Retraction Note: When the treatment goal is not cure: are patients informed adequately?

Abstract

We determined the extent to which Australian patients with incurable cancer are informed of their prognosis and treatment options by their oncologists and are encouraged to participate in treatment decisions. To this end, 118 patients with incurable cancer presenting for an initial consultation with one of nine oncologists in two Sydney teaching hospitals were enrolled in the study. Consultations were audio-taped. We developed a coding system to assess the disclosure of information considered necessary to equip patients to make informed decisions and to evaluate doctor encouragement of patient participation in treatment decision-making. Patient recall, satisfaction, and anxiety and their perceptions of the decision-making process were assessed. Most patients were informed about the aim of cancer treatment (84.7%), that their disease was incurable (74.6%) and about life expectancy (57.6%); 44.1% were presented with an alternative to cancer treatments, such as supportive care, 36.3% were informed how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Patient understanding was checked in only 10% of consultations. While greater information disclosure did not appear to elevate anxiety levels, greater patient participation in the decision making process was associated with increased anxiety levels (P=0.0005), which persisted over a 2-week time span. Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to cancer treatment.

Communication about cancer near the end of life

“…In transitions discussions, patients and their families want their oncologist to be sensitive to how information is affecting them, don’t want a greater amount of detail than they are ready to hear, and want to be able to ask questions. 22, 26, 89, 90 Patients often ask about the availability and efficacy of further treatments, including alternative and complementary therapies, and prognosis when they are told that their cancer cannot be cured. Given that a subset of patients have misconceptions about the intent of palliative anticancer therapy noted earlier, the oncologist will likely need to communicate that the cancer cannot be cured even if this has been done previously.…”

“…However, physicians often do not express empathy in response to expressions of emotion, and this blocks further discussion of the concern, possibly ‘training’ patients not to bring these issues up in the future. 65, 90 The oncologist’s commitment to face the future with the patient, sometimes called nonabandonment, 95 is especially important to express in transition discussions. Patients want to know that their oncologist will still be their doctor even if they do not continue chemotherapy.…”

Dancing Around Death

“…Seriously ill patients desire honest, sensitive communication about end-of-life issues (Clayton, Butow, Arnold, & Tattersall, 2005; Wenrich et al, 2001). However, providers often do not convey that an illness is incurable (Tattersall, Gattellari, Voigt, & Butow, 2002), and do not address patients’ concerns (Butow, Brown, Cogar, Tattersall, & Dunn, 2002). Discussions of life-sustaining therapies seldom include realistic information about risks, benefits, and outcomes, or incorporate patients’ overall prognosis and goals (Anderson, Chase, Pantilat, Tulsky, & Auerbach, 2011; Kaldjian et al, 2009).…”

A synthesis of the literature on breaking bad news or truth telling: Potential for research in India

“…Notwithstanding the above findings, approximately 25-50% of patients with a terminal disease in Australia,[32] Argentina, Brazil, France, Belgium, Switzerland,[33] Japan,[26] Egypt,[34] the United States,[35] North America,[36] Norway, and Denmark[37] are kept in the dark about their health status by physicians. The proportion of such patients could be between 50% and 75% in Spain,[3038] Italy,[39] Nepal,[28] China,[40] and many of the Asian countries.…”