Jeroen Hasselaar

Changed patterns in Dutch palliative sedation practices after the introduction of a national guideline.

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.

Education, implementation, and policy barriers to greater integration of palliative care: A literature review

Background: Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. Aim: To provide an overview of the barriers to more widespread palliative care integration in the United States. Design and data sources: A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care’s National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization’s Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. Results: We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine–trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. Conclusion: We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness.

Dealing With Delicate Issues in Continuous Deep Sedation Varying Practices Among Dutch Medical Specialists, General Practitioners, and Nursing Home Physicians

BACKGROUND This article examines delicate issues in continuous deep sedation (CDS) from the perspectives of different types of physicians. The following sensitive issues involved in CDS were investigated: artificial hydration, sedation for nonphysical discomfort, the relationship between CDS and euthanasia, and patient involvement in decision making for CDS. METHODS A structured retrospective questionnaire concerning the most recent case of CDS during the past 12 months was sent to a sample of medical specialists (n = 727), general practitioners (n = 626), and nursing home physicians (n = 111). RESULTS Response rates were 26.4% for medical specialists, 37.4% for general practitioners, and 59.5% for nursing home physicians. Indications for CDS differed among the types of physicians. General practitioners (25.0%) were most often confronted with a patient request for euthanasia before starting CDS compared with medical specialists (8.9%) and nursing home physicians (6.5%). A decision to forgo artificial hydration in CDS was more often made by nursing home physicians (91.3%) compared with medical specialists (53.7%) and general practitioners (51.2%). Shorter survival was found for patients sedated for nonphysical discomfort (vs other patients) by general practitioners. Among all patients, 74.5% were involved in decision making before the start of CDS. CONCLUSIONS The present study demonstrates notable differences in CDS practice among various types of physicians. To what extent this is related to different patient populations or to different expertise requires further investigation. The use of CDS for nonphysical discomfort calls for critical examination to avoid ambiguous practice.

Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: A systematic literature review of European guidelines and pathways

BackgroundDespite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review.MethodsSearch results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed.ResultsThe search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients’ goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment.ConclusionThe results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.

The practice of continuous palliative sedation in elderly patients: a nationwide explorative study among Dutch nursing home physicians.

OBJECTIVES: To study the practice of continuous palliative sedation (CPS) by Dutch nursing home physicians in 2007.

When cancer symptoms cannot be controlled: the role of palliative sedation.

Purpose of reviewPalliative 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 findingsMain 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. SummaryCaregivers 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.

Palliative medicine update: a multidisciplinary approach.

Palliative medicine is a young specialty that is officially recognized in relatively few countries. The World Health Organization published an adapted definition in 2002, describing palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life‐threatening illness. When the accent is shifting from curative to palliative, the goal of management is the maintenance or improvement of the patients quality of life. The different dimensions of palliative care and the multitude of types of care to be provided require a multidisciplinary, well‐functioning team, effective communication and a clear task division between primary and hospital care.

Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study

BackgroundAccording to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries.MethodsIn 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards.ResultsIn all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers.ConclusionsAlthough all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe.

Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease

BackgroundIntegrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe.MethodsCochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used.Results14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place.ConclusionBased on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.

Development of a set of process and structure indicators for palliative care: the Europall project

BackgroundBy measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries.MethodsAs no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe.ResultsThe searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework.ConclusionsWe developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.