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Palliative care in cancer: managing patients’ expectations

Abstract Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well‐informed decisions about treatment options. This review aimed to explore this discrepancy between patients’ and physicians’ expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients’ awareness about prognosis; and (3) patients’ and caregivers’ perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients’ and doctors’ expectations was associated with many factors including doctors’ reluctance to disclose terminal prognoses and patients’ ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients’ experience and treatment choices. Patients’ views on disclosure are influenced by many cultural, psychological and illness‐related factors, therefore individuals’ needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients’ satisfaction with palliative care.


Introduction
Palliative cancer treatments including radiation therapy and chemotherapy play a major role in improving quality of life in patients with advanced cancer by controlling symptoms and relieving pain. Whilst providing prolonged disease control with many current techniques, they don't, however, offer a cure for the disease". 1 Considerable evidence suggests that patients receiving palliative therapies commonly have misunderstandings about their prognosis, 2 intentions of such treatments 3 and they hold unrealistic hopes of their cancer being cured. 4,5 In the United States, Nationwide study conducted by Weeks et al. 6 among 1193 patients receiving chemotherapy for stage IV cancers, 69% of patients with lung cancer and 81% of those with colorectal cancer did not understand that their treatment was not at all likely to cure their cancer. Another study looked into the expectations of patients with incurable lung cancer from palliative radiation therapy, and found that 64% did not report understanding that the treatment was not at all likely to cure them. 7 This study also found that 92% of patients with inaccurate beliefs about radiation therapy also had inaccurate beliefs about chemotherapy, indicating that this gap in patients' understating exists for multiple treatment modalities and provider types.
Without fully understanding their prognosis and the limitations of treatment, patients cannot make wellinformed decisions about treatment choices and end-oflife care. Patients who overestimate their prognosis are more likely to pursue aggressive treatments near their end of life. 8 Such therapies can result in reduced quality of life, 9 significant financial costs, 10 and an additional burden on the patient and their family, 11 particularly in the case of radiation therapy where daily visits for treatment are required.
A number of studies have also indicated that many cancer patients have unmet communication needs when it comes to discussing their prognosis and treatment goals. For example, Lobb et al. 12 conducted a study to determine patients' needs for information and emotional support after receiving treatments for haematological malignancies, 59% of patients reported that they would have liked to discuss their experience with diagnosis and treatment with a health care professional. In addition, a literature review looking into the communication goals and needs of cancer patients concluded that patients continue to have unmet communication needs, especially those related to their psychological concerns and preferred degree of involvement in decisionmaking. 13 This review aimed to investigate the discrepancy between physicians' and patients' expectations from palliative treatments by attempting to answer three main research questions: • What are the factors associated with the development of patients' unrealistic expectations from palliative therapies? • Why is complete disclosure important and how does it affect patients' mental/psychological wellbeing? • What are patients' and caregivers' preferences for receiving prognostic information?

Method
A search of databases including Pubmed, Medline, Science Direct, EMBASE and Google Scholar was carried out in October 2014, with no restrictions applied on papers' publication date. Various combinations of relevant terms and keywords were used to ensure a complete search of current literature, such keywords included but were not limited to "advanced Cancer", "communication of prognosis", "patients' expectations", "patients' preferences", "palliative therapies", "end-of-life discussions". The eligibility criteria for this review included English, peer-reviewed articles that involve advanced cancer patients, and address how they perceive prognostic discussions or end-of-life care. Studies describing caregivers' or health professionals' views on such issues were also included. In addition, selected papers were reviewed for significant references in order to include any studies that had been missed during the search. Figure 1 below includes a flow diagram summarising the search process and inclusion criteria used for the purpose of this review.

Results
The literature search returned 388 articles including randomised control trials, cohort studies, retrospective studies, systematic reviews and one ethnographic study. About 123 papers were initially excluded upon reading the title, and the remaining papers were selected for further exploration and assessment. This was done by reading the abstract of each article, reviewing its content and then determining which studies meet the inclusion criteria discussed earlier. A total of 65 articles met the inclusion criteria and provided both qualitative and quantitative data, which were then analysed and categorised into themes corresponding with the specific aims of this review. All these studies are listed in Tables 1-4, with a brief summary outlining the purpose, methods and findings of each one.

Discussion
Exploring cancer patients' expectations from palliative treatments is an intricate and multidimensional issue, because it is closely related to various sensitive issues such as disclosing terminal prognoses, planning end-of-life care, deciding on what information needs to be given and how to best convey it to the patient and their family members. There is also a substantial amount of research addressing these issues from the patients', caregivers' as well as the professionals' point of view. The use of the three primary questions introduced earlier was very helpful in guiding the literature search and the process of organising the findings.
What causes patients' unrealistic expectations?
One of the main factors contributing to patients holding unrealistic expectations is oncologists' reluctance to disclose information about the prognosis, especially when it is poor. 14,15 A study that included 258 physicians caring for 326 patients with terminal cancers reported that even when patients requested survival estimates, physicians favoured a frank disclosure only 37% of the time. 16 The same study found that physicians knowingly favoured providing overestimated/underestimated estimates to 40.3% of patients, while favouring no disclosure to 22.7%. Most physicians associated this reluctance with fear of causing distress, destroying hope or compromising the patient-doctor relationship. [17][18][19] Some also expressed that respecting the wishes of family members is one of the reasons they withhold information from patients. 20 Baile et al. 21 collected data from 167 oncologists attending the Annual Meeting of the American Society of Clinical Oncology in 1999, and 40% reported that they occasionally to almost always withhold information when requested by the family. It must be noted, however, that oncologists who were from Western countries were significantly less likely to comply with family requests (P < 0.001). An Australian study reported that requests to withhold information are commonly, but not always, received from family members who are from non-Western cultures. 22 Furthermore, it was found that both physicians and patients tend to participate in avoiding prognostic discussions. An ethnographic study observed 35 lung cancer patients throughout their consultations, X-ray appointments, therapy sessions and other treatment activities. The authors identified a quick transition, from discussing the patient's cancer and prognosis, into discussing treatment options and schedules. 23 It was finally concluded that both parties "colluded" in refocusing attention on the "treatment calendar" and ignoring the long-term trajectory of the illness, which ultimately led to patients developing false optimism about their recovery.
Other studies have also attributed such inaccurate beliefs to patients not understanding the prognostic information presented by oncologists. 24,25 Australian research indicated that more than half of the patients did not understand terms such as "median survival" and "relative/absolute risk reduction". 26,27 Patients may also misinterpret ambiguities, and statements such as "this cancer can be treated" or "the cancer is responding to  Subjects participated in structured interviews, which were audiotaped and transcribed. Doctors and health professionals were aware of the need to tailor information according to each patient's case. Physicians sometimes find it difficult to convey such information in a manner that is realistic, but also preserves hope. Another difficulty is the need to cater for both patients' and family members' needs.

US
Analysis of a court case Arato versus Avedon. Discuss the importance of balancing honesty and provision of hope.
The article reviewed the facts and implications of the case, and discussed the role of hope in medicine. Reluctance could be related to a desire to foster hope, or to a discomfort with putting odds on longevity, recurrence, and cure.
Anderlik et al. 20 2002 US 122 doctors. Identify reasons associated with doctors withholding information.
Subjects participated in questionnaires. The top five reasons for withholding information: sensitivity to patients'/families' cultural norms; patient's fragile emotional state; respect for the patient's expressed wishes; concern that information would destroy hope; and respect for family's expressed wishes.
Baile et al. 21  Audiotaped and transcribed focus groups and Individual interviews. A desire to restrict the patient's access to information by the caregiver or vice versa was reported by professionals to be one of the most challenging aspects of discussing prognosis and end-of-life issues. Requests to withhold information are commonly, but not always, received from family members who are from non-Western cultures.  Questionnaire and personal interviews. The majority of the patients did not understand terms such as "medial survival" and "relative/absolute survival. Most patient preferred information to be framed clearly and positively.
Lobb et al. 27 1999 AU 100 women diagnosed with earlystage breast cancer. Determine how much patients understand prognostic information, and their preferences on how to present this information.
Self-administered written questionnaire. Many did not fully understand the language typically used by surgeons and cancer specialists: 53% could not calculate risk reduction relative to absolute risk; 73% did not understand the term "median" survival.
Gaston et al. 28  treatment" can be taken to mean that they are going to be cured. 23,28 Higher levels of anxiety or depression, and lower levels of education were linked to an increased likelihood of patients misunderstanding the presented information. 29,30 Independent of factors associated with patients not receiving or understanding the information, some patients continue to hold false expectations even after a clear and realistic prognosis has been provided. 31,32 A pilot study developed a decision-aid tool to help better inform patients with advanced lung cancer about their prognosis and treatment options. Despite the enhanced understanding of potential outcomes and toxicities of therapies, many patients retained unrealistic hopes of their cancer being curable. 33 This suggests that although prognostic information may be provided by oncologists, the information might be rejected by some patients as part of a coping mechanism. Denial is a well-studied coping mechanism, which is used to deal with realities perceived to be threatening or unacceptable. 34 One study found that while the majority of patients acknowledged their diagnosis and had a realistic expected survival, about 10% chose not to believe in their terminal status and shortened life expectancy. 29 After surveying 244 cancer patients to assess both their levels of understanding and denial, Gattellari et al. 24 identified denial as a significant predictor of patients holding inaccurate beliefs about their prognosis and goals of treatments.
Why is complete disclosure important?
Over the past few decades, cancer patients have been taking a more active role in the decision-making process, and they are increasingly expecting to be involved in the management of their disease. 28,35 However, the fact that many advanced cancer patients hold inaccurate beliefs about their outcomes, brings up the question of whether enough information is being provided to support their ability to make the right decisions. In fact, it can be argued that without completely understanding their prognosis and the limitations of treatment, such patients may not be considered to have met the true standard of giving an informed consent to their treatment. 36 For patients to be able to make choices that are consistent with their needs, they have to be well informed about the expected benefits and risks of each treatment option. Patients with advanced cancer are willing to accept intense chemotherapy regimes even if they believe there is only a 1% chance of cure. 37 Weeks et al. 9 found that patients who expected a 6-month survival were 2.6 times more likely to pursue aggressive anticancer therapies instead of palliative treatments. These patients  Qualitative data collected through recorded, face-to-face, semi-structured interviews. Prognostic discussions may generate some psychological distress, but also help patient achieve a more meaningful end-of-life and help family members prepare for the future mentally and practically.
Heyland et al. 47   Assess the agreement between patients, caregivers, and clinicians on prognosis discussions, and to examine patients' and caregivers' desire for prognostic information.
Cross-sectional surveys. 46% of patients and 34% of caregivers did not agree that the clinician had said that the patient could die for the underlying illness. 83% of those who believed they had 1 year or less to live and 79% of those who believed they had 1 to 2 years wanted to discuss prognosis. 55% of patients and 75% and their caregivers who were interviewed retrospectively, reported that they would like to have discussed life expectancy with their physician.
Delvecchio et al. 51  Multi-centred surveys. Koreans (35%) and Mexicans (48%) were less likely than African Americans (63%) and Europeans (69%) to believe that patients should be told about a terminal prognosis, and less likely to believe that the patient should make decisions about the use of life-supporting technology. When disclosing information, physicians need to take into account patients' own personal views on disclosure.  Subjects received surveys in mail to express their preferences and also to measure their social and psychological characteristics. More than 40% of those who wanted qualitative or quantitative estimates failed to ask for it. Level of education had little or no influence on patients' preferences.
Older patients and those with higher anxiety scores were significantly less likely to request prognostic information, and having a poorer prognosis was also predictive of patients wanting less information.
Lobb et al. 55  Examine preferences of physicians for disclosure of cancer in Kuwait.
A cross-sectional survey conducted in public hospitals. While 67% preferred full disclosure of diagnosis, 79% would withhold the truth if asked by a family member. Withholding information was more common among physicians who had themselves been friends or family members of a cancer patient. had the same survival as others who received palliative care, but were more likely to be readmitted to hospitals, undergo attempted resuscitation or die during ventilator support. This indicates that patients who lack knowledge about the possibility of being cured may be compromised in their ability to make treatment decisions that reflect their actual needs.
Moreover, beliefs that disclosing prognostic information may result in increased anxiety and depression or destroy hope have not been supported by research findings. 38 Studies have found that increasing patients' awareness using audiotaped consultations, 39 or pre-and post-consultation questionnaires was not associated with increasing levels of anxiety, sadness or compromising the patient-doctor relationship. 40,41 Patients who reported having life expectancy, or end-oflife discussions with their physicians did not have higher depression levels; they also had lower rates of ventilation, resuscitation and earlier enrollment into hospice care. 42 Patients who did not know their terminal prognosis actually had greater levels of anxiety and depression. 29 Hope was maintained even after honest discussions that informed patients about having a poor prognosis, low likelihood of response to treatment or no chance of cure at all. 43 Similarly, hope increased or at least was preserved in parents of children with cancer after realistic information was given, even when prognosis was poor. 44 Disclosing a terminal prognosis allows patients to better cope with their illness, and shortens the necessary adjustment process. When information is given in a supportive and sensitive manner, it can create an atmosphere of openness and trust, in which patients are empowered to clarify priorities, reset goals, and focus their hopes on achievable possibilities such as a comfortable and meaningful end-of-life period. 42,44,45 Prognostic discussions have also been associated with facilitating family members' preparations for possible death, 46 and increasing caregivers' satisfaction with endof-life care. 47 Finally, surveys of patients and family members have demonstrated a great desire for detailed prognostic information. For example, in a national U.K study that included 2331 cancer patients, 87% wanted as much information as possible regardless of type or stage of cancer. 48 Similarly, in an Australian study the majority of patients wanted information about side effects and treatment goals (95%), longest survival with treatment (85%) and how long they have to live (59%). 49 In another study, 55% of palliative care patients and 75% and their caregivers who were interviewed retrospectively, reported that they would like to have discussed life expectancy with their physician. 50 How to approach discussing prognostic information?
While patients and caregivers are increasingly favouring full disclosure and more involvement in the decisionmaking process, physicians continue to face challenges when disclosing terminal prognoses. These challenges include considering their obligation to patient's autonomy, while deciding how much information needs to be given, and how much the patient wants to know. 17 Additionally, physicians sometimes find it difficult to convey such information in a manner that is realistic, but also preserves the patient's hope. 18,51 It is even more challenging when attempting to meet the needs of family members, 21 and patients from different cultural backgrounds with varying views on disclosure. 52,53 To investigate the optimal ways of approaching prognostic discussions, a review of current literature was performed to explore preferences of patients and caregivers regarding when and how they prefer such information to be provided.
In an Australian study involving 126 patients recently diagnosed with an incurable cancer, 59% wanted to know about expected survival when first diagnosed; 34 and 40% wanted to be asked about when they prefer discussing expected survival and dying, respectively. 49 Also, 45% of these patients wanted the specialists to be the one initiating such discussions. Only 11% said they never wanted to discuss dying/palliative care and 10% were unsure. Older patients and those with higher anxiety scores were significantly less likely to request prognostic information, and having a poorer prognosis was also predictive of patients wanting less information. 54 The majority of patients from English-speaking backgrounds prefer a detailed prognosis, [54][55][56] where as those from other backgrounds such as Greek, 52,57 Italian, 58,59 Japanese, 60 Chinese, 61 , and Middle Eastern 62,63 seem to vary, with a tendency to prefer non-disclosure.
Several aspects have been identified to affect patients' satisfaction with the communication style of conveying prognostic information. For example, the level of honesty and straightforwardness, simplifying the information and using more than one way to present the message. 64 Believing that the provision of information was not honest, direct or detailed enough may lead to more frustration and uncertainty as patients perceive that the doctor is withholding even more frightening information. 39 Pacing the information, expressing empathy, compassion and allowing patients to ask questions or address concerns also enhance the communication process.
Finally, one of the most important aspects of disclosing a poor prognosis is the provision of hope, with patients expressing a continuing need for hope even after they have accepted their terminal status. 64 Behaviours known to increase hope include being offered most up-to-date treatment, oncologist appearing to know everything about the cancer, being told all treatment options and that pain will be controlled, occasional use of humour and an indication that health professionals are not giving up, and that the patient will not be abandoned. 64,65 Contrarily, behaviours that decrease hope include doctor appearing nervous/uncomfortable, giving prognosis to the family first, avoiding prognostic information, or only talking about treatments. 65 Overall, younger patients and those who are more anxious, expressed a greater need for emotional support for themselves and their families, while patients who had been diagnosed with a metastatic disease for longer times and those with longer life expectancy were more likely to favour realism. 65

Conclusion
Patients with advanced cancer commonly have misunderstandings about their illness, overestimate their prognosis and hold unrealistic expectations from their palliative treatments. This is not surprising when considering all the challenges associated with discussing sensitive issues such as a terminal prognosis, lack of cure and end-of-life care. However, without fully understanding their prognosis and the limitations of treatment, patients may be compromised in their ability to make choices that are consistent with their needs. As a result of this lack of understanding, patients may choose to undergo futile long-course therapies at the expense of quality of life.
Communication styles play a major role in patients' experience; sensitive and supportive communication of information that encourages patients in decision-making has shown to provide hope by helping patients develop coping strategies and focus their goals on achieving a comfortable and meaningful end-of-life period. It must be remembered, however, that patients have very different views on disclosure, and these views are influenced by many factors including cultural backgrounds, belief systems, coping strategies and extent of the disease. Therefore, it is recommended that oncologists adopt a more patientoriented approach and consider individuals' needs when discussing prognostic information. Also, considering the high level of information needs reported by patients, it is recommended that more research is conducted in order to define the relation between prognostic awareness and patients' satisfaction, identify communication barriers faced by patients and the interventions that could be used to overcome such barriers. It would also be interesting to investigate how patients' high expectations from palliative therapies would affect their compliance to finish the intended course of treatment, especially because conclusive data on this topic are still lacking.