Advance care planning in primary care: a retrospective medical record study among patients with different illness trajectories.

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.

QALY-time: experts' view on the use of the quality-adjusted LIFE year in COST-effectiveness analysis in palliative care.

BACKGROUND: The Quality-Adjusted Life Year (QALY) is internationally recognized as standard metric of health outcomes in cost-effectiveness analyses (CEAs) in healthcare. The ongoing debate concerning the appropriateness of its use for decision-making in palliative care has been recently mapped in a review. The aim was to report on and draw conclusions from two expert meetings that reflected on earlier mapped issues in order to reach consensus, and to advise on the QALY's future use in palliative care. METHODS: A nominal group approach was used. In order to facilitate group decision making, three statements regarding the use of the QALY in palliative care were discussed in a structured way. Two groups of international policymakers, healthcare professionals and researchers participated. Data were analysed qualitatively using inductive coding. RESULTS: 1) Most experts agreed that the recommended measurement tool for the QALYs 'Q' component, the EuroQol-5D (EQ-5D), is inappropriate for palliative care. A more sensitive tool, which might be based on the capabilities approach, could be used or developed. 2) Valuation of time should be incorporated in the 'Q' part, leaving the linear clock time in the 'LY' component. 3) Most experts agreed that the QALY, in its current shape, is not suitable for palliative care. CONCLUSIONS: 1) Although the EQ-5D does not suffice, a generic tool is needed for the QALY. As long as no suitable alternative is available, other tools can be used besides or serve as basis for the EQ-5D because of issues in conceptual overlap. 2) Future research should further investigate the valuation of time issue, and how best to integrate it in the 'Q' component. 3) A generic outcome measure of effectiveness is essential to justly allocate healthcare resources. However, experts emphasized, the QALY is and should be one of multiple criteria for choices in the healthcare insurance package.

The Attitudes of Pulmonologists Regarding Smoking Behavior of Their Patients with Advanced COPD: A Qualitative Research.

Background: Patients with diseases linked with smoking, such as COPD, report a health-related stigma on their smoking behavior, which is related to a poorer quality of life and psychological distress. According to patients with COPD, health-care professionals sometimes reinforce the sense of stigma. However, little is known about the physicians' attitudes on this topic towards the patient with COPD. Purpose: To explore attitudes of pulmonologists regarding the smoking behavior of their patients with COPD and if (and to what extent) a stigma is present in their attitudes towards their smoking patients. Patients and methods: Eighteen pulmonologists were interviewed using a semi-structured guide with prespecified topics. The interview transcripts were coded using Atlas.ti. Analysis of data from these interviews was performed using conventional content analysis. Results: We identified three themes: attitudes towards smoking in general, the interaction between patient and physician, and smoking cessation. All participants said patients are not fully responsible for their smoking behavior. Contrarily, smoking was also seen as a free choice by most physicians. Moreover, smoking cessation was mostly seen as the responsibility of the patient. Feelings of powerlessness, frustration and compassion were reported in the guidance of patients with COPD. Conclusion: The results of this study show an ambivalent attitude of pulmonologists regarding the smoking behavior of their patients with COPD. The outcomes of this study can form a base for further research and can be used as insights for interventions that aim to raise awareness of physicians' own attitudes and increase the quality of physician-patient communication.

Screening with the double surprise question to predict deterioration and death: an explorative study.

BACKGROUND: Early identification of palliative patients is challenging. The Surprise Question (SQ1; Would I be surprised if this patient were to die within 12 months?) is widely used to identify palliative patients. However, its predictive value is low. Therefore, we added a second question (SQ2) to SQ1: 'Would I be surprised if this patient is still alive after 12 months?' We studied the accuracy of this double surprise question (DSQ) in a general practice. METHODS: We performed a prospective cohort study with retrospective medical record review in a general practice in the eastern part of the Netherlands. Two general practitioners (GPs) answered both questions for all 292 patients aged ≥75 years (mean age 84 years). Primary outcome was 1-year death, secondary outcomes were aspects of palliative care. RESULTS: SQ1 was answered with 'no' for 161/292 patients. Of these, SQ2 was answered with 'yes' in 22 patients. Within 12 months 26 patients died, of whom 24 had been identified with SQ1 (sensitivity: 92%, specificity: 49%). Ten of them were also identified with SQ2 (sensitivity: 42%, specificity: 91%). The latter group had more contacts with their GP and more palliative care aspects were discussed. CONCLUSIONS: The DSQ appears a feasible and easy applicable screening tool in general practice. It is highly effective in predicting patients in high need for palliative care and using it helps to discriminate between patients with different life expectancies and palliative care needs. Further research is necessary to confirm the findings of this study.

Adding a second surprise question triggers general practitioners to increase the thoroughness of palliative care planning: results of a pilot RCT with cage vignettes.

BACKGROUND: In our aging society, palliative care should be a standard component of health care. However, currently it is only provided to a small proportion of patients, mostly to those with cancer, and restricted to the terminal phase. Many general practitioners (GPs) say that one of their most significant challenges is to assess the right moment to start anticipatory palliative care. The "Surprise Question" (SQ1: "Would I be surprised if this patient were to die in the next 12 months"?), if answered with "no", is an easy tool to apply in identifying patients in need of palliative care. However, this tool has a low specificity. Therefore, the aim of our pilot study was to determine if adding a second, more specific "Surprise Question" (SQ2: "Would I be surprised if this patient is still alive after 12 months"?) in case SQ1 is answered in the negative, prompts GPs to plan for anticipatory palliative care. METHODS: By randomization, 28 GPs in the south-eastern part of the Netherlands were allocated to three different groups. They all received a questionnaire with four vignettes, respectively representing patients with advanced organ failure (A), end stage cancer (B), frailty (C), and recently diagnosed cancer (D). GPs in the first group did not receive additional information, the second group received SQ1 after each vignette, and the third group received SQ1 and SQ2 after each vignette. We rated their answers based on essential components of palliative care (here called RADIANT score). RESULTS: GPs in group 3 gave higher RADIANT scores to those vignettes in which they would be surprised if the patients were still alive after 12 months. In all groups, vignette B had the highest mean RADIANT score, followed by vignettes A and C, and the lowest on vignette D. Seventy-one percent of GPs in groups 2 and 3 considered SQ1 a helpful tool, and 75% considered SQ2 helpful. CONCLUSIONS: This innovative pilot study indicates that the majority of GPs think SQ2 is a helpful additional tool. The combination of the two "Surprise Questions" encourages GPs to make more specific plans for anticipatory palliative care.

Proactive palliative care for patients with COPD (PROLONG): a pragmatic cluster controlled trial.

BACKGROUND AND AIM: Patients with advanced chronic obstructive pulmonary disease (COPD) have poor quality of life. The aim of this study was to assess the effects of proactive palliative care on the well-being of these patients. TRIAL REGISTRATION: This trial is registered with the Netherlands Trial Register, NTR4037. PATIENTS AND METHODS: A pragmatic cluster controlled trial (quasi-experimental design) was performed with hospitals as cluster (three intervention and three control) and a pretrial assessment was performed. Hospitals were selected for the intervention group based on the presence of a specialized palliative care team (SPCT). To control for confounders, a pretrial assessment was performed in which hospitals were compared on baseline characteristics. Patients with COPD with poor prognosis were recruited during hospitalization for acute exacerbation. All patients received usual care while patients in the intervention group received additional proactive palliative care in monthly meetings with an SPCT. Our primary outcome was change in quality of life score after 3 months, which was measured using the St George Respiratory Questionnaire (SGRQ). Secondary outcomes were, among others, quality of life at 6, 9 and 12 months; readmissions: survival; and having made advance care planning (ACP) choices. All analyses were performed following the principle of intention to treat. RESULTS: During the year 2014, 228 patients (90 intervention and 138 control) were recruited and at 3 months, 163 patients (67 intervention and 96 control) completed the SGRQ. There was no significant difference in change scores of the SGRQ total at 3 months between groups (-0.79 [95% CI, -4.61 to 3.34], p=0.70). However, patients who received proactive palliative care experienced less impact of their COPD (SGRQ impact subscale) at 6 months (-6.22 [-11.73 to -0.71], p=0.04) and had more often made ACP choices (adjusted odds ratio 3.26 [1.49-7.14], p=0.003). Other secondary outcomes were not significantly different. CONCLUSION: Proactive palliative care did not improve the overall quality of life of patients with COPD. However, patients more often made ACP choices which may lead to better quality of care toward the end of life.

Development of the ProPal-COPD tool to identify patients with COPD for proactive palliative care.

BACKGROUND: Our objective was to develop a tool to identify patients with COPD for proactive palliative care. Since palliative care needs increase during the disease course of COPD, the prediction of mortality within 1 year, measured during hospitalizations for acute exacerbation COPD (AECOPD), was used as a proxy for the need of proactive palliative care. PATIENTS AND METHODS: Patients were recruited from three general hospitals in the Netherlands in 2014. Data of 11 potential predictors, a priori selected based on literature, were collected during hospitalization for AECOPD. After 1 year, the medical files were explored for the date of death. An optimal prediction model was assessed by Lasso logistic regression, with 20-fold cross-validation for optimal shrinkage. Missing data were handled using complete case analysis. RESULTS: Of 174 patients, 155 patients were included; of those 30 (19.4%) died within 1 year. The optimal prediction model was internally validated and had good discriminating power (AUC =0.82, 95% CI 0.81-0.82). This model relied on the following seven predictors: the surprise question, Medical Research Council dyspnea questionnaire (MRC dyspnea), Clinical COPD Questionnaire (CCQ), FEV1% of predicted value, body mass index, previous hospitalizations for AECOPD and specific comorbidities. To ensure minimal miss out of patients in need of proactive palliative care, we proposed a cutoff in the model that prioritized sensitivity over specificity (0.90 over 0.73, respectively). Our model (ProPal-COPD tool) was a stronger predictor of mortality within 1 year than the CODEX (comorbidity, age, obstruction, dyspnea, and previous severe exacerbations) index. CONCLUSION: The ProPal-COPD tool is a promising multivariable prediction tool to identify patients with COPD for proactive palliative care.

The view of pulmonologists on palliative care for patients with COPD: a survey study.

INTRODUCTION: Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. OBJECTIVE: Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. METHODS: A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. RESULTS: The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). CONCLUSION: To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve palliative care in the ambulatory setting.

Training general practitioners in early identification and anticipatory palliative care planning: a randomized controlled trial.

BACKGROUND: Most patients with advanced cancer, debilitating COPD or chronic heart failure (CHF) live at home. General practitioners (GPs) asked for guidance in how to recognize patients in need of palliative care in a timely way and to structure anticipatory care. For that reason, we developed a training for GPs in identifying patients in need of palliative care and in structuring anticipatory palliative care planning and studied its effect on out-of-hours contacts, contacts with their own GP, hospitalizations and place of death. METHODS: We performed a cluster randomised controlled trial. GPs in the intervention group were trained in identifying patients in need of palliative care and anticipatory care planning. Next, for each identified patient, they were offered a coaching session with a specialist in palliative care to fine-tune a structured care plan. The GPs in the control group did not receive training or coaching, and were asked to provide care as usual. After one year, characteristics of patients deceased of cancer, COPD or CHF in both study groups were compared with mixed effects models for out-of-hours contacts (primary outcome), contacts with their own GP, place of death and hospitalizations in the last months of their life (secondary outcomes). As a post-hoc analysis, of identified patients (of the intervention GPs) these figures were compared to all other deceased patients, who had not been identified as in need of palliative care. RESULTS: We did not find any differences between the intervention and control group. Yet, only half of the trained GPs (28) identified patients (52), which was only 24% of the deceased patients. Those identified patients had significantly more contacts with their own GP (B 4.5218; p <0.0006), were less often hospitalized (OR 0.485; p 0.0437) more often died at home (OR 2.126; p 0.0572) and less often died in the hospital (OR 0.380; p 0.0449). CONCLUSIONS: Although we did not find differences between the intervention and control group, we found in a post-hoc analysis that those patients that had been identified as in need of palliative care had more contacts with their GP, less hospitalizations, and more often died at home. We recommend future controlled studies that try to further increase identification of patients eligible for anticipatory palliative care. The Netherlands National Trial Register: NTR2815 date 07-04-2010.

Factors associated with the intention to use vitamin D supplements: quantitative study among a sample of elderly people in a medium-sized town in the Netherlands.

The objective of this study was to assess which factors are related to the intention of elderly people to use vitamin D supplements.A questionnaire that was based on several theories, feedback of experts, and personal interviews with members of the target group was distributed among a random sample of 497 elderly people in a medium-sized town in the Netherlands (response 46%). Variables measured included perceived susceptibility, severity and control with respect to developing a vitamin D deficiency or getting a bone fracture, and beliefs, perceived social norms, modeling, self-efficacy, and intention with respect to the use of vitamin D supplements. Univariate analyses of variance, chi-square tests, stepwise multiple regression, and stepwise logistic regression analysis were performed. Respondents reporting a high intention had more positive attitudes and normative beliefs, higher self-efficacy expectations with respect to using vitamin D supplements, and more often used other supplements than respondents with a low intention. Subjects who already used vitamin D supplements were more often female and already familiar with the advice and had more positive attitudes and normative beliefs than nonusers. It was concluded that many elderly people have high intentions to start using vitamin D supplements as soon as they hear about the advice. A health promotion campaign to promote the use of vitamin D supplements should aim at making elderly people familiar with the Health Council of the Netherlands' advice. Furthermore, the campaign should place emphasis on changing attitudes, perceived social norms, and self-efficacy expectations toward vitamin D supplement use.