Patients with terminal illness and their healthcare providers preferred a dosed and gradual process of truth-telling
Dr R Deschepper, Vrije Universiteit Brussel, Brussels, Belgium;;
What are the attitudes of patients with terminal illness and their healthcare providers about truth-telling? What are perceived barriers to full information exchange?
17 patients >18 years of age who had advanced illness (cancer), life expectancy of about 3 months, and had been duly informed of their diagnosis and prognosis; 8 relatives of patients; and 29 healthcare providers (14 general practitioners [GPs], 10 nurses, 4 specialists, and 1 psychologist).
Patients (and their relatives) participated in individual interviews; 11 second interviews were held. Healthcare providers participated in 3 focus groups, which focused on GP–nurse relations, GP–specialist relations, and multidisciplinary cooperation. Interviews and focus groups were audiotaped and transcribed. Analysis was informed by grounded theory and included an iterative process of coding emerging themes and constant comparison.
Attitudes of patients towards truth-telling. Patient preferences varied about when and how they wanted to be informed. Most patients preferred information to be provided gradually, at a slow pace, and tailored to their emotional responses. Many could not tolerate bad news and detailed information. Impending death was the most threatening topic. A few patients wanted all available information about their medical condition and prognosis, but even these patients did not discuss expected conditions of death and end-of-life decisions. Some patients accepted that physicians might withhold or defer information “in the interest of the patient.” All patients wanted their providers to be honest, but some expressed ambivalence about wanting to know “the whole truth.” “… I know I am going to die. But being told it will be in two weeks’ time is a different matter. I know I may die any day, but I’d rather not be told it’s going to be tomorrow…Still, I like to know the truth. It’s a bit paradoxical, isn’t it, wanting one thing and the other?” Some patients not only wanted truth but also to be given some hope.
Attitudes of healthcare providers. The central theme of the focus groups was that truth-telling was a “dosed and gradual” process rather than a single act (ie, disclosing the complete truth in a single session, with no preparation or follow-up). Most providers allowed patients to set the pace of truth-telling, whereas others wanted to set the pace themselves. While they all agreed that lying to patients was unacceptable, they also felt that revealing all possible complications would put too much of a burden on patients.
Barriers to communication. Perceived barriers to truth-telling identified by both patients and providers were physicians’ lack of time and the limits of medical knowledge in terms of predicting time and circumstances of death. Providers also felt that the technicality of some information was beyond the capacity of some patients’ understanding.
Patients with terminal illness and their healthcare providers preferred a dosed and gradual process of truth-telling. Barriers to truth-telling were physicians’ lack of time, limitations of medical knowledge for predicting time of death, and patients’ capacity to understand technical information.
Deschepper R, Bernheim JL, Stichele RV, et al. Truth-telling at the end of life: a pilot study on the perspective of patients and professional caregivers. Patient Educ Couns 2008;71:52–6.
Source of funding: Belgian Science Policy and Research Council of Vrije Universiteit Brussel.
The focus of the timely study by Deschepper et al is on truth-telling at the end of life. The main findings highlight the challenges faced by patients and their professional care givers, particularly when ambivalence, uncertainty, and contradictory attitudes arise. Such difficulties are common and can be expected when people face the reality of death. A substantial body of literature suggests ways to manage the boundaries of curative, palliative, and terminal care.1 2
The study by Deschepper et al identifies a paradox at the heart of current end-of-life care policies. In the UK, for example, the End of Life Care Strategy3 advocates advance care planning through several initiatives based on patient choice and prioritising care. As with other European and international proposals, the underlying principles of improving care not only assume a willingness to engage in discussions about complex end-of-life choices but also imply that contemporary patient–care-giver relationships and wider social and cultural interactions are conducive to such an approach. Drought et al4 suggest that the notion of patient choice often requires patients to directly confront dying and document specific preferences for medical treatment. Most patients, however, want to express choices in more general terms, such as their broad hopes for care (usually in addition to, or instead of, specific preferences) and to allow others to share in their decision making. Deschepper et al allude to this issue when they observe that “…patients do not seem prepared for autonomy and care givers’ new openness” and suggest that there is a need for care givers to be more actively involved in decision making. Further exploration of this aspect of their study would be useful, especially in light of evidence that care givers often fail to distinguish between a patient’s need for information, hopes for care, and willingness to take responsibility in decision making.5