The CONT-END program

Attempts to CONTrol the END of life in people with dementia: Two-level approach to examine controversies (CONT-END).

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Brief description

The CONT-END programme has three parts ('Work Packages'):

1. Perspectives on what types of care are acceptable at the end of life for patients with dementia
2. Effects of advance care planning in dementia
3. Decisions in research about end-of-life care

Researchers

Jenny T. van der Steen, MSc, PhD, FGSA
Xu Jingyuan, MSc
Bahar Azizi, MSc
Tom van Drimmelen, MSc
Willemijn Tros, MD
Hanneke J.A. Smaling, MSc, PhD
Mandy Visser, MSc, PhD
Prof. Jacobijn Gussekloo, MD, PhD
Prof. Ria Reis, MA, PhD
Prof. Wilco P. Achterberg, MD, PhD
 

Participating organisations

Department of Public Health and Primary Care, LUMC, Leiden
General practitioners and memory clinics in the Netherlands
University of Missouri - Columbia, Missouri, USA
University of Bonn, Bonn, Germany
Palliative Care Center Hildegard, Basel, Switzerland
University of Haifa, Haifa, Israel and Bar Ilan University, Ramat Gan, Israel
Tohoku University, Sendai, Japan               

Contact

Dr. J.T. van der Steen, principal investigator

Start study

1 December 2018 

Expected completion

30 November 2023 

Description

In dementia at the end of life, cognitive and physical decline imply that control is typically lost. CONT-END will examine perspectives on future care in Work Package 1. We are studying four interventions which contain a controversial element of striving for control in the process of dying with dementia. The interventions are: 1) and 2) approaches of advance care planning, 3) technology to monitor distress at the end of life, and 4) euthanasia. In six different countries, we examine if and when people with dementia, family caregivers, and physicians find the interventions, as shown in animation videos, acceptable.

Work Package 2 examines the effects of advance care planning on quality of life of patients with dementia and on how family members experience the decision-making process. We train general practitioners in advance care planning, either with an approach aimed at making concrete treatment decisions, or in an approach focused on care goals and coping with an uncertain prognosis. We also monitor people with dementia when they are admitted to a nursing home. We will investigate who benefits most from which approach of advance care planning.

Further, in the CONT-END project, we also examine the use of technology to identify and observe symptoms and signs of discomfort and distress in the last phase of life. In Work Package 1, we will show Bispectual Index Monitoring (BIS) to people with dementia and their family caregivers and ask them whether they find using BIS acceptable for the purpose of measuring how awake of conscious someone with dementia is. We will also provide an overview of literature on monitoring technologies that may be applicable for people at the end of life.

In Work Package 3, we examine our and other research about the end of life. We explore researchers' decision making; how researchers exercise discretion when navigating ambiguity in research practice. We expect that this will greatly benefit the quality and transparency of CONT-END. We also intend to develop a method that provides researchers with a way to reflect on their work, from developing a research idea to publishing the results.

In collaboration with

Prof. Dr. Lex M. Bouter, Professor of Methodology and Integrity, UMC Amsterdam location VUmc, Department of Epidemiology & Biostatistics   

Ethics Advisory Committee

Prof. Dick L. Willems, MD, PhD, Amsterdam University Medical Centers, Amsterdam (chair)

Associate Professional Practice Professor Lea C. Brandt, OTD, MA, OTR/L, University of Missouri-Columbia, School of Medicine, MU Center for Health Ethics, Columbia MO, USA

Tenzin Wangmo, PhD, PD, Institute for Biomedical Ethics, Universität Basel, Basel, Switzerland

Professor Annette Dufner, PhD, University of Bonn, Institute for Science and Ethics, Bonn, Germany

Associate Professor Naoka Hara, RN, MSc, PhD, Joetsu City, Niigata Prefecture, Japan, and Executive Director, Alzheimer's Association Japan, Kyoto City, Kyoto Prefecture, Japan

Financing

European Research Council (ERC) Consolidator grant, Grand agreement ID 771483

Publications

Azizi B. Nieuw onderzoek advance care planning dementie [New study advance care planning dementia]. Huisarts Wet 2019;62. https://doi.org/10.1007/s12445-019-0393-3

van der Steen JT, ter Riet G, van den Bogert CA, Bouter LM. Causes of reporting bias: a theoretical framework. F1000Research 2019, March 12;8:280. https://doi.org/10.12688/f1000research.18310.2

van der Steen JT, Azizi B, Nakanishi M, Shinan-Altman S, Mehr DR, Radbruch L, Gaertner J, Werner P, Achterberg WP, Tilburgs B, Smaling HJA. Cross-cultural acceptability of interventions at the end of life in dementia: Video vignette study design and pilot evaluation (ERC CONT-END WP1). Dementia-Cross-cultural investigations. Alzheimer's Dement 2020;16(Suppl7):e041542. https://alz-journals.onlinelibrary.wiley.com/doi/epdf/10.1002/alz.041542

Sternberg SA, Shinan-Altman S, Volicer L, Casarett DJ, van der Steen JT. Palliative care in advanced dementia: Comparison of strategies in three countries. Geriatrics 2021,6,44. https://doi.org/10.3390/geriatrics6020044