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Background Patients and healthcare professionals describe patients’ readiness for advance care planning (ACP) as an indicator for whether or not to start ACP conversations. Nevertheless, it is unclear how readiness manifests and develops throughout an ACP conversation. This study explores patients’ readiness during an ACP conversation. Methods A qualitative study using content analysis of structured ACP conversations between a trained facilitator, a patient with advanced colorectal or lung cancer and a relative. Conversations were conducted in the Netherlands as part of the international ACTION trial. Analysis was supported by NVivo 11. Results Transcripts of thirteen ACP conversations were included. All patients expressed both signs of not being ready and being ready within one conversation. Signs of being ready included answering questions on a personal level or demonstrating a realistic understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP-related topic. Signs of not being ready were especially seen when future oriented topics such as ‘complications’ and ‘hope’ were discussed. Patients could more easily elaborate on less future orientated topics as ‘good life’ and ‘earlier experiences with illness’. Despite signs of not being ready patients were able to continue the conversation. Conclusion Patients do not have to be ready for all elements of ACP to be able to participate in an ACP conversation. Healthcare professionals should be aware of patients’ ability to alternate in readiness depending on the topic that is discussed.

Background Conversation guides support professionals to conduct ACP-conversations, yet insight in essential components is limited. This systematic review aims to evaluate the content, rationale and empirical evidence on the effect of ACP interventions based on conversation guides. Methods Medline, Embase, PsychINFO and CINAHL were searched from January 1, 1998 to February 23, 2018 to identify peer-reviewed articles describing or evaluating scripted ACP-conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale and empirical evidence was extracted. Results Eighty-two articles reporting on thirty-four unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP-conversations consisting of four phases: preparation, initiation, exploration and action. Exploration of patient’s perspectives on illness, living well, end-of-life (EOL) issues and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP-conversations, yet perceive them as difficult and emotional. Conclusion ACP-conversation guides address a diversity of themes regarding illness, EOL and decision making, with a focus on the exploration of patient’s perspectives and preferences. Evidence on translation of explorative information into specific treatment preferences and consequences for care as provided is limited.

Background Systematic evaluation of health care use and costs is important to identify the impact of advance care planning (ACP) programs. Such evaluations are currently scarce in Europe. Methods Our study was performed in the context of the ACTION trial, a randomized controlled study to evaluate effects of the ACTION Respecting Choices (RC) ACP intervention in patients with advanced cancer in six European countries. We applied a healthcare perspective and identified hospital care use from hospital medical records for 1 year after study inclusion. Unit prices were calculated for all six countries separately. The unit price of the ‘Respecting Choices’ ACP intervention was determined with the micro-costing method, which is based on detailed assessments of all resources used. Results Most intervention patients had one ACP conversation, one third had two. The average length was 90 minutes (standard deviation 45 minutes). Unit costs were comparable between countries for most interventions, with the exception of cancer-specific treatment. Most patients received chemotherapy, with a minority receiving surgery. Preliminary analyses showed similar patterns of health care use in both ACP and control groups: numbers of diagnostic procedures such as scans and biopsies were comparable; mean (range) length of hospital stay was 9 days (0 - 63) and 8 days (0 – 75) in intervention and control patients, respectively. Conclusion Unit costs of health care interventions were remarkably comparable between countries. The ACTION RC ACP intervention, consisting of conversations by patiens, relatives, and facilitators, did not appear to affect hospital care use. Funding EU FP7.

Background To improve advance care planning and palliative care for severely ill homeless people, insight into current practice is required. Therefore, the present study aims to describe the characteristics of people who deceased after having been homeless, the care preferred and received at the end of life, and difficulties in medical decision-making at medical respite shelters. Methods We conducted a quantitative and qualitative retrospective record review at two Dutch medical respite shelters. Included were the medical and nursing records of 61 homeless clients who were known to be deceased between 2009 and 2016 and had resided in one of both shelters for at least one night in the three months before death. Results The large majority of patients had a combination of somatic (98%), psychiatric (85%) and substance use problems (93%). Discussions about imminent death were reported for 75% of the patients for whom it was recognized. Twenty-six percent of records provided information about patients’ preferred place of death, which mostly was the shelter. For 36% of patients, hospital admissions had been considered undesirable by their clinician(s). In the three months before death, 75% of patients had at least one such admission. Documented difficulties in medical decision-making mainly concerned impaired decisional capacity of patients, language barriers, and fragmentation and discontinuity of care. Conclusion At the end of life, homeless people suffer from multiple health-related problems that require specific expertise. They experience multiple, often undesired hospital admissions. This could be avoided by more comprehensive collaboration between psychosocial, medical, and palliative care.

Background Stability of patients’ treatment preferences has important implications for advance care planning, among which its timing. We therefore examined the stability of preferences and its predictors of patients with advanced cancer. Methods In this cohort, 104 patients with metastatic cancer and an oncologist estimated life-expectancy of ≤ six months participated in interviews following clinical visits in which patients’ recent scan results were discussed. Interviews were repeated in three monthly follow-ups. At baseline, patients’ age, education, sex, race, marital status, insurance status, and type of cancer were documented. At each assessment, patients reported their treatment preferences (i.e. trade-offs of life-prolonging versus comfort care), quality of life, and illness understanding. Results At baseline (n=104), 55 (53%) patients preferred life-prolonging care, 49 (47%) preferred comfort care. Patients were followed for one (n=104), two (n=74), or three months (n=44). Between baseline and month I, 84 patients (81%) had stable treatment preferences. During follow-up, preferences of 71 patients (68%) remained stable (equally divided between a consistent preference for life-prolonging and comfort care). Treatment preferences of 33 (32%) patients changed at least once during follow-up. Patients’ preferences at baseline strongly predicted preferences at month I (OR=17.8; CI=6.7–47.3; p Conclusion Two-thirds of patients with advanced cancer had stable preferences regarding life-prolonging versus comfort care. Changes of preferences were often unpredictable. Our findings suggest potential benefits of ongoing communication about preferences, including advance care planning.

Background Despite universal recognition of advance care planning’s (ACP) importance, collectivism spirit in Asia may impact its uptake. Aims To gain insight into health care professionals’ (HCP) knowledge of, attitude towards, and experience with ACP in Asia. Methods We systematically searched four electronic databases for quantitative and qualitative studies on ACP in East and South East Asian countries. Anticipating unfamiliarity with ACP, we operationalized ACP broadly, covering discussions about future medical care and documentation thereof. Results Among 3,358 identified studies, 41 were eligible; 36 applied quantitative and 5 applied qualitative design. Most studies were conducted in high-income countries: Japan (16), South Korea (13), Singapore (4), Hong Kong (4), and Taiwan (3). While twenty-nine studies addressed documentation of preferences, only six addressed ACP and end-of-life discussion respectively. Ten studies addressing knowledge indicated moderate awareness of ACP. Thirty studies on attitudes showed that although many HCPs considered ACP and involving patient and family in its process important, some found initiating ACP difficult. This hesitation was partly due to fear of conflicts with family members and the legal consequences. Twenty studies on experiences indicated that actual engagement of HCP in ACP is limited, too late, and mostly only involved family without patients. Conclusion Although being considered potentially important, ACP did not occur often. HCPs seem to be reluctant to engage in ACP. The role of family in ACP is crucial in Asia. However, evidence was highly heterogeneous and limited to a few high-income countries, which limits its generalizability to other Asian countries.

Background Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making. Objective To investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives’ preparation for decision-making and on their levels of anxiety and depression. Design: Cluster randomised controlled trial. Setting: Residential care homes in the Netherlands. Subjects: Bereaved relatives of care home residents and community-dwelling frail older patients. Methods We randomised 16 residential care homes to either the intervention group, where participants (frail older patients) were offered facilitated ACP, or the control group (n=201), where they received ‘care as usual’. If participants died, we approached relatives for an interview. We asked relatives who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, we compared relatives’ preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454). Results We conducted interviews with 39/51 (76%) bereaved relatives (intervention group: n=20, control group: n=19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patient’s preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to five of 11 relatives in the control group (p=.03). Relatives’ levels of anxiety and depression did not differ significantly between groups. Conclusions In our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression.

Background Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. This hinders the development of ACP programmes and the evaluation of ACP’s effectiveness. Methods We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application in healthcare, policy and research. Results Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68–100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual’s health condition worsens; and, using trained non-physician facilitators to support the ACP process. A list of outcome measures is also presented to enable the pooling and comparison of results of ACP studies. Conclusion This large international Delphi panel was able to come to a consensus on an ACP definition and recommendations. This represents an important first step in providing clarity with a view to further policy and research in this field. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Background Advance Care Planning aims at improving alignment of care with patients’ preferences. This may affect costs of medical care. Aim To determine the costs of an Advance Care Planning programme and its effects on the costs of medical care and on concordance of care with patients’ preferences. Design/settings/participants In a cluster randomised trial, 16 residential care homes were randomly allocated to the intervention group, where frail, older participants were offered facilitated Advance Care Planning conversations or to the control group. We calculated variable costs of Advance Care Planning per participant including personnel and travel costs of facilitators. Furthermore, we assessed participants’ healthcare use during 12 months applying a broad perspective (including medical care, inpatient days in residential care homes, home care) and calculated costs of care per participant. Finally, we investigated whether treatment goals were in accordance with preferences. Analyses were conducted for 97 participants per group. Trial registration number: NTR4454. Results Average variable Advance Care Planning costs were €76 per participant. The average costs of medical care were not significantly different between the intervention and control group (€2360 vs €2235, respectively, p=0.36). Costs of inpatient days in residential care homes (€41,551 vs €46,533) and of home care (€14,091 vs €17,361) were not significantly different either. Concordance of care with preferences could not be assessed since treatment goals were often not recorded. Conclusions The costs of an Advance Care Planning programme were limited. Advance Care Planning did not significantly affect the costs of medical care for frail older adults.

Background Advance Care Planning (ACP) enables individuals together with their relatives and health care professionals to discover, discuss and document their values, preferences and goals for care. Objective To evaluate the involvement of pediatricians taking care of children with life-limiting conditions in ACP. Methods All pediatricians from six Dutch pediatric hospitals completed a survey about experiences with ACP in their most recent case of a deceased child. Results Of the 207 participating pediatricians (response 36%), 168 completed the questionnaire (81%), of which 86% described a case. Of these children, 53% died before the age of 5 years. ACP conversations always took place with parents, mostly about diagnosis, life expectancy, goals of care, fears and worries and code status. In 23%, ACP conversations occurred with children (age: range 2.2–17.3 years, median 11.5 years), discussing mostly joy of life, hope, diagnosis and fears and worries. 94% of pediatricians were satisfied with their conversations skills. The occurrence rate of ACP conversations was indicated as insufficient by 49%. Pediatricians stated in 60% that ACP conversations have to result in a documented code status. 37% said ACP conversations intend mainly to provide information to families. Reported barriers to ACP conversations were mostly parent-related, while facilitators concerned continuity of care and a multidisciplinary approach. Conclusion Pediatricians reported to have ACP conversations mainly with parents with a focus on medical issues. Insight in the perspective of the child is limited. Education on the holistic approach of ACP and on involvement of children in ACP is needed.

Background Previous studies showed that family carers (FCs) who engaged in formal ACP had fewer adverse outcomes in wellbeing compared with FCs who did not. The ACTION trial is the first multicentre randomized controlled trial of ACP in six European countries. This study will report on the effect of ACP on the wellbeing of bereaved FCs. Methods 451 questionnaires were sent to bereaved FCs 3 months after the patient participating in the trial had died; 163 were returned (response rate: 36.1%; N control= 93, N intervention= 70). Wellbeing was measured with the Hospital Anxiety and Depression Scale (HADS) and Impact Event Scale (IES). Results No significant differences were found in wellbeing of FCs between groups. The mean scores for the HADS show no significant differences between groups for anxiety (mean score control 7,09 vs. mean score intervention 8,29) and depression (mean score control 6,72 vs. mean score intervention 7,17). No significant differences are found between groups in the mean scores for the IES. Intrusion had a mean score of 21,27 for control vs. 21,38 for intervention; Avoidance had a mean score of 10,34 for control vs. 12,72 for intervention. Conclusion Despite previous evidence about improved outcomes for wellbeing in FCs in ACP programs, our ACP intervention did not show differences between groups. Possibly the non-response or cultural discrepancies between the different countries have a part in this. More research is needed to explain what mechanisms are present. This study is supported by a grant from the FWO (nr. G034717N).