Potential Barriers to Planning the Transition to End-of-Life Care
The preferences of patients with advanced cancer should, in large part, determine the care they receive. However, the evidence reviewed in the section on Factors That Influence End-of-Life Care Decisions and Outcomes suggests that patients lack sufficient opportunity to develop informed preferences and, as a consequence, may seek care that is potentially inconsistent with their personal values and goals.
This section identifies potential barriers that may prevent a patient with advanced cancer and his or her oncologist from discussing prognosis, goals, options, and preferences. The information will allow the oncology clinician to develop the strategies needed to approach these challenging discussions more deliberately.
Potential barriers include the following:
- Patients’ interpretations of prognostic information.
- Lack of agreement between patients and oncologists.
- Oncologists’ communication behaviors.
- Oncologists’ misconceptions about the harm of end-of-life (EOL) discussions.
- Oncologists’ attitudes and preferences.
- Reimbursement for chemotherapy and practice economics.
- Uncertainty about options other than disease-directed treatments.
Patients’ Interpretations of Prognostic Information
A consistent finding over the last two decades is that patients with advanced cancer are typically overly optimistic about their life expectancies or the potential for cure with cancer-directed therapies.
- One group of investigators studied 1,193 patients in the Cancer Care Outcomes Research and Surveillance Consortium and found that a significant majority of patients with advanced lung or colorectal cancer did not understand that treatment was not curative. Sixty-nine percent of patients did not report understanding that chemotherapy was not at all likely to cure their cancer. Patients who were nonwhite, were diagnosed with colorectal cancer, or reported satisfaction with physician communication were more likely to report inaccurate understanding of treatment intent.
- Similarly, 64% of patients with incurable lung cancer who received radiation did not understand that radiation was not at all likely to cure them. Older patients and nonwhites were more likely to misunderstand; surrogates of patients were more likely to understand.
There are many potential barriers to a more accurate understanding of prognosis, including poor communication by oncology clinicians. However, patients also interpret information for reasons unrelated to the quality of communication. The perspectives of patients with advanced cancer who enroll in phase I clinical trials or surrogate decision makers for patients in intensive care units (ICUs) provide some insights into why advanced cancer patients might misinterpret prognostic information.
- Patients’ optimistic expectations of benefit from phase I trials were associated with a better quality of life, stronger religious faith, optimism, poorer numeracy (ability to understand a statistical estimate of treatment outcome), and monetary risk seeking. They were unrelated to age, gender, educational level, or functional status.
- In a study of 163 patients enrolled in a phase I trial, most were aware of hospice (81%) or palliative care (84%), but few considered either choice seriously (hospice, 10%; palliative care, 7%). Seventy-five percent of patients reported the most important influence was awareness that their cancer was growing; 63% percent stated the knowledge that the phase I drug killed cancer cells was the most important factor in their decision to enroll.
- In a study of 80 surrogate decision makers recruited from the families of ICU patients, most were fairly accurate in their interpretations of quantitative information and less ambiguous qualitative estimates provided by ICU physicians. However, several potentially relevant sources of prognostic misunderstanding included the need to express optimism, the belief that the patients’ fortitude would lead to better-than-predicted outcomes, and a disbelief that physicians can predict accurately.
Lack of Agreement Between Patients and Oncologists
Multiple conversations between patients with advanced cancer and their oncologists should lead to an understanding about prognoses, goals, preferences, options, and the decision-making process. However, evidence suggests that patients and oncologists frequently do not reach the same conclusions about these issues. How this lack of agreement affects the transition to EOL care is not certain. However, it is unlikely that disagreement with or misperceptions about goals of treatment, for example, can contribute positively to the timely planning for the transition to EOL care.
Understanding of prognosis
One group of investigators analyzed the prognostic estimates of 917 adults with metastatic colorectal or lung cancer who were enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) and their physicians. There were three notable findings:
- Patients were more optimistic than physicians.
- Physician estimates were more calibrated with the observed survival than were the estimates of patients.
- Patients who were more optimistic than their oncologists were more likely to prefer life-extending treatments.
The poor concordance between patients and oncology clinicians has been observed in a diverse range of patients, including patients with acute myeloid leukemia  or those who are considering allogeneic stem cell transplantation. (Refer to the Patients’ Interpretations of Prognostic Information section of this summary for additional information about patient prognostic understanding.)
Goals of treatment
Patients and oncologists frequently do not share an understanding of the goals of cancer treatment. One group of investigators reported that in 25% of the advanced-cancer patient–physician dyads surveyed, the patient thought the goal of care was to cure disease when it was not. Younger patients, patients who were native English speakers, and patients who received written information were more likely to agree with their oncologists about the intent of chemotherapy. Another group of researchers reported that 64% of patients with advanced-stage lung cancer did not understand that the radiation therapy prescribed was not curative.
Topics recalled from consultation
Researchers reported that patients and oncologists frequently recalled different components of communication and decision making from discussions of phase I trials. For example, 13 of 17 participating oncologists mentioned prognosis in fewer than 50% of consultations. Although oncologists frequently reported discussing prognosis, only 12% of patients and 20% of independent researchers who coded the recorded consultations agreed. There was better agreement about unknown adverse events and the voluntary nature of trial enrollment.
Patient preference for decision-making role
Oncology clinicians frequently do not correctly identify patient preferences for decision-making roles. Results from a few Illustrative studies are summarized below.
- In a study of older patients with metastatic colorectal cancer, 52% preferred a passive role. However, oncologists correctly identified patient preferences only 41% of the time.
- Palliative care physicians correctly identified the decision-making preference of patients with advanced cancer in a palliative care clinic only 38% of the time.
Assessment of patient performance status
Physicians evaluate patient performance status (PS) in determining prognosis and in making treatment decisions. Investigators compared the Eastern Cooperative Oncology Group PS reported by physicians and 1,636 patients who had advanced lung or colorectal cancers. They demonstrated 56.6% disagreement between patients and physicians about PS; more optimism by physicians about PS (mean, 0.91 vs. 1.30); and association of disagreement with an increased risk of death.
Patient preference for cardiopulmonary resuscitation
The initial phase of SUPPORT demonstrated that only 47% of physicians knew when their patients wanted to avoid cardiopulmonary resuscitation (CPR). In a subsequent analysis, researchers studied 520 patients with metastatic colorectal cancer. Information about CPR preferences for 339 of the patients was available: 223 (63%) wanted CPR; however, physicians incorrectly identified patient preference in 30% of cases. The preference for CPR was stronger among patients who had a more optimistic sense of the likelihood of survival at 2 months. Other investigators found similar results in a group of patients with lung disease. Physicians frequently misunderstood patients’ preferences (25%–40% of dyads). The lack of agreement was greater if patients wished to avoid resuscitation. Neither study reported the effect of the disagreement on patient outcomes.
Oncologist Communication Behaviors
This section summarizes the evidence that identifies deficits in the communication behaviors of oncologists treating patients who have advanced cancer. The evidence cited here strongly suggests that doctor-patient communication frequently does not fully support informed or shared decision making. This information will allow oncology clinicians to reflect on their communication habits and consider modifying impediments to the timely planning for the transition to EOL care.
Observational studies of patient-oncologist communication
Investigators reported a study of audiotaped consultations between one of nine oncologists and 118 patients with advanced cancer. They devised a coding system to assess how frequently essential information (e.g., aim of treatment, incurability of cancer, risks of treatment, information about life expectancy, and alternative treatment options) was disclosed and how much the doctor facilitated the patient’s participation in making decisions. A summary of results follows, with independent observations cited as appropriate.
- Most oncologists disclosed the noncurative intent of chemotherapy in advanced cancer, but few discussed alternatives to chemotherapy. In 74.6% of encounters, patients were told the cancer was incurable. However, patients were presented with information about life expectancy in only 57.6% of encounters, and were given information about treatment alternatives in only 44.6% of encounters.
- Oncologists rarely checked patient understanding. Oncologists asked about patient understanding of the disclosed information and decision-making process in only 10% of encounters.
- Essential elements of shared decision making were frequently missing. The participating oncologists frequently acknowledged the uncertainty of treatment benefit (72.9%), discussed trade-offs in receiving treatment (60.2%), and elicited patient perspectives about treatment (69.5%). However, only 29.7% of patients were offered a choice, and in only 10.2% of the encounters did the oncologist assess the patient’s comprehension.
Additional deficits in oncologist communication behaviors include the following:
- Oncologists frequently use ambiguous or falsely reassuring language, such as inappropriately optimistic statements. One group of researchers analyzed audiotapes of encounters between oncologists and patients in which the oncologists had provided a likelihood of cure using current treatments. The audiotapes were selected according to the degree of prognostic agreement and then coded to determine factors that predict agreement. Oncologists were more likely to make optimistic statements, but pessimistic statements were more likely to increase the degree of prognostic agreement. The authors concluded that the best communication strategy may include acknowledging that the tendency to be optimistic may interfere with patient understanding of prognosis, and striving to provide honest information as warranted by the prognosis.
- Oncologists frequently do not discuss the anticipated survival benefit of chemotherapy in advanced cancer. One group of investigators demonstrated that in 26 of 37 analyzed consultations, the oncologist did not provide the patient with information about the potential survival gain of palliative (i.e., noncurative) chemotherapy.
Oncologist self-reported practices in prognostic communication
Two relevant national surveys of American oncologists and communication about prognosis have been published. One study analyzed the survey responses of 729 oncologists (64% response rate). Almost all (98%) indicated they would disclose a terminal prognosis, but 48% indicated they would do so only when the patient’s preference for disclosure of prognosis was known. Fewer than half (43%) always provided an estimate of time until death. Three-quarters indicated they had not received formal training in communication of terminal prognoses; 96% thought training should be mandatory.
Another study reported that 65% of physicians surveyed discussed prognosis immediately with asymptomatic patients who had advanced cancer and anticipated life expectancies of 4 to 6 months. However, fewer physicians would immediately discuss resuscitation preference (44%), hospice (26%), or preferred site of death (21%), with most physicians waiting for patient symptoms to appear or until there were no more treatments to offer. Younger physicians, surgeons, and oncologists were more likely than noncancer specialists to discuss prognosis.
Oncologists' Misconceptions About the Harm of EOL Discussions
Oncologists cite several reasons for their reluctance to engage in EOL discussions. However, several studies have provided evidence that many of the concerns—e.g., causing psychological harm or destroying hope—are not valid. On the contrary, EOL conversations are not psychologically harmful and may improve psychological adjustment, while explicit information about prognosis does not necessarily compromise a patient’s sense of hope.
- A multisite, prospective, longitudinal cohort study reported that discussions about EOL care were not psychologically harmful. Patients with advanced cancer who answered affirmatively to the question, "Have you and your doctors discussed any particular wishes you have about the care you would want to receive if you were dying?" did not have a higher rate of generalized anxiety disorder or major depressive disorder than did patients who did not recall such discussions (3.3% vs. 1.4% and 8.3% vs. 5.8%, respectively). In addition, recall of such discussions was not related to levels of worry.
- Another study found that patient anxiety caused by disclosure of information and decision making was transient or may have improved psychological adjustment. The amount of information disclosed by oncologists did not predict levels of patient anxiety. However, greater encouragement of the patient to participate in decision making was independently associated with higher anxiety levels immediately after the consultation and 2 weeks later.
In another study, men with advanced cancer who estimated a lower likelihood of survival at 6 months had increased levels of anxiety and depression. However, men who reported having a full discussion about prognosis with their oncologist had less depression and similar levels of anxiety. Thus, discussions about prognosis moderated the relationships with anxiety and depression and may have facilitated long-term psychological adjustment.
- A study found that explicit disclosure about prognosis and reassurance about nonabandonment were helpful to patients. Researchers studied how patients with breast cancer and healthy women reacted to two levels of prognostic disclosure and reassurance portrayed in four different video vignettes. Explicitness and reassurance decreased uncertainty and anxiety. The authors cautioned that the nature of the findings is experimental.
Oncologist Attitudes and Preferences
This section summarizes the information strongly suggesting that oncologists’ attitudes and preferences influence their communication and decision-making behaviors in a manner that might change patients’ EOL decisions.
One study found that hospital staff attributed variations in aggressiveness of care near the EOL to physician characteristics, including physician beliefs, attitudes, and socialization within the practice of medicine. As a result, communication about advance directives, prognosis, limiting treatment near the EOL, and acknowledgment that the patient was dying varied significantly among physicians. A 2011 study demonstrated that physicians may recommend different treatments for patients than they would choose for themselves. This section encourages oncology clinicians to reflect on these biases and how to minimize their effects on communication behaviors.
Oncologist preferences for noncurative treatments
Oncology clinicians influence patients’ understanding of treatment preferences. Dutch researchers surveyed medical oncologists about their preferences for palliative (noncurative) chemotherapy or observation using case vignettes. The gender, age, and employment status of the oncologist and type of hospital did not influence preferences for chemotherapy. However, older patients or patients without a stated preference were less likely to receive chemotherapy. There was a greater preference for chemotherapy if the anticipated survival gain was at least 3 months, if the treatment was mildly toxic, or if symptoms of disease progression were identified. These findings are consistent with a study of U.S. oncologists that demonstrated a preference for life-sustaining treatment rather than comfort care.
Oncologists and shared decision making
In surveys, oncologists are broadly supportive of the concept of shared decision making. However, empirical research demonstrates that oncologists’ communication behaviors frequently do not support shared decision making.
One group of investigators interviewed Australian cancer specialists about their inclusion of patients in decision making and identified several factors that influence patient involvement. Disease-related factors included stage of disease, availability of treatment options, and risks to the patient. In addition, the public perception of the disease and whether there was a clear best option were relevant. Cancer specialists were more likely to include patients in decision making when the disease stage was advanced and treatment options were less certain. Patient characteristics that decreased doctors’ efforts to involve the patient included:
- Increased anxiety.
- Older age.
- Female gender.
- A Mediterranean or Central or Eastern European background.
- A busy professional life.
The doctors were aware of patient preferences for involvement but felt most patients deferred to their expertise. Furthermore, few physicians had a validated approach to determine patient preferences.
Oncologist attitudes toward EOL care
Attitudes toward EOL care may also influence the communication and decision-making behaviors of oncologists. In a qualitative study of 18 academic oncologists who were asked to reflect on recent patient deaths, one group of researchers reported that oncologists who viewed EOL care as an important part of their job reported increased job satisfaction. Other investigators reported on a survey of Japanese oncologists to assess the level of burden experienced by oncologists when recommending discontinuation of anticancer treatment. Forty-seven percent reported high levels of burden. Multivariate analysis of determinants of the sense of burden identified the following covariates:
- Feeling that the patient was being deprived of hope.
- Concerns that the family would blame the doctor.
- Concerns that the patient would lose control.
- Concerns that there was inadequate time to discuss the recommendation.
Reimbursement for Chemotherapy and Practice Economics
Before 2003, reimbursement for chemotherapy was at a price that greatly exceeded acquisition costs for medical oncologists. Although the profit margin for chemotherapy has decreased, chemotherapy remains a significant source of oncologists’ income. Researchers demonstrated that physicians’ decisions to prescribe chemotherapy for patients with advanced cancer was not affected by reimbursement rates, but more costly regimens were more likely with higher rates of reimbursement. Additional results are summarized below:
- Urologists who acquired ownership in intensity-modulated radiation therapy (IMRT) increased their utilization of IMRT (from 13.1% to 32.3%), compared with urologists who did not own IMRT services (from 14.3% to 15.6%). The rate at National Comprehensive Cancer Network cancer centers was unchanged at 8%.
- Oncologists who practice in a fee-for-service setting or those who are paid a salary with productivity incentives are more likely to report that their income increases with increases in ordering chemotherapy or growth factors.
Uncertainty About Options Other Than Disease-Directed Treatments
A final barrier to planning the transition to EOL care may be confusing language when patients begin to ponder forgoing resuscitation and other life-prolonging interventions. On the basis of their experiences or understanding, oncology clinicians, patients, and families assign different—and often valid—meanings to terms such as supportive or palliative. A 2013 systematic review of the literature found widespread inconsistencies in the definitions of supportive care, palliative care, and hospice.
The section on Supportive Care, Palliative Care, and Hospice in Advanced Cancer defines terms more completely and discusses clearly communicating the purpose of each level of care relevant to the patient with advanced cancer.
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