38 ACP for people with advanced dementia living at old age homes- perspective of the surrogates

<h3>Aim</h3> The study aims to explore the views of surrogates who signed the ACP form to forgo life-sustaining treatment (LST) for people with advanced dementia (PWAD). <h3>Background</h3> ACP can be helpful for person-centered dementia care, but it is unfamiliar to the public in Hong Kong. ACP is a communication process where the patient can express preferences for future medical or personal care or make an advance medical directive (AMD) refusing LST. Without advance discussion of care preferences, surrogates are uncomfortable in making decisions to forgo LST for people with dementia (PWD), which can impact their quality of life. <h3>Methods</h3> This qualitative study involved 23 interviews with the surrogates who signed the ACP forms to forgo LST for PWAD. The interviews were transcribed and coded using a thematic content analysis framework. <h3>Results</h3> Emerging themes include (1) Pragmatic arrangement, (2) Meaning of suffering, (3) Emotional stress, (4) Decision-making, (5) Timing of ACP, (6) Family support and (7) ACP barriers. The overarching thematic arrangement of the process for ACP decision-making by surrogates of PWAD includes the trigger, internal struggles, barriers and facilitators, and the value-concordant outcome. The healthcare team initiated the ACP and the pragmatic arrangement for the EOL care program at the appropriate time, which could trigger the following steps. With this external demand to facilitate ACP, the surrogates face some internal struggles. Consensus-building exploration among family members can be seen as an enhancing factor. Addressing ACP barriers such as open and honest discussion instead of avoiding the subject, realistic approach to filial piety and birth order, etc., surrogates could make EOL care decisions for PWAD and focus on value-concordant dementia care as the outcome. <h3>Discussion</h3> Unawareness of ACP in early dementia care, thus missing the opportunity to ascertain the PWD’s own personal values and preferences, poses significant challenges to the surrogates in making proxy care decisions. This can be improved by earlier ACP initiation moderated by the healthcare team. More public education is warranted in Hong Kong with the new legislation in the advance medical directives. ACP should adopt a holistic family-centered approach with appropriate palliative care support, including effective communication. <h3>Unique Contribution</h3> Cultural practice in Hong Kong may impact the ACP process for people with advanced dementia. <h3>Implication</h3> Appreciating the convoluted factors involved in the decision-making process, the healthcare team needs to facilitate PWD and their families early enough to involve PWD with appropriate palliative care support.