Advance Directives cohort

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 wishes of the patient concerning the end of life, especially since it is known that proxies’ and physicians’ assessments are not very accurate. Advance directives are documents in which a person states his/her wishes with regard to the future use of medical interventions in the event that they are unable to participate in medical decisions regarding their (end-of-life) care, due to incompetence or loss of consciousness. The advance directive cohort, consisting of people with one or more of the 4 most common advance directives in the Netherlands, aims at getting insight in motives and expectations underlying the completion of an advance directive, whether wishes concerning the end of life change over time, and the role of advance directives in situations in which they have become applicable.

The cohort provides possibilities for facilitating studies about related subjects. In 2007, e.g. a study investigating what constitutes personal dignity at the end of life which is nested in the cohort has started.

Collaborations

There is collaboration with LASA. Collaboration gives the opportunity to compare groups of elderly with an advance directive with groups without an advance directive. This happens for example in a project where the relatives of people of  the cohort who deceased receive a written questionnaire focusing on the care of their next of kin in the last three months of life.

Results

To study advance directives comprehensively a cohort of about 5800 people with one (or more) of the 4 most common advance directives was formed in 2005. Approximately4600 people with an advance directive of the NVVE (a refusal of treatment, an advance euthanasia directive or a directive to appoint a representative) and approximately 1200 people with a will to live statement (explicitly against euthanasia) of the NPV. The respondents receive a written questionnaire every one and a half year. Above that, relevant subgroups can be selected for (mainly) qualitative sub-studies.

Almost have of the people with an AD, did not have a specific event that motivated them to formulate an AD. Of the people who did have so, it mostly was the illness or death of a next of kin, followed by experiences with a relative with dementia and being seriously ill themselves. Important reasons for people with one or more advance directives NVVE to formulate an AD is that they wanted to prevent suffering and dependency, that they want to bring about self-determination (%) and that they want to maintain their sense of dignity. For people with one or more advance directives of the NVVE, the top 5 of aspects important to quality of dying were taking decisions on treatment themselves, dignity, say goodbye to loved ones, determining the moment of dying and not being in pain. For people with awill to live statement the top 5 of aspects important to quality of dying were saying goodby to loved ones, dying at home, being able to prepare for death, dignity and taking decision on treatment themselves.

Contact information

B.D. Onwuteaka-Philipsen (b.philipsen@vumc.nl)