Narrative review of prognosis related communication in advanced cancer patients
Review Article

Narrative review of prognosis related communication in advanced cancer patients

Karam Al-Issa, Paul R. Helft

Department of Medicine, Division of Hematology/Oncology, Indiana University Melvin and Bren Simon Comprehensive Cancer Center, Indiana University School of Medicine, Charles Warren Fairbanks Center for Medical Ethics, Indiana University Health, Indianapolis, IN, USA

Contributions: (I) Conception and design: Both authors; (II) Administrative support: Both authors; (III) Provision of study materials or patients: Both authors; (IV) Collection and assembly of data: Both authors; (V) Data analysis and interpretation: Both authors; (VI) Manuscript writing: Both authors; (VII) Final approval of manuscript: Both authors.

Correspondence to: Paul R. Helft, MD. Department of Medicine, Division of Hematology/Oncology, Indiana University Melvin and Bren Simon Comprehensive Cancer Center, Indiana University School of Medicine, Charles Warren Fairbanks Center for Medical Ethics, Indiana University Health, 535 Barnhill Dr, RT473, Indianapolis, IN 46202, USA. Email: phelft@iu.edu.

Objective: In this review we will focus on doctor-patient communication as one of the most important modifiable factors which may have a significant impact especially on the important transition between the ambulatory and terminal phases of cancer.

Background: High quality communication about prognosis for cancer patients is a critical component of advance care planning, and it plays a critical role among all the complex factors that affect end of life care decisions. In this review we focus on doctor-patient communication as the most important modifiable factor impacting the transitional period between the ambulatory phase and the terminal phase of cancer. We also discuss how prognostic understanding among advanced cancer patients influences decisions in regard to their cancer care.

Methods: We investigated studies that examined advanced cancer patients and prognosis-related communication.

Conclusions: We believe that oncologists’ skills, experience, and comfort level in managing patients’ reactions to negative information is a principal barrier that contributes substantially to the deficit of high-quality prognosis-related communication described in the literature. We also believe that it is useful to categorize oncologists with regard to their ability to engage in high quality communication, and we suggest category-specific strategies to improve oncologists’ skills to conduct more effective prognosis related communication with their patients.

Keywords: Prognosis; advanced cancer; communication skills


Submitted Jan 19, 2021. Accepted for publication Jun 17, 2021.

doi: 10.21037/apm-21-142


Introduction

We present the following article in accordance with the Narrative Review reporting checklist (available at https://dx.doi.org/10.21037/apm-21-142).

Background

“Prognosis” derives from a Greek word that means fore-knowing or foreseeing. In a medical context it means the prediction or estimation of the chance of recovery or survival from a specific disease. Prognosis in cancer patients can depend on several factors, such as the stage of the disease at diagnosis, type and subtype of cancer, and the molecular profile of the tumor. Communicating estimates of prognosis is one of the most important duties physicians fulfill with their patients (1). Discussing prognosis is a critical step in managing cancer patients, but it is often avoided during patient encounters, so oncologists may fail to raise this important topic by asking patients if they would like to hear about their prognosis or discuss it too briefly or too vaguely. Patients may avoid asking the question or request not to discuss prognosis because of fear, grief, or anxiety. Inadequate understanding of prognosis may therefore result from both oncologist- and patient-specific factors.

According to the World Health Organization, it is estimated that approximately 10 million patients die from cancer every year worldwide, while in the United States, it is estimated that 600,000 patients die from cancer every year. In Europe, cancer deaths total 1.9 million annually. Many of these patients experience lower-quality prognosis-related communication from their oncologists. The persistence of such inadequate patient-clinician communication with advanced cancer patients is highlighted in multiple studies in the literature. Such suboptimal communication leads to lower-quality end of life experiences (2,3).

Markers of lower quality end of life care include—among others—dying in the hospital, late receipt of chemotherapy, and late referral to hospice programs. Studies have suggested that 20–25% of US cancer patients are over-treated near end of life and experience low quality deaths. The intensity of cancer treatment at the end of life for many advanced cancer patients remains high (4). Studies have shown that health care use and associated expenses in the last 4 weeks of life often rise (5,6).

In Medicare beneficiaries, researchers have found that 26–33% of cancer patients received chemotherapy in the last 6 months of life, 20–23% in the last 3 months of life, and 9% in the last month of life (7). This appears to occur despite the fact that both the American Society of Clinical Oncology (ASCO) and National Quality Forum (NQF) recommend less intensive therapies in the last few weeks of life for cancer patients (8-10).

On the other hand, utilization of palliative care and hospice toward the end of life remains sub-optimal. Recent studies have shown that half of patients who are referred to hospice die within 3 weeks, and 35.7% of patients die within 1 week (11). In the Medicare Payment Advisory Commission (MedPAC) March 2019 Report to Congress, it was reported that more than one-quarter of hospice decedents enroll in hospice in the last week of life, a length of stay that is commonly thought to be of less benefit to patients than enrolling earlier (12).

Even though the causes of over treatment of cancer patients toward the end of life are complicated, multiple lines of evidence have found a correlation between better prognostic understanding and preferences for less intensive treatment at the end of life, suggesting that higher quality prognosis-related communication may contribute to patients’ choices and receipt of higher quality care close to death (11,13). Poor quality communication can therefore lead to poor clinical outcomes. However, it can also affect patients ethically and psychologically, since cancer patients deserve to understand their prognosis in order to make considered decisions within the framework of their values and preferences.

Prognosis related communication among advanced cancer patients

Evidence has long existed to support the idea that understanding of disease prognosis affects treatment choices. Many trials have shown that patients are more willing to avoid aggressive treatment interventions when they better understand their poor prognosis (14,15).

The degree to which oncologists engage in prognosis related communication appears to be variable. In one large study of cancer patients on palliative chemotherapy, only 39% of patients reported that prognosis was discussed by medical oncologists (16). Other studies found that physicians never discussed prognosis with families more than 50% of the time (17-20).

In addition to these observational studies, Step and Ray led a study in which they interviewed 30 female cancer patients about their encounter with prognosis discussion during initial diagnosis and at the time of recurrence (21). Study participants reported that, during initial diagnosis conversations, physicians communicated about prognosis optimistically. However, later at the time of disease recurrence, these conversations focused to a greater degree on logistics of disease management. In addition, greater uncertainty was communicated during those recurrence conversations, which led to tension-filled “prognosis dance[s]” where both doctors and patients were seeking to avoid information (21).

Similarly, when oncology nurses were surveyed about their perceptions of the quality of prognosis related communication among the oncologists with whom they work, similar patterns emerge. In a national survey of a random sample of US oncology nurses, 25.1% of nurses agreed that oncologists rarely or never kept them informed about their prognosis related communication with advanced cancer patients, and 72% agreed or strongly agreed that physician discomfort with giving bad news was a major barrier to helping patients and families understand their prognosis. In addition, 26.1% disagreed or strongly disagreed that physicians had skills in handling prognosis related communication. Thirty percent (30.2%) of nurses felt that physicians rarely addressed end of life matters early in the course of disease, and 32.8% of nurses agreed on that, when patients did not seem to perceive their prognosis, it was because their doctors had not fully discussed it (3).

Prognosis and therapeutic misconception

Measured prognostic understanding among advanced cancer patients is variable, and many studies suggest that advanced cancer patients frequently report prognostic or therapeutic misconception. A review article of 37 studies in the literature showed that around 75% of advanced cancer patients reported unawareness of their poor prognosis (2). Such “prognostic misconception” has also been documented in other studies. Weeks found in a study of more than 1,000 patients with metastatic lung or colorectal cancer receiving palliative chemotherapy that 69% of lung cancer patients and 81% of colorectal cancer patients appeared not to understand that their chemotherapy was not intended to cure their cancer (22). Many other studies have found that cancer patients frequently were not aware of the intention of their treatment (1,23,24).

Such prognostic and therapeutic misconception may contribute to the uptake of non-beneficial disease-directed therapy toward the end of life by inhibiting acceptance of the inevitability of impending mortality. A study by Mack et al. has shown that patients are more likely to undertake more intensive treatment at the end of life when they overestimate their prognosis (25,26). Furthermore, a study by Silvestri suggested that patients with lung cancer would not have chosen to accept the anti-cancer therapy they chose if they were fully aware of their prognosis and risks and benefits of palliative chemotherapy (27). One other study examined advanced cancer patients who reported more accurate understanding of their prognosis and showed that they are less likely to agree to receive intensive therapy at end of their lives (28).

In this review we will focus on doctor-patient communication as one of the most important modifiable factors which may have a significant impact especially on the important transition between the ambulatory and terminal phases of cancer. We would like to highlight the importance of high-quality communication between cancer patients and their providers and how this can lead to better understanding of cancer prognosis, which in turn leads to better decision making during this critical period of patients’ lives. We propose that the quality and/or effectiveness of communication will have meaningful downstream effects on decreasing the intensity of therapy that patients receive at the end of life.


Methods

We investigated studies that were published between 1998 and 2019, while we focused on studies that examined advanced cancer patients and prognosis-related communication. We used the following keywords: prognosis, advanced cancer, and communication skills. Most of these studies were available in the PubMed data base. Based on this critical review, we came to hypothesize that we could classify physicians into three broad categories in regard to their communication skills. We concluded that this conceptual framework could be a useful way to understand differences in communication skills, which in turn suggests that different approaches to improving the quality of communication are needed. Table 1 presents the major studies we investigated.

Table 1
Table 1 List of studies investigated in this narrative review
Full table

Discussion

Causes of lower quality prognosis related communication

Multiple factors can lead to physicians’ lower participation in prognosis-related communication, including the desire to balance efforts to sustain hope and to deliver accurate information, variable information preferences among patients, variability of information preferences over time, and inaccuracy or uncertainty of prognosis. One qualitative study examined the barriers to high-quality communication about prognosis and grouped the barriers into: (I) physician-related barriers (e.g., personal bond, emotional discomfort); (II) patient-related barriers (e.g., patient characteristics, diversity, language barriers); and (III) family-related barriers (e.g., differential belief in or acceptance of provided prognostic information) (29).

With regard to physician-related barriers, multiple studies have examined the reasons behind this ellipsis of detailed communication about disease prognosis and care at the end of life by physicians. For example, Lamont showed that, even when patients request information about their prognosis specifically, physicians only offer an estimate 37% of the time (30). In other studies, oncologists express concern about having their patients view them less favorably if they share detailed information about prognosis, or that such information would make patients feel needlessly hopeless or upset (22,31). Despite these concerns, multiple studies document that patients with life-ending disease do not lose hope, suffer, or die earlier as a result of end-of-life conversations (32-34).

Other reasons physicians may avoid these discussions include the perception that such discussions are time consuming, or the fear that physicians will be held accountable for an inaccurate estimate. Although less well described and documented in the literature, we suggest that physician’s personal skills and comfort with managing patients’ reactions to hearing negative or bad news is a central impediment to prognosis-related communication, as physicians fear triggering strong emotional responses with patients, and/or may feel ill-equipped to manage the emotional reactions (35).

The large body of evidence we have partially reviewed here suggests that approximately one-third of oncologists avoid or rarely engage in prognosis related discussions and/or lack the skills they need in this area. We suggest that patients of these oncologists may thereby receive lower quality prognosis-related communication, have fewer opportunities to understand and accept their prognosis, which in turn contributes to preferences for over-treatment at or near the end of life.

Some of the barriers that lead to this avoidance of such communication can be generalized to all interpersonal interactions. Maynard’s work on the communication of bad news suggests that there is a social norm that marks the action of delivering bad news as a “dis-preferred” social action (36). Such models may help contextualize why doctors avoid or delay communicating bad news or attempt to qualify or mitigate the news.

Studies also suggest that, because of their own anxiety, physicians tend to avoid discussing the emotional and social impact of patients’ problems. This negative emotional feedback to patients’ distress has been found to negatively affect physicians themselves emotionally and, in turn, tends to elevate patients’ distress (35). In summary, the fear of not being able to appropriately handle patients’ acute distress, and/or that disclosure of negative information will have a detrimental effect on the doctor-patient relationship are major factors in physicians’ reluctance to discuss negative news such as prognosis.

Lastly, oncologists may perceive that an accurate communication of a poor prognosis can affect hopefulness negatively. A 2003 study examined the effects of hopefulness on accurate prognostic understanding. A total of 179 patients enrolled in a phase I study were interviewed using items from the Functional Assessment of Cancer Therapy-General instrument (FACT-G). The study found that hopefulness and coping were positively correlated, whereas hopefulness was negatively associated with accurate prognostic understanding (37). Furthermore, 84% of patients in this study had an overly optimistic estimate of their prognosis, with more educated patients demonstrating a more realistic awareness of prognosis and female respondents reporting more realistic estimation of their prognosis than males (37).

Suggestions to improve prognosis related communication with advanced cancer patients

A review of the literature and personal experience suggest that physicians are not equal in their ability to engage in high quality prognosis-related communication with advanced cancer patients. Many factors contribute to these differences in oncologists’ ability and willingness to handle these conversations, such as how comfortable they feel managing the emotional reactions that ensue. Several studies have examined different methods to improve physicians’ communications skills. There are multiple programs that focus on communication skills for healthcare providers. The simplest of these consist of online videos that can be watched while the viewer can observe a virtual conversation between a skilled healthcare provider and a sick patient in order to observe high quality examples of how to approach these patients. Healthcare workers can use these maneuvers or phrases in certain situations for breaking bad news, discussing prognosis or referring to hospice.

More complicated forms of communication skills training involve interactive live courses, where participants can first observe how these stressful conversations are handled, then take turns participating in role play, ending by receiving feedback from expert trainers. Such courses can last for few days and they usually cover multiple situations, starting from breaking bad news to discussing prognosis and to making referrals to hospice, and ending in teaching how to approach an actively dying patient.

One systematic review suggested that communication skills courses may benefit cancer care professionals (38). This review concluded that programs for communication skills training are useful for healthcare professionals who work in cancer care, and lead to increased satisfaction among health care professionals by improving communication skills, knowledge and confidence, along with changes in attitudes. On the other hand, the review found no evidence that skills training can improve the ability to detect patients’ distress. Furthermore, the evidence that physicians who are not skilled at baseline can improve with skills training interventions is mixed, and it is not clear if those interventions are really helpful for physicians who may intrinsically lack this type of “emotional intelligence” (39-41).

Overall, the goal of these courses is to make providers more comfortable in initiating difficult conversations related to discussing prognosis and end of life care. So skills training may improve the quality of end-of-life communication with advanced cancer patients, although evidence of the effectiveness of such skills training on diverse groups or at longer time from training is lacking. However, it is reasonable to assume that, to the extent that communication skills training can improve the quality of clinicians’ communication skills, it will also contribute to better understanding of prognosis-related information and provide a framework for appropriate patient-centered decision making.

Different approaches for differently-skilled oncologists

As we consider approaches to improving end of life communication for cancer patients, and based on the broad review presented above, we believe that it is both valid and useful to group oncologists into three broad categories with regard to their ability to engage in high quality communication with their advanced cancer patients. We base these categories roughly on data we have reviewed above regarding evidence for variable skills among clinicians: highly skilled, moderately skilled, and lower skilled. The utility of this grouping is that it allows us to consider different approaches for improving end of life communication with advanced cancer patients for each group.

Highly skilled oncologists who already possess high quality communication skills may only need operational support to help them continue their performance at this high level. Examples of this kind of support include models for practicing that reward time spent engaging in end-of-life care planning and establishing goal of care at the end of life. Furthermore, highly skilled physicians could serve as teachers, mentors, or reviewers for their colleagues. They might also be an appropriate group for “train the trainers” type workshops when seeking skills training facilitators.

We theorize that moderately skilled oncologists are the group that would benefit the most from targeted skills training programs, where multiple high-quality examples have already been conducted (e.g., OncoTalk) (42). To our knowledge, studies of the outcomes of such communications skills training programs have not stratified or controlled for communication skills levels of oncologists participating in the programs in the ways we have suggested. We believe that those with moderate skills who already have a foundation of communication skills are the group most likely to benefit from skills training courses. This hypothesis is worthy of future study in research examining the impact of these courses.

For the less skilled group, research about teaching physicians to “read” emotional cues from patients suggests that lower-skilled physicians are less likely to gain benefit from training programs (43). As we discussed earlier in this review, there are some physician-related factors that may be difficult to overcome since they may be intrinsic to some physicians’ personality and social functioning. For this group of physicians, attempts to enhance end of life and prognosis-related communication could focus on supporting lower skilled oncologists with resources outside of their own direct communication. Examples of some of these interventions could include matching physicians with skilled nurses in oncology communication (44). Such a model, which has been tested in some research settings (45), can offer great support to oncologists who are either less-skilled or who lack a desire to alter their personal communication styles. Limitations to this model include that nursing or other staff may not have the same level of knowledge or experience that the oncologist has to feel confident about handling these conversations or offering prognostic information. Other limitations include the issue of scope of practice, about which oncology nurses have voiced a concern in previous studies (3). Another limitation is that physicians may not be open to allowing other colleagues to discuss prognosis with their patients, or may be reluctant to allow for the possibility that less optimistic messages might be conveyed to their patients. This has been true in our anecdotal experience, and represents a challenging organizational issue.

A second model to help the lower skilled group of oncologists would be to facilitate referrals to palliative care and hospice consultation teams (46), either automatically or triggered by measures such as responses to the “Would you be surprised?” question (47-49). Palliative care referrals have been shown to have positive outcomes on the quality of end of life care for advanced cancer patients, and much of this effect is likely due to its effects on improved communication, including having effective goals of care conversations (50,51). The limitations of this model include that some patients may be reluctant to accept referral to palliative care or hospice teams, or they may reject prognostic messages that are less optimistic than those presented by their primary oncologist. Some patients may have pre-existing assumptions about these services from previous experiences.

Other options to help this lower skilled group of oncologists include pre-hospice and care management programs (52), advance directives completion efforts, in addition to developing models to expose patients to trained individuals who can provide structured end-of-life discussions, such as those found in Respecting Choices (53-56), and other advanced illness coordinated care programs (57). Each of these programs, when implemented, has demonstrated some effectiveness in improving communication and decision making at or near the end of life.


Conclusions

High quality prognosis-related communication is a critical component of advance care planning for cancer patients, and may play the single most important role of any of the complex but modifiable factors that affect end of life care decisions. Better prognosis-related communication is a key factor to enhance and enrich patient’s comprehension of their prognosis and goals of therapy, and may contribute to lower uptake of overtreatment and utilization of healthcare resources at or near the end of life. Ideally, high quality communication also improves the attainment of goals-concordant end of life care. Previous efforts to improve end of life communication have generally not taken into account widely varying communication skill and comfort levels among clinicians. Based on the evidence presented here, we believe that oncologists can be usefully divided into three groups with respect to their ability to engage in meaningful, high quality communication with their cancer patients. Highly skilled individuals need organizational support to continue their performance and may serve as mentors for others; moderately skilled oncologists may benefit from targeted skills training programs to improve their existing skills (e.g., OncoTalk); lower skilled oncologists may benefit from supportive programs that would supplement their primary medical care of their patients, instead of working on enhancing their ability to engage in effective communication directly. Oncologists who struggle with prognosis-related communication and managing patients’ emotional reactions may benefit from programs of external support and partnerships that allow them to share these important interactions with other colleagues.

Our suggestion to group oncologists into these three categories is a conceptual framework and not a categorization based on objective tests or assessments. Measured outcomes of the quality of the dying experience for advanced cancer patients, when derived from provider-specific data, may aid in grouping oncologists within this framework. We hypothesize that this classification may help to guide efforts and resources needed to improve each group in differential ways.


Acknowledgments

Funding: None.


Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://dx.doi.org/10.21037/apm-21-142

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://dx.doi.org/10.21037/apm-21-142). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.


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Cite this article as: Al-Issa K, Helft PR. Narrative review of prognosis related communication in advanced cancer patients. Ann Palliat Med 2021;10(8):9239-9250. doi: 10.21037/apm-21-142

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