The American Cancer Society estimates that 609,360 Americans will die of cancer in 2022.[
Oncologists and patients often avoid or delay planning for the EOL until the final weeks or days of life because of many potential factors. These factors can be at the individual, family, or societal levels. Emerging evidence suggests, however, that many of the listed factors are not truly barriers and can be overcome.
The purpose of this summary is to review the evidence surrounding conversations about EOL care in advanced cancer to inform providers, patients, and families about the transition to compassionate and effective EOL care.
Patients with advanced cancer, their family and friends, and oncology clinicians often are faced with treatment decisions that profoundly affect the patient's quality of life (QOL). Oncology clinicians are obligated to explore, with the patient and family, the potential impact of continued disease-directed treatments or care directed at the patient's symptoms and QOL.
This section summarizes information that will allow oncology clinicians and patients with advanced cancer to create a plan of care to improve QOL at the end of life (EOL) by making informed choices about the potential harms of continued aggressive treatment and the potential benefits of palliative or hospice care. This section:
In addition, information about outcomes associated with cardiopulmonary resuscitation (CPR) and admission to the intensive care unit (ICU) at the EOL will allow the oncology clinician to better present options to patients with advanced cancer who are near the EOL.
Quality of EOL Care
Questions relevant to measuring the quality of EOL care in patients with advanced cancer include the following:[
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:[
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.[
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.[
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,[
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.[
In the opinion of the authors, the observed regional variations were too large to be accounted for by racial or ethnic preferences or illness levels. Factors correlated with the aggressiveness of EOL care include the availability of resources such as the supply of ICU beds or imaging equipment; the number of doctors involved in each patient's care; and the treatment setting itself.[
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 [
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.[
A potential explanation for regional variations in EOL care is regional variations in patient preferences. The evidence, however, is conflicting.
The Good Death
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.'"[
The patient perspective
A landmark study of patients, families, and health care providers [
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 [
The caregiver perspective
In one study,[
Conversely, factors correlated with a higher QOL included the following:
Outcomes After Potentially Life-Prolonging Interventions
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 is a summary of the evidence that demonstrates the very 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.[
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%.[
One interpretation of the evidence, summarized in the Quality of End-of-Life Care in Patients With Advanced Cancer section, is that patients with advanced cancer too often receive burdensome and potentially harmful treatments without much chance of benefit and to the detriment of receiving purposeful end-of-life (EOL) care. Studies of patients with advanced cancer have identified factors that can influence EOL health care decisions and outcomes.
This section provides the oncology clinician with insights about potentially influential factors that may lead to more effective interactions with the patient in planning the transition to EOL care. Several notes of caution about the cited studies, however, are highlighted in the following:
Three very large, comprehensive studies provide information for characterizing the relationships among markers of quality communication, decision making, health care decisions, and outcomes in patients with advanced cancer. These studies are described here, and results are integrated into subsequent sections.
Phase I of SUPPORT confirmed significant shortcomings in patient-physician communication.[
The goal of planning the transition to EOL care in a deliberate and thoughtful manner is to increase the likelihood that a person with advanced cancer will receive high-quality EOL care consistent with their informed preferences. A variety of patient characteristics influence the interaction with the oncology clinician and the patient's decisions or outcomes. The following section highlights representative results of studies of patient demographics and other factors.
Cancer is a disease of older adults.[
Patient Understanding of Prognosis
Multiple studies have demonstrated correlations between patients' understanding of their prognoses and health care decisions, medical outcomes, or psychological adjustment near the EOL. However, differences in study methodology, patient populations, measures of prognostic understanding, and the endpoint studied as the primary outcome preclude definitive conclusions about the relevance of the correlations. Furthermore, causality can only be inferred, given the cross-sectional nature of most studies. Nonetheless, a summary of the published data organized by the measure of prognostic understanding may provide insight into the decision-making processes of patients with advanced cancer.
Respect for patient preferences is essential to high-quality cancer care and to protecting patient autonomy. Patients with advanced cancer who had an opportunity to discuss their EOL preferences were more likely to receive care consistent with their wishes.[
As it stands, evidence suggests that oncology clinicians often do not elicit or clarify patient preferences and, ultimately, fail to provide care consistent with their preferences. For example, a 2011 study [
The final observation highlights the fundamental question of how oncology clinicians should elicit patient preferences. While direct questioning may seem to be the most straightforward approach, a study of two single-item preference measures demonstrated that the decision-making preferences of patients appear to differ on the basis of what measure was utilized.[
Although the optimal way to elicit patient preferences is uncertain, a few studies have shed light on this topic. Patients with advanced cancer have several preferences of potential significance to planning the transition to EOL care, including:
A discussion about preferences is complicated. Preferences may be narrowly construed or may reflect the fundamental values of an individual. In a study of 337 older patients' attitudes about using advance directives to manage EOL care,[
In a 2020 survey study at Johns Hopkins Hospital, investigators interviewed 200 surgical and medical oncology inpatients about their preferences for discussions about advance directives, which their survey defined as "a document or paper that tells your care providers about the kind of medical treatment you would want if you were very sick and could not make those decisions for yourself."[
Preference for information about prognosis
Patients with life-limiting illnesses desire information about prognosis,[
Preference for decision-making role
A variety of measures assess patients' preferences for a decision-making role. The Control Preference Scale [
Preference for palliative chemotherapy
Several studies have demonstrated that most patients prefer chemotherapy before consultation with a medical oncologist.[
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.[
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.[
Patient Goals of Care
Discussions about goals of care with advanced-cancer patients are considered to be a critical component of planning the transition to EOL care. However, the definitions of goals of care vary significantly in the relevant literature. Before discussing observations related to goals of care with patients with advanced cancer (and other life-limiting illnesses), it is important to consider whether to distinguish goals of treatment from goals of care.
Another perspective is that there is a continuum of goals and that the purpose of conversations about goals of care is to help patients identify alternatives for achieving their goals. A structured literature review and a qualitative analysis of palliative care consultations about goals of care support this perspective, as summarized below:
At present, there are no data on the positive or negative influence of discussions about goals of care on EOL outcomes of patients with advanced cancer.
Religious and Spiritual Beliefs and Values of Patients
Patient religiosity and the provision of spiritual care consistent with a patient's preference have been correlated with EOL outcomes. A series of reports from CwC [
In analyses adjusted for demographic differences, higher levels of positive religious coping were significantly related to the receipt of mechanical ventilation, compared with low levels of religious coping (11.3% vs. 3.6%) and intensive life-prolonging care during the last week of life (13.6% vs. 4.2%).[
Patient-Oncologist EOL Discussions
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?"[
A subsequent analysis reported on the treatment preferences of 325 patients who died while enrolled in CwC.[
Recall of hospice discussions
Hospice discussions increase the rate of hospice enrollment. As part of CanCORS, investigators interviewed 1,572 patients with stage IV lung cancer (or a surrogate if the patient was unable to participate for health reasons or had died) about whether they had discussed hospice with a health care provider before the interview.[
The Nature of the Decision
Decision to receive chemotherapy
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.[
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 taken into account 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.[
The preferences of patients with advanced cancer should, in large part, determine the care they receive. However, evidence suggests that patients lack sufficient opportunity to develop informed preferences and, as a result, may seek care that is potentially inconsistent with their personal values and goals. For more information, see the Factors That Influence End-of-Life Care Decisions and Outcomes section.
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.[
Potential barriers include the following:
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.
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.
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, disagreement with or misperceptions about goals of treatment, for example, are unlikely to 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.[
The poor concordance between patients and oncology clinicians has been observed in a diverse range of patients, including patients with acute myeloid leukemia [
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.[
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%]).[
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.[
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.[
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.[
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.[
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).[
Oncologist Communication Behaviors
This section summarizes the evidence that identifies deficits in the communication behaviors of oncologists treating patients who have advanced cancer. This evidence 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 each of 118 patients with advanced cancer.[
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,[
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.[
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.[
In another study, men with advanced cancer who estimated a lower likelihood of survival at 6 months had increased levels of anxiety and depression.[
Oncologist Attitudes and Preferences
Studies strongly suggest 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.[
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.[
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.[
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.[
Reimbursement for Chemotherapy and Practice Economics
Before 2003, reimbursement for chemotherapy greatly exceeded acquisition costs for medical oncologists. Although the profit margin for chemotherapy has decreased, the treatment 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.[
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.[
For term definitions and a discussion of clearly communicating the purpose of each level of care for patients with advanced cancer, see the Factors That Influence End-of-Life Care Decisions and Outcomes section.
Importance of a Name
Surveys have identified the term palliative care as a potential impediment to referral to a palliative care clinic.[
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.[
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.[
Best Supportive Care
The ability to safely administer multiple cycles of chemotherapy depends on a range of interventions to minimize adverse effects. Most oncologists recognize that anticipating, recognizing, and responding to common adverse events with antiemetics, hematopoietic growth factors to reduce the occurrence of red blood cell transfusions or risks of neutropenia-associated infections, transfusions, medications to alleviate anxiety or depression, and analgesics for pain are mandatory skill sets in medical oncology. In this context, supportive care is an adjunct to the goal of maximizing the benefits of disease-directed treatment while minimizing potential decline in a patient's health-related QOL.
Three points about the term supportive care are relevant to this section:
Palliative care is an interdisciplinary model of care focused on patients with serious or life-threatening illnesses and their families. The goals of palliative care are to:
Palliative care is generally provided by physicians, nurses, social workers, and/or chaplains. Palliative care teams typically focus on the following:
Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care goes beyond the traditional disease model to include goals of care such as the following:
Palliative care can be delivered concurrently with life-prolonging care or as the main focus of care. For more information, see the Integrating Palliative Care and Conventional Cancer Care section.
The term palliative care has often been used to communicate the noncurative intent of chemotherapy for patients with advanced cancer or to signal, without clarifying the intent, the transition away from chemotherapy. This use may contribute to the persistent and pervasive sense that palliative care is equivalent to EOL care. However, palliative care is a specialized approach to the care of patients with serious or life-threatening illnesses; it is guided by principles and accomplished via a specific—but by no means exclusive—skill set distinct from the skills required to prescribe and manage chemotherapy.
Hospice is a team-oriented approach to providing expert medical care, pain management, and emotional and spiritual support for patients whose life expectancy is no longer than 6 months. Most hospice care is delivered in the home.
Hospice eligibility criteria
The criteria for hospice eligibility are established by state and federal regulations. A licensed physician needs to certify that the patient is suffering from a life-limiting illness, with a life expectancy of no longer than 6 months. The patient must sign a statement choosing hospice instead of other forms of treatment. In addition, the patient must receive care from a Medicare-approved hospice program. Hospice services are covered by Medicare, Medicaid, managed care, private health insurance, other third-party payers, and private payers.
Hospice may be indicated when a patient who has cancer:
Patients who have poor prognoses, such as those with pancreatic and brain cancers, can be eligible for hospice without meeting these criteria.[
Patient and caregiver barriers to hospice enrollment
The many potential barriers to timely hospice enrollment include the following:
Physician barriers to hospice enrollment
The following points summarize physician barriers to hospice enrollment:
A 2011 observational study from South Korea demonstrated that patients who were aware of their terminal illness and admitted to an inpatient palliative care unit had a median survival of 69 days. Survival was unaffected by admission to the intensive care unit, suggesting that patient-level characteristics, rather than medical interventions, influence survival.[
Potential shortcomings of the hospice system
Studies suggest that the hospice requirement that patients forgo disease-directed, potentially life-sustaining treatments may deprive patients in need of services. In one study of 300 cancer patients and 171 family members, willingness to forgo treatment was not well correlated with greater need for hospice services.[
For families, predictors included:
The authors suggested that the criterion of ending life-sustaining treatment for hospice be reconsidered.[
Hospices' own enrollment policies may contribute to underuse of the benefit in the United States. Results from a national survey of 591 U.S. hospices showed that 78% had at least one enrollment policy restricting access to care for patients with high-cost medical care needs, such as chemotherapy, radiation, transfusions, and total parenteral nutrition. Such policies are more likely to be found at smaller hospices, for-profit hospices, and hospices in rural areas.[
Hospice, resuscitation, and other potential life-sustaining interventions
While a do-not-resuscitate status is not mandatory for enrollment in hospice, less aggressive medical care near the EOL is associated with higher patient-reported QOL and better bereavement adjustment.[
Several strategies can potentially improve the quality of oncologist-patient communication and decision making and facilitate the transition to end-of-life (EOL) care for patients who have advanced cancer. For more information, see the Education and Training in Cancer Communication section in Communication in Cancer Care.
This section summarizes information relevant to the following strategies:
A comprehensive review of various strategies to improve prognostication is beyond the scope of this summary. One study has recently published a concise overview.[
Other investigators reported on the prognostic impact of a single self-reported QOL item in a cohort of almost 2,500 patients with newly diagnosed lung cancer.[
Novel Strategies to Improve Communication of Prognosis
An Australian study demonstrated that most patients with metastatic cancer wanted information about life expectancy or prognosis; some patients thought that receiving estimates of worst-, typical-, and best-case outcomes would be acceptable.[
Advance Care Planning (ACP)
The 1990 Patient Self-Determination Act guarantees patients the right to accept or refuse treatment and to complete advance medical directives to document their EOL preferences or to appoint someone to make decisions on their behalf in the event that their ability to make decisions is compromised. Studies indicate, however, that many patients have not participated in effective ACP. Several reasons might explain the underuse of ACP:[
This section provides a glossary of ACP terms and highlights the ambivalence that surrounds ACP. It includes a review of subsequent evidence that demonstrates the benefit of ACP, suggesting that a more nuanced approach to ACP will improve care near the EOL for patients who have advanced cancer.
The language of ACP
A brief glossary of the language of ACP may minimize confusion.
A proxy can be chosen in addition to, or instead of, a living will. A durable power of attorney for health care allows the patient to be more specific about medical treatment than does a living will.
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.[
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.[
Equivocal evidence is a source of physician ambivalence about ACP. Despite early concerns, however, there is growing evidence that ACP improves EOL care in patients with advanced cancer.
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.[
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.[
A 2010 study monitored 309 patients older than 80 years and their caregivers for 6 months or until a patient died.[
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:[
Surrogates experienced similar benefits.[
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.[
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.[
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.[
Interventions to Support Patient-Oncologist Communication
Various interventions to support patient-oncologist communication have been studied. There are few comparative trials, and the outcomes of interest have varied, so it is not possible to evaluate the interventions. However, the variety of interventions will allow the interested oncology clinician to find one of interest.
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.[
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.[
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.[
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.[
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).[
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.[
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.[
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.[
Cancer consultation preparation package (CCPP)
A CCPP developed by one group of researchers consists of four components:[
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.[
Pamphlet and psychologist-facilitated discussion
In a randomized trial, an ACP pamphlet supplemented by a discussion with a psychologist was compared with usual care.[
Decision aids are more complicated interventions designed to provide patients with a balanced summary of information about potential treatment options and possible outcomes, allowing patients to make informed decisions consistent with their preferences. Decision aids complement the patient-oncologist relationship and have been studied in two situations relevant to the care of patients with advanced cancer: the decision to undergo chemotherapy in advanced cancer and the decision to prepare for the EOL.
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.[
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).[
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).[
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.[
Integrating Palliative Care and Conventional Cancer Care
In 2012, the American Society of Clinical Oncology published a provisional clinical opinion advising its membership that "… combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden."[
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).[
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.[
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,[
Patients in the palliative care cohort who had an accurate understanding of prognosis were less likely to receive chemotherapy than were patients who had an inaccurate understanding of prognosis (9.4% vs. 50%; P = .02). A similar effect was not seen in patients in the standard care arm; the percentage of patients in the standard care arm receiving chemotherapy did not differ by perception of prognosis.
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.[
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.[
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.[
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.[
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.
One potential solution to the workforce shortage is to train oncologists in the skills of so-called primary palliative care.[
|Author/Reference||Recruitment (No.)||Selected Eligibility Criteria|
|||Randomized||Potentially Eligible||Screened||Type of Cancer||Time from Diagnosis||Oncologist-Estimated Survival|
|GI = gastrointestinal; GU = genitourinary, hem = hematologic.|
|Bakitas et al., 2009[
||322||681||1,222||GI; lung; GU; breast||Within 8–12 weeks||~1 year|
|Temel et al., 2010[
||151||Lung||≤8 weeks||Not specified|
|Zimmermann et al., 2014[
||461||892||3,293||GI; lung; GU; breast; gynecologic||Not specified||6–24 months|
|Bakitas et al., 2015[
||207||545||1,468||GI; lung; GU; breast; other; hem malignancy||Early: 30–60 days; delayed: >90 days||6–24 months|
|CARES-MIS = Cancer Rehabilitation Evaluation System Medical Interaction Subscale; CES-D = Center for Epidemiologic Studies Depression Scale; ED = emergency department; ENABLE = Educate, Nurture, Advise Before Life Ends; ESAS = Edmonton Symptom Assessment System; FACIT-Pal = Functional Assessment of Chronic Illness Therapy - Palliative Care; FACIT-Sp = Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being; FACT-L = Functional Assessment of Cancer Therapy - Lung; FAMCARE-P16 = 16-item measure of patient satisfaction with cancer care; HADS = Hospital Anxiety and Depression Scale; ICU = intensive care unit; NR = outcome measured but not reported; QUAL-E = Quality of Life at the End of Life; — = outcome not measured.|
|Bakitas et al., 2009 (ENABLE II)[
||Temel et al., 2010[
||Zimmermann et al., 2014[
||Bakitas et al., 2015 (ENABLE III)[
|Quality of life||FACIT-Pal||FACT-L||FACIT-Sp; QUAL-E||FACIT-Pal; QUAL-E|
|Satisfaction with care||—||—||FAMCARE-P16||—|
|End-of-life resource use||Hospital/ICU days; ED visits||Hospital/ICU days; ED visits; chemotherapy within 14 days of death; hospice utilization; place of death||Not specified||Hospital/ICU days; ED visits; chemotherapy within 14 days of death; place of death|
|Median overall survival||Yes||Yes||—||Yes|
|ENABLE = Educate, Nurture, Advise Before Life Ends; NR = outcome measured but not reported; NS = no significant difference in outcomes detected; PC = favors palliative care intervention; — = outcome not measured.|
|Bakitas et al., 2009 (ENABLE II)[
||Temel et al., 2010[
||Zimmermann et al., 2014[
||Bakitas et al., 2015 (ENABLE III)[
|Quality of life||PC||PC||NS at 3 months; PC at 4 months||NS|
|Mood||PC||PC||NS at 3 months; PC at 4 months||NS|
|Symptoms||NS||—||NS at 3 months; PC at 4 months||NS|
|Satisfaction with care||—||—||PC at 3 months; PC at 4 months||—|
|Medical interactions||—||—||NS at 3 months; NS at 4 months||—|
|End-of-life resource use||NS||NR||NR||NS|
In 1961, a survey of 219 physicians was published, with 88% of respondents indicating that their "usual policy about telling patients" they have cancer was "don't tell"; however, 34% of the group indicated that they occasionally made exceptions and disclosed the diagnosis, most often to family members.[
Despite this progress, the effective communication of prognosis remains a challenge, as measured by patient-reported estimates of life expectancy or goals of treatment. For example, a 1984 study reported that 37% of patients with metastatic, incurable cancer felt that treatment would cure their disease.[
Potential explanations for the communication deficits regarding prognosis are summarized in the Potential Barriers to Planning the Transition to End-of-Life Care section. Regardless of the explanation, however, misunderstandings about prognosis compromise a patient's ability to make informed health care decisions consistent with his or her values, goals, and preferences. Ultimately, each oncology clinician chooses, on some level, when and how to explain to a patient with advanced cancer that disease-directed treatments are unlikely to prove effective and a continued focus on treatment risks harming the patient.
The goal of this summary section is to provide clinicians with frameworks for considering their role in planning the transition to end-of-life (EOL) care and discussing the concept of transition with patients and their loved ones.
The Patient-Clinician Relationship and Planning the Transition to EOL Care
It is important for oncology clinicians to consider how their relationship with patients will help patients express preferences that are consistent with their values and goals for receiving high-quality EOL care. One study proposed the following four models of the physician-patient relationship, based on the goals of the interaction, the physician's obligations, the role of patient values, and how patient autonomy influences the relationship:[
In a carefully reasoned argument, the authors concluded that the preferred choice is the deliberative model, which can be paraphrased as a belief that patients' goals and preferences are open to development and evolution. The goal of this relationship is to help the patient choose the best health-related goals and options that can be achieved, given the clinical situation. The physician's obligation is to articulate for the patient the most compelling goals and preferences and to inform the patient of other options. In that sense, the physician is a teacher.[
Qualitative studies of patients' perception of decision making suggest that the deliberative clinician-patient relationship is especially critical in advanced-stage cancer. For example, one group of investigators interviewed 36 patients with potentially curable esophageal cancer about their decision to undergo esophagectomy. The investigators anticipated that themes related to autonomy, shared decision making, and information disclosure would become apparent; however, the following themes emerged:[
Another group of investigators interviewed patients with pancreatic carcinoma and identified a change in attitudes toward treatment decision making over time.[
Planning the Transition From Diagnosis to EOL Care
The word transition implies a passage from one place to another. Planning the transition to EOL care, therefore, requires a shared understanding of where the patient is in the advanced-cancer trajectory and why a transition is necessary or advisable.
The appropriate time to transition to EOL care is when the change is most consistent with the patient's goals of care. In determining when to transition to EOL care, the oncology clinician strives to be a teacher and trusted friend. The clinician must present his or her opinion of the effectiveness of continued cancer-directed treatments and help the patient understand the patient's own values, perspectives, goals of care, and preferences. In this way, the clinician aids the patient in constructing treatment and care preferences toward the EOL.[
The concept of transition is often invoked from the health care provider's perspective.[
The figure below depicts a phase model of planning the transition to EOL care for patients with advanced cancer.
A phase model of planning the transition to end-of-life (EOL) care in advanced cancer. The trajectory of advanced cancer begins with the realization that disease-directed treatments are no longer curative. Over time, the patient, family, and oncology clinician should strive to develop a shared understanding of available treatments and recognize when the likelihood of benefit decreases in relation to the potential harm of treatment. LST = life-sustaining treatment; EOL = end-of-life
Panel A of the figure demonstrates the increasingly unfavorable risk-benefit ratio of disease-directed treatments over time. This conceptualization is also from the oncology clinician's perspective. The oncology clinician could choose two tactics to develop a shared understanding of the decline in the risk-to-benefit ratio:
Panel B of the figure represents the concept of transitions. The disease trajectory is divided into five relatively discrete phases, from the diagnosis of advanced cancer to death. The first two phases are dominated by disease-directed strategies, including a phase in which the intent of disease-directed treatment is cure and a second phase in which the intent of treatment is symptom relief, disease control, and, perhaps, improved life expectancy. The EOL phase is subdivided into a time in which the patient is not receiving therapy but may still anticipate treatment in the future, and a phase in which the goal of care is to ensure that the EOL is free from undue burden or distress. Similar figures are often modified to include a diagonal line depicting a gradual increase in the focus on palliative care as the cancer progresses and life is more likely to end.
The figure represents the advanced-cancer trajectory to help oncologists formulate and articulate the potentially salient differences between the phases from the oncologist's perspective in terms of the following:
The oncology clinician should then endeavor to communicate the information in a compassionate manner that is comprehensible to the patient and family. For more information, see the Strategies to Improve Patient-Oncologist Communication and Decision Making in Advanced Cancer section.
Clearly describing each phase, however, does not necessarily inform patients of when it is time to transition. A focus group study of health care providers, patients with advanced cancer and other terminal illnesses, and family members prioritized three discrete communication skills as valuable to the dying person:[
In conclusion, the right time to transition from disease-directed treatments toward EOL care depends, in large part, on the patient's goals and preferences. The evidence indicates that conversations about EOL care are difficult but of great benefit to the patient. Oncologists who delay initiating these important conversations or who communicate in ambiguous or difficult-to-understand language fail to meet "the physician's central task in caring for a gravely ill person near death[, which] is to accompany and guide the patient, who as a rule does not want to be dead, through the critical transition."[
The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.
Editorial changes were made to this summary.
This summary is written and maintained by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of NCI. The summary reflects an independent review of the literature and does not represent a policy statement of NCI or NIH. More information about summary policies and the role of the PDQ Editorial Boards in maintaining the PDQ summaries can be found on the About This PDQ Summary and PDQ® - NCI's Comprehensive Cancer Database pages.
Purpose of This Summary
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about planning for end-of-life care in advanced cancer. It is intended as a resource to inform and assist clinicians in the care of their patients. It does not provide formal guidelines or recommendations for making health care decisions.
Reviewers and Updates
This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).
Board members review recently published articles each month to determine whether an article should:
Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.
The lead reviewers for Planning the Transition to End-of-Life Care in Advanced Cancer are:
Any comments or questions about the summary content should be submitted to Cancer.gov through the NCI website's Email Us. Do not contact the individual Board Members with questions or comments about the summaries. Board members will not respond to individual inquiries.
Levels of Evidence
Some of the reference citations in this summary are accompanied by a level-of-evidence designation. These designations are intended to help readers assess the strength of the evidence supporting the use of specific interventions or approaches. The PDQ Supportive and Palliative Care Editorial Board uses a formal evidence ranking system in developing its level-of-evidence designations.
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PDQ is a registered trademark. Although the content of PDQ documents can be used freely as text, it cannot be identified as an NCI PDQ cancer information summary unless it is presented in its entirety and is regularly updated. However, an author would be permitted to write a sentence such as "NCI's PDQ cancer information summary about breast cancer prevention states the risks succinctly: [include excerpt from the summary]."
The preferred citation for this PDQ summary is:
PDQ® Supportive and Palliative Care Editorial Board. PDQ Planning the Transition to End-of-Life Care in Advanced Cancer. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/advanced-cancer/planning/end-of-life-hp-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389513]
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Last Revised: 2022-05-24
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