Abstract
Background: Clinicians and patients find prognosis and end-of-life care discussions challenging. Misunderstanding one’s prognosis can contribute to poor decision-making and end-of-life quality of life. A question prompt list (booklet of questions patients can ask clinicians) targeting these issues may help overcome communication barriers. None exists for end-of-life discussions outside the palliative care setting. Aim: To develop/pilot a question prompt list facilitating discussion/planning of end-of-life care for oncology patients with advanced cancer from Australia and the United States and to explore acceptability, perceived benefits/challenges of using the question prompt list, suggestions for improvements and the necessity of country-specific adaptations. Design: An expert panel developed a question prompt list targeting prognosis and end-of-life issues. Australian/US semi-structured interviews and one focus group elicited feedback about the question prompt list. Transcribed data were analysed using qualitative methods. Setting/participants: Thirty-four patients with advanced cancer (15 Australian/19 US) and 13 health professionals treating such patients (7 Australian/6 US) from two Australian and one US cancer centre participated. Results: Most endorsed the entire question prompt list, though a minority queried the utility/appropriateness of some questions. Analysis identified four global themes: (1) reinforcement of known benefits of question prompt lists, (2) appraisal of content and suggestions for further developments, (3) perceived benefits and challenges in using the question prompt list and (4) contrasts in Australian/US feedback. These contrasts necessitated distinct Australian/US final versions of the question prompt list. Conclusions: Participants endorsed the question prompt list as acceptable and useful. Feedback resulted in two distinct versions of the question prompt list, accommodating differences between Australian and US approaches to end-of-life discussions, highlighting the appropriateness of tailoring communication aides to individual populations.
Highlights
Over a third of adult patients with cancer die prematurely of their disease, many experiencing sub-optimal end-of-life care. [1,2] Patients often do not discuss prognosis or end-of-life care with their doctor or family [3,4,5] though most desire such discussions [6]
QPLs have been developed for patients seeing medical oncologists, radiation oncologists or surgeons for the first time, [14,15] and patients and carers newly referred to palliative care
Guided by panel members’ knowledge, selected relevant literature was consulted and several existing QPLs were sourced from database searches of studies published since 1950 or requested from authors. [14,15,16,21,22,23,24] Where possible, items were adapted from existing QPLs if they focussed on issues relevant for the target population and purpose of the QPL including; prognosis, treatment options and decisions with non-curative intent, end-of-life issues, Advance Care Planning (ACP) and supportive or palliative care services for the patient, carer or family
Summary
Over a third of adult patients with cancer die prematurely of their disease, many experiencing sub-optimal end-of-life care. [1,2] Patients often do not discuss prognosis or end-of-life care with their doctor or family [3,4,5] though most desire such discussions [6]. [16] No QPL has been developed for patients with advanced cancer outside the palliative care setting Such patients newly face deterioration and eventual death, experiencing challenges in eliciting and adapting to information about prognosis and endof-life issues. As they remain well enough to participate in Advance Care Planning (ACP), ensuring their end-of-life needs and wishes are respected, they have the potential to benefit greatly from such a QPL. Most people who see their oncologist after treatment have questions and concerns, when there are changes in their condition Often these important questions are forgotten during a busy consultation, only to be remembered later on. Your doctor may answer some of your questions without you even asking
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