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Western cultural practices and values have largely shaped advance care planning (ACP) policies across the world. Low uptake of ACP among ethnic minority groups in Western countries has been interpreted with reference to cultural differences. This paper adopts a life-history approach to explore attitudes towards ACP among older, first-generation Dutch-Australian and Italian-Australian migrants. Thirty people participated in extended ethnographic interviews (N = 17) and group discussions (N = 13) during 2012. Transcripts were thematically analyzed and interpreted using a Foucauldian perspective on knowledge and power. Migration experiences, ongoing contact with the native country and participation in migrant community support networks influenced attitudes towards ACP. Dutch participants framed ACP discussions with reference to euthanasia, and adopted a more individualist approach to medical decision-making. Italian participants often spoke of familial roles and emphasized a family-based decision making style. The importance of migrant identity has been neglected in previous discussions of cultural factors influencing ACP uptake among ethnic minority groups. The unique migration experience should be considered alongside culturally appropriate approaches to decision-making, in order to ensure equitable access to ACP among migrant groups., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study is to examine why patients are hospitalised in the last stage of life. Methods: Our study was conducted in a large Dutch teaching hospital. We conducted a retrospective chart review of patients aged ≥18 years who died of cancer either during hospitalisation or after discharge to receive terminal care outside the hospital. We collected data about the characteristics of these hospitalisations and indicators of advance care planning. Results: Of the 264 deceased patients, 56% had died in the hospital and 44% after hospital discharge. Of all patients, 80% had been admitted to the hospital because of symptom distress. Dyspnoea (39%) and pain (33%) were the most common symptoms. Most patients underwent diagnostic procedures (laboratory tests [97%] and radiology tests [91%]) and received medical treatment (analgesics [71%] and antibiotics [55%]) during their hospitalisation. A 'Do‐Not‐Resuscitate' code had been recorded before admission in 42% of the patients and in an additional 52% during admission. Conclusion: Our study shows that patients with cancer in the last stage of life were mainly admitted to the hospital because of symptom distress. Some hospitalisations and in‐hospitals deaths may be avoided by more timely recognition of patients' impending death and start of advance care planning. [ABSTRACT FROM AUTHOR]

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster‐randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post‐ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to study (1) the relationship between patient‐reported symptom burden and information needs in hospital‐based palliative care and (2) differences in patient‐reported needs during the disease trajectory. Methods: Observational study: patient‐reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0–10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care‐related items (35 topics, 40 questions). Non‐parametric tests assessed associations. Results: Conversation guides were used by 266 patients. Median age was 65 years (IQ‐range, 57–72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1–38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom‐directed phase needed more information about hospice care. Conclusion: Symptom burden and information needs are related. Patients often also want information about non‐prioritised symptoms and other palliative care domains. Tailored information‐provision includes inviting patients to also discuss topics they did not consider themselves. [ABSTRACT FROM AUTHOR]

Aims and objectives: To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations. Background: Awareness about perspectives of people with dementia should decrease stigmatisation and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning. Design: Qualitative descriptive design. Methods: We performed in‐depth interviews with 18 community‐dwelling persons with dementia in South‐Limburg, the Netherlands. Transcripts were analysed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines. Results: Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings. Conclusions: Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life. Relevance to clinical practice: This study demonstrates capability and willingness of people with dementia to discuss the future and end‐of‐life topics. Public and professional awareness may facilitate opportunities for informal end‐of‐life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families. [ABSTRACT FROM AUTHOR]

Background: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. Design and methods: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. Setting and patients: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. Results: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). Conclusion: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories. [ABSTRACT FROM AUTHOR]

Background: Advance Care Planning (ACP) enables physicians to align healthcare with patients' wishes, reduces burdensome life-prolonging medical interventions, and potentially improves the quality of life of patients in the last phase of life. However, little objective information is available about the extent to which structured ACP conversations are held in general practice. Our aim was to examine the documentation of ACP for patients with cancer, organ failure and multimorbidity in medical records (as a proxy for ACP application) in Dutch general practice. Methods: We chose a retrospective medical record study design in seven primary care facilities. Medical records of 119 patients who died non-suddenly (55 cancer, 28 organ failure and 36 multimorbidity) were analysed. Other variables were: general characteristics, data on ACP documentation, correspondence between medical specialist and general practitioner (GP), and healthcare utilization in the last 2 years of life. Results: In 65% of the records, one or more ACP items were registered by the GP. Most often documented were aspects regarding euthanasia (35%), the preferred place of care and death (29%) and concerns and hopes towards the future (29%). Median timing of the first ACP conversation was 126 days before death (inter-quartile range (IQR) 30–316). ACP was more often documented in patients with cancer (84%) than in those with organ failure (57%) or multimorbidity (42%) (p = 0.000). Patients with cancer had the most frequent (median 3 times, IQR 2–5) and extensive (median 5 items, IQR 2–7) ACP consultations. Conclusion: Documentation of ACP items in medical records by GPs is present, however limited, especially in patients with multimorbidity or organ failure. We recommend more attention for – and documentation of – ACP in daily practice, in order to start anticipatory conversations in time and address the needs of all people living with advanced conditions in primary care. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question (" Would I be surprised if this patient were to die within the next 12 months?") is widely used to identify palliative patients, though with low predictive value. To improve timely identification of palliative care needs, we propose an additional Surprise Question (" Would I be surprised if this patient is still alive after 12 months?") if the original Surprise Question is answered with "no." The combination of the two questions is called the Double Surprise Question. Aim: To examine the prognostic accuracy of the Double Surprise Question in outpatients with cancer. Design: A prospective study. Participants: Twelve medical oncologists completed the Double Surprise Question for 379 patients. Results: In group 1 (original Surprise Question "yes": surprised if dead) 92.1% (176/191) of the patients were still alive after 1 year, in group 2a (original and additional Surprise Question "no": not surprised if dead and not surprised if alive) 60.0% (63/105), and in group 2b (original Surprise Question "no," additional Surprise Question "yes": surprised if alive) 26.5% (22/83) (p < 0.0001). The positive predictive value increased by using the Double Surprise Question; 74% (61/83) vs 55% (103/188). Anticipatory palliative care provision and Advance Care Planning items were most often documented in group 2b. Conclusions: The Double Surprise Question is a promising tool to more accurately identify outpatients with cancer at risk of dying within 1 year, and therefore, those in need of palliative care. Studies should reveal whether the implementation of the Double Surprise Question leads to more timely palliative care. [ABSTRACT FROM AUTHOR]

In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP. [ABSTRACT FROM AUTHOR]

Background: Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. Aim: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. Methods: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. Results: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible. Conclusions: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy. [ABSTRACT FROM AUTHOR]

Background: Multiple factors contribute to mortality after ICU, but it is unclear how the predictive value of these factors changes during ICU admission. We aimed to compare the changing performance over time of the acute illness component, antecedent patient characteristics, and ICU length of stay (LOS) in predicting 1-year mortality.Methods: In this retrospective observational cohort study, the discriminative value of four generalized mixed-effects models was compared for 1-year and hospital mortality. Among patients with increasing ICU LOS, the models included (a) acute illness factors and antecedent patient characteristics combined, (b) acute component only, (c) antecedent patient characteristics only, and (d) ICU LOS. For each analysis, discrimination was measured by area under the receiver operating characteristics curve (AUC), calculated using the bootstrap method. Statistical significance between the models was assessed using the DeLong method (p value < 0.05).Results: In 400,248 ICU patients observed, hospital mortality was 11.8% and 1-year mortality 21.8%. At ICU admission, the combined model predicted 1-year mortality with an AUC of 0.84 (95% CI 0.84-0.84). When analyzed separately, the acute component progressively lost predictive power. From an ICU admission of at least 3 days, antecedent characteristics significantly exceeded the predictive value of the acute component for 1-year mortality, AUC 0.68 (95% CI 0.68-0.69) versus 0.67 (95% CI 0.67-0.68) (p value < 0.001). For hospital mortality, antecedent characteristics outperformed the acute component from a LOS of at least 7 days, comprising 7.8% of patients and accounting for 52.4% of all bed days. ICU LOS predicted 1-year mortality with an AUC of 0.52 (95% CI 0.51-0.53) and hospital mortality with an AUC of 0.54 (95% CI 0.53-0.55) for patients with a LOS of at least 7 days.Conclusions: Comparing the predictive value of factors influencing 1-year mortality for patients with increasing ICU LOS, antecedent patient characteristics are more predictive than the acute component for patients with an ICU LOS of at least 3 days. For hospital mortality, antecedent patient characteristics outperform the acute component for patients with an ICU LOS of at least 7 days. After the first week of ICU admission, LOS itself is not predictive of hospital nor 1-year mortality. [ABSTRACT FROM AUTHOR]

Objectives To explore changes in care goals and treatment orders around the occurrence of pneumonia and intake problems, and whether hospitalization is in line with earlier agreed-upon do-not-hospitalize orders. Design Data were collected as part of the Dutch End of Life in Dementia study (2007-2011), a longitudinal observational study with up to 3.5 years of follow-up. Setting Long-term care facilities (N = 28) in the Netherlands. Participants Newly admitted nursing home patients (N = 372) in various stages of dementia. Measurements Semiannually, physicians completed questionnaires about care goals and treatment orders, and they continuously registered episodes of pneumonia, intake problems and hospitalization. We report on changes in care goals and treatment orders during follow-up in relation to the developing of pneumonia and intake problems and on hospitalization and reasons for hospitalization. Results The proportion of patients with palliative care goals and do-not-treat orders rose during follow-up, especially before death. Treatment orders most frequently referred to resuscitation and hospitalization (do-not order increased from 73% to 92%, and from 28% to 76%, respectively). The proportions of patients with a palliative care goal and do-not-treat orders were similar after developing pneumonia, but increased after intake problems. During follow-up, 46 patients were hospitalized one or more times. Hospitalization occurred despite a do-not-hospitalize order in 21% of decisions. The most frequently reported reason for hospitalization was a fracture, especially in patients with a do-not-hospitalize order. Conclusion Care plans, including global care goals (predominantly palliative care goals), are made soon after admission, and specific treatment orders are agreed upon in more detail when the condition of the patient worsens. Establishing care plans shortly after nursing home admission may help to prevent burdensome treatment. [ABSTRACT FROM AUTHOR]

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making. [ABSTRACT FROM AUTHOR]

Objectives To determine whether older people with advance directive for euthanasia ( ADEs) are stable in their advance desire for euthanasia in the last years of life, how frequently older people with an ADE eventually request euthanasia, and what factors determine this. Design Mortality follow-back study nested in a cohort study. Setting The Netherlands. Participants Proxies of deceased members of a cohort representative of Dutch older people (n = 168) and a cohort of people with advance directives (n = 154). Measurements Data from cohort members (possession of ADE) combined with after-death proxy information on cohort members' last 3 months of life. Multiple logistic regression analysis was performed on determinants of a euthanasia request in individuals with an ADE. Results Response rate was 65%. One hundred forty-two cohort members had an ADE at baseline. Three months before death, 87% remained stable in their desire for euthanasia; 47% eventually requested euthanasia (vs 6% without an ADE), and 16% died after euthanasia. People with an ADE were more likely to request euthanasia if they worried about loss of dignity. Conclusion The majority of older adults who complete an ADE will have a stable preference over time, but an advance desire for euthanasia does not necessarily result in a euthanasia request. Writing an ADE may reflect a person's need for reassurance that they can request euthanasia in the future. [ABSTRACT FROM AUTHOR]

Background: Many patients show deterioration in functioning and increased care needs in the last year of life. End-of-life care needs and health care utilization might differ between groups of acutely hospitalized older patients. Aim: To investigate differences in geriatric conditions, advance care planning, and health care utilization in patients with cancer, organ failure, or frailty, who died within 1 year after acute hospitalization. Design: Prospective cohort study conducted between 2002 and 2008, with 1-year follow-up. Setting: University teaching hospital in the Netherlands. Participants: Aged ⩾65 years, acutely hospitalized for ⩾48 h, and died within 1 year after hospitalization. At admission, all patients received a systematic comprehensive geriatric assessment. Hospital records were searched for advance care planning information and health care utilization. Differences between patient groups were calculated. Results: In total, 306 patients died within 1 year after acute admission (35%) and were included; 151 with cancer, 98 with end-stage organ failure, and 57 frail older persons. At hospital admission, 72% of the frail group had delirium and/or severe pre-existing cognitive impairment. The frail and organ failure group had many pre-existing disabilities. Three months post-discharge, 75% of the frail and organ failure group had died, 45% of these patients had an advance care plan in their hospital records. Conclusion: Patients with frailty and organ failure had highest rates of geriatric conditions at hospital admission and often had missing information on advance care planning in the hospital records. There is a need to better identify end-of-life needs for these groups. [ABSTRACT FROM AUTHOR]

The article presents information on the comfort goal of care and end-of-life outcomes in dementia. Topics discussed include palliative care, family satisfaction with end-of-life care and quality of dying, and nursing homes (NHs). Also being discussed are long-term-care, advanced care planning (ACP), and generalized estimating equations (GEE).

The article presents a population-based study that examined the relationship between the general end-of-life goals of Dutch older people and their specific life-sustaining treatment preferences. The study found that 13.5% of the patients preferred a longer life, irrespective of health problems, and 86.5% of them wanted a shorter life. It indicated that in the cancer scenario, the relationship between a desire for a treatment and a preference for a longer life ranged from 50% to 76%.

Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care. Trial registration: Netherlands Trial Register (NTR): NL7644. Registration date: April 7, 2019. [ABSTRACT FROM AUTHOR]

Background: There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during serious and chronic illness, ACP aims to involve patients in decision-making before they become cognitively and communicatively incapable. However, it remains underutilized in daily neurological practice except for speciality clinics such as ALS centers. Our aim was to study ACP in the tertiary ALS center Amsterdam and to investigate patients' reflections on it. Subsequently we used this knowledge to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases. Methods: Non-participating observations of all appointments of patients with amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy (PMA) with the treating physician, in various stages of disease, during 6 consecutive months, followed by single in-depth interviews, and an inductive analysis. Results: Twenty-eight Dutch patients participated, varying in age, gender, disease onset and severity of physical decline. ACP started directly when the diagnosis was given, by means of a general outlook on the future with progressive disability and immediate introduction to a customized multidisciplinary team. During follow-up ACP was realized by regular appointments in which monitoring of the patient's status and clear communication strategies formed the basis of tailor-made discussions on treatment options. Patients accepted this policy as careful professional guidance. Conclusions: ACP is a professional communication process throughout the whole course of progressive disease. It is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, we argue that such a well-structured approach would also enhance the quality of care and life of patients with other chronic progressive neurological diseases. [ABSTRACT FROM AUTHOR]

Background: Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences. Methods: Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis. Results: Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy. Conclusions: ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient. [ABSTRACT FROM AUTHOR]