Managing suffering at the end of life: a study of continuous deep sedation until death
Lead Research Organisation:
University of Nottingham
Department Name: Sch of Nursing, Midwifery & Physio
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Organisations
Publications
Anquinet L
(2012)
The practice of continuous deep sedation until death in Flanders (Belgium), the Netherlands, and the U.K.: a comparative study.
in Journal of pain and symptom management
Anquinet L
(2013)
Similarities and differences between continuous sedation until death and euthanasia - professional caregivers' attitudes and experiences: a focus group study.
in Palliative medicine
Anquinet L
(2015)
Descriptions by general practitioners and nurses of their collaboration in continuous sedation until death at home: in-depth qualitative interviews in three European countries.
in Journal of pain and symptom management
Bruinsma S
(2013)
Palliative sedation: a focus group study on the experiences of relatives.
in Journal of palliative medicine
Bruinsma SM
(2014)
Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries.
in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
Bruinsma SM
(2012)
The experiences of relatives with the practice of palliative sedation: a systematic review.
in Journal of pain and symptom management
Jayne Brown (Author)
(2012)
A Comparison of the Incidence and Characteristics of Sedation Practice in the End-of-Life Care of Cancer Patients in UK Hospice and Hospital Settings
in Palliative Medicine
Jayne Brown (Author)
(2012)
Nurses Beliefs, Attitudes and Behaviours in Palliative Sedation: Evidence from a Multicentre Study in the UK
in Palliative Medicine
Jayne Brown (Author)
(2012)
A Comparison of the Incidence and Characteristics of Sedation Practice in the End-of-Life Care of Cancer Patients in UK Hospice and Hospital Settings
in Palliative Medicine
| Description | Some dying people experience extreme symptoms or distress. In such circumstances, continuous sedation may be used to decrease consciousness until death occurs. In this study we: • Explored the history of the practice of continuous sedation until death and the ethical challenges reported in the literature, since 1945. • Interviewed 17 doctors and 25 nurses, in the context of 22 patient case studies, to understand how they make decisions to use sedation in end of life care and how they experience their practice. • Interviewed 8 bereaved relatives to understand their experience of end of life care. • Compared our data with parallel studies in Belgium and the Netherlands and undertook a secondary analysis of survey data in the three countries. Sedation in end of life care is associated with intense ethical conjecture. In spite of a move towards guidelines, the practice is defined in different ways, with international variation in implementation. Clinicians in the UK describe sedation as a 'side effect' of their intent to control symptoms, are concerned not to hasten death and seek to build consensus about the best path of action when managing suffering. UK nurses have significant responsibility for deciding when to commence medications prescribed in advance of symptoms and need education about the ethical dimensions of their practice. Bereaved relatives perceive adequate symptom control as an essential aspect of protecting the person's dignity. There are some similarities as well as important differences between UK, Dutch and Belgian practice. |
| Exploitation Route | The project is making significant contributions to empirical understanding in interdisciplinary end-of-life care research across the disciplines of sociology, medicine, bioethics and nursing. It can enable cross cultural understanding, since it was undertaken in parallel with studies in Belgium and the Netherlands, building on an ESRC exchange fellowship in 2003. We have demonstrated systematic variation in end of life care sedation practice and its conceptualization in the UK, Belgium and the Netherlands. We have highlighted a gap in understanding about nurses' practice, with new funding secured for a study of UK nurses' use of 'anticipatory prescriptions' in end of life care. This is linked to applications for knowledge transfer projects dedicated to ethical educations for nurses in end of life decision-making, to address shortcomings highlighted by the National Review of the Liverpool Care Pathway. In contributions to theory, we have deconstructed the notion that there is a unitary phenomenon of 'continuous sedation until death', thus enabling cross cultural exchange in what are otherwise frequently contentious debates about practice and policy. From a bioethical perspective, the study can inform analysis of differences between continuous sedation and euthanasia and enabled further elaboration of the notion of 'natural death'. Our work contributes to methodological approaches in the study of end-of-life decision-making, especially to applications of case study research, recruitment and interviewing of bereaved relatives, and secondary analysis of cross cultural survey data. |
| Sectors | Healthcare |
| Description | Through the presentations and publications our research is having an impact upon the international and interdisciplinary community of researchers and academics engaged in palliative and end of life care research across bioethics, medicine, social sciences and nursing. These include those involved with the The project has had societal impact in the following areas: 1. Raising awareness among practising clinicians in Europe of the variability associated with sedation in end of life care and enabling debate about the applicability of current guidelines and the constraints operating in different care settings that militate against their use. 2. Developing understanding among practicising clinicians of pertinent ethical issues involved in making end of life care decisions related to sedation, particularly where patients lack capacity. 3) Providing insights for practitioners and national policy makers into use of the Liverpool Care Pathway and evidence relating to outcomes of using integrated care pathways in end of life care, informing a national review of the Liverpool Care Pathway and resultant recommendations for national policy and practice. 4) Enabling national and European policy makers' understanding of key issues in end of life decision-making for people who lack capacity and for whom sedation for symptom control at the end of life is required. 5) Raising awareness of the gap in policy surrounding nursing practice in anticipatory prescriptions in end of life care and the need to undertake applied research informing interventions to improve community palliative care practice. |
| First Year Of Impact | 2013 |
| Sector | Healthcare |
| Impact Types | Societal,Policy & public services |
| Description | Rapid review of evidence about integrated care pathways in end of life care |
| Amount | £6,432 (GBP) |
| Organisation | National End of Life Care Programme |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2012 |
| End | 02/2013 |
| Description | Understanding the role of nurses in decisions to use anticipatory prescriptions to manage symptoms and distress in the last days of life : a prospective community based case study using mixed methods |
| Amount | £160,000 (GBP) |
| Funding ID | C30627/A12557 |
| Organisation | Marie Curie |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2011 |
| End | 05/2014 |
| Description | (Lecture, Ghent Bioethics Institute) Understanding the role of (community) nurses in decisions to use anticipatory prescriptions to manage symptoms and distress in the last days of life : perspectives from the UK |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture This resulted in an invitation to contribute a book chapter to a book published by Oxford University Press |
| Year(s) Of Engagement Activity | 2011 |
| Description | (talk, EURO-IMPACT PhD training day) Understanding the role of nurses in decisions to use anticipatory prescriptions to manage symptoms and distress in the last days of life : a prospective community based case study using mixed methods |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Lecture to for PhD students: EU 7th FP EURO IMPACT "the European Intersectorial and Multi-disciplinary Palliative Care Research Training" A Marie Curie Initial Training Network (2010-2014) International exposure of the study design |
| Year(s) Of Engagement Activity | 2011 |
| Description | A window on suffering : using qualitative research to study practices surrounding palliative sedation for refractory symptoms |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented at a clinical study day for regional practitioners Not known |
| Year(s) Of Engagement Activity | 2010,2011 |
| Description | Anticipatory prescribing: 'Just in Case' boxes to support patients to die at home |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | presented at two training events on Nurse Prescribing - Non Medical Prescribing in End of Life Care provided by Health Care Conferences to an audience of nurse prescribers. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.healthcareconferencesuk.co.uk/nurseprescribing-in-end-of-life-care |
| Description | Comparing continuous sedation until death and euthanasia: professional caregivers' attitudes and experiences |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A presentation as part of an organised symposium at the World Congress on Bioethics Informed a paper published in the American Journal of Bioethics |
| Year(s) Of Engagement Activity | 2013 |
| Description | Continuous sedation and euthanasia compared: physicians' and nurses' perspectives. A focus group study |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A poster presentatiion at an international palliative care conference Not known |
| Year(s) Of Engagement Activity | 2013 |
| Description | Continuous sedation and patients' preferences: findings from the UNBIASED study |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Invited lecture to the 13th World Congress on Palliative Care Generated discussion, requests for further information and plans for future research activity |
| Year(s) Of Engagement Activity | 2013 |
| Description | Continuous sedation in end of life care for cancer patients : a study in three European countries |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | Dissemination event with research participants and health care practitioners Generated discussion and requests for information |
| Year(s) Of Engagement Activity | 2013 |
| Description | Continuous sedation until death for cancer patients nearing death with psychological and existential suffering - A qualitative study |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | A workshop presentation at an Oncology research seminar Not known |
| Year(s) Of Engagement Activity | 2011 |
| Description | Ethiek in kwalitatief onderzoek |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A paper presented at a worshop to develop research capacity in palliative care Not known |
| Year(s) Of Engagement Activity | 2012 |
| Description | Experiences of relatives with palliative sedation |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | A seminar presentation to disseminate findings to health care professionals Not known |
| Year(s) Of Engagement Activity | 2011 |
| Description | Factors that influence the use of continuous sedation by physicians and nurses |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Presentation as part of an organised symposium at the World Congress of Bioethics Informed a publication in a peer reviewed journal |
| Year(s) Of Engagement Activity | 2013 |
| Description | Focusgroepen over palliatieve sedatie |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A paper presented by a PhD student at an event to build capacity in palliative care research Not known |
| Year(s) Of Engagement Activity | 2011 |
| Description | Kwalitatief onderzoek - de UNBIASED studie |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A paper given by a doctoral student at an event to build capacity in palliative care research Not known |
| Year(s) Of Engagement Activity | 2012 |
| Description | National Cancer Research Institute Conference- Poster Presentation Nurses Decisions to Use Anticipatory Medications' |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Type Of Presentation | poster presentation |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster generated discussion Not known |
| Year(s) Of Engagement Activity | 2015 |
| Description | Nurses need more support when using anticipatory prescriptions |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A blog post to highlight findings from a Research study funded by Marie Curie which explored nurses' roles in the use of anticipatory prescriptions in end of life care |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.mariecurie.org.uk/blog/nurses-and-anticipatory-prescriptions/145256 |
| Description | Palliative sedation in an international perspective: WORKSHOP |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | workshop presentation to an interdiscplinary audience Not known |
| Year(s) Of Engagement Activity | 2011 |
| Description | Plenary lecture Quality of Palliative Care at Home |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Generated discussion and educated audience Increase in requests for publications/ information |
| Year(s) Of Engagement Activity | 2014 |
| Description | Practice with sedation in other countries |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture at a conference on palliative sedation hosted by the National Council for Palliative Care Collaborative research in related areas |
| Year(s) Of Engagement Activity | 2010,2011 |
| Description | Results from the UNBIASED study: (UK - Netherlands - Belgium International SEDation study) reported practices of physicians and nurses in three European countries. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster presentation to the 13th World Congress on Palliative Care |
| Year(s) Of Engagement Activity | 2013 |
| Description | Seminar presentation Marie Curie Palliative Care Research Department UCL |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | I was invited to present the results of the study at the inaugural seminar of the Research Dept for Palliative Care at UCL. Around 70 people attended and the lecture is also available as a podcast. There was extensive discussion afterwards about research and practice implications. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.ucl.ac.uk/mcpcrd/news-and-events/september2017seminar |
| Description | Stakeholder dissemination event anticipatory prescribing project |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This resulted in detailed discussion about the need to support nursing practice in end of life care It contributed to a request to supply information for the national review panel of the Liverpool Care Pathway |
| Year(s) Of Engagement Activity | 2013 |
| Description | The UNBIASED study presentation to the EAPC |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Dissemination of study aims and design to the research network of the European Association for Palliative Carte requestS FOR PARTICIPATION |
| Year(s) Of Engagement Activity | 2010 |
| Description | The experiences of relatives with palliative sedation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A conference paper presented as part of an organised symposium at an international Bioethics conference Not known |
| Year(s) Of Engagement Activity | 2013 |
| Description | The use of sedatives in end-of -life care: legislation and practice |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A presentation at a British Sociogical Association event Not known |
| Year(s) Of Engagement Activity | 2012 |
| Description | Understanding the role of nurses in decisions to use anticipatory prescriptions to manage symptoms and distress in the last days of life |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited speaker at the Annual Marie Curie Palliative Care Research Conference 'Round the clock: Making 24/7 palliative care a reality' on 19th October 2016 National conference. Presenting the findings of a study to explore nurses' roles in anticipatory prescribing at end of life |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.mariecurie.org.uk/research/annual-research-conference |
| Description | Valkuilen in de inclusie van respondenten in de UNBIASED studie |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | A presentation at a workshop for doctoral students studying palliative care This generated discussion about methodological issues and problems and how to address them in doctoral research in palliative care |
| Year(s) Of Engagement Activity | 2012 |