End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences.
ABSTRACT 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.
Article: Deciding what information is necessary: do patients with advanced cancer want to know all the details?[show abstract] [hide abstract]
ABSTRACT: Communicating effectively with patients who have advanced cancer is one of the greatest challenges facing physicians today. Whilst guiding the patient through complex diagnostic and staging techniques, treatment regimens and trials, the physician must translate often imprecise or conflicting data into meaningful personalized information that empowers the patient to make decisions about their life and body. This requires understanding, compassion, patience, and skill. This narrative literature review explores current communication practices, information preferences of oncology patients and their families, and communication strategies that may assist in these delicate interactions. Overwhelmingly, the literature suggests that whilst the majority of patients with advanced cancer do want to know their diagnosis and receive detailed prognostic information, this varies not only between individuals but also for a given individual over time. Barriers to the delivery and understanding of information exist on both sides of the physician-patient relationship, and family dynamics are also influential. Despite identifiable trends, the information preferences of a particular patient cannot be reliably predicted by demographic, cultural, or cancer-specific factors. Therefore, our primary recommendation is that the physician regularly asks the patient what information they would like to know, who else should be given the information and be involved in decision making, and how that information should be presented.Cancer Management and Research 01/2011; 3:191-9.
Article: End-of-life care and circumstances of death in patients dying as a result of cancer in Belgium and the Netherlands: a retrospective comparative study.[show abstract] [hide abstract]
ABSTRACT: To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By using similar standardized procedures, GPs reported on aspects of end-of-life care and the circumstances of nonsudden death of patients with cancer in their practice. Of the 422 reported patients with cancer, most resided at home during the last year of life (Belgium, 91%; the Netherlands, 95%). Death occurred at home in 34% (Belgium) and 61% (the Netherlands) and in the hospital in 29% (Belgium) and 19% (the Netherlands). In the last month of life, end-of-life issues were more often discussed in the Netherlands (88%) than in Belgium (68%). In both countries, physical problems were discussed most often (Belgium, 49%; the Netherlands, 78%) and spiritual issues least often (Belgium, 20%; the Netherlands, 32%). Certain end-of-life treatment preferences were known for 43% (Belgium) and 67% (the Netherlands) of patients. In the last week of life, treatment was most often focused on palliation (Belgium, 94%; the Netherlands, 91%). Physical distress was reported in 84% (Belgium) and 76% (the Netherlands) of patients and psychological distress in 59% and 36%. Most distressing was lack of energy (Belgium, 73%; the Netherlands, 71%) and lack of appetite (Belgium, 61%; the Netherlands, 53%). Two thirds of patients were bedridden (Belgium, 67%; the Netherlands, 69%). Although place of death and communication about end-of-life issues differ substantially, a palliative treatment goal is adopted for the vast majority of patients in both countries. However, GPs reported that the majority of patients experienced symptom distress at the end of life, which suggests important challenges remain for improving end-of-life care.Journal of Clinical Oncology 11/2011; 29(32):4327-34. · 18.37 Impact Factor