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To identify patients hospitalized for an acute exacerbation of chronic obstructive pulmonary disease (COPD) who have a poor prognosis and might benefit from proactive palliative care, a set of indicators had been developed from the literature. A patient is considered eligible for proactive palliative care when meeting ≥2 criteria of the proposed set of 11 indicators. In order to develop a doctor-friendly and patient-convenient tool, our primary objective was to examine whether these indicators are documented consistently in the medical records. Besides, percentage of patients with a poor prognosis and prognostic value were explored. We conducted a retrospective medical record review of 33 patients. Five indicators; non-invasive ventilation (NIV), comorbidity, body mass index (BMI), previous admissions for acute exacerbation COPD and age were always documented. Three indicators; hypoxaemia and/or hypercapnia, professional home care and actual forced expiratory volume1% (FEV1%) were documented in more than half of the records, whereas the clinical COPD questionnaire (CCQ), medical research council dyspnoea (MRC dyspnoea) and the surprise question were never registered. Besides, 78.8% of the patients met ≥2 criteria and there was a significant association between meeting ≥2 criteria and mortality within 1 year (one-sided Fisher's exact test, p = 0.04). The set of indicators for proactive palliative care in patients with COPD appeared to be user-friendly and feasible.

Context: A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS., Objectives: To identify the course of discomfort in patients receiving CPS., Methods: A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics., Results: A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94)., Conclusion: This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning., Objectives: This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life., Methods: A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed., Results: A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS., Conclusion: Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Some guidelines and recommendations identify existential suffering as a potential refractory symptom for which continuous palliative sedation (CPS) can be administered under certain conditions. However, there has been little research on the characteristics of patients with existential suffering treated with CPS and the degree to which the preconditions are fulfilled. The aim of this study was to provide insight into this specific indication for CPS. Questionnaires were sent to nursing home physicians in The Netherlands, who described 314 patients. Existential suffering was a refractory symptom in 83 of the patients. For most of the patients with refractory existential suffering, other refractory symptoms were also reported, and life expectancy was seven days or less; informed consent for initiating CPS had been obtained in all cases. Consultation and intermittent sedation before the start of CPS were far less frequently reported than one would expect based on the guidelines. Multivariate analysis showed that being male, having previously requested euthanasia, having a nervous system disease, or having an other diagnosis were positively correlated with the administration of CPS for existential suffering. We conclude that more attention should be paid to the suggested preconditions and to the presence of existential suffering in male patients or patients with a nervous system disease.

Background: Proactive palliative care is not yet common practice for patients with COPD. Important barriers are the identification of patients with a poor prognosis and the organization of proactive palliative care dedicated to the COPD patient. Recently a set of indicators has been developed to identify those patients with COPD hospitalized for an acute exacerbation who are at risk for post-discharge mortality. Only after identification of these patients with poor prognosis a multi disciplinary approach to proactive palliative care with support of a specialized palliative care team can be initiated., Methods/design: The PROLONG study is a prospective cluster controlled trial in which 6 hospitals will participate. Three hospitals are selected for the intervention condition based on the presence of a specialized palliative care team. The study population consists of patients with COPD and their main informal caregivers. Patients will be included during hospitalization for an acute exacerbation. All patients in the study receive standard care (usual care). Besides, patients in the intervention condition who meet two or more criteria of the set of indicators for proactive palliative care will have additionally regular consultations with a specialized palliative care team. The objectives of the PROLONG study are: 1) to assess the discriminating power of the proposed set of indicators (indicator study) and 2) to assess the effects of proactive palliative care for qualifying patients with COPD on the wellbeing of these patients and their informal caregivers (intervention study). The primary outcome measure of the indicator study is time to death for any cause. The primary outcome measure of the intervention study is the change in quality of life measured by the St George Respiratory Questionnaire (SGRQ) three months after inclusion., Discussion: The PROLONG study may lead to better understanding of the conditions to start and the effectiveness of proactive palliative care for patients with COPD. Innovative aspects of the PROLONG study are the use of a set of indicators for proactive palliative care, the active involvement of a specialized palliative care team and the use of a patient-tailored proactive palliative care plan., Trial Registration: Netherlands Trial Register (NTR): NTR4037.

Background: Little is known about the determining factors related to the administration of continuous palliative sedation. Knowledge of these determinants may assist physicians in identifying patients who are at high risk of developing refractory symptoms, enable physicians to inform patients, and optimize close monitoring., Objective: The aim of this systematic review was to identify determinants of the administration of continuous palliative sedation., Design: A systematic review of PubMed, EMBASE, and CINAHL was performed to identify English, Dutch, and German language papers published from January 1990 through April 2011. Inclusion was based on the following criteria: patient-based research on continuous palliative sedation, studies investigating determinants of palliative sedation and/or comparison between sedated and nonsedated cohorts, and studies using multivariate analyses and of fair to good or good methodological quality., Results: In total, eight papers were reviewed. The following nine factors were found to be associated with the administration of continuous palliative sedation: younger age, male sex, having cancer, feelings of hopelessness, dying in a hospital, living in a Dutch speaking community setting, very nonreligious or extremely nonreligious physicians, physicians working in "other hospital" specialties, and physicians in favor of assisted death., Conclusions: Given the variation in study designs and the limitations of the included studies, the outcomes should be interpreted carefully. Further research is needed, particularly regarding factors that can be influenced and that may alter the course of a patient's symptoms and the patient's eventual need for palliative sedation.

Objectives: To identify the prevalence and causes of neuropathic pain in Dutch nursing home residents; to establish the prevalence of painful and nonpainful diabetic polyneuropathy in a subsample of individuals with diabetes mellitus and central poststroke pain (CPSP) in a subsample of individuals who had a stroke; and to study the prescription of antineuropathic drugs., Design: A descriptive, retrospective, cross-sectional study conducted by analyzing medical records., Setting: Data were collected in 12 Dutch nursing homes., Participants: The data were derived from the medical records of 497 residents of chronic long-term stay and rehabilitation nursing home units., Measurements: Four groups were defined: actual (at some time in the previous year) neuropathic pain (ANP), possible neuropathic pain (PNP), neuropathic pain in the past (NPP), and no signs of neuropathic pain (NoNP)., Results: The prevalence of ANP was 10.9% (95% confidence interval (CI) = 8.4-13.8%) and of PNP was 5.6% (95% CI = 3.9-7.9%). The most common causes were CPSP and phantom limb pain. In the subgroup with diabetes mellitus, 6.3% had nonpainful diabetic polyneuropathy, 0.7% had painful diabetic polyneuropathy, and 0.7% had possible painful diabetic polyneuropathy. In the poststroke subsample, 4.7% were identified as having CPSP, and 5.2% were identified as possibly having CPSP. Within the ANP group, 68.5% of the residents received antineuropathic drugs on the day the medical records were examined; 48.1% used anticonvulsants., Conclusion: Dutch nursing home residents frequently experience neuropathic pain; therefore, neuropathic pain should receive more attention in frail elderly adults., (© 2012, Copyright the Authors Journal compilation © 2012, The American Geriatrics Society.)

Objectives: To study the practice of continuous palliative sedation (CPS) by Dutch nursing home physicians in 2007., Design: A structured retrospective questionnaire., Setting: Nationwide nursing home physician study in the Netherlands., Participants: One thousand two hundred fifty-four nursing home physicians received a questionnaire concerning their last case of CPS in 2007; 54% (n=675) responded., Measurements: Characteristics of CPS and requests for euthanasia were measured., Results: Three hundred sixteen patients were described. The majority had cancer or dementia. The most-reported refractory symptoms were pain (52%), anxiety (44%), exhaustion (44%), dyspnea (40%), delirium (24%), loss of dignity (18%), and existential distress (16%). In 98% of cases, CPS was aimed at symptom relief. Of patients with cancer, 17% had previously requested euthanasia. The mean starting dose of midazolam was 31 mg every 24 hours (range 0-240 mg/24 h), and the mean end dose was 48 mg every 24 hours (range 0-480 mg/24 h)., Conclusion: In addition to physical symptoms, anxiety, exhaustion, loss of dignity, and existential distress are often mentioned as refractory symptoms in the decision to start CPS by nursing home physicians. Furthermore, close to one in five patients with cancer had made a previous request for euthanasia. The dosage range of midazolam in this study fits the recommendations of the Dutch national guideline on palliative sedation, although international studies show smaller dosage ranges. Finally, prospective research about the acceptability and assessment of nonphysical symptoms as indications for CPS is recommended., (© 2010, Copyright the Authors. Journal compilation © 2010, The American Geriatrics Society.)

Residents report that they received inadequate teaching in palliative care and low levels of comfort and skills when taking care of dying patients. This study describes the effects of a problem-based palliative care course on perceived competence and knowledge in a representative Dutch cohort of residents in internal medicine. Before and after the course, we carried out a questionnaire survey and knowledge test in 91 residents. The results show that many residents felt they had limited competence or were incompetent when taking care of patients in the palliative care phase. This was particularly true with respect to communication concerning euthanasia and physician-assisted suicide or hastened death (86% and 85% respectively reported limited competence or incompetence). Participants reported that they received inadequate training in palliative care and believed that specific education would make them feel more competent. The number of times that residents were engaged in palliative care situations and the years of clinical experience had a positive influence on perceived competence. Participating in the course improved perceived competence and knowledge in palliative care. No correlation was found between perceived competence and knowledge of palliative care.

Background: Continuous sedation, contrary to euthanasia, has been increasingly accepted among medical professionals worldwide. In the Netherlands, a national guideline for continuous palliative sedation has been developed to contribute to the quality of palliative sedation practice. The present follow-up study investigated whether the practice of continuous sedation has changed after the introduction of this guideline., Methods: This study compared the practice of continuous sedation before and after the introduction of the guideline on December 7, 2005. A baseline measurement was performed between February 1, 2003, and May 1, 2005, with an enrollment of 492 physicians (medical specialists, general practitioners, and nursing home physicians). From January 1 to June 30, 2007, after the introduction of a national guideline for palliative sedation, a follow-up study was performed with the respondents of the baseline study. Physicians were asked to report on their last case of deep and continuous sedation in the past 12 months., Results: This study reports the results of the follow-up study and compares them to the results of the baseline study. The response rate was 69.3% (n = 341). Of these physicians, 160 reported a last case of continuous sedation in both the baseline and the follow-up studies. Physicians reported a significant increase in patient involvement in decision making, from 72.3% to 82.2%. Pain remained the most often reported reason to start sedation, whereas exhaustion as a reason for sedation increased. The use of benzodiazepines increased from 69.9% to 90.4%. In the first and second measurements, symptom-directed treatment during sedation was applied in 56% to 58% of the cases. In the second period, there was more often an explicit decision to not give artificial hydration during sedation (78.8% vs 56.3%). Of the physicians, 34.2% were convinced that sedation shortened the life of the patient because of dehydration., Conclusions: After the introduction of the guideline, physicians reported that changes in palliative sedation practice conform to the recommendations of this guideline. For example, benzodiazepines were used for sedation more frequently than before and patient involvement in the decision-making process improved. Possible effects of dehydration and the large variation in symptom-directed treatment during sedation deserve careful attention.

Purpose of Review: Palliative sedation, the intentional lowering of consciousness for refractory and unbearable distress, has been much discussed during the last decade. In recent years, much research has been published about this subject that will be discussed in this review. The review concentrates on: a brief overview of the main developments during the last decade, an exploration of current debate regarding ethical dilemmas, the development of clinical guidelines, and the application of palliative sedation., Recent Findings: Main findings are that palliative sedation is mostly described in retrospective studies and that the terminology palliative sedation in now common in the majority of the studies. In addition, life-shortening effects for palliative sedation are scarcely reported, although not absent. A number of guidelines have been developed and published, although systematic implementation needs more attention. Consequently, palliative sedation has become more clearly positioned as a medical treatment, to be distinguished from active life shortening., Summary: Caregivers should apply palliative sedation proportionally, guided by the symptoms of the patient without striving for deep coma and without motives for life shortening. Clinical and multidisciplinary assessment of refractory symptoms is recommended as is patient monitoring during sedation. Future research should concentrate on proportional sedation rather than continuous deep sedation exclusively, preferably in a prospective design.

Introduction: In order to facilitate GPs in their work and increase the possibilities for patients to remain at home, it is important to identify the obstacles which hinder the delivery of primary palliative care. From previous research we learned about some of the problems experienced by GPs. In this survey we aimed to identify the prevalence of such problems in providing palliative care and its determinants., Methods: The prevalence of obstacles and its determinants were identified by a questionnaire to 320 GPs in three regions of the Netherlands. Obstacles were grouped as follows: communication, organisation & co-ordination of care, knowledge & expertise, integrated care, time for relatives. The potential determinants were GP characteristics and expertise development activities., Results: The response rate was 62.3%. GPs experienced considerable obstacles in all aspects of palliative care. The most prevalent were: problems with bureaucratic procedures (83.9%), the time necessary to arrange home care technology (61.1%) and the difficulties accompanied with the wish or necessity to obtain extra care (56.3%). In general, more years of GP experience and the participation in (multidisciplinary) case discussions were associated with less perceived obstacles., Discussion: Based on the results of our survey policymakers and practitioners can plan and set priorities in handling the obstacles. There is a high necessity of firstly overcoming the barriers within organisation and coordination of care. Furthermore, our study can help in choosing the (additional) expertise needed in the future and in the realisation of the preferred expertise advancement activities.

In spite of recent advances in anti-cancer treatments, most adult cancer patients still ultimately die from their disease. There should therefore be free access to palliative care around the clock and seven days a week, for all cancer patients, as a fundamental human right. At present, the implementation of palliative care and patients' access to it are inconsistent across Europe and many other parts of the world. The World Health Organisation (WHO) made an important advance in 1986 by first defining palliative care and, then updating this definition in 2002. However, this definition could benefit from further refinement in order to reflect the increasing multi-professional specialisation in this subject, and to recognise the different models for delivering this type of care. We recommend that palliative care should be defined as follows: Palliative care is the person-centred attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimise the quality of life of patients and their families or close friends. Based on this definition, we propose two further types of palliative care which reflect the reality of how palliative care is actually delivered: Basic palliative care is the standard of palliative care which should be provided by all healthcare professionals, in primary or secondary care, within their normal duties to patients with life-limiting disease. Specialised palliative care is a higher standard of palliative care provided at the expert level, by a trained multi-professional team, who must continually update their skills and knowledge, in order to manage persisting and more complex problems and to provide specialised educational and practical resources to other non-specialised members of the primary or secondary care teams. If a patient has difficult symptoms which cannot be controlled by his/her current healthcare team, he/she has a right to be referred, and the current healthcare provider has an obligation to refer, to the local palliative care team. Important priorities to ensure the standardisation of, and uniform access to, palliative care for all cancer patients include: Integration of palliative care services with the primary care and oncology teams. Establishment of a specialised palliative care service in each major cancer centre. Establishment of educational programmes covering palliative care for undergraduates, oncologists, primary care team members and specialists training in palliative care. Support for research using appropriate methodologies to underpin the scientific basis of palliative care. Establishment of quality assurance programmes. Recognition of palliative medicine as a medical specialty. Establishment of academic centres of excellence with chairs of palliative medicine and palliative care nursing. Removal of unnecessary restrictions on all drugs which are proven to be of benefit in symptom control, especially improving access to strong opioids. Improved information for patients and family carers to allow them to make choices and exercise autonomy.