Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®)–Health Professional Version

The patient perspective

Surveys and interviews of patients with life-threatening illnesses, not restricted to cancer, can contribute to the understanding of what constitutes high-quality EOL care. One group of researchers proposed that patients value five main domains of care near the EOL:[2]

A 2011 prospective study of QOL in a cohort of patients with advanced cancer seen in outpatient medical oncology clinics provides additional insight into the patient’s perspective of what contributes to a good QOL.[3] The median survival of the cohort was 10 months, so the results may not reflect the situation for patients closer to death. Nonetheless, the strongest predictors of QOL were the following:

Patients who were waiting for a new treatment had worse emotional well-being. This experience suggests that QOL is related to factors such as disease progression and its complications, and to patients’ goals relative to any treatment they are receiving.[3] In addition, other researchers have reported that family caregivers often report worse scores than patients with advanced cancer in self-assessments of the patients’ QOL.[4]

Indicators of EOL care quality

A variety of indicators have been proposed to measure the quality of EOL care in patients with advanced cancer. Several salient criticisms of the proposed indicators include the following:

Nonetheless, studying indicators over time or between different geographic regions, health systems, or subspecialties can provide important insights into quality EOL care.

Trends over time in indicators of EOL care quality

Multiple reports are relevant to understanding trends in EOL care quality indicators over time for a variety of cancers. The following observations are supported by a 2004 analysis, [6] with additional supporting citations indicated when relevant:

Regional variations in indicators of EOL care quality

Regional variations in rates of utilization of health care resources near the EOL are of interest because the differences are rarely associated with improved outcomes. While initial findings focused on differences between geographic regions of the United States, subsequent studies have demonstrated potentially meaningful differences between or within health systems.[10] A brief summary of some notable variations follows.

Factors associated with variations in EOL care

Availability of medical specialists, number of hospital beds, physician, and health system characteristics are well-established factors associated with increased expenditures in the final 6 months of life. A 2011 study [13] used data from decedents enrolled in the Health and Retirement Study, Medicare, and the Dartmouth Atlas to identify patient-level factors that may contribute to regional variations. The following factors were associated with higher expenditures, even after controlling for regional characteristics:

Patient-level factors accounted for only 10% of variations. EOL practice patterns and number of hospital beds per capita were also associated with higher expenditures. Advance care planning did not influence expenditures.[13]

A potential explanation for regional variations in EOL care is regional variations in patient preferences. The evidence, however, is conflicting.

The health care provider perspective

The concept of a good death is a controversial but potentially useful construct for the oncology clinician to more clearly formulate the goals of timely, compassionate, and effective EOL care. In a 2003 BMJ article about caring for the dying patient, the authors proposed that there were sufficient evidence-based guidelines to facilitate a good death. A commentary that accompanied the article stated, “Nor can professional education convey adequately just how important it is for individuals, both at the time and afterwards, to go through the death of someone they love feeling that they are experiencing a ‘good death.’”[16] Several salient points were made in subsequent letters to the editor:

The patient perspective

A landmark study of patients, families, and health care providers [17] surveyed seriously ill patients, bereaved caregivers, physicians, and other health care providers about what matters at the EOL. Respondents scored the importance of 44 attributes identified in previous interviews and focus groups in which participants were asked to define a good death. There was broad agreement about control of pain and other symptoms, communication, and preparation for death. However, certain attributes, such as not being a burden to one’s family or society or being at peace with God, were ranked as important by patients but less so by physicians. A population-based study in the Netherlands demonstrated a correlation between the respondents’ positive attitudes toward the concept of a good death and preferences that could potentially influence EOL decision making.[18]

Patients with advanced cancer may desire opportunities to prepare for the EOL. A survey of 469 patients who participated in a cluster-randomized trial of early palliative care [19,20] reported that better preparation was associated with higher scores related to the quality of communication with clinicians, older age, living alone, fewer symptoms, and spiritual well-being. Interestingly, 31% of respondents were worried about their family’s future coping. The results highlight the importance of offering patients an opportunity to discuss preparation for the EOL early and the fact that patients who favorably rate the quality of communication with their physicians feel more prepared.

The caregiver perspective

In one study,[21] formal and informal caregivers of 396 patients who died from advanced cancer were interviewed about the decedent’s QOL in the last week of life. The QOL was correlated with a variety of factors obtained via baseline interviews of decedents at the time of enrollment into the study and survey measures of coping styles, religious coping, religiousness/spirituality, and EOL preferences. Most variances in the QOL at the EOL were unexplained. However, factors negatively correlated with QOL included the following:

Conversely, factors correlated with a higher QOL included the following:

CPR

CPR was initially developed to restore circulation in patients with predominantly cardiac insults. The outcomes after inpatient CPR in older adults have not improved significantly, in part because of the use of CPR in patients with comorbid life-threatening illnesses. Addressing the limited benefit of CPR during the transition to EOL care is made more difficult because in the United States, patients will undergo CPR unless there is an established DNR order in the medical chart to countermand the procedure. The following evidence demonstrates the limited value of CPR in patients with advanced cancer:

Admission to an ICU

In addition to CPR, patients may require mechanical ventilation or admission to an ICU. Outcomes are poor for patients with advanced cancer. One study reported that the median survival of 212 patients with advanced cancer (who were referred to a phase I trial) was 3.2 weeks.[26] Patients who required CPR had a median survival of 1 day.

The underlying diagnosis, however, may be a critical variable in predicting patient outcome. Patients with hematologic malignancies may do better than patients with solid tumors. For example, one study reported that patients with newly diagnosed hematologic malignancies had a 60.7% chance of surviving to be discharged and a 1-year survival rate of 43.3%.[27] Multivariate analysis demonstrated that remission status and early admission to the ICU were favorable risk factors.

Age

Cancer is a disease of older adults.[7] It is important to remember, however, that there are probably differences in different cohorts of older adults.

Gender

Race

Socioeconomic status

Preference for information about prognosis

Patients with life-limiting illnesses desire information about prognosis,[32] believe that such information may be provided without compromising hope,[33] and prefer that oncologists inquire about their preferences for such information.[34] Younger patient age, female sex, and a shorter life expectancy as perceived by the patient correlate with increased information needs.[8]

Preference for decision-making role

A variety of measures assess patients’ preferences for a decision-making role. The Control Preference Scale [35] asks patients to select one of five statements that best reflects their approaches; results are coded active (“I prefer to make the final selection”), collaborative (“I prefer that my doctor and I share responsibility”), or passive (“I prefer that my doctor makes the final decision”). The available information suggests that preferences vary widely. It is unclear to what extent this variation in preferences is due to differences in disease, different types of patients, or methodological differences.

Preference for palliative chemotherapy

Several studies have demonstrated that most patients prefer chemotherapy before consultation with a medical oncologist.[38] For example, a group of Dutch researchers assessed the decision-making process of 140 patients with metastatic cancer for whom palliative chemotherapy or best supportive care were reasonable options.[39] Before the consultation, 68% of patients expressed a preference for chemotherapy. Seventy-eight percent of patients eventually chose chemotherapy. The only patient characteristic associated with preference for treatment was younger age. The strongest predictor of treatment choice was the preconsultation preference.

The preference for chemotherapy may relate in part to the observations that patients are not fully informed, or they reject the information or reinterpret it to fit their perspectives. In addition, patients may value survival more and QOL less than oncology clinicians anticipate.[40]

Preference for QOL or length of life

As discussed in the Patient Preferences section, patient preferences may be narrowly or broadly construed. Preferences that are foundational to more specific preferences might be better considered as patient values.[41] In addition to the preference being measured, the methods of measuring preferences vary significantly. The interested reader may consult a 2012 review [42] for a discussion of the different instruments. Notable observations include the following:

Recall of EOL discussions

Recall of EOL discussions influences the EOL health care decisions and outcomes of patients with advanced cancer. A total of 123 of 332 patients (37%) enrolled in CwC answered affirmatively when asked, "Have you and your doctors discussed any particular wishes you have about the care you would want to receive if you were dying?”[4] Recall of EOL discussions was associated with lower rates of mechanical ventilation, resuscitation, or ICU admission and earlier referral to hospice.

A subsequent analysis reported on the treatment preferences of 325 patients who died while enrolled in CwC.[26] Seventy-two percent of patients with advanced cancer preferred treatment focused on comfort, answering affirmatively to the question, “If you could choose, would you prefer a plan of care that focused on relieving pain and discomfort, even if this meant not living as long?”; 28% preferred life-extending treatment. Sixty-eight percent received EOL care consistent with baseline preferences. The likelihood of receiving care consistent with preferences was increased if the patient reported an EOL discussion with a physician (OR, 2.26; P < .0001) or was aware of being terminally ill (OR, 3.94; P = .0005).

Decision to receive cancer-directed therapy

Patients with advanced cancer frequently receive multiple regimens of chemotherapy over the course of their treatment. Whether the decision involves first-line or second-line treatment for advanced disease may influence the decision-making process. One group of investigators conducted 117 semistructured interviews of 102 women with advanced breast cancer who were receiving first-line (n = 70) or second-line (n = 47) palliative chemotherapy.[36] Women in the second-line cohort were more likely than women in the first-line cohort to explain their decision to undergo chemotherapy because of the hope that it offered (43% vs. 19%; P = .006) and to report taking an active role in the decision process. Another research group demonstrated that physicians exerted greater control over decisions when evidence for or against a treatment was less certain or if the cancer was advanced.[53] Thus, the patient’s rationale for treatment and the relevance of the oncologist’s perspective change with the nature of the decision.

Decision to limit treatment

Most deaths resulting from advanced cancer are preceded by decisions to limit treatment. Given the prevalence, importance, and challenges of these decisions, however, there is relatively little information about how patient preferences are considered during decision making.

Using researchers embedded in health care teams, one group of investigators characterized the deliberations about limiting potentially life-prolonging treatments for 76 hospitalized patients with incurable cancer.[54] Two-thirds of the patients preferred comfort care, and one-third desired life-prolonging therapy. Patient preferences for comfort were more often in line with oncologists' preferences than were patient preferences for life-prolongation (91.4% vs. 46.7%; P = .001). Patients were involved in decisions to limit treatment only half of the time. Age, performance status, or decisional capacity did not influence the rate of patient involvement; agreement with oncologist preferences was the main predictor. Thus, decisions to limit treatment may reflect a shared perception rather than a shared decision-making process.

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.

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.

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.[7] There were three notable findings:

The poor concordance between patients and oncology clinicians has been observed in a diverse range of patients, including patients with acute myeloid leukemia [8] or those considering allogeneic stem cell transplantation.[9] For more information, see the Patients' Interpretations of Prognostic Information section.

Discordance about life expectancy between patients with advanced cancer and their oncologists may be explained by poor communication or factors independent of oncologists’ prognostic estimates. One group of researchers attempted to clarify the source of prognostic discordance by surveying 236 patients with advanced cancer who participated in a randomized clinical trial of a communication intervention.[10] The patients and their 38 oncologists were asked to provide an estimate of the chance that the patients would be alive in 2 years. The responses were fixed choices of 100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%. Discordance was defined as being more than one response category divergent.

As expected, most patient-oncologist dyads were discordant (161 of 236 ratings [68%]; 95% confidence interval [CI], 62%–75%). Almost all discordant patients expressed a more-optimistic prognosis than their oncologists (155 of 161 patients [96%]).[10] The investigators also asked patients to provide the estimate they believed their oncologists would provide. The response categories and definition of discordance were identical. Of the 161 patients who were discordant with their oncologists, 144 (89%) were unaware of the discrepancy. Non-White patients were more likely to provide discordant prognostic expectations. Patient income, education level, sex, or level of recalled prognostic communication did not correlate with discordance. These results support the belief that prognostic discordance reflects inadequate communication of prognostic estimates. However, patients’ expressions of life expectancy may also reflect the need for optimism or the belief in unique personal characteristics.[6]

Goals of treatment

Patients and oncologists frequently do not share an understanding of the goals of cancer treatment. One group of researchers 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.[11] 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.[3]

A study of 206 cancer patients and their 11 oncologists sought to identify how well the oncologists understood their patients’ goals of care, defined as preference for quality of life versus preference for length of life.[12] The investigators interviewed the oncologists and patients at baseline and every 3 months for 15 months (or until the patient died or enrolled in hospice). The participants were shown a 100-point visual analogue scale with “quality of life is all that matters” at one end of the scale (scored as 0) and “length of life is all that matters” at the other end of the scale (scored as 100). Patients and their oncologists were asked to rate their answers on the scale in response to one of the two questions, “Regarding your care, what is most important to you right now?” (patients) and “Regarding the care of this patient, what do you think is most important to the patient right now?” (oncologists). Participants who scored between 0 and 30 were classified as having a high goal for comfort, while those who scored between 70 and 100 were deemed to have a high goal for survival. The patient-oncologist dyad was considered to be closely aligned if they both scored within the same 30-point windows for a high goal of either comfort (scored 0–30) or survival (scored 70–100). However, at the last interview prior to the patient's death, 76.7% of the patient-oncologist dyads were not in close alignment.[12]

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.[13] 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.

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.[16] 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).[17] In a subsequent analysis, researchers studied 520 patients with metastatic colorectal cancer.[18] 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.[19] 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.

Observational studies of patient-oncologist communication

Investigators reported a study of audiotaped consultations between one of nine oncologists and each of 118 patients with advanced cancer.[20] 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:

Additional deficits in oncologist communication behaviors include the following:

Oncologist self-reported practices in prognostic communication

There is evidence that physicians’ attitudes toward prognostic communication influence patients’ prognostic awareness. In an analysis of physician surveys from the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium,[23] investigators reported that patients with metastatic lung or colorectal cancer were more likely to have an accurate prognostic awareness if their most important doctor reported discussing prognosis earlier rather than waiting for deterioration (18.5% vs. 7.6%; odds ratio, 3.23; 95% confidence interval, 1.39–7.52; P = .006). Thus, understanding the factors that influence oncologists’ attitudes is relevant to improving prognostic communication. Two additional surveys of American oncologists and communication about prognosis have been published. One study analyzed the survey responses of 729 oncologists (64% response rate).[24] 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%) of the oncologists always provided an estimate of time until death. Three-quarters of them 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.[25] 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.

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.[32] 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.[33]

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.[34] Disease-related factors included:

In addition, public perception of the disease and whether there was a clear best treatment 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:

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.[35] Other investigators reported on a survey of Japanese oncologists to assess the level of burden experienced by oncologists when recommending discontinuation of anticancer treatment.[36] Forty-seven percent reported high levels of burden. Multivariate analysis of determinants of the sense of burden identified the following covariates:

Oncologists’ attitudes toward palliative care

The European Society of Medical Oncology surveyed its members about their attitudes toward and involvement in palliative care for patients with advanced cancer.[4] Eighty-eight percent of respondents endorsed the belief that medical oncologists should coordinate end-of-life (EOL) care, but 42% felt they were inadequately trained for the task. Relatively few respondents collaborated with a palliative care specialist (35%) or inpatient hospice services (26%).

Public attitudes toward palliative care

Public attitudes toward palliative care depend on the description of the service. A 2011 public opinion poll of more than 100 consumers found a lack of knowledge about palliative care among more than 75% of interviewees.[5] After the opinion poll was taken, the definition of palliative care was revised for the public. In the new definition, palliative care is described as “specialized medical care for people with serious illnesses.” The focus of care is defined as relief from pain and other symptoms, regardless of diagnosis. Included in the definition are patient and family quality of life (QOL), the interdisciplinary team of specialists, and the statement that palliative care is appropriate at any age, at any stage of illness, and in conjunction with curative treatment.[5]

The language of ACP

A brief glossary of the language of ACP may minimize confusion.

Documenting ACP decisions

Additional documents to communicate the patient’s preferences include the following:

Patient and physician ambivalence about ACP

One of the major impediments to effective ACP is patient and physician ambivalence. Patients with advanced cancer may be ambivalent about engaging in ACP with their oncologists because they perceive that oncologists are reluctant to engage in this discussion.[11,13] For example, one group of researchers reported that 87% of women with metastatic breast cancer had discussed EOL decisions with family or friends; 75% had gathered information about advance directives; and 66% had a written advance directive.[14] However, only 19% of those women had discussed EOL decisions with providers; only 24% had shared the written advance directives with the providers; and only 14 % of providers were aware of the advance directives. A study of hospitalized elderly patients similarly found that many had thought about EOL preferences (76.3%) or had an advance care plan (47.9%), but relatively few (30.3%) had discussed them with their physicians.[15]

These results suggest that patients engage in ACP but are reluctant to share their thoughts with their oncologists. Nevertheless, the oncologist is in the best position to know when to bring up the subject of EOL care, so he or she can initiate and thoughtfully guide the ACP discussion.[16]

Early concerns about limits of ACP

Initial evidence about ACP was not favorable. For example, several studies found that:

Potential benefits of ACP

Since the 1990s, randomized trials of ACP have demonstrated some benefit. For example, a randomized study compared usual care with a structured approach that included a motivational conversation with a social worker, and a booklet that described ACP and sought information about the patient’s desired health states and values.[22] The primary outcomes were comparisons of how closely providers and patients agreed about the following:

The intervention was associated with increased frequency of ACP discussions between physician and patient (64% vs. 38%; P < .001), and the intervention group had higher levels of agreement for all three outcomes.[22] The effect of ACP on health care outcomes was not studied.

A 2010 study monitored 309 patients older than 80 years and their caregivers for 6 months or until a patient died.[23] Researchers found that patients who engaged in ACP were more likely to have preferences that are known to others, and to receive care consistent with those preferences. In addition, compared with family members of patients in the control group, family members of patients in the intervention (with ACP) group who died had significantly less stress (intervention 5, control 15; P < .001), anxiety (intervention 0, control 3; P = .02), and depression (intervention 0, control 5; P = .002). Also, patient and family satisfaction were higher in the intervention group.[23]

Studies funded by the Agency for Healthcare Research and Quality show that satisfaction in patients aged 65 years and older increased when patients engaged in ACP with their doctors. Specifically, patients who discussed their preferences for EOL care:[24]

Surrogates experienced similar benefits.[24]

A 2011 report also suggests that ACP contributes significantly to higher-value EOL care. Researchers demonstrated that the association between evidence of ACP and reduced EOL Medicare expenditures varied according to the level of spending on aggressive treatments near the EOL.[25] Treatment-limiting advance directives were associated with lower levels of Medicare spending, lower likelihood of in-hospital death, and increased use of hospice in high-spending regions but not in low- or medium-spending regions. At a minimum, the study suggests that ACP may be one explanation for lower-cost regions.

A more nuanced approach to ACP

Advocates maintain that ACP has been too narrowly construed as completion of a document that expresses a patient’s EOL preferences or identifies a surrogate decision maker if a patient can no longer make decisions. Generally speaking, most patients from Western countries express greater needs for information related to their illnesses, treatment options, prognoses, future symptoms, likely trajectories of illness, and the dying process. Younger and more educated patients tend to seek more detailed information, while older patients and those from non-Western cultures tend to prefer nondisclosure. From that perspective, the limitations of ACP can be addressed by reconceptualizing ACP.

One proposal is to imagine ACP as an ongoing discussion designed to prepare patients and their families or friends to participate more meaningfully in future medical decisions, as required.[26] A focus group study of patients and surrogate decision makers identified four salient themes in discussing future health care decisions:[27]

Before discussing ACP, it is essential that the oncologist determine the information needs of the patient so that communication and ACP can be tailored accordingly.[28]

Written information

A myriad of informational booklets are available for patients to consult; prognostic information is discussed in some of them. Researchers conducted a mixed-methods study of the views of cancer patients on written materials provided by their oncologists.[29] Patients expressed concerns that conflicting information could undermine their trust in their oncologists, and this concern influenced their willingness to consult written materials.

Another caution was raised by a randomized study that compared QOL and satisfaction between lung cancer patients scheduled for surgery who received verbal information only and those who received verbal and written information.[30] There were no differences in patient satisfaction with information; however, patients who received verbal and written information were less satisfied with the hospital stay. Thus, the presentation of written information may have unintended consequences, and oncologists may consider distributing only information that reflects their actual practices.

Audiotaped consultations

The impact of simply recording consultations on audiotape is significant, especially given the ease of doing so. In one randomized trial of initial consultations for all stages of cancer, 105 patients received audiotapes and 96 did not.[31] Patients who received the audiotapes were more satisfied and had better recall of information than did those who did not receive the tapes. In addition, younger patients were more satisfied, and older patients experienced enhanced recall. Another study reported similar results.[32]

Video-recorded information

The use of videos to facilitate discussions between providers, patients, and families and to assist with informed decision making has been effective in several randomized controlled trials.[33,34] In these studies, patients and caregivers (where appropriate) found the videos acceptable and were comfortable with their content. In the first study, 50 patients with malignant glioma were randomly assigned to hear a verbal narrative or to hear the same verbal narrative and be shown a video that described three types of care:[33]

Participants in the sample had a mean age of 54 years; 44% were female, 50% did not want CPR at baseline, and 76% had advance directives. When asked postintervention about their preferences for type of care, 26% of participants in the verbal control group preferred life-prolonging care, compared with none in the video intervention group. More patients in the video intervention group preferred comfort care than did patients in the verbal control group (91% vs. 22%, respectively).[33]

In the second study, 150 patients with advanced cancer from four cancer centers were randomly assigned to listen to a verbal description of CPR or to listen to the same verbal description and then be shown a 3-minute video of simulated CPR being done on a patient on a ventilator.[34] The primary outcome was participants’ preference for or against CPR measured immediately after exposure to either modality. As in the first study, more patients receiving the video intervention with the narrative decided against CPR than did those receiving only the narrative (79% vs. 51%, respectively). Knowledge scores were also significantly higher in the video arm (P < .001). Results at the 6- to 8-week follow-up demonstrated fairly stable decisions.

In a third single-center, randomized control trial, investigators assigned 150 hospitalized patients with advanced cancer and 44 of their caregivers to one of two groups. One group watched a 6-minute video about hospice, while the other was read an identical verbal description of hospice. The primary outcome, patient preference for hospice, did not significantly change and did not differ between the two groups postintervention (though both groups expressed high levels of preference for hospice at baseline). However, patients who watched the video had improved knowledge of hospice and were less likely to agree with the statement, “I think that hospice care is only about death.” The intervention’s most interesting impact, however, was on hospice use and length of stay. Among patients who died during the study, those who had been in the video group were more likely to have used hospice care (85.2% vs. 63.6%; P = .01) and had a longer hospice length of stay (median, 12 days vs. 3 days; P = .01). Caregivers in the video group were more likely to prefer hospice and had improved hospice knowledge, though findings were limited by the small number of caregivers in the study.[35]

These studies suggest that videos can be useful for improving patient knowledge related to ACP and may even affect patients’ ACP and end-of-life decision making. The results are encouraging regarding the value of videos to supplement oncologist-patient communication and education.

Question prompt lists

Patients may have difficulty posing questions about sensitive and difficult issues such as prognosis or EOL care. Prompt lists can help guide patients through such questions. Researchers developed and tested a question prompt list for advanced cancer patients to use during consultation with a palliative care physician.[36] Patients randomly assigned to the intervention arm more frequently asked more questions related to prognosis and EOL issues than did patients in the control group (30% vs. 10%; P = .001). There were no negative effects on patient satisfaction or anxiety. A slightly different strategy—addressing the prompt list to informal caregivers of patients with advanced cancer—was evaluated in another study and appeared promising.[37]

Cancer consultation preparation package (CCPP)

A CCPP developed by one group of researchers consists of four components:[38]

A randomized trial of the CCPP versus a control booklet in 164 initial consultations for patients with a variety of cancers at different stages demonstrated that patients receiving the CCPP asked significantly more questions (11 questions vs. 7 questions; P = .005) without increasing their anxiety. However, patients assigned to the CCPP did not participate in decision making more often or more actively than did patients in the control group.[38]

Pamphlet and psychologist-facilitated discussion

In a randomized trial, an ACP pamphlet supplemented by a discussion with a psychologist was compared with usual care.[39] Patients in both cohorts had equivalent rates of DNR orders (68% vs. 76%), but DNR orders for the intervention group were placed at a median of 27 days, compared with 12.5 days for the control group (P = .03). Intervention patients were less likely to die in the hospital (19% vs. 50%), and there was no increased sense of anxiety. Interpretation of the study results is hampered by a high rate of loss to follow-up, and the intention-to-treat analysis was not significant.

The decision to undergo chemotherapy

In a 2011 study of patients with metastatic colorectal cancer who were deciding whether to initiate first-line systemic chemotherapy, 207 patients were randomly assigned to receive either a standard oncology consultation or a standard consultation supplemented by a take-home booklet and audio recording of the consultation.[40] Patients assigned to the decision aid demonstrated increased understanding of the prognosis, treatment options, and goals of treatment. There were no differences in decisional conflict, levels of anxiety, patient achievement of preferred level of involvement in decision making, or treatment selected.

The decision to engage in ACP

In a pilot semirandomized trial, patients with advanced cancer who met with a trained care planning mediator were more likely to discuss future preferences with families and friends (but not with their oncologists).[41] Slightly more than half of patients with advanced cancer were willing to meet with an independent trained counselor about ACP. Patients assigned to meet with the mediator tended to be less satisfied with communication with health care professionals and less satisfied with future care. Thus, while ACP with a trained mediator is feasible, the costs of additional personnel may be prohibitive and create unmet expectations in patients.

In a Korean randomized controlled trial, the impact of decision aids on preferences for active treatment, life-prolonging treatment, or hospice care was examined, and knowledge about ACP and cardiopulmonary resuscitation (CPR) was also assessed: 204 patients with advanced cancer were assigned to either a group that received a video and workbook training on ACP (intervention group) or another group that received a video and workbook training on managing cancer pain (control group).[42] Seven weeks post intervention, patients in the intervention group who assumed a prognosis of expected death within several weeks or several months expressed a greater preference for hospice care than patients in the control group. Patients in the intervention group also had greater knowledge about CPR postintervention. There were no statistically significant differences between the two groups with respect to patients documenting advance care preferences or discussing EOL care with their family, friends, or physicians.

Decisions related to resuscitation status

Several approaches to facilitate discussion about a patient’s resuscitation preferences and status have been studied. The approaches include the following:

In several studies, DNR orders were more common in the intervention group or occurred earlier. The secondary outcomes included earlier and higher rates of discussions with patients and family members regarding resuscitation, lower decisional conflict and uncertainty, and more value clarification. In at least two studies, there was no increase in anxiety and/or depressive symptoms. These decision aids are limited to use among adult patients.

Physician attitudes toward decision aids

Researchers conducted a cross-sectional survey of Canadian medical, radiation, and surgical oncologists to determine their levels of awareness and utilization of patient decision aids.[45] Slightly fewer than half (46%) were aware of decision aids relevant to their practices, and only 24% used aids in their practices. Most respondents recognized the important clinical outcomes associated with decision aids, i.e., increased knowledge, reduced anxiety, and increased patient satisfaction. Lack of awareness was the most frequently cited barrier to use (69%), followed by lack of resources (24%) and lack of time to learn about decision aids (24%). Only 3% of respondents cited lack of time as a barrier to the use of decision aids. Strategies to introduce decision aids into clinical practice are clearly needed and could start with educating oncologists about available decision aids.

ENABLE II: A randomized trial of an advance practice nurse–led psychoeducational intervention

This group of investigators reported the results of Project ENABLE (Educate, Nurture, Advise Before Life Ends).[50] Three hundred twenty-two patients with advanced cancer were randomly assigned to receive either usual care or a multicomponent psychoeducational intervention conducted by advance practice nurses concurrent with usual care. The primary outcomes were QOL, as measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care; symptom intensity, as measured by the Edmonton Symptom Assessment Scale; and mood, as measured by the Center for Epidemiological Studies Depression Scale.

The intervention was based on the chronic care model; the goal was to encourage patient involvement in care planning, self-management, and empowerment. The intervention consisted of four weekly educational sessions and a monthly follow-up. The four modules consisted of the following:

The mean scores for the participants in the intervention group were 4.6 higher for QOL (P = .02); 27.8 lower for symptom intensity (P = .06); and 1.8 lower for depressed mood (P = .02). Patients who died during the study had less-marked treatment effects. There was no difference in OS or use of chemotherapy or aggressive medical care near the EOL. Furthermore, there were no differences between groups in rates of referral to palliative care or hospice.[50]

Randomized trial of concurrent palliative care and standard oncology care for patients with metastatic lung cancer

The second study randomly assigned 151 patients with newly diagnosed metastatic NSCLC to receive either standard oncology care or standard oncology care with the early integration of palliative care. Patients assigned to palliative care met with a member of the palliative care team within 3 weeks of diagnosis. General guidelines called for palliative care clinicians to pay specific attention to the following:

The primary and secondary analyses of the study have been reported in an original publication and then in several secondary publications,[51-53] summarized below.

Cluster-randomized trial of early palliative care for patients with advanced cancer

This single-blinded study reported the outcomes of patients who were assigned to receive palliative care and conventional cancer care or conventional cancer care alone.[57] The palliative care intervention included an initial visit followed by monthly palliative care clinic visits, with telephone follow-up and direct access to the inpatient palliative care unit as needed. The primary outcome was the change score for the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being (FACIT-Sp) at 3 months. Secondary outcomes were the FACIT-Sp at 4 months and other validated measures of QOL, symptom burden, satisfaction with care, and quality of medical interactions at 3 and 4 months.

There were no statistically significant differences in the change FACIT-Sp scores at 3 months, but differences did emerge at 4 months; in addition, there were significant differences in the secondary outcomes at 3 and 4 months. These results confirm the benefit of concurrent palliative care and suggest that the benefits of palliative care will increase over time. The coordination of care between the Princess Margaret Cancer Centre and Community Care Access Centres may make the findings difficult to replicate.[57]

ENABLE III: Early versus delayed initiation of concurrent palliative oncology care

This study compared the outcomes of 207 patients randomly assigned to begin receiving palliative care interventions within 30 to 60 days of diagnosis versus 3 months from diagnosis of advanced cancer.[49] The weekly telephone coaching sessions described in the summary of ENABLE II included a three-session life review component and was designed to specifically intervene with caregivers. The outcomes of interest were QOL, symptom impact, mood, resource use, and improved 1-year survival. Early palliative oncology care was associated with improved survival (63% vs. 48%, P = .038). There were, however, no statistically significant differences in patient-reported outcomes or resource use. Furthermore, the OS log-rank test did not reveal a significant difference, suggesting the survival curves converge after the 1-year point.

A few limitations of the study potentially complicate interpretation. First, the study did not meet its accrual goal of 360 patients, in part because of high rates of ineligibility after screening and patient refusal. Second, the intention-to-treat analysis may have missed differences due to variations in the “amount” of the intervention completed. Third, the multiple outcomes may have limited the statistical power to detect meaningful differences, especially given the smaller-than-desired sample size. Thus, a more-accurate interpretation of the results may be that the optimal time of palliative care interventions remains undetermined.

In contrast to the results for patients, the ENABLE III intervention improved outcomes for caregivers.[58] A total of 122 caregivers were randomly assigned to receive, either early or at a later time, three weekly telephone coaching sessions, monthly follow-up, and a bereavement call. For all caregivers, the early intervention was associated with lower depression scores at 3 months. Caregivers of decedents who received palliative care early had lower depression and burden in the terminal phase. These results are notable in establishing a benefit to caregivers.

Challenges to the early integration of palliative care

Several of the more relevant challenges to the integration of palliative care into standard oncology care are listed below, followed by a summary of the available data.