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Objective: In the shared decision-making (SDM) process for potential early phase clinical cancer trial participation, value clarification is highly recommended. However, exploration and discussion of patient values between patients and oncologists remains limited. This study aims to develop an SDM-supportive intervention, consisting of a preparatory online value clarification tool (OnVaCT) and a communication training. Methods: The OnVaCT intervention was developed and pilot-tested by combining theoretical notions on value clarification, with interview studies with patients and oncologists, focus groups with patient representatives and oncologists, and think aloud sessions with patients, following the Medical Research Council (MRC) framework for complex interventions. These human-centered methodologies enabled a user-centered approach at every step of the development process of the intervention. Results: This study shows relevant patient values and oncologists’ perspectives on value exploration and discussion in daily practice. This has been combined with theoretical considerations into the creation of characters based on real-life experiences of patients in the OnVaCT, and how the tool is combined with a communication training for oncologists to improve SDM.

Background: Patients with advanced cancer who no longer have standard treatment options available may decide to participate in early phase clinical trials (i.e. experimental treatments with uncertain outcomes). Shared decision-making (SDM) models help to understand considerations that influence patients’ decision. Discussion of patient values is essential to SDM, but such communication is often limited in this context and may require new interventions. The OnVaCT intervention, consisting of a preparatory online value clarification tool (OnVaCT) for patients and communication training for oncologists, was previously developed to support SDM. This study aimed to qualitatively explore associations between patient values that are discussed between patients and oncologists during consultations about potential participation in early phase clinical trials before and after implementation of the OnVaCT intervention. Methods: This study is part of a prospective multicentre nonrandomized controlled clinical trial and had a between-subjects design: pre-intervention patients received usual care, while post-intervention patients additionally received the OnVaCT. Oncologists participated in the communication training between study phases. Patients’ initial consultation on potential early phase clinical trial participation was recorded and transcribed verbatim. Applying a directed approach, two independent coders analysed the transcripts using an initial codebook based on previous studies. Steps of continuous evaluation and revision were repeated until data saturation was reached. Results: Data saturation was reached after 32 patient-oncologist consultations (i.e. 17 pre-intervention and 15 post-intervention). The analysis revealed the values: hope, perseverance, quality or quantity of life, risk tolerance, trust in the healthcare system/professionals, autonomy, social adherence, altruism, corporeality, acceptance of one’s

Objectives:Clear information and supportive care are necessary for oncology patients and their relatives to manage the disease (trajectory). Centres for information and support aim to address their needs by offering informal and non-medical formal services. This study evaluated whether the centres’ services offered meet the needs of its visitors, and whether there is interest for these among oncology patients treated at affiliated hospitals.Methods:In this participatory action research, interviews were conducted among visitors of two centres (Patient Information Center Oncology (PATIO) and IntermeZZo) and among patients treated at the affiliated hospitals. Visitors were interviewed to share their experiences regarding the centres’ services offered. Patients from the hospitals were interviewed about their interest in such support. Data were collected during three different periods and adjustments were made to the centres’ services between measurements. Results:111 (PATIO) and 123 visitors (IntermeZZo) were interviewed, and 189 and 149 patients at the respective hospitals. Reasons to visit PATIO/IntermeZZo were to relax (93.1%), seek professional advice (54.6%) and meet peers (36.3%). Visitors indicated that the visits met their needs (99.1%), citing the accessible support and the expertise in oncology. 20% of patients interviewed at the hospitals expressed interest in visiting PATIO/ IntermeZZo. The majority of patients (89.6%) considered these centres an integral part of their treatment process. These findings were stable over time. Conclusions:Patients and their relatives highly value the services of hospital-affiliated centres for information and support. Future research should address how such centres best be integrated in the Dutch healthcare system.

Background: The optimal duration of anticoagulation in patients with active cancer and venous thromboembolism (VTE) is unknown. Current clinical guidelines advocate anticoagulant therapy for 3–6 months and to continue anticoagulant therapy for as long as the cancer is active. However, an adequate systematic review on the rate of recurrent VTE after discontinuation of anticoagulant therapy has not been performed. Methods: For this systemic review and meta-analysis, we searched Embase.com, Medline (Ovid), Web of Science, Cochrane Library, and Google Scholar, from database inception to February 16, 2023, for studies on anticoagulant therapy in patients with cancer and the recurrence of venous thromboembolism after discontinuation of this therapy. We included randomised controlled trials and cohort studies published in English that reported on patients who met the following: cancer and a first VTE, completed at least 3 months of anticoagulant therapy, were followed after discontinuation of anticoagulant therapy, and with symptomatic recurrent VTE as an outcome during follow-up. Study-level data were requested from study authors. The primary outcome was the rate of recurrent VTE after discontinuation of anticoagulant therapy. A Bayesian random-effects meta-analysis was used to estimate the rate of recurrent VTE per 100 person-years for the pooled studies at different time intervals after discontinuation of anticoagulation therapy. We also calculated the cumulative VTE recurrence rate at different time intervals. Forest plots were mapped and the results were summarized by the median and 95% credible interval (CIs). This study was registered with PROSPERO, CRD42021249060. Findings: Of 3856 studies identified in our search, 33 studies were identified for inclusion. After requesting study-level data, 14 studies involving 1922 patients with cancer-associated thrombosis were included. The pooled rate of recurrent VTE p

Objectives: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support. Methods: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected. Results: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of â € psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was â € worrying about the future of my loved ones' (22.0%); for relatives this was â € fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs. Conclusions: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics., Methodologie en Organisatie van Design

PURPOSE: To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning. METHODS: On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia. RESULTS: A total of 1,030 valid responses were received. Most participants were younger than 60 years (92%), female (91%), married (78%), Muslim (75%), diagnosed with breast cancer (68%), highly educated (64%), and more than one year beyond diagnosis of their cancer. If diagnosed with a life-limiting illness, participants wished to be informed about their diagnosis (74%), disease severity (61%), estimated curability (81%), expected disease trajectory (66%), and estimated life expectancy (37%). Between 46%-69% of the participants wished to discuss four topics of advance care planning (end-of-life treatments, resuscitation, health care proxies, and what matters at the end of life); 21%-42% had done so. Of those who wished to discuss these topics, 36%-79% preferred to do so with their family members. The most important reasons for not being willing to engage in advance care planning were the desire to surrender to God's will and to focus on here and now. CONCLUSION: In a group of cancer survivors, most of them were highly educated, young, female, and diagnosed with breast cancer. Their preferences for medical information and advance care planning varied, with the majority wishing for information and involvement in advance care planning. Culturally sensitive advance care planning involves health care professionals eliciting individuals' preferences for medical information disclosure and discussing different topics in advance care planning conversations.

A need exists for studies investigating symptom relief at the end of life. Randomised controlled trials (RCTs) are the gold standard for demonstrating efficacy of medication, but they are difficult to perform at the end of life due to barriers such as the vulnerability of patients, and gatekeeping by healthcare professionals. We analyzed and reflected on recruitment, participation, and strategies used in an RCT at the end of life. The SILENCE study, performed in six inpatient hospice facilities, was a placebo-controlled trial to study the effect of ScopolamIne butyLbromidE giveN prophylactiCally for dEath rattle in dying patients. We addressed patients’ vulnerability by using an advance consent procedure, and potential gatekeeping by extensive training of health care professionals and the appointment of hospice doctors as daily responsible researchers. In almost three years, 1097 patients were admitted of whom 626 were eligible at first assessment. Of these, 119 (19%) dropped out because of physical deterioration before they could be informed about the study (44) or sign informed consent (75). Twenty-five (4%) patients were not asked to participate. In 24 cases (4%), relatives advised against the patient participating. Overall, 229 patients (37%) gave informed consent to participate. The vulnerability of patients was the most important barrier in this medication study at the end of life. Gatekeeping by HCPs and relatives occurred in a small number of patients. The robust design and applied strategies to facilitate patient recruitment in this study resulted in a successful study with sufficient participants.

In a predominantly biomedical healthcare model focused on cure, providing optimal, person-centred palliative care is challenging. The general public, patients, and healthcare professionals are often unaware of palliative care’s benefits. Poor interdisciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs contribute to sub-optimal palliative care provision. We aimed to develop a national quality framework to improve availability and access to high-quality palliative care in a mixed generalist-specialist palliative care model. We hypothesised that a whole-sector approach and a modified Delphi technique would be suitable to reach this aim. Analogous to the international AGREE guideline criteria and employing a whole-sector approach, an expert panel comprising mandated representatives for patients and their families, various healthcare associations, and health insurers answered the main question: ‘What are the elements defining high-quality palliative care in the Netherlands?’. For constructing the quality framework, a bottleneck analysis of palliative care provision and a literature review were conducted. Six core documents were used in a modified Delphi technique to build the framework with the expert panel, while stakeholder organisations were involved and informed in round-table discussions. In the entire process, preparing and building relationships took one year and surveying, convening, discussing content, consulting peers, and obtaining final consent from all stakeholders took 18 months. A quality framework, including a glossary of terms, endorsed by organisations representing patients and their families, general practitioners, elderly care physicians, medical specialists, nurses, social workers, psychologists, spiritual caregivers, and health insurers was developed and annexed with a summary for patients and families. We successfully developed a national consensus-based patient-centred

Background: Goals of end-of-life care must be adapted to the needs of patients with chronic obstructive pulmonary disease (COPD) who are in the last phase of life. However, identification of those patients is limited by moderate performances of existing prognostic models and by limited validation of the often-recommended surprise question. Aim: To develop a clinical prediction model to predict 1-year mortality in patients with COPD. Design: Prospective study using logistic regression to develop a model in two steps: (1) external validation of the ADO, BODEX, or CODEX models (A = age; B = body mass index; C = comorbidity; D = dyspnea; EX = exacerbations; O = airflow obstruction); (2) updating of best performing model and extending it with the surprise question. Discriminative performance of the new model was assessed using internal-external validation and measured with area under the curve (AUC). A nomogram and web application were developed. Settings/participants: Patients with COPD from five hospitals (September–November 2017). Results: Of the 358 included patients (median age 69.5 years, 50% male), 63 (17%) died within a year. The ADO index (AUC 0.73) had the best discriminative ability compared to the BODEX (AUC 0.71) or CODEX (AUC 0.68), and was extended with the surprise question. The resulting ADO-surprise question (SQ) model had an AUC of 0.79. Conclusion: The ADO-SQ model offers improved discriminative performance for predicting 1-year mortality compared to the surprise question, ADO, BODEX, or CODEX. A user-friendly nomogram and web application (https://dnieboer.shinyapps.io/copd) were developed. Further external validation of the ADO-SQ in patient groups is needed.

This study aimed at investigating nurse practitioners' self-efficacy and behavior in supporting self-management of patients with a progressive, life-threatening illness and their relatives. We adapted an existing validated instrument for this purpose, amongst other things by adding a seventh subscale "attention for relatives,"and administered it in a nationwide, cross-sectional online survey among Dutch nurse practitioners. We analyzed associations between self-reported self-efficacy and behavior using Pearson correlations and paired sample t tests. Associations between self-efficacy and behavior with nurse practitioners' characteristics were examined using linear regression models. Most nurse practitioners (n = 327; 26% complete responses) were women (93%). Subscale and total scores for nurse practitioners' self-efficacy were moderately positively correlated with those for their behavior in self-management support. Subscale and total scores were statistically significantly higher for their self-efficacy than for their behavior. Increased work experience with patients with a progressive, life-threatening illness was associated with higher scores on self-efficacy and behavior in self-management support. We conclude that nurse practitioners are confident in their ability to support self-management; yet, they do not always use these competencies in practice.

Objectives To explore patients' experiences and recommendations for discussions about their prognosis and end of life with their physicians. Methods Patients with advanced cancer or advanced chronic obstructive pulmonary disease (COPD) were enrolled in qualitative interviews, which were analyzed with a phenomenological and thematic approach. Results During interviews with fourteen patients (median age 64 years), we identified the following themes for discussion about prognosis and the end of life: topics discussed, the timing, the setting, physician-patient relationship, responsibilities for clinicians, and recommendations. Patients preferred the physician to initiate such discussion, but wanted to decide about its continuation and content. The discussions were facilitated by an established physician- patient relationship or attendance of relatives. Patients with cancer had had discussions about prognosis at rather clear-cut moments of deterioration than patients with COPD. Patients with COPD did not consider end-of-life discussions a responsibility of the pulmonologist. Patients recommended an understandable message, involvement of relatives or other clinicians, sufficient time, and sensitive non-verbal communication. Conclusions Patients appreciated open, sensitive, and negotiable discussions about prognosis and the end of life. Practice implications Patients' recommendations could be used for communication training. Possible differences in the need for such discussions between patients with cancer or COPD warrant further research.

Objective: This article identifies the core values that play a role in patients’ decision-making process about participation in early-phase clinical cancer trials. Methods: Face-to-face, semi-structured serial interviews (n = 22) were performed with thirteen patients with advanced cancer recruited in two Dutch specialized cancer centers. In a cyclic qualitative analysis process, open and axial coding of the interviews finally led to an overview of the values that are woven into patients’ common language about cancer and clinical trials. Results: Six core values were described, namely, acceptance creates room for reconsideration of values, reconciliation with one’s fate, hope, autonomy, body preservation, and altruism. Previously found values in advanced cancer, such as acceptance, hope, autonomy, and altruism, were further qualified. Reconciliation with one’s fate and body preservation were highlighted as new insights for early-phase clinical cancer trial literature. Conclusions: This article furthers the understanding of core values that play a role in the lives and decision-making of patients with advanced cancer who explore participation in early-phase clinical cancer trials. These values do not necessarily have to be compatible with one another, making tragic choices necessary. Understanding the role of core values can contribute to professional sensitivity regarding what motivates patients’ emotions, thoughts, and decisions and help patients reflect on and give words to their values and preferences. It supports mutual understanding and dialog from which patients can make decisions according to their perspectives on a good life for themselves and their fellows in the context of participation in an early-phase clinical cancer trial.

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085.

Purpose: Adequate integration of palliative care in oncological care can improve the quality of life in patients with advanced cancer. Whether such integration affects the use of diagnostic procedures and medical interventions has not been studied extensively. We investigated the effect of the implementation of a standardized palliative care pathway in a hospital on the use of diagnostic procedures, anticancer treatment, and other medical interventions in patients with incurable cancer at the end of their life. Methods: In a pre- and post-intervention study, data were collected concerning adult patients with cancer who died between February 2014 and February 2015 (pre-PCP period) or between November 2015 and November 2016 (post-PCP period). We collected information on diagnostic procedures, anticancer treatments, and other medical interventions during the last 3 months of life. Results: We included 424 patients in the pre-PCP period and 426 in the post-PCP period. No differences in percentage of laboratory tests (85% vs 85%, p = 0.795) and radiological procedures (85% vs 82%, p = 0.246) were found between both groups. The percentage of patients who received anticancer treatment or other medical interventions was lower in the post-PCP period (40% vs 22%, p < 0.001; and 42% vs 29%, p < 0.001, respectively). Conclusions: Implementation of a PCP resulted in fewer medical interventions, including anticancer treatments, in the last 3 months of life. Implementation of the PCP may have created awareness among physicians of patients’ impending death, thereby supporting caregivers and patients to make appropriate decisions about medical treatment at the end of life. Trial registration number: Netherlands Trial Register; clinical trial number: NL 4400 (NTR4597); date registrated: 2014–04-27.

Background: Better insight in patients’ prognosis can help physicians to timely initiate advance care planning (ACP) discussions with patients with chronic obstructive pulmonary disease (COPD). We aimed to identify predictors of mortality. Methods: We systematically searched databases Embase, PubMed, MEDLINE, Web of Science, and Cochrane Central in April 2020. Papers reporting on predictors or prognostic models for mortality at 3 months and up to 24 months were assessed on risk-of-bias. We performed a meta-analysis with a fixed or random-effects model, and evaluated the discriminative ability of multivariable prognostic models. Results: We included 42 studies (49–418,251 patients); 18 studies were included in the meta-analysis. Significant predictors of mortality within 3–24 months in the random-effects model were: previous hospitalization for acute exacerbation (hazard ratio [HR] 1.97; 95% confidence interval [CI] 1.32–2.95), hospital readmission within 30 days (HR 5.01; 95% CI 2.16–11.63), cardiovascular comorbidity (HR 1.89; 95% CI 1.25–2.87), age (HR 1.48; 95% CI 1.38–1.59), male sex (HR 1.68; 95% CI 1.38–1.59), and long-term oxygen therapy (HR 1.74; 95% CI 1.10–2.73). Nineteen previously developed multicomponent prognostic models, as examined in 11 studies, mostly had moderate discriminate ability. Conclusion: Identified predictors of mortality may aid physicians in selecting COPD patients who may benefit from ACP. However, better discriminative ability of prognostic models or development of a new prognostic model is needed for further large-scale implementation. Registration: PROSPERO (CRD42016038494), https://www.crd.york.ac.uk/prospero/.

Background: Individuals’ willingness to engage in advance care planning is influenced by factors such as culture and religious beliefs. While most studies on advance care planning in Asia have been performed in high-income countries, Indonesia is a lower-middle-income country, with a majority of strongly collectivist and religiously devout inhabitants. We studied the perspectives of Indonesian patients with cancer and family caregivers regarding advance care planning by first exploring their experiences with medical information-disclosure, decision-making, and advance care planning and how these experiences influence their perspectives on advance care planning. Methods: We conducted semi-structured interviews among 16 patients with cancer and 15 family caregivers in a national cancer center in Jakarta and a tertiary academic general hospital in Yogyakarta. We performed an inductive thematic analysis using open, axial, and selective coding. The rigor of the study was enhanced by reflective journaling, dual coding, and investigator triangulation. Results: Twenty-six of 31 participants were younger than 60 years old, 20 were Muslim and Javanese, and 17 were college or university graduates. Four major themes emerged as important in advance care planning: (1) participants’ perceptions on the importance or harmfulness of cancer-related information, (2) the importance of communicating bad news sensitively (through empathetic, implicit, and mediated communication), (3) participants’ motives for participating in medical decision-making (decision-making seen as patients’ right or responsibility, or patients’ state of dependency on others), and (4) the complexities of future planning (e.g., due to its irrelevance to participants’ religious beliefs and/or their difficulties in seeing the relevance of future planning). Conclusions: Culturally sensitive approaches to advance care planning in Indonesia should address the importance of facilitating open communication between pat

Importance: To optimize palliative care in patients with cancer who are in their last year of life, timely and accurate prognostication is needed. However, available instruments for prognostication, such as the surprise question ("Would I be surprised if this patient died in the next year?") and various prediction models using clinical variables, are not well validated or lack discriminative ability. Objective: To develop and validate a prediction model to calculate the 1-year risk of death among patients with advanced cancer. Design, Setting, and Participants: This multicenter prospective prognostic study was performed in the general oncology inpatient and outpatient clinics of 6 hospitals in the Netherlands. A total of 867 patients were enrolled between June 2 and November 22, 2017, and followed up for 1 year. The primary analyses were performed from October 9 to 25, 2019, with the most recent analyses performed from June 19 to 22, 2022. Cox proportional hazards regression analysis was used to develop a prediction model including 3 categories of candidate predictors: clinician responses to the surprise question, patient clinical characteristics, and patient laboratory values. Data on race and ethnicity were not collected because most patients were expected to be of White race and Dutch ethnicity, and race and ethnicity were not considered as prognostic factors. The models' discriminative ability was assessed using internal-external validation by study hospital and measured using the C statistic. Patients 18 years and older with locally advanced or metastatic cancer were eligible. Patients with hematologic cancer were excluded. Main Outcomes and Measures: The risk of death by 1 year. Results: Among 867 patients, the median age was 66 years (IQR, 56-72 years), and 411 individuals (47.4%) were male. The 1-year mortality rate was 41.6% (361 patients). Three prediction models with increasing complexity were developed: (1) a simple model including the surprise questi

To timely initiate advance care planning in patients with advanced cancer, physicians should identify patients with limited life expectancy. We aimed to identify predictors of mortality. To identify the relevant literature, we searched Embase, MEDLINE, Cochrane Central, Web of Science, and PubMed databases between January 2000–April 2020. Identified studies were assessed on risk-of-bias with a modified QUIPS tool. The main outcomes were predictors and prediction models of mortality within a period of 3–24 months. We included predictors that were studied in ≥2 cancer types in a meta-analysis using a fixed or random-effects model and summarized the discriminative ability of models. We included 68 studies (ranging from 42 to 66,112 patients), of which 24 were low risk-of-bias, and 39 were included in the meta-analysis. Using a fixed-effects model, the predictors of mortality were: the surprise question, performance status, cognitive impairment, (sub)cutaneous metastases, body mass index, comorbidity, serum albumin, and hemoglobin. Using a random-effects model, predictors were: disease stage IV (hazard ratio [HR] 7.58; 95% confidence interval [CI] 4.00–14.36), lung cancer (HR 2.51; 95% CI 1.24–5.06), ECOG performance status 1+ (HR 2.03; 95% CI 1.44–2.86) and 2+ (HR 4.06; 95% CI 2.36–6.98), age (HR 1.20; 95% CI 1.05–1.38), male sex (HR 1.24; 95% CI 1.14–1.36), and Charlson comorbidity score 3+ (HR 1.60; 95% CI 1.11–2.32). Thirteen studies reported on prediction models consisting of different sets of predictors with mostly moderate discriminative ability. To conclude, we identified reasonably accurate non-tumor specific predictors of mortality. Those predictors could guide in developing a more accurate prediction model and in selecting patients for advance care planning.

Objectives: Accurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians' views on identifying and disclosing the last phase of life of patients with different illness trajectories. Methods: Data from two focus groups were analysed using thematic analysis with a phenomenological approach. Results: Fifteen medical specialists and general practitioners participated. Participants thought prediction of patients' last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants' reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician-patient relationship, or a lack of time or availability of palliative care services. Conclusions: Physicians consider the assessment of patients' last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician-patient relationship, and lack of time or palliative care services. Future studies should examine patients' preferences for those discussions.

Oxycodone is frequently used for treating cancer‐related pain, while not much is known about the factors that influence treatment outcomes in these patients. We aim to unravel these factors by developing a population‐pharmacokinetic model to assess the pharmacokinetics of oxycodone and its metabolites in cancer patients, and to associate this with pain scores, and adverse events. Hospitalized patients with cancer‐related pain, who were treated with oral oxycodone, could participate. Pharmacokinetic samples and patient‐reported pain scores and occurrence and severity of nine adverse events were taken every 12 h. In 28 patients, 302 pharmacokinetic samples were collected. A one‐compartment model for oxycodone and each metabolite best described oxycodone, nor‐oxycodone, and nor‐oxymorphone pharmacokinetics. Furthermore, oxycodone exposure was not associated with average and maximal pain scores, and oxycodone, nor-oxycodone, and nor‐oxymorphone exposure were not associated with adverse events (all p > 0.05). This is the first model to describe the pharmacokinetics of oxycodone including the metabolites nor-oxycodone and nor‐oxymorphone in hospitalized patients with cancer pain. Additional research, including more patients and a more timely collection of pharmacodynamic data, is needed to further elucidate oxycodone (metabolite) pharmacokinetic/pharmacodynamic relationships. This model is an important starting point for further studies to optimize oxycodone dosing regiments in patients with cancer‐related pain.

Context: Early integration of oncology and palliative care has been recommended to improve patient outcomes at the end of life. A standardized Palliative Care Pathway, consisting of a structured electronic medical checklist, may support such integration. Objectives: We studied the effect of implementation of a Palliative Care Pathway on patients’ place of death and advance care planning. Methods: We conducted a prospective pre- and postimplementation study of adult patients with cancer from a single hospital who died between February 2014 and February 2015 (pre-implementation period) or between November 2015 and November 2016 (post-implementation period). Results: We included 424 patients in the pre- and 426 in the post-implementation period. The pathway was started for 236 patients (55%) in the post-implementation period, on average 33 days (IQR 12-73 days) before death. 74% and 77% of the patients died outside hospital in the pre- and post-implementation period, respectively (P = 0.360). When the PCP was initiated, 83% died outside hospital. Bad-news conversations (75% and 62%, P < 0.001) and preferred place of death (47% and 32%, P < 0.001) were more often documented in the pre-implementation period, whereas a DNR-code was more often documented during the post-implementation period (79% and 89%, P < 0.001). Conclusions: Implementation of a Palliative Care Pathway had no overall positive effect on place of death and several aspects of advance care planning. Start of a Palliative Care Pathway in the last months of life may be too late to improve end-of-life care. Future research should focus on strategies enabling earlier start of palliative care interventions.

Background: Idiopathic pulmonary fibrosis (IPF) is a progressive fatal disease with a heterogeneous disease course. Timely initiation of palliative care is often lacking. The surprise question "Would you be surprised if this patient died within the next year?"is increasingly used as a clinical prognostic tool in chronic diseases but has never been evaluated in IPF. Objective: We aimed to evaluate the predictive value of the surprise question for 1-year mortality in IPF. Methods: In this prospective cohort study, clinicians answered the surprise question for each included patient. Clinical parameters and mortality data were collected. The sensitivity, specificity, accuracy, negative, and positive predictive value of the surprise question with regard to 1-year mortality were calculated. Multivariable logistic regression analysis was performed to evaluate which factors were associated with mortality. In addition, discriminative performance of the surprise question was assessed using the C-statistic. Results: In total, 140 patients were included. One-year all-cause mortality was 20% (n = 28). Clinicians identified patients with a survival of <1 year with a sensitivity of 68%, a specificity of 82%, an accuracy of 79%, a positive predictive value of 49%, and a negative predictive value of 91%. The surprise question significantly predicted 1-year mortality in a multivariable model (OR 3.69; 95% CI 1.24-11.02; p = 0.019). The C-statistic of the surprise question to predict mortality was 0.75 (95% CI 0.66-0.85). Conclusions: The answer on the surprise question can accurately predict 1-year mortality in IPF. Hence, this simple tool may enable timely focus on palliative care for patients with IPF.