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Purpose: Clinicians’ fears of taking away patients’ hope is one of the barriers to advance care planning (ACP). Barriers to ACP were extensively studied, however, research on how advance care planning potentially supports hope is scarce. The concept of hope in the terminally ill is context-specific and difficult to operationalize. This study aimed to explore aspects of hope supported by structured ACP conversations.Methods: In an international qualitative study using in-depth interviews we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomized control ACTION trial. An established sensitizing concept of hope in terminal illness (with several themes such as facilitating control, interpersonal relationships etc.) served as a point of reference in identifying attributes of hope supported by ACP conversations. A thematic analysis was performed on segments of text relevant to answer the research question.Results: Twenty patients with advanced lung or colorectal cancer and 17 personal representatives from Italy, the Netherlands, Slovenia and the United Kingdom were interviewed after participation in structured ACP conversations. Three potential mechanisms through which hope may be supported were recognized for patients and their PRs: (I) achieving a greater sense of empowerment for the future; (II) experiencing participation in ACP conversations as an act of mutual care; (III) strengthening shared confidence and partnership. In addition, our results suggest that participants’ hopes for cure or longevity persist after ACP conversations. Conclusion: We identified various potentially hope supporting mechanisms of ACP conversations cultivating agency, mutuality and interdependency between people involved.

Advance care planning (ACP) is een vorm van gespreksvoering die patienten helpt doelen en voorkeuren te verhelderen en ze te bespreken met naasten en zorgverleners. De vrees om zo’n gesprek te beginnen ‘omdat de patient er niet klaar voor is’, is ongegrond: ook mensen die zich nog niet klaar voelen voor een ACP-gesprek, willen wel praten over onderdelen daarvan en zijn vaak blij met dat gesprek. ACP vergt echter wel enige voorbereiding en ervaring van de betrokken zorgverlener.

Purpose Patients’ readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals’ uncertainty about patients’ readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients’ readiness is expressed and develops throughout an ACP conversation. Methods A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. Results All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an 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 topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. Conclusion Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

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 The ACTION trial evaluates the effect of the ACTION Respecting Choices (RC) advance care planning (ACP) intervention in patients with advanced cancer in six European countries. Systematic evaluations of such ACP conversations by facilitators are currently lacking. We developed and applied a 10-item facilitator-reported instrument. Methods The instrument asked about the facilitator’s perception of the patient’s and the personal representative’s (PR) reactions to and engagement with the intervention and satisfaction with the intervention. Results From March 2016 until February 2018, 272 conversations took place. Of these, 265 were evaluated. According to the facilitators, 32% of the patients did not appear to understand all questions asked (29% understood most, 3% understood about half), and 36% were not able to answer all questions (31% answered most, 4% answered about half, 1% answered fewer). Furthermore, 38% of the patients and 27% of the PRs did not appear to perceive all questions as OK (patients: 33% perceived most as OK, 3% about half, 2% fewer; PR: 24% most, 3% about half). Facilitator perception of patient satisfaction, PR satisfaction and their own satisfaction with ACP conversations ranged 40–54% for ‘very much’, 41–49% for ‘quite a bit’ and 5–11% for ‘a little’. Conclusion To our knowledge, this is the first clinical trial to systematically evaluate the feasibility of ACP conversations from the facilitator perspective. Parts of the ACP intervention appeared to be challenging for patients and PRs. These results, together with qualitative data, will help understand the outcomes of the ACTION trial. Funding EU’s FP7.

Background Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods A content analysis and descriptive statistics were conducted to describe the content of the completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results In total, 33% of 439 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 9.6% (United Kingdom), 21% (Denmark), 27.6% (Belgium), 43.8% (the Netherlands), 61.3% (Italy) and 64.3% (Slovenia). Content analysis showed that ‘maintaining normal life’ and ‘experiencing meaningful relationships’ were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred ‘home’ as final place of care. Conclusions My Preferences forms provide some insights into patients’ perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients.

Background The nurse-led chronic obstructive pulmonary disease-Guidance Research on Illness Perception (COPD-GRIP) intervention was developed to incorporate illness perceptions into COPD care with the intention to improve the health-related quality of life of COPD patients. This individualized intervention focuses on identifying, discussing and evaluating illness perceptions and consists of three consultations with a practice nurse. The aim of this study is to explore patients’ experiences regarding the COPD-GRIP intervention. Methods A qualitative interview study nested in a cluster randomized trial in primary care. One-time semi-structured individual interviews with COPD patients who were guided with the COPD-GRIP intervention were conducted. During data collection, the constant comparative approach was used. All interviews were recorded, transcribed, anonymized and uploaded to MAXQDA. To identify themes, the transcripts were independently coded by two researchers. Results Sixteen patients were interviewed. All patients were positive and experienced an additional value of the COPD-GRIP intervention in different areas. Three main themes were identified and show that taking part in this intervention made the patients feel ‘listened to and acknowledged’, improved their awareness of the disease and its management and helped them to make lifestyle changes. Some patients suggested that the individualized care plan could be improved and to start the intervention immediately after being informed of the COPD diagnosis. All patients recommended this intervention. Conclusion The results of this study indicate that patients acknowledge that the COPD-GRIP intervention is a useful and promising tool for providing individualized COPD care.

Background The major challenges in Chronic Obstructive Pulmonary Disease (COPD) care are guiding a patient in daily living with the consequences of the disease, reducing the impact of symptoms and improving Health Related Quality of Life (HRQoL). The new nurse-led COPD-Guidance, Research on an Illness Perception (COPD-GRIP) intervention translates the evidence concerning illness perceptions and Health Related Quality of Life (HRQoL) into a practice nurse intervention. The aim is to explore the nurses' experiences with applying the new COPD-GRIP intervention. Method An explanatory mixed-method study nested in a cluster randomized trial in primary care was conducted. Pre-intervention questionnaires were sent to all participating nurses ( N =24) to identify expectations. Post-intervention questionnaires identified experiences after applying the intervention followed by two focus groups to further extend exploration of findings. Questionnaires were analyzed by descriptive analyses. To identify themes the audio-taped and transcribed focus groups were independently coded by two researchers. Results The nurses described the intervention as a useful, structured and individualized tool to guide COPD patients in living with the consequences of COPD. Applying the intervention took less time than the nurses initially expected. The intervention enables to provide patient-centered care and to address patient needs. Barriers were encountered, especially in patients with a lower social economic status, in patients with a lower health literacy and in patients with other cultural backgrounds than the Dutch background. Conclusion Nurses perceived the COPD-GRIP intervention as a feasible, individualized tool. According to the nurses, the intervention is a valuable improvement in the care for COPD patients.

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients’ values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life.Methods/Design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients’ quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients’ preferences, patients’ evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators.Discussion: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making.Trial registration: International Standard Randomised Controlled Trial Number: ISRCTN63110516 . Date of registration: 10/3/2014.

Introduction: Improving Health Related Quality of Life (HRQoL) is one of the main goals in the COPD. The nurse-led COPD-Guidance, Research on an Illness Perception (COPD-GRIP) intervention is developed to incorporate illness perceptions into the care for COPD patients to improve their HRQoL. This individualized intervention, which identifies illness perceptions with theBrief Illness Perception Questionnaire, consists of three consultations with a practice nurse (PN). Aim: The aim is to identify and to clarify the experiences of the patients with the COPD-GRIP intervention. Method: A qualitative study, nested in a cluster randomized trial in primary care, was carried out. The interviews, which were audio-taped, were performed with COPD patients who were guided with the COPD-GRIP intervention. During data collection the constant comparative approach was used. To identify themes, the transcribed interviews were independently coded by two researchers. Results: 16 patients were interviewed. The patients experienced an additional value of the intervention in areas such as disease knowledge, awareness and cooperation with the PN. According to the patients, PN9s need expertise in COPD, give encouragement, be trustworthy and should give personal attention. In addition, a patient should be open and honest as well. The experiences with the care plan, the questionnaire, the duration and the frequency of the consultations were positive. Nevertheless, some patients gave an advise to improve those elements. Conclusion: The results indicate that the COPD-GRIP intervention is an useful and promising tool. Although some aspect will need improvements, the patients were satisfied and do recommend the intervention.

Background: The new nurse-led COPD-Guidance, Research on an Illness Perception (COPD-GRIP) intervention translates the evidence concerning illness perceptions and Health Related Quality of Life (HRQoL) into a practical guide to guide COPD patients and to improve their HRQoL. Within three consultations illness perceptions are being assessed, discussed and linked to behaviour. The aim: is to identify barriers and facilitators to improve the COPD-GRIP intervention and its implementation in clinical practice. Method: An explanatory mixed-method study nested in a cluster randomized trial in primary care was conducted. Pre-questionnaires were sent to all participating practice nurses (PN)(N=24).Post-questionnaires identified experiences after applying the intervention. A more extended exploration was obtained by two focus groups. Questionnaires were analyzed by descriptive analyses. To identify themes the audio-taped and transcribed focus groups were independently coded by two researchers. Results: The PN9s described the intervention as an useful, structured and individualized tool. It enables them to enhance disease knowledge, understanding and awareness in COPD patients. Barriers were seen in applying the intervention in patients with a different cultural background(60%), a lower social economic status(60%), multimorbidity(60%) and in patients who do not visit the practice regularly(40%). It appeared to be difficult to accommodate three consultations for each individual patient within six weeks within the context of daily practice. Conclusion: practice nurses perceived the COPD-GRIP intervention as a feasible, individualized tool to guide COPD patients in living with the consequences of COPD.

BackgroundAdvance care planning (ACP) supports patients in identifying and documenting their preferences and timely discussing them with their relatives and healthcare professionals (HCPs). Since the British Thoracic Society encourages ACP in chronic respiratory disease, the objective was to systematically review ACP practice in chronic respiratory disease, attitudes of patients and HCPs and barriers and facilitators related to engagement in ACP.MethodsWe systematically searched 12 electronic databases for empirical studies on ACP in adults with chronic respiratory diseases. Identified studies underwent full review and data extraction.ResultsOf 2509 studies, 21 were eligible: 10 were quantitative studies. Although a majority of patients was interested in engaging in ACP, ACP was rarely carried out. Many HCPs acknowledged the importance of ACP but were hesitant to initiate it. Barriers to engagement in ACP were the complex disease course of patients with chronic respiratory diseases, HCPs’ concern of taking away patients’ hopes and lack of continuity of care. The identification of trigger points and training of HCPs on how to communicate sensitive topics were identified as facilitators to engagement in ACP.ConclusionsIn conclusion, ACP is surprisingly uncommon in chronic respiratory disease, possibly due to the complex disease course of chronic respiratory diseases and ambivalence of both patients and HCPs to engage in ACP. Providing patients with information about their disease can help meeting their needs. Additionally, support of HCPs through identification of trigger points, training and system-related changes can facilitate engagement in ACP.Systematic review registration numberCRD42016039787.