Trained facilitators' experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial.

BACKGROUND: In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation. METHODS: A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes. RESULTS: Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script. CONCLUSIONS: Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients' preferences while staying attuned to patients' needs. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number registry 63110516 ( ISRCTN63110516 ) per 10/3/2014.

Careful monitoring of the use of sedative drugs at the end of life: the role of Epidemiology. The ITAELD study.

BACKGROUND: Sedative drugs are often used at the end of life for different clinical indications, and sometimes sedation is not interrupted until the patient dies. The aim of this study was to estimate the prevalence of patients who died while deeply sedated in Italy in 2007. METHODS: Cross-sectional survey which asked physicians about the last death that occurred among their assisted patients during the last year, and about their attitudes towards end-of-life decisions. All general practitioners (N=5,710) and a random sample of hospital physicians (N=8,950) from 14 Italian provinces were invited to participate. RESULTS: The response rate was 20%. Among 1855 reported deaths, 1466 (79.2%) were classified by physicians as expected or non-sudden; 18.2% of these expected or non-sudden deaths occurred while the patient was deeply sedated. GPs were the least likely to report deep sedation, whereas anesthetists were the most likely. In 8% of cases, sedation occurred along with an abrupt increase in the dosage of opioids during the last day of life, reaching a dosage considered higher than necessary by the doctor. No association with positive attitudes of the physician towards physician assisted death was found, whereas reporting sedation was associated with a positive attitude towards respecting the choice of relatives to forgo life-sustaining treatment in the case of an incompetent patient. CONCLUSION: Our study confirms the high prevalence of patients in Italy who die while being deeply sedated and shows that different practices may converge under the same label. Careful descriptive language is needed.

Continuous deep sedation in home palliative care units: case studies in the Florence area in 2000 and in 2003-2004.

AIM: The aim of this paper was to describe the frequency and the characteristics of continuous deep sedation in terminally ill patients. METHODS: All patients who died in home palliative care units in the Florence area between March 1-December 31, 2000 and July 1, 2003-June 30, 2004 were prospectively analysed with regard to social, demographic, and clinical characteristics. RESULTS: The data presented refer to 1075 patients (331 in 2000 and 744 in 2003-2004). Continuous deep sedation was applied in 14.2% and in 12% of patients, respectively. At baseline, patients who were sedated during the final stages of their life were more likely to be younger in age, to have poorer quality of life and better performance status. Such characteristics did not differ between the two periods. Hydration was not performed in 65% of all patients who finally received sedation in the period 2003-2004 versus 33% in those who did in 2000. In 2003-2004, the decision to use sedation was discussed with patients in 39% of those who were sedated. In 2003-2004, we noticed an increase in the use of benzodiazepines for continuous deep sedation from 43% to 87%. The increase in opioid average dosage from the onset of sedation until the last 24 h of their life was about seven-fold in 2000 and almost twice that amount in 2003-2004 in those patients who were not undergoing treatment with opioids when sedation started. CONCLUSION: The monitoring of end-of-life decision making and of medical practices involved in continuous deep sedation contributes to an enhancement in the quality of caring for terminally ill patients.