Factors That Influence End-of-Life Care Decisions and Outcomes
Patient Understanding of Prognosis
Preference for information about prognosis
Preference for decision-making role
Preference for palliative chemotherapy
Preference for QOL or length of life
Patient Goals of Care
Religious and Spiritual Beliefs and Values of Patients
Patient-Oncologist EOL Discussions
Recall of EOL discussions
Recall of hospice discussions
The Nature of the Decision
Decision to receive chemotherapy
Decision to limit treatment
One interpretation of the evidence summarized in the section on Quality of End-of-Life Care in Patients With Advanced Cancer 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:
- The cross-sectional design of most studies prevents conclusions about causality. For example, studies that demonstrate a correlation between a patient’s optimistic predictions of prognosis and treatment decisions may be confounded by the tendency for the patient who chooses a specific treatment to be optimistic about the outcome, rather than the patient’s optimism being the primary reason for treatment.
- Definitions of advanced cancer, median survival times of enrolled subjects, and study methodologies may all be relevantly different across studies, and uncontrolled or unrecognized confounders may skew reported correlations.
- Many of the potentially relevant factors were treated as primary or secondary outcomes or as only one variable in multivariate analysis. Thus, the relationships among patient-oncologist communication, health care decision making near the EOL, and outcomes are not always firmly established. Nonetheless, the evidence from multiple sources demonstrates plausible and compelling links.
- Factors unrelated to communication or decision making may influence the health care decisions of patients with advanced cancer near the EOL.
Three very large, comprehensive studies provide a rich source of 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.
- The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT): This multisite (Ohio, North Carolina, Massachusetts, Wisconsin, and California) two-phase study evaluated an intervention to improve physician understanding of patient preferences, documentation and timing of do-not-resuscitate (DNR) orders, pain, time in intensive care, being comatose or receiving mechanical ventilation before death, and the use of hospital resources. The first phase was a prospective descriptive study to confirm barriers and gaps in patient-physician communication; the second phase was a cluster randomized trial to test an intervention that targeted the identified barriers. A total of 4,301 patients were enrolled in phase I, and 4,804 were enrolled in phase II. The intervention focused on providing reliable information about prognosis, documenting patient and family preferences, and using a skilled nurse to educate patients and families and facilitate communication.
Phase I of SUPPORT confirmed there were significant shortcomings in patient-physician communication.[2,3] Phase II demonstrated that the nurse-led intervention was not successful in increasing discussions about CPR preferences or concordance between patients and physicians about patients’ CPR preferences; or decreasing the number of days spent in the intensive care unit (ICU), frequency of mechanical ventilation, or level of pain.
- The Coping with Cancer (CwC) study: This prospective, longitudinal, multisite study of terminally ill cancer patients and their informal caregivers examined how psychosocial factors influence patient care and caregiver bereavement. CwC enrolled 718 patients and their caregivers between September 2002 and August 2008. Key eligibility criteria included a diagnosis of advanced cancer (distant metastases and disease refractory to first-line chemotherapy) and presence of an informal caregiver. The median overall survival of enrolled patients was 4.5 months.
- The Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium: This study enrolled more than 5,000 people diagnosed with lung or colorectal cancer between 2003 and 2005 who were identified within weeks of their diagnoses by a rapid-ascertainment method.[5,6] Patients lived in one of five geographic areas (Northern California; Los Angeles County, California; North Carolina; Iowa; or Alabama) or received care through a designated health maintenance organization or selected Veterans Health Administration hospital. Patients (or surrogates, if patients had died or were unavailable) were interviewed via computer-assisted surveys 4 to 7 months after diagnosis. The medical records of consenting adults were also abstracted.
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.Age
Cancer is a disease of older adults. It is important to remember, however, that there are probably differences in different cohorts of older adults.
- SUPPORT demonstrated a correlation between increasing age and a decreased desire for life-prolonging treatment. Older patients were less likely to receive aggressive treatments.
- Seventy-three patients aged 70 to 89 years with metastatic colon cancer were interviewed about treatment decision making. Fewer than half (44%) of the patients wanted information about expected survival when they made decisions about treatment.
- Older women are more likely than younger women to receive palliative care near the EOL. One study reported that 69.6% of women who died from metastatic breast cancer between 1992 and 1998 in the province of Quebec did so in an acute-care hospital. While most women (75%) had some indicators of a palliative care–oriented model (as extracted from information contained in two administrative databases), women younger than 50 years were less likely to receive palliative care than were women older than 70 years (odds ratio [OR], 1.85).
- One study analyzed the relationships between age, treatment preferences, and treatment received in a cohort of 396 deceased patients who were enrolled in CwC. Patients older than 65 years and patients aged 45 to 64 years were less likely than younger patients to prefer and receive life-prolonging treatments. However, older patients who preferred life-prolonging therapies were less likely than younger patients to receive such treatments.
- In one study, older men with metastatic colorectal cancer were more likely than women to desire prognostic information (56% vs. 29%; P < .05)
- Another study interviewed patients with advanced cancer before and after a visit with an oncology clinician to discuss scan results. Women were more likely to recognize the cancer as incurable and to accurately identify the stage of the cancer. Women were also more likely to report that discussions about life expectancy occurred.
- A secondary analysis of CwC demonstrated that black patients were more likely to receive intensive treatments near the EOL. The frequency of high-intensity treatments near the EOL did not correlate with stated preferences and, unlike the case with white patients, EOL discussions did not decrease the likelihood of intensive treatments. This effect of race persisted even if a DNR order was in place at the time of death.
- Another study analyzed interviews with terminally ill white and African American patients to determine whether the patient-reported quality of relationships with physicians correlated with advance care planning (ACP) and preferences for life-sustaining treatment (LST). African American patients reported lower-quality relationships, but these lower ratings did not explain the lower rates of ACP or higher rates of preferences for LST by African Americans.
- Patients of African American or Asian descent are less likely to enroll in hospice and more likely to receive aggressive treatments, including hospitalizations and ICU admissions, than are white patients.[15,16]
- Patients with Medicaid are less likely to receive hospice care than are patients insured through Medicare, and are more likely to die in acute-care facilities. Conversely, in a Medicaid population, black patients are more likely to show evidence of EOL discussions.
- Medicare beneficiaries enrolled in a managed care program were more likely to enroll in hospice and to enroll for longer periods of time.
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 of interest 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.
- Patients often provide overly optimistic estimates of the likelihood of survival beyond 6 months. One group of researchers analyzed the prognostic understanding (measured as an estimate of surviving beyond 6 months) of 917 adults with metastatic colorectal or lung cancer who were enrolled in SUPPORT. Patients who estimated a 90% or higher chance of surviving 6 months were more likely to prefer life-extending therapy and were more likely to experience a readmission, attempted cardiopulmonary resuscitation, or death while on a mechanical ventilator.
- Patients frequently fail to correctly report the goal of anticancer treatment. One group of researchers reported that at baseline, 30.4% of a cohort of 181 patients with advanced cancer believed the treatment was curative; 20% reported they did not know. Subjects who were not married, lived in rural areas, died within 6 months, or were receiving chemotherapy were more likely to report the goal of treatment as curative. At a 12-week assessment, fewer patients reported cure as a goal, but the difference was not significant. The results of this study are consistent with those of other studies reported between 1984  and the present.
- Patients are often unaware of the terminal nature of the diagnosis of advanced cancer. However, patients who are aware of their terminal diagnosis have a higher quality of life (QOL)  and are more likely to receive care consistent with their preferences.
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 preferences. However, evidence suggests 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  of 128 patients with newly diagnosed advanced-stage lung cancer found that:
- 88.2% wanted to be informed about life expectancy (52.7% said they were informed).
- 63.5% wanted to be informed about palliative care (25% said they were informed).
- 56.8% wanted to be informed about EOL decisions (31% said they were informed).
- None of the patients recalled being asked about their information preferences.
The final observation highlights the fundamental question of how oncology clinicians should elicit patient preferences. While direct questioning may seem 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.
The optimal way to elicit preferences, which would reduce the likelihood of failing to respect patients’ wishes, is not certain. Patients with advanced cancer have several preferences of potential significance to planning the transition to EOL care, including:
- Timing and manner of prognostic information disclosure.
- Decision-making role.
- Palliative chemotherapy rather than palliative care without chemotherapy.
- QOL or length of life.
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, 85% of respondents believed it was definitely (55%) or somewhat (30%) necessary to record their wishes in advance directives. However, most (80%) preferred either general value and goal statements or both precise and general directions. There was a strong preference for discussion among surrogate decision makers on behalf of the incapacitated person.Preference for information about prognosis
Patients with life-limiting illnesses desire information about prognosis, believe that such information may be provided without compromising hope, and prefer that oncologists inquire about their preferences for such information. Younger patient age, female sex, and a shorter life expectancy as perceived by the patient correlate with increased information needs.Preference for decision-making role
A variety of measures have been developed to assess patients’ preferences for a decision-making role. The Control Preference Scale  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, although how much the variation is caused by differences between disease and types of patients or reflects methodological differences is not known.
- Patients aged 70 to 89 years with metastatic colorectal cancer were interviewed about their preferred role in decision making. Fifty-two percent preferred a passive role. Preference for a passive role was more common among patients who were older or female or had a poorer performance status or newly diagnosed metastatic disease.
- In a separate study, a similar proportion (47%) of women aged 31 to 83 years with metastatic breast cancer reported taking a passive role in decision making about palliative chemotherapy. Women who were facing a decision about second-line chemotherapy reported a slightly higher rate of active participation (43% vs. 33%; P = .06).
- A study of patients with advanced cancer in a palliative care clinic demonstrated that 63% of patients preferred an active role in decision making.
Several studies have identified a high prevalence of patient preference for chemotherapy before consultation with a medical oncologist. 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. 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.Preference for QOL or length of life
As discussed in the introductory paragraph to the Patient Preferences section of this summary, patient preferences may be narrowly or broadly construed. Preferences that are foundational to more specific preferences might be better considered as patient values. In addition to the preference being measured, the methods of measuring preferences vary significantly. The interested reader may consult a 2012 review  for a discussion of the different instruments. The following paragraphs highlight some notable observations.
- Multivariate analysis of one study  demonstrated that advanced cancer patients’ preferences for chemotherapy were explained by higher values assigned to length of life and lower values for QOL. The last variable was measured by the Quality-Quantity Questionnaire (QQQ), which categorizes patients as favoring QOL or length of life, or having no preference. The patients’ preconsultation preferences were most strongly explained by striving for length of life rather than QOL. Given the lack of demonstrable survival benefit of chemotherapy in advanced cancer, the authors speculated that patients may not receive accurate information in the consultation that clearly delineates the goal of chemotherapy.
- Another study  interviewed 125 outpatients with cancer (all stages) about their attitudes toward treatment. Patients also completed the QQQ. The investigators found that patients who were older, tired, or more negative valued QOL more than others. Patients who were within 6 months of diagnosis rated length of life as more important. It should be noted, however, that patients did not rank the importance of length relative to quality in this study. There was a correlation between striving for QOL and appreciation for ACP.
- A third study enrolled only patients with advanced cancer (459 respondents) and asked patients to rate the relative value of QOL or length of life. Fifty-five percent valued QOL and length of life equally; 27% preferred QOL; and 18% preferred length of life. A preference for QOL correlated with older age, male gender, and increased levels of education. Patients with a preference for length of life also preferred less pessimistic communication from oncologists.
Discussions about goals of care with advanced-cancer patients are considered by many 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 discussions about the relevant observations related to goals of care in patients with advanced cancer (and other life-limiting illnesses) take place, it is important to consider whether a distinction should be drawn between goals of treatment and goals of care.
- Some investigators have used the phrase goals of care to identify the goals of disease-directed treatments. Perhaps it would be clearer if such goals were labeled goals of treatment.
- Viewed another way, goals of care are distinct from goals related to treatment of disease with remittive or curative intent; these goals reflect the interests of patients and families after they have accepted that disease-directed treatments will not accomplish their intended goals and they seek “the profound human needs for meaning, comfort, and direction.” From that perspective, goals of care are similar to the attributes that define a good death, as discussed earlier in this summary.
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 the various 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:
- One study analyzed relevant publications to establish a categorization of relevant goals of care for patients with life-limiting illnesses. The authors proposed six comprehensive goals: be cured; live longer; improve or maintain function, QOL, and independence; be comfortable; achieve life goals; and provide support for family or caregiver.
- Another study reported a qualitative analysis of prognostic communication in palliative care consultations. The investigators noted that palliative care physicians used a tactic of excluding certain goals of care as a means to encourage patients to think about alternative goals. This suggests that treatment-related goals are often replaced by more personal goals once disease-directed treatment is not advisable.
At present, there are no data on the positive or negative influence of discussions about goals of care on the 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 [44-46] found that approximately half of patients with serious or life-threatening illnesses indicated that religious or spiritual beliefs were important to them, as measured by higher scores on the Positive Religious Coping Scales subscale of the RCOPE, a measure of religious coping. RCOPE scores were significantly higher among African Americans and Hispanics.
In analyses adjusted for demographic differences, higher levels of positive religious coping were found to be 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%). The degree to which religious and spiritual concerns are addressed by the care facility may substantially affect this relationship. Patients who reported that their spiritual needs were substantially supported by the medical team (26.3%) were significantly more likely to receive hospice care and less likely to receive aggressive care, and reported higher QOL. Pastoral care, received by about 46%, did not affect receiving such services, but did affect QOL just before death.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. One hundred twenty-three 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?” 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. 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?”; and 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 were aware they were terminally ill (OR = 3.94; P = .0005).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. Of the 1,517 patients in the final study cohort, 807 (53%) had discussed hospice with a physician before the interview. Hospice discussions strongly predicted enrollment in hospice within a year of diagnosis (70% enrollment with discussion vs. 26% without discussion; P < .001).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 with 102 women with advanced breast cancer who were receiving first-line (n = 70) or second-line (n = 47) palliative chemotherapy. 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 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. 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 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. 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.References
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