End-of-Life Discussions, Goal Attainment, and Distress at the End of Life: Predictors and Outcomes of Receipt of Care Consistent With Preferences

Dana-Farber Cancer Institute, Department of Pediatric Oncology, 44 Binney St-454, Boston, MA 02115, USA.
Journal of Clinical Oncology (Impact Factor: 18.43). 03/2010; 28(7):1203-8. DOI: 10.1200/JCO.2009.25.4672
Source: PubMed


Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences.
This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians.
Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences.
Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.

Download full-text


Available from: Susan D Block,
22 Reads
  • Source
    • "Evidence of intensive chemotherapy use near the end-of-life is not, in itself, evidence of harm. However, a number of these studies have also demonstrated that compared to patients not receiving drug treatment close to death, such treatment is associated with poorer quality of life and death e for example, a higher number of emergency room visits and admissions to ICU, fewer hospice services , decreased likelihood of patients dying in their preferred place, increased physical and psychological distress and, in some countries, bankruptcy (Earle et al., 2004; Greer et al., 2011; Mack et al., 2010; Temel et al., 2010; Wright et al., 2014; Zafar et al., 2013). Moreover, patients receiving chemotherapy near the endof-life do not live longer than patients not receiving such therapy (Nappa et al., 2011; Saito et al., 2011; von Gruenigen et al., 2008). "
    [Show abstract] [Hide abstract]
    ABSTRACT: There is evidence from some countries of a trend towards increasingly aggressive pharmacological treatment of patients with advanced, incurable cancer. To what extent should this be understood as a progressive development in which technological innovations address previously unmet needs, or is a significant amount of this expansion explained by futile or even harmful treatment? In this article it is argued that while some of this growth may be consistent with a progressive account of medicines consumption, part of the expansion is constituted by the inappropriate and overly aggressive use of drugs. Such use is often explained in terms of individual patient consumerism and/or factors to do with physician behaviour. Whilst acknowledging the role of physicians and patients’ expectations, this paper, drawing on empirical research conducted in the US, the EU and the UK, examines the extent to which upstream factors shape expectations and drive pharmaceuticalisation, and explores the value of this concept as an analytical tool.KeywordsUnited StatesUnited Kingdompharmaceuticalizationend-of-life cancer careexpectationsovertreatmentpatient preferencesclinical benefit
    Social Science & Medicine 12/2014; 131. DOI:10.1016/j.socscimed.2014.12.007 · 2.89 Impact Factor
  • Source
    • "The application of aggressive end-of-life (EoL) care for cancer patients has recently become more and more popular (Cooke et al., 2014; Ho et al., 2011). Discussions between terminal cancer patients and their physicians about preferences for EoL care can lead to such care being less aggressive (Wright et al., 2008; Mack et al., 2010). The current guidelines recommend that physicians discuss EoL care planning with terminal cancer patients early on in the course of the disease, during periods of physical and mental stability, rather than when the patient is undergoing acute deterioration (Peppercorn et al., 2011; Smith et al., 2012). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Objective: There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL). Method: A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep-accept group, (2) the keep-reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference. Results: The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care. Significance of results: The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.
    Palliative and Supportive Care 11/2014; 13(5):1-8. DOI:10.1017/S147895151400131X · 0.98 Impact Factor
  • Source
    • "Consequently, patients often overestimate prognoses, underestimate disease severity, and have unrealistic expectations for cure [2-5]. Having frank, sensitive discussions is associated with more realistic prognostic estimates and decisions that are better aligned with patients’ wishes [3,5-8]. When these discussions occur before patients are critically ill, patients report greater well-being and have fewer unwanted aggressive interventions in the last weeks of life, with no detrimental effect on survival [3,5,9]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Background Communication about prognosis and treatment choices is essential for informed decision making in advanced cancer. This article describes an investigation designed to facilitate communication and decision making among oncologists, patients with advanced cancer, and their caregivers. Methods/design The Values and Options in Cancer Care (VOICE) Study is a National Cancer Institute sponsored randomized controlled trial conducted in the Rochester/Buffalo, NY and Sacramento, CA regions. A total of 40 oncologists, approximately 400 patients with advanced cancer, and their family/friend caregivers (one per patient, when available) are expected to enroll in the study. Drawing upon ecological theory, the intervention uses a two-pronged approach: oncologists complete a multifaceted tailored educational intervention involving standardized patient instructors (SPIs), and patients and caregivers complete a coaching intervention to facilitate prioritizing and discussing questions and concerns. Follow-up data will be collected approximately quarterly for up to three years. Discussion The intervention is hypothesized to enhance patient-centered communication, quality of care, and patient outcomes. Analyses will examine the effects of the intervention on key elements of physician-patient-caregiver communication (primary outcomes), the physician-patient relationship, shared understanding of prognosis, patient well-being, and health service utilization (secondary outcomes). Trial registration Clinical Trials Identifier: NCT01485627
    BMC Cancer 04/2013; 13(1):188. DOI:10.1186/1471-2407-13-188 · 3.36 Impact Factor
Show more