Reasons for formulating an advance directive, changes in preferences over time, and effectiveness: a quantitative cohort-study with nested qualitative sub-studies
09 / 2005 - 09 / 2020
Website CCMO; Website EMGO
OBJECTIVES: To ensure appropriate end-of-life decision-making at the moment a patient becomes incompetent, it is important to know as much as possible about the patient s wishes concerning the end of life, especially because various studies have shown that the ideas that proxies and physicians have of what a patient wants differ from the patient s own wishes. Advance directives (ADs) may be an important way to improve end-of-life decision-making. This study seeks insight into the motives and expectations underlying the completion of an AD, whether wishes concerning the end of life change over time, and the role of ADs in situations in which they have become applicable. The cohort is also used to answer two related research questions. * Which problems and reasons form the basis for a wish to die, how did it develop, and did the people with a wish to die ever ask or consider asking for help for their problems, and do they think there are ways in which they can be helped? * How does the decision-making process after requests for euthanasia or physician-assisted suicide that did not result in euthanasia or physician-assisted suicide develop? METHODS: The study consists of a cohort of approximately 6500 people who have an AD, who will be followed for a period of at least three years. Different type of ADs a refusal-of-treatment document, the appointment of a healthcare representative, an advance euthanasia directive, and a care statement will be represented in the cohort. From this cohort relevant subgroups will be selected for nested qualitative sub-studies. * In-depth interviews with a subgroup of 30 people who recently formulated an AD. * In-depth interviews with a subgroup of 30 people who have recently, with their general practitioners, formulated an advance euthanasia directive for dementia. * In-depth interviews with a subgroup of 40-60 people who have a wish to die. * In-depth interviews with a subgroup of 30 people who themselves or whose relatives have requested euthanasia or physician-assisted suicide, but who did not receive it, and with the physician who received this request. * Retrospective study on effectiveness of ADs among proxies of deceased members of the cohort who were incompetent in the period before their death.