Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review

Abstract

Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Register of Controlled Trials) up to November 2004, with handsearching of studies, as well as inclusion of studies satisfying selection criteria reported in 2005 by the authors. The reference lists of identified studies were hand-searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patient's emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them. Differences and similarities in findings from different cultures are explored.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…There is evidence that many professionals lack confidence in undertaking ACP and tend to avoid such discussions. 13,14,35,53,67,87,88 Several studies suggest that, as there is uncertainty about which professional should undertake discussion of ACP, there is a tendency, particularly among GPs, to defer responsibility to someone else. 9,12,53,64,67,89 Evidence also suggests that, although patients tend to expect professionals to take the initiative, there is a tendency for professionals to wait for patients to open the discussion.…”

“…4 However, it is apparent that ACP remains uncommon in most areas of professional practice and that both professionals and patients tend to avoid discussions they find difficult. [5][6][7][8][9][10][11][12][13][14] Patient and family responses to ACP and its effect on EOLC outcomes remain poorly understood. This study contributes to the currently limited evidence relating to the nature and impact of ACP as well as a critical appraisal of its contribution within current EOLC policy.…”

“…175 This study supports findings from previous research that ACP remains uncommon, is often limited to documentation of a few key decisions about CPR and place of death, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. [5][6][7][8][9][10][11][12][13][14] The current model of ACP presupposes a high degree of prognostic accuracy in identifying patients entering the last year of life that is not achievable in practice. This applies particularly to patients with comorbidities and long-term conditions, 43,117,118,120 but also to those with cancer, which has often been assumed to display a more predicable trajectory.…”

Survey Shows That At Least Some Physicians Are Not Always Open Or Honest With Patients

“…41 Nonetheless, some physicians might not tell patients the full truth, to avoid upsetting them or causing them to lose hope. 22,[42][43][44] Especially in the context of lifethreatening illness, physicians might not tell patients the complete truth because of lack of training, time limitations, uncertainty about prognostic accuracy, family requests, and feelings of inadequacy about their medical interventions. 44 Physicians' sex and race or ethnicity were significantly associated with fewer than half of the communication areas we assessed (four of the nine questions for sex and two for race or ethnicity).…”

“…22,[42][43][44] Especially in the context of lifethreatening illness, physicians might not tell patients the complete truth because of lack of training, time limitations, uncertainty about prognostic accuracy, family requests, and feelings of inadequacy about their medical interventions. 44 Physicians' sex and race or ethnicity were significantly associated with fewer than half of the communication areas we assessed (four of the nine questions for sex and two for race or ethnicity). However, in all six instances, the direction of the differences suggested that women were more likely than men, and underrepresented minorities were more likely than whites or Asians, to follow charter principles.…”