The Content of Hope in Ambulatory Patients with Colon Cancer Emily S. Beckman, Paul R. Helft, Alexia M. Torke Narrative Inquiry in Bioethics, Volume 3, Number 2, Fall 2013, pp. 153-164 (Article) Published by Johns Hopkins University Press DOI: https://doi.org/10.1353/nib.2013.0031
For additional information about this article https://muse.jhu.edu/article/524406
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RESEARCH ARTICLE
The Content of Hope in Ambulatory Patients with Colon Cancer Emily S. Beckman,1* Paul R. Helft,2 and Alexia M. Torke2 1) Indiana University–Purdue University Indianapolis, 2) Indiana University School of Medicine *Correspondence concerning this article should be addressed to: Emily Beckman, DMH, Medical Humanities Program, Cavanaugh Hall 141, 425 University Blvd., Indianapolis, IN 46202–5140. Email: [email protected]
Conflicts of Interest. The authors report no conflicts of interest. Abstract. Although hope is a pervasive concept in cancer treatment, we know little about how ambulatory patients with cancer define or experience hope. We explored hope through semistructured interviews with ten patients with advanced (some curable, some incurable) colon cancer at one Midwestern, university–based cancer center. We conducted a thematic analysis to identify key concepts related to patient perceptions of hope. Although we did ask specifically about hope, patients also often revealed their hopes in response to indirect questions or by telling stories about their cancer experience. We identified four major themes related to hope: 1) hope is essential, 2) a change in perspective, 3) the content of hope, and 4) communicating about hope. The third theme, the content of hope, included three subthemes: a) the desire for normalcy, b) future plans, and c) hope for a cure. We conclude that hope is an essential concept for patients undergoing treatment for cancer as it pertains to their psychological well–being and quality of life, and hope for a cure is not and should not be the only consideration. In a clinical context, the exploration of patients’ hopes and aspirations in light of their cancer diagnosis is important because it provides a frame for understanding their goals for treatment. Exploration of the content of patients’ hope can not only help to illuminate misunderstandings but also clarify how potential treatments may or may not contribute to achieving patients’ goals. Key Words. Cancer, Hope, Meaning, Oncology, Support
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ope pervades discussions of cancer, and seems to be a concept prevalent among those offering information about cancer and cancer treatment. Anyone seeking information on the internet about cancer treatment is likely to be directed to the American Cancer Society’s website, which reveals the “Show Us Your Hope” theme for the 25–year anniversary of Relay for Life. During this nationwide event, communities are encouraged to demonstrate how hope about cancer is perceived, felt, or understood; patients, families, and community members then gather together to
share a message about the meaning of hope. Over the last 50 years, there have been major changes in clinicians’ perceptions regarding the relationship between disclosure of a cancer diagnosis and hope. In 1961, Oken published a landmark paper showing that the majority of physicians withheld information from patients regarding the diagnosis of cancer out of fear it would diminish hope. The same study, repeated 18 years later, showed that an astonishing 97% of physicians revealed patients’ true diagnosis, despite the risk of diminishing hope (Novack et al., 1979). As developments in cancer
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treatments occurred, physicians began to feel more comfortable discussing the diagnosis of cancer with their patients because the possibility of living longer had become a reality (Kodish & Post, 1995). A more recent study, published in 2005, showed that patients maintain more hope when their doctors disclosed realistic information about their prognosis (Hagerty et al., 2005). Another study demonstrated that parents’ ability to preserve hopefulness about their children’s cancers did not diminish even when the child had a poor prognosis (Mack et al., 2007). The current understanding is that once patients have clearly expressed their communication preferences, doctors should be honest and open about their diagnosis and prognosis, and empirical studies suggest that full disclosure, delivered appropriately, does not seem to diminish hope (Sardell & Trierweiler, 1993). Several studies have used various scales (e.g., Nowotny Hope Scale and Herth Hope Index) to assess levels of hope in patients diagnosed with different stages of cancer (Buckley & Herth, 2004; Chen, 2003; Felder, 2004; Kim, Kim, Schwartz–Barcott, & Zucker, 2006; Rustoen & Wiklund, 2000). Another study compared patients being treated with palliative intent with those being treated with curative intent (Sanatani, Schreier, & Stitt, 2008). These studies found no significant differences in the levels of hope among patients at different clinical stages of cancer. The findings that hope is not diminished by having greater knowledge about prognosis or having more advanced cancer imply that patients’ hopes may not be focused solely on cure of disease and that patients’ abilities to preserve hope are not strictly related to overall disease–specific prognosis. Several qualitative studies have found that hope plays several important roles in coping with cancer, such as coming to terms with death (Benzein, Norberg, & Saveman, 2001), continued engagement in life (Elliott & Oliver, 2007), or inner enrichment (Hearth, 1990). Fostering hope can therefore be a way for physicians to enhance patient quality of life. Patient hopes may also be a reflection of their underlying values. Understanding the content of hope may help physicians and patients to make
treatment decisions that best reflect the patient’s autonomous wishes. Research on hope suggests that clinicians can support patients by gaining a deep understanding of the content of their hopes across the cancer spectrum. Although several studies have focused on thematic analyses regarding the nature of hope in patients with terminal illness, there are limited data on the content of hope in ambulatory patients with cancer. In this population, studies have examined hope in relation to social support (Mattioli, Repinski, & Chappy, 2008) and strategies used to foster hope (Saleh & Brockopp, 2001). Another study identified both the levels of hope and the frequency of particular kinds of hope among patients with curable and incurable cancer and found that hopes were similar among the two groups. The most prevalent hopes in both groups included health outcomes other than cure (such as mobility), hope for a cure, and hope for emotional well–being (Sanatani et al., 2008). Detailed, qualitative research about the content of hope among ambulatory patients with cancer can provide valuable information to oncology clinicians about how to best support their patients’ critical need to preserve hope in the face of serious illness. Such an understanding may also allow clinicians to help patients attain certain hoped–for goals while coming to terms with others that may not be realistic. The present study sought to provide a rich, in–depth description of the content of the hopes that ambulatory patients with colon cancer experience across the spectrum of cancer treatment.
Methods Study Population We focused on outpatients with colon cancer for several reasons. First, a large proportion of patients with colon cancer, including patients with advanced disease, are ambulatory during much of their illness. Second, we wanted to study hope in patients with both curable and incurable cancer so that we could examine the content of hope both in the context of and independent of the hope for a cure.
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Focusing on patients with colon cancer allowed us to identify ambulatory patients with curable and incurable disease. Studies also show that patients with cancer experience a “sharper functional decline” at the end of life, as late as five months before death (Teno, Weitzen, Fennell, & Mor, 2001). Our focus on ambulatory patients allowed us to interact with individuals not yet experiencing such precipitous decline. Participants were recruited from an academic medical center in a large, Midwestern city. Eligible participants were adult patients (18 years of age and older) who spoke English (because of a lack of translators for this research study), had been diagnosed with stage III (curable) or IV (incurable) colon cancer, were actively undergoing chemotherapy and/or radiation therapy treatments, and were physically able to participate in an audio–recorded interview (not too ill or short of breath) on the day of their clinic visit.
Study Design We conducted semistructured, in–depth interviews. Members of the practice group at the cancer center identified eligible patients based on diagnosis and disease stage. Each eligible patient was approached in person by a medical staff member (either the primary oncologist or primary nurse) and the principal investigator and told about the study. Interested patients were then invited to participate in a single, audiotaped interview about the content of hope. Interviews were conducted during their scheduled treatment. Participants were not compensated for their participation in the study. The study was approved by the university’s institutional review board, and each participant provided written informed consent.
Development of Interview Guide Interviews were conducted by the principal investigator (E.S.B.). Based on our review of the literature, we designed a semistructured interview guide (Table 1) to examine the content of patients’ hopes. We selected a semistructured approach because
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we wanted to obtain participants’ own perceptions without imposed preconceived definitions. Semistructured interviews are useful in this context (Kvale, 2008). The interview guide was developed after careful review of the literature, including studies that employed standardized hope surveys as well as prior interviews with other seriously ill patients about sources of hope and strategies for maintaining hope. The interview guide was developed and revised based on examples from the literature, followed by feedback from colleagues with experience in palliative care and qualitative research. Our goal was to carefully design a guide that would not only prompt patients to express their hopes, but also foster in–depth discussions regarding the meaning of those hopes. In each section, participants were asked an open–ended question about hope followed by additional prompts as needed. Prompts were included in the interview guide to elicit more information in the form of stories. However, when necessary, the interviewer asked additional questions for clarification or to expand on a given topic as appropriate.
Data Analysis All interviews were audio–recorded and transcribed verbatim for analysis. Transcriptions were checked by the interviewer for accuracy. Once transcribed, all identifying information contained in the transcription was redacted, leaving anonymous transcripts to be used for analysis. We relied on a thematic analysis (Morse & Field 1995) to identify major themes related to the content and role of hope in patients’ cancer experiences. This approach allows themes to emerge from the data rather than to be determined by the researcher (Strauss & Corbin 1998). In this case, we wanted to understand the meaning of hope from the perspective of patients with cancer. After the completion of approximately every two interviews, transcripts were reviewed by the investigators to identify major themes that required further exploration in subsequent interviews. This iterative process, in which data are reviewed multiple times as interviews are conducted and as
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Table 1 Interview Guide 1. When I say the word “hope” to you, what comes to mind? 2. What does hope mean to you? Prompts: What does hope mean to you in terms of your relationships with others? What does hope mean to you in terms of your personal goals? Are there other areas of your life for which hope means something important or something different? 3. Tell me about your colon cancer. Prompts: What do you understand about your treatments? What do you think your treatments are meant to accomplish? What do you hope for, overall, from your treatments? 4. Have your hopes changed since receiving your diagnosis of colon cancer? 5. How do you use hope? Prompts: On a daily basis? What do you think hope might do for you? 6. What have you told others about your hopes? Prompts: What would you like for others to know about your hopes? Does your family influence your hope? If you were to take time to compose a letter to your friends, family, or to the world in general, what would hope sound like? What if you were to draw a picture? What would hope look like? 7. What would you like for your doctors/nurses to know about your hopes? Prompt: If you could teach them anything, what do you wish they knew? 8. Is there anything else you would like to tell me about your experiences with hope?
new themes emerge, allowed us to refine and test our ideas at each step of data collection (Giacomini & Cook, 2000). At each meeting, we also determined whether new themes were continuing to emerge with each additional interview. Interviews continued until no new themes were identified in subsequent interviews (Giacomini & Cook, 2000). It was determined that saturation was reached after ten interviews. Throughout the interview process, each interview was read and independently coded by two
investigators (E.S.B. and A.M.T.). Data were analyzed using open coding, axial coding, and selective coding (Strauss & Corbin, 1998). During the first reading of interviews, segments of text in each interview were identified by topic and labeled (open coding). We conducted a line–by–line analysis. Codes could be phrases, sentences, or longer sections of text that represented an important concept in the data. Codes were not based on interview questions, but rather on important themes that emerged from the data themselves. After the open
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coding process, the labels, or codes, were then organized into categories reflecting major themes (axial coding). We then conducted a process of reviewing the data for key examples and examining the relationship of codes to each other (selective coding). All investigators met regularly to review emerging codes and themes. After a list of codes and their interrelationship had been developed, interviews were reread to ensure that codes were applied to all instances that appeared in the interviews. In this study, we took the following steps to ensure credibility, a term that is conceptually similar to “validity” in quantitative studies (Giacomini & Cook, 2000): Independent coding of all data by more than one investigator; analysis from two disciplinary perspectives (a medical humanist [E.S.B.] and two practicing physicians with bioethics training [A.M.T. and P.R.H.]), and an interview process that continued until saturation of a theme was reached (meaning no new themes were appearing upon analysis of the data in subsequent interviews). Patton (1990) suggests “validity, meaningfulness and insights generated from qualitative inquiry have more to do with the information–richness of the cases selected and the observational/analytical capabilities of the researcher than with sample size,” and we believe we have obtained data rich with insights and information regarding the content of hope for patients with colon cancer.
Results Participants Twelve patients were approached, and ten agreed to be interviewed (Table 2). The youngest participant was 28 years old and the oldest was 68 (mean, 50.7; median, 49). Two patients declined to participate because of feelings of unease with the interview process. Of ten interviewed participants, nine claimed to use hope in some meaningful way. Only one participant denied using hope at all. We identified four major themes regarding hope (Table 3): 1. Hope is essential. 2. A change in perspective.
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3. The content of hope: a. Desire for normalcy; b. Future plans; and c. Hope for a cure. 4. Communicating about hope.
Hope Is Essential All but one participant suggested that hope is essential to existing in a life with cancer, but, as another participant stated: Without hope, if you can’t really believe you can be cured, you probably can’t be . . . so you gotta keep hoping. Hope is choosing to live.
Most participants perceived hope as part of the mindset that allows coping with the challenges of cancer, including suffering and the possibility of death. The view that hope is essential was expressed by patients who hoped for a cure as well as those who did not. One participant resisted any reliance on hope because of its potential link with depression. She felt that if she allowed herself to hope for something that was not fulfilled, she risked falling into or experiencing feelings of depression and this would, ultimately, be worse than not hoping at all. According to this participant, what will be, will be, and hope plays no part in it: You can’t change it [living with cancer]. Either you’re gonna die today or you’re gonna die tomorrow . . . you can’t change that . . . Cause if you keep thinking about it . . . maybe you will get sick . . . so why think about it? Just keep moving forward.
This particular participant perceived that hope could have negative consequences for her well– being. However, in listening to her story, although she denied assigning any value to hope, she did express particular hopes for the future later in the interview: Hopefully, you know, the chances of getting the cancer, it’s lower now, so hopefully it will go away. . . . It could come back . . . so I hope I don’t get it back after the treatment and everything goes away.
This patient expressed particular hopes for the future, but did not perceive hope to be an essential
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Table 2 Participants’ Characteristics (N = 10) Characteristic
n
Gender Female Male
8 2
Disease Stage III IV
6 4
Race African–American White Indian (Southeast Asian)
2 7 1
Religion Protestant Catholic Muslim Hindu Other
5 1 1 1 2
part of coping with her cancer. Although initially this particular patient denied using hope at all, her story tells us something very different. In fact, she did rely on hope, perhaps even as something essential, for existing in a life with cancer.
A Change in Perspective Participants often claimed a new perspective on life since learning of their cancer diagnosis. A young patient, still reeling from the unexpected diagnosis, spoke with his partner about their ever–changing outlook on the situation in particular, and life in general: We are using hope to have a bigger picture perspective . . . we’re using hope to motivate us to kind of do things that we wouldn’t have done otherwise. We’re going to write a book together.
One participant discussed her pre–diagnosis desire to buy an expensive condominium. Since learning of her cancer diagnosis, and living with it for an extended period of time, her wishes had changed dramatically. She now wished for emotional peace
and contentment rather than for materialistic or superficial abundances. She placed more value on her older home because it was filled with memories of her family. Instead of moving on, and leaving those memories behind, she hoped to stay in her old home to cherish the memories and to make more. She no longer worried about outward appearances and new mortgages, but rather poured her attention into spending quality time with family and friends. Another participant, when asked how hopes have changed since the diagnosis, responded: Probably before it was a little bit more, uh, maybe even selfish. Um, and maybe not even important [those things that I hoped for] . . . a new house, a new car, you know. I do still like the clothes, but it [my perspective] has changed a lot.
In some cases, participants expressed regret at choices they made before being diagnosed with cancer. However, they were thankful for the change in perspective cancer provided in mending broken relationships that resulted from those poor choices. One participant talked of his divorce, before cancer,
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Table 3 Major Themes, Codes and Quotations Themes
Codes
Examples of Quotations
Essential Nature of Hope
necessity, way of being, attitude
It [hope] bonds all of us together . . . that way we can all talk about it [cancer] without getting angry. Hope is choosing to live.
Change in Perspective
new direction, motivation
My situation has totally changed my goals. We’re using hope to motivate us to do things that we wouldn’t have done otherwise.
The Content of Hope a. Desire for Normalcy
routine, the way things were, feeling normal, good health
God, I can’t wait until I can drink a Diet Coke again and it doesn’t taste like industrial waste. When food tastes right, then I’m happy with that.
b. Future Plans
family, travel, independence
I just hope they [family] are safe and looked after. I want to have a productive life without being a burden . . . and drive my Corvette. I just hope that they (family) are safe and looked after, probably on the religious end of it . . . I guess I hope that somethin’ bad doesn’t happen in my family. I’ve never been the person that cared a lot about monetary values and everything but just being able to help my family and hope for the best for them is something I hope for . . .
c. Hope to be Cancer Free
Communicating about Hope
acceptance, being realistic, feel better, everything will be okay, trust
Everybody wants to get well but you can only do so much, I mean what’s gonna happen is gonna happen.
sharing experiences with others, difficult to talk about hopes, desire to protect close friends and family members, support for others
I think they [hopes] might scare other people. . . . I think they look at it like a package deal, like,’okay all the treatment is done. . . . everything is fine now’ and I don’t know that I feel that way. My body has changed so much since diagnosis, they don’t see it, they don’t know what I deal with on a daily basis, or hourly, or you know, every 15 minutes, they just take it for granted that if it’s not seen it’s not there. . . .
I think hope is counterbalanced with trying to be realistic . . . only 6% of people with my diagnosis live beyond five years . . . so that’s put a damper on my hope . . . though I’m still chasing the silver bullet. . . . I still have a lot of hope.
Hope is a hard thing to talk about . . . that’s why I want to write this letter . . . to tell people. [I tell my] family and friends [about my hopes . . . certainly about my hope about Diet Coke . . . though I try to protect [my mom] from some things . . . but the rest of my family, my brothers and sisters, I let it all out now, they’re okay with that.
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which resulted in, “living a ho–hum life . . . never upbeat, every day was the same.” Since his diagnosis, however, with a new perspective and different set of priorities, he had reconciled with his wife, remarried her, and considered her “his most significant support.” Another participant with a stage IV diagnosis stated: My situation has totally changed my goals . . . before I had different career goals . . . and now I have different goals in life, career goals and even ministry goals. . . . I think I am more concerned about trying to do things that wouldn’t have otherwise been done without me, without my cancer . . . trying to do things more for other people and serving the Lord in different ways.
The Content of Hope Three major subthemes describe the content of participants’ hopes: A desire for normalcy, future plans, and hope for a cure.
Desire for Normalcy Almost all participants expressed a desire for life to simply return to normal. Although they sometimes expressed an interest in aspirational future plans, most often the desire was to feel normal physically and mentally in what was their day–to–day routine before cancer. As one participant said: God, I can’t wait until I can drink a Diet Coke again and it doesn’t taste like industrial waste . . . before I was very superficial and now it’s just I’m thrilled when the Diet Coke tastes right . . . I love my food, and so, when my food tastes right, I’m happy with that.
Another participant spoke emotionally about making snow angels: This year, as far as winter is concerned, I haven’t done the things that I usually do. Every year I used to get in the snow and make snow angels . . . lots of snow angels.
Another participant, still saddened by a recent divorce, expressed hope to simply: Be a good grandmother . . . and for life to get back to normal . . . the divorce bothered me more than the cancer.
Future Plans Participants spoke at length about the future in terms of their families. An almost universal wish was to see children and/or grandchildren graduate from school and marry and have children of their own. When referring to her seven grandchildren, one participant expressed a simple hope for a future for them, even knowing she would not be a part of it after her death. Another said: I hope to see my grandchildren graduate, get married, and have children of their own. I hope to see my daughter get old and gray like I am getting, and see how she deals with it . . . and get her tattoos removed.
Embedded in this desire to witness the development and growth of their loved ones was a wish that their own experiences could help their family members to cope and continue to develop in the event of their death. They wanted their family members to not only survive their loss, but continue to thrive and live a productive life. One participant expressed such concern: I just hope that they (family) are safe and looked after, probably on the religious end of it. . . . I guess I hope that somethin’ bad doesn’t happen in my family.
Another participant expressed concern in securing a financial future for his family after his death: I’ve never been the person that cared a lot about monetary values and everything but just being able to help my family and hope for the best for them is something I hope for.
Participants also expressed their hopes of traveling to places they’d never been before and to revisit old favorites “one last time.” Some participants expressed nostalgia at the things they used to be able to do, whereas others looked more to the future and plans to do those things again. Some participants talked about wanting to travel to faraway places. One said, “I would like to see Florida again . . . walk along the beach.” Another stated, “I have a Corvette and I think [city] would be an excellent road trip come summer.” Patients, while hoping to travel again one day, maintained reasonable expectations. One
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patient said, “I would like to go to Hawaii, but it ain’t gonna happen.” This patient allowed herself to dream big while realizing the impossibility of her dreams.
Hope for a Cure . . . To be Cancer Free Some participants expressed a hope for a cure, although in some cases, they also acknowledged that his hope may not be realistic. I’ve been told the reality (of my situation with cancer) and the facts, and it maybe diminished some hope, but I would much rather have the reality and I can plan accordingly and then be pleasantly surprised if things work out differently. . . . I would say I do not have a strong hope or strong expectation of being cured.
Although this participant was presented with a poor prognosis with no hope of cure, he stated early in the interview that, “the big thing is hoping for a cure or hoping for an extension of life.” The same participant continued: I think hope in this life is counterbalanced with trying to be realistic . . . only 6% of people with my diagnosis of stage IV live beyond five years.
This participant remained realistic throughout the interview, expressing understanding that there is no cure for his disease. At the same time, he also expressed other hopes, including an extension of life and life after death: And so that [responding well to chemo] gives me a lot of hope that maybe I’ll have a longer life . . . I definitely feel a strong desire to be optimistic . . . I do believe there’s a purpose for this cancer . . . and my hope for the next life is very strong.
Other participants expressed a desire to be cancer free. One participant described a, “yearning . . . that everything will be okay.” She continued that she wished to get her life back, or more specifically, for “life to be what I want it to be.” When asked what she expected from her treatment, another participant replied, “success . . . total healing. “ Another participant expressed hope “that the cancer doesn’t come back.”
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Communicating about Hope In some cases, participants said they were very open about their hopes with friends and family members. Others kept their hopes more private. According to one participant, I think they [hopes] might scare other people . . . I think they look at it like a package deal, like, ‘okay all the treatment is done . . . everything is fine now’ and I don’t know that I feel that way. My body has changed so much since diagnosis, they don’t see it, they don’t know what I deal with on a daily basis, or hourly, or you know, every 15 minutes, they just take it for granted that if it’s not seen it’s not there.
This participant resisted sharing any hopes with friends and family members out of fear that they would not understand her struggle in its entirety. Other participants resisted sharing their hopes with family and friends out of a desire to protect them from the severity of their situation. Another participant expressed an interest in writing a Christmas letter to friends and family to express his feelings about hope that were too difficult to talk about: I want to share my faith and hope of the next life with family and friends but it’s really hard to talk about . . . so I want to send a letter out . . . to tell people.
Since being diagnosed with cancer, this participant realized that he still had much more to share with friends and family members. He was eager to communicate his hopes to his loved ones, despite the admitted difficulty in speaking directly. One participant reported feeling very comfortable speaking about her hopes with most friends and family members: [I tell my] family and friends [about my hopes] . . . certainly about my hope about Diet Coke . . . though I try to protect [my mom] from some things . . . but the rest of my family, my brothers and sisters, I let it all out now, they’re okay with that.
Another patient was happy to communicate with others about her hopes, claiming: Most of the time it’s me trying to tell [friends and family] it’s gonna be okay . . . I have a panicky
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husband and I said “look, we’ve got this, we’ve got this, we’ve got that, it’s gonna be okay.
Discussion In this qualitative study of the content of patients’ hopes, we found that the most valuable information emerged as each person’s story unfolded, and not in specific responses to our question about the personal meaning of hope. This leads us to conclude that we can gain insight into what hope means to patients by listening, in full, to their stories. The first question of the interview, “If I say the word hope to you, what comes to mind?” yielded brief responses and the least interesting information. The real content of hope was revealed as patients were invited to talk about their hopes in terms of their illness in particular and life in general. We found that it was often difficult for the patients to articulate exactly what hope meant to them, even though most seemed to perceive hope as an essential aspect of life in terms of their psychological well–being and quality of life, particularly since being diagnosed with cancer (Penson et al., 2007). These findings suggest that simply asking about what patients hope for may not yield productive information. Instead, physicians must first listen to a patient’s story to understand the nature of their hopes. Gaining a deeper understanding of hope requires a process of active listening (Penson et al., 2007). Strategies such as the use of open–ended questions (Cole & Bird, 2000) and avoiding interruptions—similar to research strategies using in–depth interviewing techniques—allow patients to express their stories. Patients reported that the content of their hopes changed with the diagnosis of cancer. More specifically, perspectives changed. Patients often reconfigured the plans they had made before cancer; after diagnosis, what was perceived as more meaningful or significant changed. Patients develop a new perspective on life, becoming more focused on friends, family, and memory making and less so on the acquisition of things. This might indicate a shift in the content and meaning of patients’ individual hopes. It has been suggested that by losing,
or suppressing, prediagnosis hopes, patients have the freedom to allow new, more meaningful hopes to “bloom” (Thiel & Harris, 2005, p. 235). An important finding of our study was that, although patients expressed a desire to get better and live longer, most were also concerned with getting back to normal. Whether it was tasting a favorite food again or getting back to work, patients wanted more than anything to do what they did before they got sick. Cancer seemed to represent a deviation from routine. Similar to studies of patients with terminal illness (Benzein et al., 2001), including other cancer patients (Mattioli et al., 2008), we found that patients desired a return to routine, normal living. The practical implications of this are significant, particularly as doctors and patients discuss different courses of treatment. For example, a patient may forgo chemotherapy or other cancer treatments that have significant side effects to maintain the quality of everyday life. In a clinical context, the exploration of patients’ hopes and aspirations in light of their cancer diagnosis is important because it provides a frame for understanding their goals for treatment. In this respect, an understanding of patients’ hopes can help in decision making. For example, palliative care experts have long recommended that, at least in patients facing life–ending cancer diagnoses, clinicians help patients to reframe hopes for cure to hopes for a death free from suffering (Breitbart & Heller, 2003). Exploration of the content of patients’ hope can help illuminate misunderstandings (e.g., they are still hoping for a cure when cure is not possible), but also clarify how potential treatments may or may not help contribute to achieving their goals (e.g., cessation of disease–directed chemotherapies when the goal is to spend time free from treatment side effects; Evans, Tulsky, Back, & Arnold, 2006). Physicians may face substantial barriers to opening discussions with patients about topics such as hopefulness, which have important emotional, psychological, and existential dimensions. There is evidence that physicians avoid engaging in communication about emotionally challenging issues, although female physicians may engage more than males (Roter & Hall, 2004). Barriers include the
The Content of Hope
pressures of time in a busy oncology practice and lack of physician training in discussing emotionally laden topics. There is, however, evidence that the skills important to successful communication with patients surrounding complex issues, such as hopefulness, can be acquired through training and education. Curricula such as Oncotalk (Back, Arnold, Tulsky, Baile, & Fryer–Edwards, 2003) can help oncologists to develop the skills needed to incorporate patients’ perspectives into clinical decision–making. Although such discussions are unlikely to occur during every visit, they may be especially relevant and necessary when major decisions about treatment arise. Additionally, other members of the clinical team such as chaplains or social workers can also provide further support in discussions about hope and can communicate this to the rest of the interdisciplinary team. The themes in our study have relevance for clinicians involved in patient care. We found that many patients with cancer express hope and value hope across the treatment continuum, even when a patient has accepted that cure is no longer possible (Johnson, 2007; Garrard & Wrigley, 2009; Rousseau, 2000). This should serve as a reminder to clinicians that patients have the capacity for hope whether cure is possible or not. Second, our data raise the hypothesis that, for most patients with cancer, the content of hope is multifaceted. Hope for a cure is only one of several primary domains of hope. Feeling normal, adapting new perspectives, and striving for future goals are also important. We interviewed one patient who expressed some discomfort in using or relying on hope, particularly early in the interview. Although this person rejected the concept of hope as central to the experience of having cancer, (s)he was later able to articulate particular hopes about the future that may be important in his/her understanding of his illness and expectations. This study has several limitations. Because it involved patients within a single medical center, it may not be representative of all patients with cancer, or even all patients with colorectal cancer, the only cancer diagnosis we included in the study. A majority of patients were White and Protestant,
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and the points of view of other patients may have not been adequately represented. It is also possible that, because hope is often framed as a positive coping strategy by groups such as the American Cancer Society, patients may not feel completely free to share negative perceptions and attitudes about hope; that is, social response bias may have played a role in patients’ recorded comments. Finally, this study was limited to a small sample of patients. Therefore, future studies should involve a much larger, diverse population that would extend beyond the scope of a single cancer center.
Conclusion We conclude that achieving an understanding of patients’ hopes requires listening to patients stories. Because hopes may not emerge until patients are given time to tell their stories, clinicians need excellent communication skills to elucidate patient hopes. Patients sometimes have very specific hopes that may have important implications for treatment decision making. Additionally, clinicians may gain important information about whether patients’ goals are realistic in light of their disease trajectory. In some cases, clinicians may be able to reframe patient hopes to those that are attainable, even in the face of terminal illness. By reaching a deeper understanding of the content of hope, cancer clinicians will be able to provide better support to patients at all stages of illness.
References Back, A. L., Arnold, R. M., Tulsky, J. A., Baile, W. F., & Fryer–Edwards, K. A. (2003). Teaching communication skills to medical oncology fellows. Journal of Clinical Oncology, 21, 2433–2436. Benzein, E., Norberg, A., & Saveman, B. I. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15 (2), 117–126. Breitbart W., & Heller, K. S. (2003). Reframing hope: Meaning–centered care for patients near the end of life. Journal of Palliative Medicine, 6 (6), 979–988. Buckley, J., & Herth, K. (2004). Fostering hope in terminally ill patients. Nursing Standard, 19 (10), 33–41.
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Chen, M. L. (2003). Pain and hope in patients with cancer: A role for cognition. Cancer Nursing,26 (1),61–67. Cole, S. A., & Bird, J. (2000). The medical interview: The three function approach (2nd ed.). St. Louis: Mosby. Elliott, J. A., & Oliver, I. N. (2007). Hope and hoping in the talk of dying cancer patients. Social Science & Medicine, 64, 138–149. Evans, W. G., Tulsky, J. A., Back, A. L., & Arnold, R. M. (2006). Communication at times of transitions: How to help patients cope with loss and re–define hope. Cancer Journal, 12 (5), 417–424. Felder, B. E. (2004). Hope and coping in patients with cancer diagnoses. Cancer Nursing, 24 (4), 320–324. Garrard, E., & Wrigley A. (2009). Hope and terminal illness: False hope versus absolute hope. Clinical Ethics, 4, 38–43. Giacomini, M. K., & Cook, D. J. (2000). Users’ guides to the medical literature: XXII. Qualitative research in health care: Are the results of the study valid? Evidence Based Medicine Working Group. Journal of the American Medical Association, 284 (3), 357–362. Hagerty, R. G., Butow, P. N., Ellis, P. M, Lobb, E. A., Pendlebury, S. C., Leighl, N., . . . Tattersal, M. N. H. (2005). Communicating with realism and hope: Incurable cancer patients’ views on the disclosure of prognosis. Journal of Clinical Oncology, 23( 6), 1278–1288. Hearth, K. (1990). Fostering hope in terminally–ill people. Journal of Advanced Nursing, 15, 1250–1259. Johnson, S. (2007). Hope in terminal illness: An evolutionary concept analysis. International Journal of Palliative Nursing, 13 (9), 451–9. Kim, D. S., Kim, H. S., Schwartz–Barcott, D., & Zucker, D. (2006). The nature of hope in hospitalized chronically ill patients. International Journal of Nursing Studies, 43 (5), 547–556. Kodish, E., & Post, S. G. (1995). Oncology and hope. Journal of Clinical Oncology, 13 (7), 1817–1822. Kvale, S. (2008). Interviews: Learning the craft of qualitative research interviewing (3rd ed.). London: Sage. Mack, J. W., Wolfe, J., Cook, E. F., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2007). Hope and prognostic disclosure. Journal of Clinical Oncology, 25 (35), 5636–5642. Mattioli, J. L., Repinski, R., & Chappy, S. L. (2008). The Meaning of hope and social support in patients receiving chemotherapy. Oncology Nursing Forum, 35 (5), 822–829. Morse, J. M., & Field, P. A. (1995). Qualitative methods for health professionals (2nd ed.). Thousand Oaks, CA: Sage. Novack, D. H., Plumer, R., Smith, R. L., Ochitill, H., Morrow, G. R., & Bennett, J. M. (1979). Changes in physicians’ attitudes toward telling the cancer patient. Journal of the American Medical Association, 241 (9), 897–900.
Oken, D. (1961). What to tell cancer patients: A study of medical attitudes. Journal of the American Medical Association, 175, 1120–1128. Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage. Penson, R. T., Gu, F., Harris, S., Thiel, M. M., Lawton, N., Fuller, A. F. Jr., Lynch, T.J. Jr. . (2007). Hope. The Oncologist, 12 (9), 1105–1113. Roter, D. L., & Hall, J. A. (2004). Physician gender and patient–centered communication: A critical review of empirical research. Annual Review of Public Health, 25, 497–519. Rousseau, P. (2000). Hope in the terminally ill. Western Journal of Medicine, 173 (2), 117–118. Rustoen, T., & Wiklund, I. (2000). Hope in newly diagnosed patients with cancer. Cancer Nursing, 23 (3), 214–219. Saleh, U. S., & Brockopp, D. Y. (2001). Hope among patients with cancer hospitalized for bone marrow transplantation: A phenomenologic study. Cancer Nursing, 24 (4), 308–314. Sanatani, M., Schreier, G., & Stitt, L. (2008). Level and direction of hope in cancer patients: An exploratory longitudinal study. Supportive Care in Cancer, 16 (5), 493–499. Sardell, A., & Trierweiler, S. (1993). Disclosing the cancer diagnosis: Procedures that influence patient hopefulness. Cancer, 72 (11), 3355–3365. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage. Teno, J. M., Weitzen, S., Fennell, M. L., & Mor, V. (2001). Dying trajectory in the last year of life: Does cancer trajectory fit other diseases? Journal of Palliative Medicine, 4 (4), 457–464. Thiel R. M., & Harris, R. S. (2005). Hope and vocation. Journal of Supportive Oncology, 3, 234–237.
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RESEARCH ARTICLE
The Content of Hope in Ambulatory Patients with Colon Cancer Emily S. Beckman,1* Paul R. Helft,2 and Alexia M. Torke2 1) Indiana University–Purdue University Indianapolis, 2) Indiana University School of Medicine *Correspondence concerning this article should be addressed to: Emily Beckman, DMH, Medical Humanities Program, Cavanaugh Hall 141, 425 University Blvd., Indianapolis, IN 46202–5140. Email: [email protected]
Conflicts of Interest. The authors report no conflicts of interest. Abstract. Although hope is a pervasive concept in cancer treatment, we know little about how ambulatory patients with cancer define or experience hope. We explored hope through semistructured interviews with ten patients with advanced (some curable, some incurable) colon cancer at one Midwestern, university–based cancer center. We conducted a thematic analysis to identify key concepts related to patient perceptions of hope. Although we did ask specifically about hope, patients also often revealed their hopes in response to indirect questions or by telling stories about their cancer experience. We identified four major themes related to hope: 1) hope is essential, 2) a change in perspective, 3) the content of hope, and 4) communicating about hope. The third theme, the content of hope, included three subthemes: a) the desire for normalcy, b) future plans, and c) hope for a cure. We conclude that hope is an essential concept for patients undergoing treatment for cancer as it pertains to their psychological well–being and quality of life, and hope for a cure is not and should not be the only consideration. In a clinical context, the exploration of patients’ hopes and aspirations in light of their cancer diagnosis is important because it provides a frame for understanding their goals for treatment. Exploration of the content of patients’ hope can not only help to illuminate misunderstandings but also clarify how potential treatments may or may not contribute to achieving patients’ goals. Key Words. Cancer, Hope, Meaning, Oncology, Support
H
ope pervades discussions of cancer, and seems to be a concept prevalent among those offering information about cancer and cancer treatment. Anyone seeking information on the internet about cancer treatment is likely to be directed to the American Cancer Society’s website, which reveals the “Show Us Your Hope” theme for the 25–year anniversary of Relay for Life. During this nationwide event, communities are encouraged to demonstrate how hope about cancer is perceived, felt, or understood; patients, families, and community members then gather together to
share a message about the meaning of hope. Over the last 50 years, there have been major changes in clinicians’ perceptions regarding the relationship between disclosure of a cancer diagnosis and hope. In 1961, Oken published a landmark paper showing that the majority of physicians withheld information from patients regarding the diagnosis of cancer out of fear it would diminish hope. The same study, repeated 18 years later, showed that an astonishing 97% of physicians revealed patients’ true diagnosis, despite the risk of diminishing hope (Novack et al., 1979). As developments in cancer
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treatments occurred, physicians began to feel more comfortable discussing the diagnosis of cancer with their patients because the possibility of living longer had become a reality (Kodish & Post, 1995). A more recent study, published in 2005, showed that patients maintain more hope when their doctors disclosed realistic information about their prognosis (Hagerty et al., 2005). Another study demonstrated that parents’ ability to preserve hopefulness about their children’s cancers did not diminish even when the child had a poor prognosis (Mack et al., 2007). The current understanding is that once patients have clearly expressed their communication preferences, doctors should be honest and open about their diagnosis and prognosis, and empirical studies suggest that full disclosure, delivered appropriately, does not seem to diminish hope (Sardell & Trierweiler, 1993). Several studies have used various scales (e.g., Nowotny Hope Scale and Herth Hope Index) to assess levels of hope in patients diagnosed with different stages of cancer (Buckley & Herth, 2004; Chen, 2003; Felder, 2004; Kim, Kim, Schwartz–Barcott, & Zucker, 2006; Rustoen & Wiklund, 2000). Another study compared patients being treated with palliative intent with those being treated with curative intent (Sanatani, Schreier, & Stitt, 2008). These studies found no significant differences in the levels of hope among patients at different clinical stages of cancer. The findings that hope is not diminished by having greater knowledge about prognosis or having more advanced cancer imply that patients’ hopes may not be focused solely on cure of disease and that patients’ abilities to preserve hope are not strictly related to overall disease–specific prognosis. Several qualitative studies have found that hope plays several important roles in coping with cancer, such as coming to terms with death (Benzein, Norberg, & Saveman, 2001), continued engagement in life (Elliott & Oliver, 2007), or inner enrichment (Hearth, 1990). Fostering hope can therefore be a way for physicians to enhance patient quality of life. Patient hopes may also be a reflection of their underlying values. Understanding the content of hope may help physicians and patients to make
treatment decisions that best reflect the patient’s autonomous wishes. Research on hope suggests that clinicians can support patients by gaining a deep understanding of the content of their hopes across the cancer spectrum. Although several studies have focused on thematic analyses regarding the nature of hope in patients with terminal illness, there are limited data on the content of hope in ambulatory patients with cancer. In this population, studies have examined hope in relation to social support (Mattioli, Repinski, & Chappy, 2008) and strategies used to foster hope (Saleh & Brockopp, 2001). Another study identified both the levels of hope and the frequency of particular kinds of hope among patients with curable and incurable cancer and found that hopes were similar among the two groups. The most prevalent hopes in both groups included health outcomes other than cure (such as mobility), hope for a cure, and hope for emotional well–being (Sanatani et al., 2008). Detailed, qualitative research about the content of hope among ambulatory patients with cancer can provide valuable information to oncology clinicians about how to best support their patients’ critical need to preserve hope in the face of serious illness. Such an understanding may also allow clinicians to help patients attain certain hoped–for goals while coming to terms with others that may not be realistic. The present study sought to provide a rich, in–depth description of the content of the hopes that ambulatory patients with colon cancer experience across the spectrum of cancer treatment.
Methods Study Population We focused on outpatients with colon cancer for several reasons. First, a large proportion of patients with colon cancer, including patients with advanced disease, are ambulatory during much of their illness. Second, we wanted to study hope in patients with both curable and incurable cancer so that we could examine the content of hope both in the context of and independent of the hope for a cure.
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Focusing on patients with colon cancer allowed us to identify ambulatory patients with curable and incurable disease. Studies also show that patients with cancer experience a “sharper functional decline” at the end of life, as late as five months before death (Teno, Weitzen, Fennell, & Mor, 2001). Our focus on ambulatory patients allowed us to interact with individuals not yet experiencing such precipitous decline. Participants were recruited from an academic medical center in a large, Midwestern city. Eligible participants were adult patients (18 years of age and older) who spoke English (because of a lack of translators for this research study), had been diagnosed with stage III (curable) or IV (incurable) colon cancer, were actively undergoing chemotherapy and/or radiation therapy treatments, and were physically able to participate in an audio–recorded interview (not too ill or short of breath) on the day of their clinic visit.
Study Design We conducted semistructured, in–depth interviews. Members of the practice group at the cancer center identified eligible patients based on diagnosis and disease stage. Each eligible patient was approached in person by a medical staff member (either the primary oncologist or primary nurse) and the principal investigator and told about the study. Interested patients were then invited to participate in a single, audiotaped interview about the content of hope. Interviews were conducted during their scheduled treatment. Participants were not compensated for their participation in the study. The study was approved by the university’s institutional review board, and each participant provided written informed consent.
Development of Interview Guide Interviews were conducted by the principal investigator (E.S.B.). Based on our review of the literature, we designed a semistructured interview guide (Table 1) to examine the content of patients’ hopes. We selected a semistructured approach because
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we wanted to obtain participants’ own perceptions without imposed preconceived definitions. Semistructured interviews are useful in this context (Kvale, 2008). The interview guide was developed after careful review of the literature, including studies that employed standardized hope surveys as well as prior interviews with other seriously ill patients about sources of hope and strategies for maintaining hope. The interview guide was developed and revised based on examples from the literature, followed by feedback from colleagues with experience in palliative care and qualitative research. Our goal was to carefully design a guide that would not only prompt patients to express their hopes, but also foster in–depth discussions regarding the meaning of those hopes. In each section, participants were asked an open–ended question about hope followed by additional prompts as needed. Prompts were included in the interview guide to elicit more information in the form of stories. However, when necessary, the interviewer asked additional questions for clarification or to expand on a given topic as appropriate.
Data Analysis All interviews were audio–recorded and transcribed verbatim for analysis. Transcriptions were checked by the interviewer for accuracy. Once transcribed, all identifying information contained in the transcription was redacted, leaving anonymous transcripts to be used for analysis. We relied on a thematic analysis (Morse & Field 1995) to identify major themes related to the content and role of hope in patients’ cancer experiences. This approach allows themes to emerge from the data rather than to be determined by the researcher (Strauss & Corbin 1998). In this case, we wanted to understand the meaning of hope from the perspective of patients with cancer. After the completion of approximately every two interviews, transcripts were reviewed by the investigators to identify major themes that required further exploration in subsequent interviews. This iterative process, in which data are reviewed multiple times as interviews are conducted and as
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Table 1 Interview Guide 1. When I say the word “hope” to you, what comes to mind? 2. What does hope mean to you? Prompts: What does hope mean to you in terms of your relationships with others? What does hope mean to you in terms of your personal goals? Are there other areas of your life for which hope means something important or something different? 3. Tell me about your colon cancer. Prompts: What do you understand about your treatments? What do you think your treatments are meant to accomplish? What do you hope for, overall, from your treatments? 4. Have your hopes changed since receiving your diagnosis of colon cancer? 5. How do you use hope? Prompts: On a daily basis? What do you think hope might do for you? 6. What have you told others about your hopes? Prompts: What would you like for others to know about your hopes? Does your family influence your hope? If you were to take time to compose a letter to your friends, family, or to the world in general, what would hope sound like? What if you were to draw a picture? What would hope look like? 7. What would you like for your doctors/nurses to know about your hopes? Prompt: If you could teach them anything, what do you wish they knew? 8. Is there anything else you would like to tell me about your experiences with hope?
new themes emerge, allowed us to refine and test our ideas at each step of data collection (Giacomini & Cook, 2000). At each meeting, we also determined whether new themes were continuing to emerge with each additional interview. Interviews continued until no new themes were identified in subsequent interviews (Giacomini & Cook, 2000). It was determined that saturation was reached after ten interviews. Throughout the interview process, each interview was read and independently coded by two
investigators (E.S.B. and A.M.T.). Data were analyzed using open coding, axial coding, and selective coding (Strauss & Corbin, 1998). During the first reading of interviews, segments of text in each interview were identified by topic and labeled (open coding). We conducted a line–by–line analysis. Codes could be phrases, sentences, or longer sections of text that represented an important concept in the data. Codes were not based on interview questions, but rather on important themes that emerged from the data themselves. After the open
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coding process, the labels, or codes, were then organized into categories reflecting major themes (axial coding). We then conducted a process of reviewing the data for key examples and examining the relationship of codes to each other (selective coding). All investigators met regularly to review emerging codes and themes. After a list of codes and their interrelationship had been developed, interviews were reread to ensure that codes were applied to all instances that appeared in the interviews. In this study, we took the following steps to ensure credibility, a term that is conceptually similar to “validity” in quantitative studies (Giacomini & Cook, 2000): Independent coding of all data by more than one investigator; analysis from two disciplinary perspectives (a medical humanist [E.S.B.] and two practicing physicians with bioethics training [A.M.T. and P.R.H.]), and an interview process that continued until saturation of a theme was reached (meaning no new themes were appearing upon analysis of the data in subsequent interviews). Patton (1990) suggests “validity, meaningfulness and insights generated from qualitative inquiry have more to do with the information–richness of the cases selected and the observational/analytical capabilities of the researcher than with sample size,” and we believe we have obtained data rich with insights and information regarding the content of hope for patients with colon cancer.
Results Participants Twelve patients were approached, and ten agreed to be interviewed (Table 2). The youngest participant was 28 years old and the oldest was 68 (mean, 50.7; median, 49). Two patients declined to participate because of feelings of unease with the interview process. Of ten interviewed participants, nine claimed to use hope in some meaningful way. Only one participant denied using hope at all. We identified four major themes regarding hope (Table 3): 1. Hope is essential. 2. A change in perspective.
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3. The content of hope: a. Desire for normalcy; b. Future plans; and c. Hope for a cure. 4. Communicating about hope.
Hope Is Essential All but one participant suggested that hope is essential to existing in a life with cancer, but, as another participant stated: Without hope, if you can’t really believe you can be cured, you probably can’t be . . . so you gotta keep hoping. Hope is choosing to live.
Most participants perceived hope as part of the mindset that allows coping with the challenges of cancer, including suffering and the possibility of death. The view that hope is essential was expressed by patients who hoped for a cure as well as those who did not. One participant resisted any reliance on hope because of its potential link with depression. She felt that if she allowed herself to hope for something that was not fulfilled, she risked falling into or experiencing feelings of depression and this would, ultimately, be worse than not hoping at all. According to this participant, what will be, will be, and hope plays no part in it: You can’t change it [living with cancer]. Either you’re gonna die today or you’re gonna die tomorrow . . . you can’t change that . . . Cause if you keep thinking about it . . . maybe you will get sick . . . so why think about it? Just keep moving forward.
This particular participant perceived that hope could have negative consequences for her well– being. However, in listening to her story, although she denied assigning any value to hope, she did express particular hopes for the future later in the interview: Hopefully, you know, the chances of getting the cancer, it’s lower now, so hopefully it will go away. . . . It could come back . . . so I hope I don’t get it back after the treatment and everything goes away.
This patient expressed particular hopes for the future, but did not perceive hope to be an essential
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Table 2 Participants’ Characteristics (N = 10) Characteristic
n
Gender Female Male
8 2
Disease Stage III IV
6 4
Race African–American White Indian (Southeast Asian)
2 7 1
Religion Protestant Catholic Muslim Hindu Other
5 1 1 1 2
part of coping with her cancer. Although initially this particular patient denied using hope at all, her story tells us something very different. In fact, she did rely on hope, perhaps even as something essential, for existing in a life with cancer.
A Change in Perspective Participants often claimed a new perspective on life since learning of their cancer diagnosis. A young patient, still reeling from the unexpected diagnosis, spoke with his partner about their ever–changing outlook on the situation in particular, and life in general: We are using hope to have a bigger picture perspective . . . we’re using hope to motivate us to kind of do things that we wouldn’t have done otherwise. We’re going to write a book together.
One participant discussed her pre–diagnosis desire to buy an expensive condominium. Since learning of her cancer diagnosis, and living with it for an extended period of time, her wishes had changed dramatically. She now wished for emotional peace
and contentment rather than for materialistic or superficial abundances. She placed more value on her older home because it was filled with memories of her family. Instead of moving on, and leaving those memories behind, she hoped to stay in her old home to cherish the memories and to make more. She no longer worried about outward appearances and new mortgages, but rather poured her attention into spending quality time with family and friends. Another participant, when asked how hopes have changed since the diagnosis, responded: Probably before it was a little bit more, uh, maybe even selfish. Um, and maybe not even important [those things that I hoped for] . . . a new house, a new car, you know. I do still like the clothes, but it [my perspective] has changed a lot.
In some cases, participants expressed regret at choices they made before being diagnosed with cancer. However, they were thankful for the change in perspective cancer provided in mending broken relationships that resulted from those poor choices. One participant talked of his divorce, before cancer,
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Table 3 Major Themes, Codes and Quotations Themes
Codes
Examples of Quotations
Essential Nature of Hope
necessity, way of being, attitude
It [hope] bonds all of us together . . . that way we can all talk about it [cancer] without getting angry. Hope is choosing to live.
Change in Perspective
new direction, motivation
My situation has totally changed my goals. We’re using hope to motivate us to do things that we wouldn’t have done otherwise.
The Content of Hope a. Desire for Normalcy
routine, the way things were, feeling normal, good health
God, I can’t wait until I can drink a Diet Coke again and it doesn’t taste like industrial waste. When food tastes right, then I’m happy with that.
b. Future Plans
family, travel, independence
I just hope they [family] are safe and looked after. I want to have a productive life without being a burden . . . and drive my Corvette. I just hope that they (family) are safe and looked after, probably on the religious end of it . . . I guess I hope that somethin’ bad doesn’t happen in my family. I’ve never been the person that cared a lot about monetary values and everything but just being able to help my family and hope for the best for them is something I hope for . . .
c. Hope to be Cancer Free
Communicating about Hope
acceptance, being realistic, feel better, everything will be okay, trust
Everybody wants to get well but you can only do so much, I mean what’s gonna happen is gonna happen.
sharing experiences with others, difficult to talk about hopes, desire to protect close friends and family members, support for others
I think they [hopes] might scare other people. . . . I think they look at it like a package deal, like,’okay all the treatment is done. . . . everything is fine now’ and I don’t know that I feel that way. My body has changed so much since diagnosis, they don’t see it, they don’t know what I deal with on a daily basis, or hourly, or you know, every 15 minutes, they just take it for granted that if it’s not seen it’s not there. . . .
I think hope is counterbalanced with trying to be realistic . . . only 6% of people with my diagnosis live beyond five years . . . so that’s put a damper on my hope . . . though I’m still chasing the silver bullet. . . . I still have a lot of hope.
Hope is a hard thing to talk about . . . that’s why I want to write this letter . . . to tell people. [I tell my] family and friends [about my hopes . . . certainly about my hope about Diet Coke . . . though I try to protect [my mom] from some things . . . but the rest of my family, my brothers and sisters, I let it all out now, they’re okay with that.
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which resulted in, “living a ho–hum life . . . never upbeat, every day was the same.” Since his diagnosis, however, with a new perspective and different set of priorities, he had reconciled with his wife, remarried her, and considered her “his most significant support.” Another participant with a stage IV diagnosis stated: My situation has totally changed my goals . . . before I had different career goals . . . and now I have different goals in life, career goals and even ministry goals. . . . I think I am more concerned about trying to do things that wouldn’t have otherwise been done without me, without my cancer . . . trying to do things more for other people and serving the Lord in different ways.
The Content of Hope Three major subthemes describe the content of participants’ hopes: A desire for normalcy, future plans, and hope for a cure.
Desire for Normalcy Almost all participants expressed a desire for life to simply return to normal. Although they sometimes expressed an interest in aspirational future plans, most often the desire was to feel normal physically and mentally in what was their day–to–day routine before cancer. As one participant said: God, I can’t wait until I can drink a Diet Coke again and it doesn’t taste like industrial waste . . . before I was very superficial and now it’s just I’m thrilled when the Diet Coke tastes right . . . I love my food, and so, when my food tastes right, I’m happy with that.
Another participant spoke emotionally about making snow angels: This year, as far as winter is concerned, I haven’t done the things that I usually do. Every year I used to get in the snow and make snow angels . . . lots of snow angels.
Another participant, still saddened by a recent divorce, expressed hope to simply: Be a good grandmother . . . and for life to get back to normal . . . the divorce bothered me more than the cancer.
Future Plans Participants spoke at length about the future in terms of their families. An almost universal wish was to see children and/or grandchildren graduate from school and marry and have children of their own. When referring to her seven grandchildren, one participant expressed a simple hope for a future for them, even knowing she would not be a part of it after her death. Another said: I hope to see my grandchildren graduate, get married, and have children of their own. I hope to see my daughter get old and gray like I am getting, and see how she deals with it . . . and get her tattoos removed.
Embedded in this desire to witness the development and growth of their loved ones was a wish that their own experiences could help their family members to cope and continue to develop in the event of their death. They wanted their family members to not only survive their loss, but continue to thrive and live a productive life. One participant expressed such concern: I just hope that they (family) are safe and looked after, probably on the religious end of it. . . . I guess I hope that somethin’ bad doesn’t happen in my family.
Another participant expressed concern in securing a financial future for his family after his death: I’ve never been the person that cared a lot about monetary values and everything but just being able to help my family and hope for the best for them is something I hope for.
Participants also expressed their hopes of traveling to places they’d never been before and to revisit old favorites “one last time.” Some participants expressed nostalgia at the things they used to be able to do, whereas others looked more to the future and plans to do those things again. Some participants talked about wanting to travel to faraway places. One said, “I would like to see Florida again . . . walk along the beach.” Another stated, “I have a Corvette and I think [city] would be an excellent road trip come summer.” Patients, while hoping to travel again one day, maintained reasonable expectations. One
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patient said, “I would like to go to Hawaii, but it ain’t gonna happen.” This patient allowed herself to dream big while realizing the impossibility of her dreams.
Hope for a Cure . . . To be Cancer Free Some participants expressed a hope for a cure, although in some cases, they also acknowledged that his hope may not be realistic. I’ve been told the reality (of my situation with cancer) and the facts, and it maybe diminished some hope, but I would much rather have the reality and I can plan accordingly and then be pleasantly surprised if things work out differently. . . . I would say I do not have a strong hope or strong expectation of being cured.
Although this participant was presented with a poor prognosis with no hope of cure, he stated early in the interview that, “the big thing is hoping for a cure or hoping for an extension of life.” The same participant continued: I think hope in this life is counterbalanced with trying to be realistic . . . only 6% of people with my diagnosis of stage IV live beyond five years.
This participant remained realistic throughout the interview, expressing understanding that there is no cure for his disease. At the same time, he also expressed other hopes, including an extension of life and life after death: And so that [responding well to chemo] gives me a lot of hope that maybe I’ll have a longer life . . . I definitely feel a strong desire to be optimistic . . . I do believe there’s a purpose for this cancer . . . and my hope for the next life is very strong.
Other participants expressed a desire to be cancer free. One participant described a, “yearning . . . that everything will be okay.” She continued that she wished to get her life back, or more specifically, for “life to be what I want it to be.” When asked what she expected from her treatment, another participant replied, “success . . . total healing. “ Another participant expressed hope “that the cancer doesn’t come back.”
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Communicating about Hope In some cases, participants said they were very open about their hopes with friends and family members. Others kept their hopes more private. According to one participant, I think they [hopes] might scare other people . . . I think they look at it like a package deal, like, ‘okay all the treatment is done . . . everything is fine now’ and I don’t know that I feel that way. My body has changed so much since diagnosis, they don’t see it, they don’t know what I deal with on a daily basis, or hourly, or you know, every 15 minutes, they just take it for granted that if it’s not seen it’s not there.
This participant resisted sharing any hopes with friends and family members out of fear that they would not understand her struggle in its entirety. Other participants resisted sharing their hopes with family and friends out of a desire to protect them from the severity of their situation. Another participant expressed an interest in writing a Christmas letter to friends and family to express his feelings about hope that were too difficult to talk about: I want to share my faith and hope of the next life with family and friends but it’s really hard to talk about . . . so I want to send a letter out . . . to tell people.
Since being diagnosed with cancer, this participant realized that he still had much more to share with friends and family members. He was eager to communicate his hopes to his loved ones, despite the admitted difficulty in speaking directly. One participant reported feeling very comfortable speaking about her hopes with most friends and family members: [I tell my] family and friends [about my hopes] . . . certainly about my hope about Diet Coke . . . though I try to protect [my mom] from some things . . . but the rest of my family, my brothers and sisters, I let it all out now, they’re okay with that.
Another patient was happy to communicate with others about her hopes, claiming: Most of the time it’s me trying to tell [friends and family] it’s gonna be okay . . . I have a panicky
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husband and I said “look, we’ve got this, we’ve got this, we’ve got that, it’s gonna be okay.
Discussion In this qualitative study of the content of patients’ hopes, we found that the most valuable information emerged as each person’s story unfolded, and not in specific responses to our question about the personal meaning of hope. This leads us to conclude that we can gain insight into what hope means to patients by listening, in full, to their stories. The first question of the interview, “If I say the word hope to you, what comes to mind?” yielded brief responses and the least interesting information. The real content of hope was revealed as patients were invited to talk about their hopes in terms of their illness in particular and life in general. We found that it was often difficult for the patients to articulate exactly what hope meant to them, even though most seemed to perceive hope as an essential aspect of life in terms of their psychological well–being and quality of life, particularly since being diagnosed with cancer (Penson et al., 2007). These findings suggest that simply asking about what patients hope for may not yield productive information. Instead, physicians must first listen to a patient’s story to understand the nature of their hopes. Gaining a deeper understanding of hope requires a process of active listening (Penson et al., 2007). Strategies such as the use of open–ended questions (Cole & Bird, 2000) and avoiding interruptions—similar to research strategies using in–depth interviewing techniques—allow patients to express their stories. Patients reported that the content of their hopes changed with the diagnosis of cancer. More specifically, perspectives changed. Patients often reconfigured the plans they had made before cancer; after diagnosis, what was perceived as more meaningful or significant changed. Patients develop a new perspective on life, becoming more focused on friends, family, and memory making and less so on the acquisition of things. This might indicate a shift in the content and meaning of patients’ individual hopes. It has been suggested that by losing,
or suppressing, prediagnosis hopes, patients have the freedom to allow new, more meaningful hopes to “bloom” (Thiel & Harris, 2005, p. 235). An important finding of our study was that, although patients expressed a desire to get better and live longer, most were also concerned with getting back to normal. Whether it was tasting a favorite food again or getting back to work, patients wanted more than anything to do what they did before they got sick. Cancer seemed to represent a deviation from routine. Similar to studies of patients with terminal illness (Benzein et al., 2001), including other cancer patients (Mattioli et al., 2008), we found that patients desired a return to routine, normal living. The practical implications of this are significant, particularly as doctors and patients discuss different courses of treatment. For example, a patient may forgo chemotherapy or other cancer treatments that have significant side effects to maintain the quality of everyday life. In a clinical context, the exploration of patients’ hopes and aspirations in light of their cancer diagnosis is important because it provides a frame for understanding their goals for treatment. In this respect, an understanding of patients’ hopes can help in decision making. For example, palliative care experts have long recommended that, at least in patients facing life–ending cancer diagnoses, clinicians help patients to reframe hopes for cure to hopes for a death free from suffering (Breitbart & Heller, 2003). Exploration of the content of patients’ hope can help illuminate misunderstandings (e.g., they are still hoping for a cure when cure is not possible), but also clarify how potential treatments may or may not help contribute to achieving their goals (e.g., cessation of disease–directed chemotherapies when the goal is to spend time free from treatment side effects; Evans, Tulsky, Back, & Arnold, 2006). Physicians may face substantial barriers to opening discussions with patients about topics such as hopefulness, which have important emotional, psychological, and existential dimensions. There is evidence that physicians avoid engaging in communication about emotionally challenging issues, although female physicians may engage more than males (Roter & Hall, 2004). Barriers include the
The Content of Hope
pressures of time in a busy oncology practice and lack of physician training in discussing emotionally laden topics. There is, however, evidence that the skills important to successful communication with patients surrounding complex issues, such as hopefulness, can be acquired through training and education. Curricula such as Oncotalk (Back, Arnold, Tulsky, Baile, & Fryer–Edwards, 2003) can help oncologists to develop the skills needed to incorporate patients’ perspectives into clinical decision–making. Although such discussions are unlikely to occur during every visit, they may be especially relevant and necessary when major decisions about treatment arise. Additionally, other members of the clinical team such as chaplains or social workers can also provide further support in discussions about hope and can communicate this to the rest of the interdisciplinary team. The themes in our study have relevance for clinicians involved in patient care. We found that many patients with cancer express hope and value hope across the treatment continuum, even when a patient has accepted that cure is no longer possible (Johnson, 2007; Garrard & Wrigley, 2009; Rousseau, 2000). This should serve as a reminder to clinicians that patients have the capacity for hope whether cure is possible or not. Second, our data raise the hypothesis that, for most patients with cancer, the content of hope is multifaceted. Hope for a cure is only one of several primary domains of hope. Feeling normal, adapting new perspectives, and striving for future goals are also important. We interviewed one patient who expressed some discomfort in using or relying on hope, particularly early in the interview. Although this person rejected the concept of hope as central to the experience of having cancer, (s)he was later able to articulate particular hopes about the future that may be important in his/her understanding of his illness and expectations. This study has several limitations. Because it involved patients within a single medical center, it may not be representative of all patients with cancer, or even all patients with colorectal cancer, the only cancer diagnosis we included in the study. A majority of patients were White and Protestant,
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and the points of view of other patients may have not been adequately represented. It is also possible that, because hope is often framed as a positive coping strategy by groups such as the American Cancer Society, patients may not feel completely free to share negative perceptions and attitudes about hope; that is, social response bias may have played a role in patients’ recorded comments. Finally, this study was limited to a small sample of patients. Therefore, future studies should involve a much larger, diverse population that would extend beyond the scope of a single cancer center.
Conclusion We conclude that achieving an understanding of patients’ hopes requires listening to patients stories. Because hopes may not emerge until patients are given time to tell their stories, clinicians need excellent communication skills to elucidate patient hopes. Patients sometimes have very specific hopes that may have important implications for treatment decision making. Additionally, clinicians may gain important information about whether patients’ goals are realistic in light of their disease trajectory. In some cases, clinicians may be able to reframe patient hopes to those that are attainable, even in the face of terminal illness. By reaching a deeper understanding of the content of hope, cancer clinicians will be able to provide better support to patients at all stages of illness.
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