End of life decision making - Advance care planning/requests for hastened death

Abstract

This paper discusses end-of-life decision making, focusing on advance care planning (ACP) which may enable patients with neurodegenerative conditions to express their preferences and wishes. In some countries where this is legally permitted, this may involve requests for hastened death. All neurodegenerative illnesses are marked by progressive difficulties with cognition and/or communication. While ACP is recommended, there is no consensus on definitions or implementation. Several methods for undertaking ACP have been developed in North America and Australia. Hastened death may involve various types of assisted dying and is permitted in very few countries. We conducted a five round international Delphi study to develop consensus on ACP. A total of 109 experts (82 from Europe, 16 from North America, and 11 from Australia) rated ACP definitions and 41 recommendations. The recommendations concern five domains of ACP: elements (12 recommendations), roles and tasks (6 recommendations), timing (3 recommendations), policy and regulation (5 recommendations), and evaluation (15 recommendations). The panel’s agreement per definition or recommendation ranged from 74%-100%. ACP was defined as “enabling individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate”. The scope of ACP was defined to be broader than the physical domain alone, and may include psychological, social and spiritual domains. ACP enables patients to define, discuss, record and review goals and preferences for future medical treatment and care, including advance directives.