was needed to prepare for an uncertain future. Most participants had adopted a long-term approach to the cancer situation. In questioning a future wherein the taken-for-granted fabric of a so-called normal life had unraveled, most felt they had to know as much as possible, and in so doing, be able to prepare themselves for what could happen and how they should respond. Life had been familiar and predictable, and thus controlled and comfortable, but cancer was unfamiliar and associated with the perpetual possibility of the unexpected. Through gathering information and knowing as much as possible, participants minimized the unfamiliar and unexpected, finding some sense of control and comfort within the ability to be prepared for what might come. This was indicated in 1 client's words, “If I know and I'm prepared, I can deal with it. If I don't know… It's very difficult for me to deal with things if I don't know what's in store.” She continued, “The only way I'm going to get comfortable is [through] the more I know and have control of.”
“Not knowing” was associated with fear. The last-quoted client referred to this as “the fear of the unknown,” claiming this as “worse than knowing.” She was adamant that clients need to be “really well-informed so they're not so fearful.”
Although “not knowing” tended to generate fear, by its very nature, it also left space for hope. Facing uncertainties impregnated with hopes as well as fears, participants were better enabled to develop realistic expectations when informed, expectations that could moderate the pitfalls of both wishful thinking and doom predicting, enabling them to envision plausible, “on course” versions of the future. In reference to this, 1 client said she wanted the service to “fill in the gaps so that we stay on course” as “we might have unrealistic expectations because of our lack of knowledge.”
Discussion
In conducting this study, the foremost expectation identified was information, which was subcategorized into the content aspects of information and the process aspects of information-giving. Results of the present study have provided a broad introductory understanding of the information expectations of clients who access oncology care services at a tertiary referral center for dogs with life-limiting cancer. Beyond the central qualification of truth-telling, the findings indicated that the 43 interviewees expected information about all aspects of the dog's cancer and its treatment, varying in relation to their basic understanding of cancer, their previous experience with cancer, and their information preferences. Furthermore, they indicated that information enabled the trust and confidence necessary to engage in a treatment program, the ability to make informed decisions, and the ability to be prepared for the future.
As emphasized by the study participants, the central qualification was for the information to be the truth. Truth-telling in the oncological setting is actually a fairly recent phenomenon. Prior to the 1990s, it was commonplace for physicians to supposedly protect patients from the psychological impact of the cancer diagnosis by withholding information.45–47 With the movement from paternalism (in which it was perfectly acceptable for physicians to decide what a patient should and should not know and what treatment should be given) to autonomy (wherein the patient is seen to have a right to information and active participation in his or her own care21,48), truth-telling has become the norm.46,49 The finding that truth-telling was repeatedly raised during interviews with participants in the present study suggested the possibility of an ongoing current of public distrust. As such, health-care services could provide clients with verbal assurance by underscoring the principle of truth-telling early in the service encounter. For example, a clinician may offer, “It's always easier to talk about the good side of things–the things that bring us hope. It's our philosophy here, though, that no matter how bad the bad side may be, we will talk about that too. We believe it's important for you to have a balanced perspective, so we're always honest and upfront.” Abiding by this service philosophy, the challenge of conveying bad or difficult news can be met, not by avoidance, but by imparting the information in an honest, clear, direct, yet compassionate manner.22,50,51
Within the oncology service at OVCHSC, participants’ awareness of cancer and its treatment depended on the degree to which they were informed through their family practitioner, what they knew through independent research (eg, Internet), their “walking knowledge,” and their direct and indirect experience with cancer. Importantly, they were not blank slates waiting to be inscribed, but had their own expertise, preconceptions, and values, which together shaped their perspectives. What most powerfully differentiated these perspectives was their prior experience with cancer, which, although variable, was quite common among study participants.
Clients’ prior experience of cancer can have important implications,52,53 not all of which support best outcomes. For example, previous unfavorable events could lead to undue pessimism, limiting the treatment options in which clients would be willing to engage. Conversely, previous favorable events could lead to unrealistic optimism, driving requests for treatment options not necessarily in the patient's best interests. The identification of clients’ prior experiences and resultant world views on cancer and cancer treatment would provide an opportunity to intervene as appropriate and thus maximize the potential for best outcomes. It would also provide an opportunity for greater mutual understanding and conversations to be customized to align with clients’ expectations.54
It is important, therefore, to elicit and understand a client's perspective. There are 2 ways to accomplish this.55 The first is to directly inquire about thoughts, feelings, concerns, ideas, and expectations, perhaps with questions such as, “How does what I've just described fit with your understanding of the situation?” The second is to identify and respond to verbal and nonverbal cues from clients. Verbal cues are utterances that suggest there could be more to be said or understood. For example, if a client said “maybe,” the clinician could respond by saying, “You said ‘maybe’ that would work. Could you tell me a little bit more about that?” Nonverbal cues include changes in body language, speech, or facial expression. The latter can be addressed by a clinician through comments or questions, such as, “I'm noticing that you're looking a little uneasy about that. What's concerning you?” In particular, the finding of the present study that clients tend to generalize their knowledge across different cancer contexts, at times coming to erroneous conclusions, suggested the need to specifically inquire about prior experience. Such inquiry would provide the opportunity to adjust preconceptions and misinformation, individualize the educational process, and communicate with increased sensitivity and respect, thereby validating a client's experience while being aware of its potential to overshadow the current situation.
Most of the participants in the present study had a strong absolute need to be fully informed (to know as much as possible, whether good or bad), whereas a few were satisfied with very little information. This illustrates the variance in information preference among clients, which has been reported in the veterinary medical literature53,56 (including the publication by Coe et al6) and is in keeping with the human medical literature on patient expectations,21–26 wherein 80% to 94% of patients report the desire to be fully informed.38,57,58
As reported in the human medical literature, many patient, physician, and situational factors influence information preference.17,28,57–63 Given that age, gender, and education are the most stable predictors, younger, female, and educated patients are those who prefer the most information.49 Although these factors are useful to keep in mind in understanding information expectations, it does not mean that human or veterinary health-care providers can or should predict the information needs of individuals based on these or any of the other factors that have been shown to influence information preferences.21
A particularly well-documented factor known to influence information preference is coping style.63 At one end of the spectrum, clients can be categorized into monitors, who actively seek information, and at the other end, blunters, who avoid, shun, minimize, or distract themselves from information.63–65 Monitors cope best by gathering as much information as possible about a threatening situation, thereby maximizing their information resources, whereas blunters cope best by protecting themselves from the full impact of information that they perceive as frightening.65 Blunting appeared to be particularly evident with 1 participant in the present study, who said he must have “blocked out” the memory of his dog's prognosis, having no recollection of it being given even though it had even been provided in writing. That client had also been unable to state the type of cancer his dog had. These observations suggested that this individual likely coped better with less information. The importance of recognizing differences in coping styles, as it relates to information preferences, is in realizing that information can function to enhance or hinder coping. As Butow et al60 stated, “forcing information on a blunter may be as injurious as withholding it from a monitor,” emphasizing the need to be aware of a client's coping style and provide information accordingly, thereby supporting rather than undermining his or her coping ability. The same holds true for denial, an adaptive coping strategy distinct from coping style, wherein individuals protect themselves from information when information gives rise to overwhelming feelings of anxiety, distress, and despair,66–68 more specifically, “when the truth is too painful to bear.”69 Denial may be suspected with clients who fail to accept or appear oblivious to the diagnosis, who minimize the implications of the disease, who delay seeking medical attention for recognized clinical signs, who have poor or no adherence to medical recommendations, or who appear unconcerned or detached with respect to the cancer.70 Because denial invariably poses communication challenges, specific communication strategies are required.66,69 For whatever reason, whenever less information is in order, the information provided can be condensed to the major points necessary to assure client informedness, what has been called a targeted approach.59
It is vital that health-care providers explore, identify, and adhere to client preferences for information.28,71 Success in client education depends on recognizing and attending to information preferences so as not to under- or overwhelm but to provide the right amount and type of information tailored to the individual.72 This is not necessarily easy to do because information needs can change, both during a consultation (in relation to the information given or physician behavior) and over the course of care.6,57,60 However, an individualized or tailored approach to information-giving is both feasible and recommended.27,49,73 Such an approach should start with the clinician inviting clients to share what they already know and then asking them what they would like to know; for example, “What is your understanding of {Patient's} cancer?” followed by, “What questions do you have about {Patient's} cancer and how the future may unfold for her and your family?” Having established the clients’ baseline understanding and preferences as the starting point, information can then be given in a staged approach called chunking and checking,55 alternating between providing small amounts of information and checking for understanding, while incorporating the client's interpretation and interests to direct the information-giving process. Some examples of checking are questions such as, “How well are you following this?” and “Does this make sense?” and “What questions do you have so far?” An example of a response that incorporates the client's interests and directs the information-giving process accordingly is, “Yes, that's absolutely a concern and relates to our choices with care. Let's talk about that.” Chunking and checking will ensure that the clients’ views and preferences are kept central to the information-giving process, maximizing the potential to meet information preferences.
As participants in the present study became informed about the expertise and technology available with the oncology service at the OVCHSC, they were able to form opinions of the service. Opinions such as these are influenced not only by the information but also by the manner in which the information is given.74 The proficient delivery of adequate information contributes to an opinion of competence and caring,37,74 both of which are fundamental to the development of trust.75 Whereas poor delivery of information and undisclosed, inconsistent, or contradictory information diminishes trust, proficient delivery of information and credible, complete, and scientific information builds trust.48 Because trust in a health-care service is foundational to clients’ confidence to engage in a treatment program and the acquisition of trust is “[an] iterative process, requiring repeated evidence,”76 meeting clients’ information expectations regarding the content (ie, what is said) and process (ie, how it is said) should remain a steadfast priority.
Prior to the establishment of trust, some clients may be especially diligent in seeking information and critically assessing it, that is, scrutinizing what is said and how it is said, while forming their opinion of the health-care service.77 Once trust is established, however, they may become less concerned with the details, comfortably complacent within the confidence they have placed in the service personnel's expertise.20,60,77 Information needs may be highest, therefore, early in the engagement of a service not only because of the novelty of the situation, but also because of clients’ need to assess the credibility of that service. It is important for oncology services to recognize the effect of trust (or the lack thereof) on the information needs of clients and respond accordingly to consistently meet expectations. Services can have all the so-called bells and whistles, but if a trusting relationship cannot be established, it will be to no avail.
Information enabled the participants in the present study to make informed decisions. To make informed decisions, adequate and appropriate information has to be provided on all treatment options (including the options involving no cancer-directed treatment), risks and benefits, associated prognoses, and why one treatment may be recommended over another.71 Communication needs to be clear, client understanding needs to be frequently checked,28 and written materials need to be provided to reinforce important information.71 Even with these measures in place, decision-making is a complex process, and health-care service providers should be prepared to address decisional uncertainty. According to the findings of the present study, some clients may benefit from educational reinforcement in the immediate period after decisions are made, through repetition of key information and provision of reassurance. Such reinforcement may allay the distress felt by those whose anxiety generates doubt about the validity of their decisions.
Results of the present study also indicated that information enabled the participants to be prepared for an uncertain future. Preparedness extended across the broadest of time lines, from being ready to manage the immediate day-to-day needs of patient care to being ready for the various potential outcomes of treatment, including the possibility of euthanasia. The immediate day-to-day needs of patient care (often involving precise, specified schedules) included close monitoring of the effects and adverse effects of chemotherapy and radiation therapy, care of surgical sites, and administration of various medications. Most patient care associated with sophisticated treatment protocols and surgical interventions typically lies with clients. Given the importance of the role clients have in optimizing the potential for good outcomes, the value of a comprehensive approach with client education is evident. Clients need to be fully informed as to what they need to do and when, where, how, and why they need to do it. For the participants in the present study, the need to know was abundantly clear. The diagnosis brought numerous uncertainties as to what it would mean for both the dog and the family; the pursuit of treatment introduced even further uncertainties—those related to the treatment as well as the basic practicalities of living with and caring for a dog with cancer.
There is, according to Beach and Good,40 an “omnipresence of uncertainty” associated with cancer. For many individuals, this can magnify the many fears and anxieties associated with cancer and detract from the sense of control, security, and predictability that might normally characterize life. Uncertainty, along with fear, anxiety, and insecurity, powerfully drive the need for information. If that need is unmet, people may be prone to overly vivid imaginings, creating imagined scenarios worse than the realities warrant.58,65 This can lead to further fear, anxiety, and insecurity that are needless and preventable. Because provision of information can counter worsening of these emotional states, oncology service personnel should provide clients with as comprehensive an education as possible, delimited by client information preferences, on what the future might bring.
When clients commit themselves to a course of action, they need to be prepared for the path they are willing to take. From a humanistic perspective, health-care services should provide clients with as much preparatory information as they want, need, and believe to be important, thereby enabling them to be as prepared as possible. To be prepared means to be educated, trained, organized, systematized, primed, and made ready. To be ready means to be equipped, capable, and equal to the challenge. The provision of information enables clients to become equal to the challenge—to take action with confidence, competence, and composure.
In the present study, it was very apparent that the ability to take action meant a great deal to the participants. The ability to do something moved them from a position of helplessness to empowerment. It engendered a sense of control and capability and, likewise, fostered hope for the future. What was most remarkable, however, was that this shift started with information—1 building block at a time, each interconnecting with another, eventually materializing into what would represent the chosen course of action. It was not just “the doing,” but also “‘the knowing’ that preempted ‘the doing’” that led to the sense of empowerment, control, capability, and hope. The attainment of information was of profound psychological importance for the participants.
There is a wealth of data reported in the human medical literature to show that information can support the psychological health and welfare of cancer patients.21,33 Traditionally, information was often withheld from patients through the legal doctrine of therapeutic privilege45 in the belief it would increase patients’ psychological morbidity by causing anxiety, depression, and hopelessness.24,45,55 Results of studies over the past 3 decades, however, have repeatedly countered that belief and have shown that information, rather than being harmful,45 can positively contribute to patients’ psychological well-being. Provision of information has been documented to reduce anxiety,24,33,77 limit fears,24,78 prevent unnecessary distress,21,25 engender a sense of mastery or control,21,33,78,79 augment the ability to adjust and cope with illness,21,80 increase confidence,45 enhance hopefulness,24,33 and lead to realistic expectations21,25,33 among patients and their families. These beneficial effects pertain to both favorable and unfavorable information; for most individuals, “not knowing is worse than knowing,”24 as identified in human medicine and substantiated within the context of the present study. Thus, it is important for veterinary oncology services to recognize the impact that information can have on clients’ psychological well-being. The provision of information does not just serve the veterinary medical profession's ethical and legal imperatives to enable informed decisions by and preparedness of clients, and therefore, the ability to improve the welfare of patients. It also serves the profession's ethical imperative to provide veterinary service in a manner which supports the welfare of clients. If a central tenet of practice is to provide humanistic service, then it is vital for health-care services to recognize the power of information and, in turn, consciously, intentionally, and purposefully provide information in ways that will promote the welfare of clients. Doing so will not only enable clients to make informed decisions and be prepared, which is vital in itself, but also to become psychologically fortified in ways that will contribute to the resiliency necessary to follow through with those decisions and better cope with the care of a dog with cancer.
Through rigorous qualitative analysis, an in-depth understanding of client expectations on the basis of participants’ first-hand experiences, views, opinions, and ideas was generated in the present study. Analogous to the high expectations for information consistently identified in studies in human medicine,3 the present study identified information as the foremost expectation for the participating clients when accessing oncology services for their dogs with life-limiting cancer. On the basis of this evidence, if the goals of veterinary oncology services include fulfilling client expectations, then addressing client expectations for information would seem to be the appropriate first step for services wanting to provide high-quality care.
As typical of all research, the present study had some limitations. A characteristic of qualitative studies, which focus on specific individuals within specific contexts, is that generalizability of the findings to all individuals or all contexts may not be possible. Purposive, nonprobability sampling and relatively small sample sizes, typical of qualitative methods, do not lend themselves to claims of representativeness. As such, the small number of clients who participated in the present study at the OVCHSC may not necessarily represent the broader population of clients that seek cancer care for their dogs at specialty oncology centers or other locations, such as primary care practices. For instance, clients who choose a tertiary referral center (as opposed to a secondary referral center or primary care practice) may have different expectations (eg, they may expect more information) than those in other settings. The applicability of the findings of the present study should be carefully considered prior to extrapolating them to other oncology service contexts.81 The potential for researcher bias in the present study should also be considered. To minimize this, the interviews were approached de novo (ie, from a naïve mindset, without a prior literature review) and conducted in a client-driven manner, encouraging client control of the direction of the interview and content discussed. An intentionally curious, dispassionate, and nonpartisan interview stance was taken throughout the interviews.
Future research incorporating a survey assessment of information expectations of clients of veterinary oncology services would strongly complement the knowledge gained to date. Given that communication is a complex phenomenon, the combination of qualitative and quantitative assessments (a mixed-method approach) may be most favorable, providing optimal depth and breadth of knowledge.82 Research within other veterinary medical specialties and medical care contexts, including continuing research in primary care practice, is warranted because information expectations may vary across different contexts and with different populations of clients. A question of special interest is whether there may be qualitative or quantitative differences in the information expectations of clients in relation to the human-animal bond. It may be that clients who are highly attached (ie, who have a strong desire to help their pet and preserve the bond) to their dog expect more or different information than those who are less attached. The participants of the present study scored high on the LAPS, reflecting a higher level of attachment to their dogs than that expected in the general population. These high scores, however, were obtained from clients who were faced with the threat of loss of their pet, which may influence perceptions and resultant measures, making direct comparison with the general population not necessarily meaningful. Longitudinal research and cross-sectional studies of attachment and how it may relate to information expectations in various populations are needed.
Understanding and fulfilling client expectations goes hand in hand with quality veterinary service. It is important to seek the firsthand experiences, views, opinions, and ideas of clients and to examine the veterinary health-care services delivered from the clients’ point of view. Research that seeks public input on the healthcare system does more than support evolving and responsive care systems. The data obtained in such studies have the potential to break new ground in advancing an all-embracing quality philosophy within veterinary health-care delivery, and in so doing lead to improved outcomes for clients, patients, and health-care systems.
ABBREVIATIONS
| LAPS | Lexington Attachment to Pets Scale |
| OVCHSC | Ontario Veterinary College Health Sciences Centre at the University of Guelph |
H2 digital audio recorder, Zoom Corp, Tokyo, Japan.
GarageBand, version 10.2, Apple Inc, Cupertino, Calif.
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Appendix
Interview guide (with modifications applicable to the stage of treatment [early, middle, or late]) used to evaluate the expectations of clients accessing oncology care services at a tertiary referral center for dogs with life-limiting cancer.
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