Challenges inherent in the practice of continuous palliative sedation until death appear to be particularly pervasive in nursing homes. We aimed to develop a protocol to improve the quality of the practice in Belgian nursing homes.
The development of the protocol was based on the Medical Research Council Framework and made use of the findings of a systematic review of existing improvement initiatives and focus groups with 71 health care professionals [palliative care physicians, general practitioners (GPs), and nursing home staff] identifying perceived barriers to the use of continuous palliative sedation until death in nursing homes. The protocol was then reviewed and refined by another 70 health care professionals (palliative care physicians, geriatricians, GPs, and nursing home staff) through 10 expert panels.
The final protocol was signed off by expert panels after 2 consultation rounds in which the remaining issues were ironed out. The protocol encompassed 7 sequential steps and is primarily focused on clarification of the medical and social situation, communication with all care providers involved and with the resident and/or relatives, the organization of care, the actual performance of continuous sedation, and the supporting of relatives and care providers during and after the procedure. Although consistent with existing guidelines, our protocol describes more comprehensively recommendations about coordination and collaboration practices in nursing homes as well as specific matters such as how to communicate with fellow residents and give them the opportunity to say goodbye in some way to the person who is dying.
Conclusions and Implications
This study succeeded in developing a practice protocol for continuous palliative sedation until death adapted to the specific context of nursing homes. Before implementing it, future research should focus on developing profound implementation strategies and on thoroughly evaluating its effectiveness.
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- EURO IMPACT. International variations in clinical practice guidelines for palliative sedation: A systematic review.BMJ Support Palliat Care. 2017; 7: 223-229
- European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care.Palliat Med. 2009; 23: 581-593
- Reflections on palliative sedation.Palliat Care Res Treat. 2019; 12 (117822421882351)
- Continuous deep sedation at the end of life and the “natural death” hypothesis.Bioethics. 2012; 26: 329-336
- Changing practices in the use of continuous sedation at the end of life. A systematic review of the literature.J Pain Symptom Manage. 2020; 60: 828-846.e3
- Intentional sedation to unconsciousness at the end of life: Findings from a national physician survey.J Pain Symptom Manage. 2013; 46: 326-334
- Justifying continuous sedation until death: A focus group study in nursing homes in Flanders,.Belgium. Geriatr Nurs. 2013; 34: 105-111
- The practice of continuous sedation until death in nursing homes in Flanders, Belgium: A nationwide study.J Am Geriatr Soc. 2014; 62: 1869-1876
- The challenge of providing palliative care in the nursing home: Part 1 external factors.Int J Palliat Nurs. 2006; 12: 260-267
- Research can improve care in the nursing home.J Am Med Dir Assoc. 2013; 14: 233-235
- Continuous deep sedation until death in nursing home residents with dementia: A case series.J Am Geriatr Soc. 2013; 61: 1768-1776
- General practitioners’ report of continuous deep sedation until death for patients dying at home: A descriptive study from Belgium.Eur J Gen Pract. 2011; 17: 5-13
- Palliative sedation therapy: A systematic literature review and critical appraisal of available guidance on indication and decision making.J Palliat Med. 2014; 17: 601-611
- Evidence-based guidelines–an introduction.Hematology Am Soc Hematol Educ Program. 2008; : 26-30
- Barriers in the decision making about and performance of continuous sedation until death in nursing homes.Gerontologist. 2020; 60: 916-925
- Developing and evaluating complex interventions: The new Medical Research Council guidance.BMJ. 2008; 337: 979-983
- A systematic review of quality improvement initiatives for continuous sedation until death.Palliat Med. 2021; 35: 670-682
- Palliatieve Sedatie—richtlijn voor de praktijk.(Available at:)http://www.pallialine.be/template.asp?f=rl_palliatieve_sedatie.htmDate: Published September 29, 2015Date accessed: April 28, 2021
- Increasing value and reducing waste by optimizing the development of complex interventions: Enriching the development phase of the Medical Research Council (MRC) Framework.Int J Nurs Stud. 2018; 79: 86-93
- Barriers and strategies in guideline implementation—a scoping review.Healthcare (Basel). 2016; 4: 36
- Belgian general practitioners’ perspectives on the use of palliative sedation in end-of-life home care: A qualitative study.J Pain Symptom Manage. 2014; 47: 1054-1063
- Trends in guideline implementation: A scoping systematic review.Implementation Sci. 2015; 10: 54
- Developing a checklist for guideline implementation planning: Review and synthesis of guideline development and implementation advice.Implement Sci. 2015; 10: 19
- Barriers to and facilitators for implementing quality improvements in palliative care—results from a qualitative interview study in Norway.BMC Palliat Care. 2016; 15: 61
- Preconditions for successful advance care planning in nursing homes: A systematic review.Int J Nurs Stud. 2016; 66: 47-59
- Challenge of implementing clinical practice guidelines. Getting ESMO’s guidelines even closer to the bedside: Introducing the ESMO Practising Oncologists’ checklists and knowledge and practice questions.ESMO Open. 2018; 3: e000385
Published online: April 27, 2021
Luc Deliens and Kenneth Chambaere are co–last authors.
Lenzo Robijn was a predoctoral fellow of the Research Foundation Flanders (FWO). The funding source had no role in the study design, collection, analysis or interpretation of data, or in the drafting of this article.
The authors declare no conflicts of interest.
© 2021 AMDA - The Society for Post-Acute and Long-Term Care Medicine.