Dances With Denial: Have Medical Oncology Outpatients Conveyed Their End-of-Life Wishes and Do They Want To?

Abstract

This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center. Consenting participants completed a pen-and-paper survey assessing participation in ACP, preferences for conveying EOL wishes, timing of EOL discussions, and EOL issues they want to be asked about. A total of 203 patients returned the survey (47% of eligible). EOL discussions occurred more frequently with support persons (47%) than with doctors (7%). Only 14% had recorded their wishes, and 45% had appointed an enduring guardian. Those who perceived their cancer as incurable were more likely to have participated in ACP. If facing EOL, patients indicated that they would want family involved in discussions (85%), to be able to write down EOL wishes (82%), and to appoint enduring guardians (91%). Many (45%) preferred the first discussion to happen when their disease became incurable. Slightly less than one-third thought discussions regarding EOL should be patient-initiated. Most agreed doctors should ask about preferred decision-making involvement (92%), how important it is that pain is managed well (95%), and how important it is to remain conscious (82%). Fewer (55%) wanted to be asked about the importance of care extending life. Many patients would like to have discussions regarding EOL care with their doctor and involve their support persons in this process. Only a small percentage of respondents had discussed EOL care with their doctors, recorded their wishes, or appointed an enduring guardian. The first step requires clinicians to ask whether an individual patient wishes to discuss EOL issues, in what format, and at what level of detail.

Perceptions of optimal end‐of‐life care in hospitals: A cross‐sectional study of nurses in three locations

“…Clinical practice guidelines in end‐of‐life care and national end‐of‐life care standards for hospitals were also reviewed and included as potential items in the initial questionnaire (Australian Commission on Safety & Quality in Health Care, 2015; Clayton, Hancock, Butow, Tattersall, & Currow, 2007; National Institute for Clinical Excellence, 2015). Furthermore, items from questionnaires that had been developed and administered previously in the literature were also considered for inclusion (Shepherd, Waller, Sanson‐Fisher, Clark, & Ball, 2018; Waller, Douglas, et al, 2018; Waller, Sanson‐Fisher, Nair, & Evans, 2019, 2020; Waller, Sanson‐Fisher, Sanson‐Fisher, Ries, & Bryant, 2018). The questionnaire was then circulated to eight experienced nurses as well as a panel of experts in palliative care, nursing, behavioural science, geriatric medicine, and oncology.…”