Objective
To explore the experiences of patients with advanced cancer regarding the timing of ACP.

Methods
This secondary analysis used data from the ACTION cluster-randomized clinical trial. 288 patients with advanced lung or colorectal cancer, WHO performance status 0–3, and with a minimum life expectancy of 3 months were included in this analysis.

Results
The mean time between patients’ cancer diagnosis and the first ACP conversation was 15.3 months (SD:19.4). The average duration from current cancer stage diagnosis to the first conversation was 8.9 months (SD:10.7). The timing of the conversation was perceived as “just right” by 217 (75.3 %) of the patients. Patients who perceived the timing as “too early” were more recently diagnosed with cancer (9.1 months) or with their current cancer stage (5.7 months) than those who did not. Patients perceiving the timing as “too late” had shorter estimated survival times.

Conclusion
Patients with advanced cancer may benefit from earlier ACP than what is currently typically initiated in clinical practice.

Practice implications
When initiating ACP conversations, several aspects should be considered, including patients’ gender, their socio-cultural environment, and their ability to perform daily activities, with or without limitations. ... Read more

Background: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. Objective: To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. Methods: Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves. Results: The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents' understanding of the distinction between CDS and other end-of-life care decisions, including euthanasia. Some perceived CDS as hastening death. Conclusion: The traditional view of CDS as a last resort option for a physician to relieve a patient's suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision-making and are mainly motivated by a wish to avoid suffering and exercise control at the end of life. These distinct views on CDS of patients, their relatives and healthcare providers should be reconciled in guidelines and protocols for CDS. Patient or Public Contribution: One of the authors in our team (G. H.) has experience with CDS as a relative and ensured that the patient/relative viewpoint was adequately reflected in the design and conduct of our study. In the preliminary phase of our study, G. H. adjusted the topic list so it was better adapted to the current practice of CDS. During the data analysis, G. H. read several interviews and took part in the open and critical discussion on central themes and core concepts as an important member of the author team, thereby guaranteeing the central position of the patient/relative perspective in our final research outcome. ... Read more