Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

Abstract

Importance and objective: Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.

Design: For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).

Setting and participants: Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations.

Main outcomes: Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.

Results: Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context.

Conclusions: Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

Keywords: geriatric medicine; medical ethics; palliative care; primary care.