Luc Deliens PhD MA MSc is a medical sociologist, Director of the End-of-Life Care Research Group of Ghent University & VUB Brussels and Professor of Public Health and Palliative Care at the EMGO+ Institute, VU University Medical Centre Amsterdam. Since 2000 in Brussels he has gradually developed a unique multidisciplinary research team of about 30 researchers with clinical (MD and RN), sociological, psychological and ethical backgrounds (www.endoflifecare.be). He has successfully supervised 15 PhD students and is currently supervising 26. He has published more than 200 journal articles and over 100 book chapters or reports. In 2009, he was appointed to be a member of the Royal Academy of Medicine of Belgium, the first person to represent palliative and end-of-life care, and one of the few con-clinicians. In 2011, he was appointed Co-Chair of the EAPC Research Network of the European Association for Palliative Care (EAPC) (www.eapcrn.org). He has received several scientific awards for his research, e.g. in 2005 the three-yearly Prize De Beys, which is considered by the King Baudouin Foundation as the Belgian Nobel Prize for Social Medicine and, with a value of €150.000, one of the most prestigious scientific awards in medical research in Belgium. Furthermore, his post docs and PhD fellows have also received several awards, e.g. the laureate of the EAPC Young Investigators Award 2010 (Joachim Cohen) and 2nd prize of the EAPC Young Investigators Award 2011 (Judith Rietjens).
He has published extensively on end-of-life care including palliative care and end-of-life decision-making in leading general medical journals (e.g. 1xNew Eng J Med, IF47.050; 5xLancet, IF30.758; 1xJAMA, IF28.899; 3xBrit Med J, IF13.660; 6xArch Int Med, IF9.813; 2xCan Med Ass J, IF7.271), leading palliative care journals (e.g. >20xJ Pain Symptom Manag, >20x Pal Med, J Pal Med) and in other specialised journals in the fields of public health (e.g. Med Care, J Epidemiol Comun Health), health care sciences & services (e.g. Med Decis Making, Health Serv Res), geriatrics & gerontology (e.g. JAGS, J Gerontology) and oncology (e.g. 2xJ Clin Onco, IF17.793). About 95% of his papers have been published in journals ranking in the upper half of their domain, about 50% in Q1 (upper 25%), and about 20% in D1 (upper 10%). His work has been supported by a grant income of over €16,000,000 in the last ten years from different funders, including the EU 5th to 7th FP, FWO Research Foundation, Flanders, IWT the Flemish Government Agency for Innovation by Science and Technology, DWTC the Belgian Federal Ministry of Science Policy, VWS the Dutch Ministry of Public Health, ZONMW the Netherlands Organisation for Health Research and Development, King Baudouin Foundation and other leading medical and health charities, mainly in the areas of public health, cancer and dementia.
He is leading on-going local and national studies (e.g. FLIECE, an interuniversity 2.5 M€ IWT-SBO project to improve end-of-life care in Flanders; www.endoflifecare.be/fliece). His present research is focused on palliative care and end-of-life decision-making and structured along three research lines: public health (e.g. place of death, care setting transitions, un-wished-for and avoidable hospitalisation at the end of life, end-of-life decisions and attitudes of the public towards palliative care and end-of-life decisions), cancer (e.g. early diagnosis of palliative care needs, palliative care quality indicators, end-of-life communication), and non-cancer (e.g. palliative care in nursing homes, advance care planning, Liverpool Care Pathway on acute geriatric wards).
Internationally, he is coordinator of the EU 7th FP EURO IMPACT European Intersectorial and Multi-disciplinary Palliative Care Research Training, a Marie Curie Initial Training Network (www.endoflifecare.be/euroimpact) (2010-2014); the EURO SENTIMELC study on end-of-life care trajectories in Belgium, the Netherlands, Italy and Spain (2009-2012); and the IPod study, which is the first worldwide place of death study including Mexico, New Zealand, Australia, USA, Canada, Japan, South Korea, and several European countries (2010-2015). Furthermore he participates in the UNBIASED study on palliative sedation in the UK, the Netherlands and Belgium, coordinated by Nottingham University; the longitudinal EPCCC study on palliative care cancer symptoms in Europe, coordinated by the University of Trondheim in Norway; and was involved in the PRISMA project (EU 7th FP) on outcome measures in palliative care coordinated by King’s College London; and in the EURELD study (EU 5th FP) on end-of-life decisions in Europe, coordinated by the Erasmus MC university Rotterdam. As Co-Chair of EAPC RN and member of the Scientific Committee, he co-organises the EAPC RN congresses and seminars; he is Associate Editor of BMC Geriatrics, member of the Advisory Editorial Board of Palliative Medicine, member of the Advisory Committee for the National Cancer Research Institute – funded by Supportive and Palliative Care ‘Cancer Experiences’ (CECo), UK, coordinated by Lancaster University - and member of the Scientific Advisory Group to the new WHO guide Palliative Care for the Older People: Better Practice, coordinated by King’s College London. He is also member of several review commissions for grant applications, e.g. for the Fund for Scientific Research Flanders, and member of the Steering Committee of the NRP67, a 15 M CHF national research program on “end of life” of the Swiss National Science Foundation (2011-2017).
Palliative Sedation and Euthanasia
Abstract
Despite advances in palliative care, many terminally ill cancer patients experience some level of suffering when near their end of life. When such suffering becomes unbearable and is uncontrollable or untreatable through conventional therapies and optimal palliative care, there are two option to relieve the patient from the unbearable suffering, namely palliative sedation and euthanasia. Palliative sedation, the deliberate lowering of consciousness, is legal in all countries in the world and euthanasia, the administration of lethal medication by the physician at the explicit request of the patient, is legalized in a very limited number of countries in Europe, namely Belgium, the Netherlands and Luxembourg. Furthermore physician assisted suicide is also legal in the US states of Montana, Oregon and Washington, and in Switzerland, Europe.
Palliative sedation can vary from mild to deep and can be used intermittently or continuous. One of the most far-reaching and controversial types of palliative sedation is continuous sedation until death. Beside the presence of unbearable and persistent, or ‘refractory’, symptoms for the use of sedation, most sedation guidelines state that the patient’s disease should be advanced and without prospect of improvement, with death expected within hours or days. Wherever possible, the patient should be actively involved in decision-making and give consent for the initiation of sedation. If the patient is no longer competent, the physician should consult the patient’s relative. The purpose of sedation should be symptom relief and not the hastening of death. Although some studies have reported on incidence figures of palliative sedation, there is little in-depth insight in the circumstances in which physicians resort to the use of continuous sedation until death for terminally ill patients exists.
Euthanasia should enable the patient to die within minutes, and the physician has to conform with strict due care requirements. The decision making for euthanasia has been fixed within the patient-physician relationship, and (societal) control has been established within a review procedure after death. A physician may only perform euthanasia on a patient in his care. He must know the patient well enough to be able to assess whether the request for euthanasia is both voluntary and well-considered, whether his/her medical situation is without prospect of improvement, and whether his/her suffering is unbearable. The patient requesting for euthanasia has to be well informed about his/her situation (diagnoses and prognoses) and all possible therapeutic measures which can be considered. The euthanasia wish of the patient have to be a written statement and, if involved, the consultation of the treatment team (nurses, etc.) and other persons designated by the patient are explicitly required. Before the attending physician complies with the request for euthanasia, he must first consult a colleague who is neither connected with him nor involved in the treating of the patient.
This presentation will review the incidence of palliative sedation and euthanasia and review recent studies on these highly debated end of life practices.
