A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer

ArticleinThe journal of supportive oncology 9(2):79-86 · March 2011with15 Reads
DOI: 10.1016/j.suponc.2010.12.005 · Source: PubMed

Most cancer patients do not have an explicit discussion about prognosis and treatment despite documented adverse outcomes. Few decision aids have been developed to assist the difficult discussions of palliative management. We developed decision aids for people with advanced in curable breast, colorectal, lung, and hormone-refractory prostate cancers facing first-, second-, third-, and fourth-line chemotherapy. We recruited patients from our urban oncology clinic after gaining the permission of their treating oncologist. We measured knowledge of curability and treatment benefit before and after the intervention. Twenty-six of 27 (96%) patients completed the aids, with ameanage of 63, 56% female, 56% married, 56% African American, and 67% with a high school education or more. Most patients (14/27, 52%) thought a person with their advanced cancer could be cured, which was reduced (to 8/26, 31%, P = 0.15) after the decision aid. Nearly all overestimated the effect of palliative chemotherapy. No distress was noted, and hope did not change. The majority (20/27, 74%) found the information helpful to them, and almost all (25/27, 93%) wanted to share the information with their family and physicians. It is possible to give incurable patients their prognosis, treatment options, and options for improving end-of-life care without causing distress or lack of hope. Almost all find the information helpful and want to share it with doctors and family. Research is needed to test the findings in a larger sample and measure the outcomes of truthful information on quality of life, quality of care, and costs.

    • "...cting honest and precise information from their physicians, given with empathy and sensitivity [17,293031. However, these discussions are difficult, and may be harmful for patients in terms of quality ..."
      Results reported by Temel et al. showed that quality of life, psychological consequences and length of life were improved in metastatic pulmonary cancer patients as early palliative care, in collaboration with oncological care, notably focused on patients' understanding of prognosis [10, 27, 28] . Several studies revealed that many patients were able to keep hope alive while acknowledging the terminal stage of their disease, and that most of them were expecting honest and precise information from their physicians, given with empathy and sensitivity [17,293031. However, these discussions are difficult, and may be harmful for patients in terms of quality of life and the psychological impact [32].
    [Show abstract] [Hide abstract] ABSTRACT: Background: Little is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians' and the patients' perspectives. Methods: (1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews. Results: In conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the "no choice" models: 1) trying to resolve the dilemma via a technical answer or a "wait-and-see" posture, instead of involving the patients in the questioning and the thinking; and 2), giving a "last minute" choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients' attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients. Conclusions: This study indicate to what extent these difficult decisions are related to physicians' and patients' respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.
    Full-text · Article · Nov 2015 · BMC Palliative Care
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  • Preview · Article · May 2011 · New England Journal of Medicine
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  • [Show abstract] [Hide abstract] ABSTRACT: This review updates the literature on hope and oncology following a prior review of studies up until 2009. It particularly focusses on the evolution of the definition of hope in the light of the clinical experience of patients with cancer, their carers and health professionals. Hope creates meaning for patients and is an important coping mechanism. Clinicians are wary of communicating bad news because it may deprive patients of hope, but work with decision aids suggests that this communication can be managed successfully. Hope and optimism negatively correlate with anxiety and depression. Maintaining hope may result in patients with incurable cancer accepting treatments or trials with little chance of benefit. Hope also needs to be maintained by palliative care nurses who harmonize their hopes with the different degrees and constructs of hope around them. Hope interventions can be successful in increasing hope and decreasing psychological distress. More research is required into how to communicate about active anticancer treatment withdrawal and prognosis without depriving patients with cancer of hope, given how important hope is in alleviating psychological distress. The optimal intervention to increase levels of hope needs further investigation.
    No preview · Article · Mar 2012 · Current opinion in supportive and palliative care
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