Cross-cultural acceptability of interventions that may increase control at the end of life in people with dementia

Care for people with dementia is one of public health top priorities. Interventions should meet the needs of people with dementia and their caregivers across the course of the illness. In dementia at the end of life, cognitive and physical decline imply that control is typically lost. This work package is a part of the CONT-END project and will examine control in the context of three types of emerging interventions which contain a potentially controversial element of striving for control in the process of dying with dementia. In this work package we focus on acceptability of interventions in the context of end of life with dementia.

The interventions under study are two forms of advance care planning: (1a) detailed advance treatment orders versus (1b) goal setting and coping based advance care planning; (2) technology for symptom monitoring when unable to self-report; and (3) euthanasia. The main goal is to examine if and when people with dementia, their family caregivers, and physicians, find the interventions, explained with video vignettes, acceptable for people with dementia. Acceptability and factors associated with acceptability will be studied in six countries: the Netherlands, Germany, Switzerland, Israel, Japan and the United States.

A total sample size of 900 participants is needed to assess associations of outcome with country and respondent type in case of an unfavorable outcome distribution (if only 10% find an intervention (un)acceptable). The total number is achieved with 300 people with dementia participating, 300 family caregivers, and 300 physicians; 150 participants from each of the six countries, 50 per study group.

We purposefully selected four interventions, three groups with different roles and six countries because we expect acceptability to differ within these dimensions. There are specific hypotheses (H) for part of the possible contrasts. We will explore other contrasts, and also which demographics, variables indicating life view such as religion, and variables indicating personality are associated with acceptability of the interventions. In particular, we test the following hypotheses:
A. Types of interventions
H1. The two forms of advance care planning (which offer limited control over future care and treatment) will be most often acceptable among the four interventions under study.
H2. Euthanasia (which strongly controls the end-of-life timing and context) will be least often acceptable among the interventions under study.

B. Types of interventions by groups with different roles with respect to the person with dementia (respondent type)
H3. The advance care planning intervention with detailed advance treatment orders (1a) will be most often acceptable in physicians.
H4. Euthanasia will be least often acceptable in physicians.
We do not propose hypotheses on acceptability rated by people with dementia compared to the other groups because not enough is known about their views on this matter to formulate specific hypotheses.

C. Types of interventions by country
H5. The advance care planning intervention with detailed advance treatment orders (1a) will be most often acceptable in countries where patients have high autonomy in decision making about medical procedures and care, and where people may feel they need a defense against medical overtreatment, while sanctity of life is not necessarily a dominant principle, in particular, the USA.
H6. Technology for symptom monitoring when unable to self-report such as use of cameras in the dying phase will be most often acceptable in technology-minded countries (Japan, Israel, and the USA).
H7. Euthanasia will be most often acceptable in countries that have euthanasia or physician assisted suicide regulation already in place for a while (in particular the Netherlands and Switzerland) and the least acceptable in countries where ending life is highly controversial (Germany, Israel and Japan).

D. Types of intervention by other characteristics
H8. Demographics, variables indicating life view such as religion, attitudes regarding life-prolonging treatment and death and dying, and variables indicating personality such as coping strategy are associated with acceptability of the interventions that differ in the extent to which they increase control over the end of life of people with dementia.

The study consists of a one-time assessment. Data will be collected per participating country, starting with the Netherlands.

Not applicable.