Abstract
Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers.
Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis.
Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting.
Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful.
Palliative care is interdisciplinary care that aims to improve quality of life for patients living with any serious illness, and their families; ideally, it begins at diagnosis and is provided concordantly with other disease-directed treatments.1 Early palliative care is encouraged by international agencies such as the World Health Organization, which states explicitly that “palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.”2 Several studies have shown that early involvement of specialized palliative care services for patients with advanced cancer improves quality of life, increases satisfaction with care and mitigates depression.3–5 Nevertheless, referrals to palliative care are typically made late in the disease course.6,7
Negative attitudes toward palliative care among patients and caregivers are often cited by physicians as a reason for late referrals to palliative care services,6,8 and a change of name to “supportive care” has been proposed.8,9 Although some studies have reported on attitudes of oncologists and other physicians toward palliative care and its name,6,8,10–12 there has been scant research on the perspectives of patients and caregivers. Previous surveys of patients and/or caregivers have solicited opinions about either the quality of palliative care received13,14 or about the acceptability of the name “palliative care” versus “supportive care” for those who might be referred.9,15 With the exception of a study that validated a measurement tool to assess perceptions of palliative care,16 a detailed exploration of how patients and their caregivers perceive palliative care has been lacking.
We previously conducted a cluster randomized controlled trial that compared early palliative care with usual practice in patients with advanced cancer, which showed benefits favouring the intervention group in quality of life, symptom control and satisfaction with care.5 After completion of the trial, we conducted qualitative interviews with participating patients and their caregivers. Our principal aim was to examine perceptions of palliative care of participants who had been randomly assigned to an early palliative care intervention or to a control group. Secondary aims included examining the probable sources of these perceptions, the potential influence of the intervention on these perceptions, and opinions about renaming palliative care.
Methods
Setting
Details of the cluster randomized controlled trial are available elsewhere.5 The study took place at Princess Margaret Cancer Centre, a comprehensive cancer centre in Toronto. Twenty-four medical oncology clinics from the 5 largest site groups (Lung, Gastrointestinal, Genitourinary, Breast and Gynecologic) were randomized such that patients in the clinics of the intervention group received early referral to a palliative care team (consultation and follow-up in an outpatient oncology palliative care clinic at least monthly for the 4-month trial duration, with additional visits as required) whereas patients attending clinics of the control group received standard oncology care (no formal intervention, but palliative care referral was not denied, if requested). Caregivers in the intervention group were not required to attend clinic visits but did so at their discretion. The study was approved by the University Health Network Research Ethics Board.
Participants and masking
Eligibility criteria for the trial were a diagnosis of advanced cancer, estimated survival of 6–24 months (by the primary oncologist), and Eastern Cooperative Oncology Group (ECOG) performance status of 0, 1 or 2.17 Exclusion criteria were insufficient English literacy to complete questionnaires and inability to pass a cognitive screening test.18 Primary caregivers were identified by participating patients, and were eligible for inclusion if they were 18 years of age or older, and had sufficient English proficiency to participate in an interview.
Although complete masking was impossible, patients and caregivers provided written informed consent to participate in their own study group, without awareness of another group. Thus, those in the control group were unaware of an early palliative care arm in the trial.
Recruitment and interviews
At the end of the trial, patients and caregivers were approached in person or by telephone for participation in the qualitative study. Recruitment was purposive, with the aim of interviewing patients and caregivers from both the control and intervention groups, with a mixture of high and low scores on measures of quality of life and satisfaction with care, and participants who were older and younger, and male and female.19 Recruitment ceased when theoretical saturation of data was attained (i.e., no new information was being obtained from additional participants).20 Trained research personnel conducted the semistructured interviews, which were done on an individual level, were audiotaped in a private room and lasted about 60 minutes; field notes were made after the interview. Interviews were conducted following a guide (Appendix 1, available at www.cmaj.ca/lookup/suppl/doi:10.1503/cmaj.151171/-/DC1), which included questions about participants’ initial perceptions of palliative care (before the trial), probable sources of these perceptions, participants’ reactions to discussions about palliative care, perceptions after participating in the trial and opinions about renaming palliative care.
Data analysis
The grounded theory method guided data collection and analysis.20,21 We chose this approach because it provides a systematic yet flexible guideline for collecting and analyzing qualitative data to construct explanations, or theories, “grounded” in the views of the participants.21–23 All audiotapes were transcribed verbatim; accuracy was further ensured by an independent rater, who listened to the audiotape while reading and correcting the transcript. Four coders analyzed the data by using an inductive constant comparison method.21 This approach involved systematically reading the transcribed interviews, identifying themes and then proceeding to verify, confirm, qualify and explain these themes by comparing data within and between interviews. To ensure rigor and minimize coder bias, we reviewed and compared emerging codes and written notes at weekly team meetings. Reflexivity, or the critical examination of the researchers’ influence on the research process,24 was addressed using field notes, reflective writing after interviews and team discussions. We examined negative cases (i.e., examples that appeared to run counter to the emerging propositions) to refine the themes and their interpretation.25 NVivo 8 software facilitated the analytical process.
Results
We approached 85 patients and 50 caregivers for participation in the qualitative study, and 71 consented to participate: 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control). The main reasons for declining participation were feeling unwell or caring for an unwell patient, lack of time or interest, and the palliative care content of the interview (7 control group participants). All interviews were conducted in person except for 3, which were conducted by telephone. All participants completed the entire interview.
Table 1 shows characteristics of the patients and caregivers. In the intervention group, patients had a median of 5 visits to the palliative care clinic, and caregivers had a median of 4 visits. We identified themes within each of the 5 main topics covered during the interview. The themes and representative quotations from participants in the intervention and control groups are presented in Tables 2–6. Perceptions were similar among patients and caregivers within each trial group.
Baseline characteristics of 48 patients and 23 caregivers
Representative quotations about initial perceptions of palliative care
Representative quotations about sources of perceptions of palliative care
Representative quotations about initial reactions to palliative care
Representative quotations about perceptions after receiving early palliative care
Representative quotations about renaming or reframing palliative care
Initial perceptions of the meaning of palliative care
Patients and caregivers in the intervention and control groups had strikingly consistent descriptions of their initial perceptions of palliative care, both within and between groups (Table 2). A prevailing theme was that palliative care was synonymous with death and with care in the last weeks of life. One participant stated bluntly, “There’s no real meaning besides death” (P004c; first letter refers to patient [P] v. caregiver [C]; second letter refers to intervention [i] v. control [c]). Others spoke about control of symptoms and quality of life, but always in the context of end-of-life care: “It was always associated with a good death and a good dying, but the presumption was that there was dying to be had as opposed to a potential lengthening of life” (P049c); “There are other things that come to mind. There’s quality of end stage of life but again that all relates to death” (P040i). Palliative care was perceived as a passive form of care, when there was “nothing else that can be done” and “no hope.” There was a strong association with being incapacitated, bedridden and incapable of self-care, and with care in “places that you never get out [of] again” (P047c). Participants also expressed uncertainty regarding the meaning of palliative care, with some qualifying their statements by saying that they were unsure of the exact meaning of the term, and others claiming they had “no idea” of what it represented.
Sources of perceptions of palliative care
Many participants in both trial arms stated that they had previous experiences with family or friends with a terminal illness who had “gone into palliative care” (Table 3). In these situations, palliative care had generally been presented by health care professionals as an option of last resort, often apologetically: “I’m sorry, I think we’ve got to put her into palliative care” (P023i); “We can’t do anything else, he’s in palliative care” (P031i). Experiences of participants as patients within the cancer system also influenced their impressions. Some patients stated that their health care providers delayed palliative care, equating it with end-of-life care and assuring them that they were “not there yet” (P033i). Others stated palliative care had been presented to them as an alternative to further treatment: “I said, ‘I’m not taking radiation,’ and she [radiation oncologist] says, ‘Well then, you know, it’s maybe time that we set you up with palliative care’” (P004c). The media were another source of information; participants reported that palliative care was generally presented as end-of-life care in palliative care units or hospices. Still others stated that they had “always known” about palliative care or were unsure of how their impression had been formed.
Initial reactions to palliative care
In keeping with the perceptions or interpretations of the meaning of palliative care, participants in both groups described feeling “frightened” and “shocked” when palliative care was introduced (Table 4). Avoidance and resistance were common reactions, particularly in the control group: many stated that they tried not to think about palliative care, and did not want to “dwell on the negative.” Others did not feel the subject was relevant for them, because it was “far away” and they were “optimistic”; this included some patients in the intervention group who felt that they did not “qualify” for palliative care, but were willing to participate in research to help others. In the intervention group, resistance to participating in a palliative care intervention was a prominent theme, but participants also stated that their initial misgivings were allayed by an explanation of the rationale for early palliative care by their oncologist or by the research team during the recruitment process: “Well, when I hear palliative care, ... naturally, I think, ‘Oh God, I’m not long for the world,’ but then when she explained it to me ... I thought, well people should have thought of that before” (P031i).
Perceptions after receiving early palliative care
Participants in the control group described no difference between perceptions of palliative care before and after the trial. In contrast, among those in the intervention group, fear was generally replaced after contact with the palliative care team by a “more comfortable” attitude toward palliative care and a broadened understanding of it being “more of a long-term [situation],” with the palliative care team being an “advocate for health care” (Table 5). Participants described a sense that the inclusion of the palliative care team was the “new normal,” stating that their contact with the team had removed its stigma, had increased their “quality of living” and had given them confidence that they would have resources to cope. However, many participants still felt uncomfortable with the term palliative care in relation to themselves, especially when discussing their care with others, who might think they were imminently dying. Some chose to relabel the care they were receiving as “symptom control” or to refer to their palliative care physician as their “medication specialist” or “pain specialist.” Others stated flatly that they felt palliative care was not the correct term for the care they were receiving. Palliative care tended to remain a term that “emotionally has a lot of weight to it.”
Renaming or reframing palliative care
Participants in the intervention group stated strongly that the end-of-life association of palliative care did not represent the care they had received and that this “disconnect” was problematic (Table 6). A prominent theme was that palliative care should be explicitly rebranded: “That shell of meaning that surrounds palliative care has to somehow change” (P015i). Participants suggested public education, poster campaigns and routine involvement of palliative care at diagnosis as options for destigmatizing palliative care: “When you get it right from the get-go you just think, ‘Okay, they’re part of the team. That’s great’” (P010i). Direct explanation by an oncologist “educated on palliative care,” who could present it in a nonthreatening way as “part of the treatment package,” was considered by participants to be more helpful than relying on written material. A related theme was that palliative care should be renamed if provided early: “I think you have to really think about a name that would outline what you’re trying to do. You’re not trying to help someone in their last days” (P007i). None who advocated for a name change offered a more suitable name (“Greater minds than mine can come up with a snappy little title” [P034i]), but when the name “supportive care” was suggested, it was met with approval.
Participants in the control group generally saw no purpose in renaming or reframing palliative care but also did not find it relevant to their own situation. They were unaware of the concept of early palliative care, equated palliative care with end-of-life care, thought that renaming palliative care would be euphemistic and found the name “supportive care” too vague. In the intervention group, this opinion was less common, held by caregivers or older patients with a pragmatic, “realistic” attitude to end-of-life care: “Well, I’ll be 80 in June and I feel that if I haven’t thought about dying at this stage I’d better smarten up a bit” (P028i).
Interpretation
In this study, patients with advanced cancer and their caregivers described palliative care as carrying a negative stigma associated with death and with care at the very end of life, which provoked fear and avoidance. Participants’ perceptions often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader, positive conception of palliative care but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting.
Previous surveys have described attitudes to palliative care of the public and of health care workers. A recent survey of 1000 American adults documented that only 24% were familiar with the term palliative care, whereas 86% were familiar with the term hospice care.26 In a qualitative study in Northern Ireland involving 50 members of a group reporting on health and social care issues, palliative care was conceptualized mainly as terminal care.27 Other surveys have solicited opinions of physicians and nurses, who tended to associate palliative care with terminal care,10,12 voiced confusion about the role of specialized palliative care,10,12 and felt the term palliative care decreased hope and caused distress in patients and families.8 Our study contributes the important perspective of patients and their caregivers, including those who received early palliative care.
There may be several reasons for the confusion surrounding the term palliative care. Palliative care has evolved relatively quickly from an initial mission centred on terminal cancer care28 to one urging that “the principles of palliative care should be applied as early as possible in the course of any chronic, ultimately fatal illness.”29 The 1990 WHO definition of palliative care that stressed its relevance for “patients whose disease is not responsive to curative treatment”30 was changed in 2002 to underscore improvement in quality of life, prevention as well as relief of suffering, and early proactive intervention.2 However, definitions of palliative care are inconsistent, even to some extent within the palliative care literature and among palliative care organizations.31,32 Among referring physicians there is variable awareness or acceptance of the new broadened definition of palliative care, with many continuing to equate palliative care with end-of-life care.8,11,12 In our study, participants’ perceptions of palliative care were derived in large part from contact with the medical system. It is therefore important that physicians and other health care professionals are familiar with the broadened definition of palliative care and are able to explain it to their patients.
The stigma associated with palliative care relates to a larger societal stigma associated with death;33 however, patients and their caregivers were generally able to speak openly about the terminal nature of their disease or that of their loved one. They understood that the cancer was incurable, but there was variability and mixed emotion in their coming to terms with this. Most patients were still receiving cancer treatment and hoped that this could forestall death. In this transitional stage of illness,34 many did not feel ready for the term palliative — which in their minds was associated with being bedridden with weeks to live — to be applied to them or their loved ones.
Rebranding and renaming palliative care were proposed by participants in the intervention group as ways to address the discordance between the early palliative care they had received and their persistent association of the term palliative care with end-of-life care. Similar results have been reported in surveys where participants were randomly assigned to different program names and descriptions to rate their impressions. In these studies, participants responded more favourably to a program called “supportive care,” rather than “palliative care,” regardless of the description of that service.9,15 At least 1 oncology palliative care service reported earlier outpatient referrals after such a name change,35 although oncologists did not perceive that they had changed their referral practices.36
Strengths and limitations
Strengths of our study include the large qualitative sample and the inclusion of both patients and caregivers. Owing to the cluster randomized design, with masking of groups to each other’s existence, we were able to obtain opinions of both those who had experienced an early palliative care intervention and of those who had no knowledge of this intervention.
Limitations of this qualitative study relate primarily to generalizability.25 The study took place at a single centre with an established palliative care clinic.37 Similar to the larger trial,5 participants were highly educated; this was particularly the case for participants in the intervention group. Almost all patients were of European background. Despite purposeful sampling, women were overrepresented in the intervention group for patients and in the control group for caregivers. The participants interviewed may have had more favourable attitudes to palliative care than others receiving care for advanced cancer. Indeed, there were 7 patients in the original trial5 and 7 in this qualitative study who declined participation because of the palliative care content of the intervention or interview.
Conclusion
Patients and their caregivers in both trial groups perceived palliative care to have a negative and frightening association with death, hopelessness and dependency. Although this perception changed for participants in the intervention group, many continued to feel a stigma associated with the term palliative care and felt that rebranding or renaming palliative care could be helpful.
Our findings have important implications for practice and policy. They show the persistence of the definition of palliative care as end-of-life care in the minds of patients and their caregivers, despite an international change in that definition more than a decade ago. A name change may be considered, but would achieve nothing without a fundamental shift in the manner in which palliative care is practised and portrayed. Physicians should be aware that the manner in which they communicate information about palliative care affects perceptions of its meaning and decision-making about receiving such care. From a policy perspective, it is evident that broad-based education is necessary to ensure a more widespread understanding of what palliative care represents and entails.
Acknowledgements
The authors extend their sincere thanks to the patients and caregivers who participated in this study. The authors are grateful to the medical oncologists who referred patients to the trial and to the clinical and administrative staff of the palliative care team at the Princess Margaret Cancer Centre. Special thanks to Debika Burman, Nanor Kevork and Ashley Pope (Department of Supportive Care, Princess Margaret Cancer Centre) for their assistance with preparation of study materials, recruitment of patients, assistance with conduct and analysis of qualitative interviews, and data entry and preparation.
Footnotes
CMAJ Podcasts: author interview at https://soundcloud.com/cmajpodcasts/151171-res
See also www.cmaj.ca/lookup/doi/10.1503/cmaj.160206 and www.cmaj.ca/lookup/doi/10.1503/cmaj.160547
This article has been peer reviewed.
Contributors: All of the authors contributed to the conception and design of the study. Nadia Swami conducted and supervised qualitative interviews. Camilla Zimmermann, Nadia Swami and Breffni Hannon contributed to the qualitative analysis of the data. All of the authors contributed to the interpretation of data. Camilla Zimmermann drafted the article, which all of the authors revised. All of the authors gave final approval of the version to be published and agreed to act as guarantors of the work.
Competing interests: Camilla Zimmermann reports grants from the Canadian Cancer Society and funding from the Ontario Ministry of Health and Long-Term Care to her institution. She is also the Rose Family Chair in Supportive Care. No other competing interests were declared.
Funding: This research was funded by the Canadian Cancer Society (grants 017257 and 020509 to Camilla Zimmermann) and by the Ontario Ministry of Health and Long-Term Care. Camilla Zimmermann is supported by the Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto. The views expressed in the study do not necessarily represent those of the sponsors, and the sponsors had no role in the design or conduct of the study; collection, management, analysis or interpretation of the data; preparation, review or approval of the manuscript; or in the decision to submit the article for publication.
- Accepted January 18, 2016.
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