Patient incompetence and substitute decision-making: an analysis of the role of the health care professional in Dutch law

Respecting autonomy in the end‐of‐life care of people with intellectual disabilities: a qualitative multiple‐case study

“…The Netherlands has a model of substitute decision‐making for incompetent people in which representatives (usually a close relative) have the legal power to make substitute decisions (Welie et al . ). Emotions ran high and relatives felt overpowered by the responsibility of taking weighty decisions at the end of life.…”

The factors affecting end‐of‐life decision‐making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study

“…Assessment of someone's capacity to decide is a part of the decision‐making process and is often not straightforward. In the Netherlands, it is the responsibility of the relevant healthcare professionals to assess this capacity where healthcare decisions are concerned (WGBO 1994) and to consult with the patient's representative as stipulated in the Contract of Medical Treatment Act (Welie et al . 2005).…”

“…A ‘representative’ (often a close or distant relative) is a legal entity carrying the power of substituted decision‐making for patients who lack capacity, although the roles and responsibilities of representatives in end‐of‐life decision‐making are not clearly defined. For example, physicians can disregard the wishes of representatives about medical decisions; but they would need to have clear reasons for doing so, such as their assessment that the course of action proposed by the representative would be harmful to the patient (Welie et al . 2005).…”

“…In both the Dutch and the UK models, relatives of the individual with ID have the important task of giving advice and especially of taking into account the patient's quality of life. Ultimately, however, it is the ID physician who is responsible for end‐of‐life decisions, not the representative (Welie et al . 2005).…”

“…Assessment of someone's capacity to decide is a part of the decision-making process and is often not straightforward. In the Netherlands, it is the responsibility of the relevant healthcare professionals to assess this capacity where healthcare decisions are concerned ( WGBO 1994) and to consult with the patient's representative as stipulated in the Contract of Medical Treatment Act ( Welie et al 2005). A 'representative' (often a close or distant relative) is a legal entity carrying the power of substituted decision-making for patients who lack capacity, although the roles and responsibilities of representatives in end-of-life decision-making are not clearly defined.…”