Starting the Conversation: Evaluating Advance Care Planning Education for Older Adults Living with Myeloma and Their Carers

Introduction

Advance care planning (ACP) enables patients to consider and communicate their preferences and priorities for future care. A baseline survey of 25 patients and 20 carers attending a community myeloma support group identified an unmet educational need, with approximately one-third expressing a desire for information about what may happen in the future and planning their future wishes. In response, a group-based ACP education workshop was developed. This service evaluation explored participants' previous experiences of ACP, barriers to discussion, and the acceptability and perceived impact of the workshop.

Method

An ACP workshop was delivered to a community myeloma support group in August 2025. Sixteen individuals attended (12 patients and four loved ones). Attendees were invited to complete a post-session questionnaire exploring previous ACP knowledge and discussions, confidence, perceived barriers, preferred timing and individuals for ACP conversations, future planning intentions and overall workshop experience. Nine questionnaires were returned (56% response rate).

Results

Seven respondents (78%) had previously received some ACP information but wanted more, while three (33%) reported no confidence in their understanding of ACP before the workshop. Seven (78%) had never discussed ACP with a healthcare professional, and eight of nine identified barriers to ACP discussion.

Following the workshop, six respondents (66%) felt it would help them discuss future wishes with loved ones. Among those wishing to discuss ACP with their healthcare team, all reported feeling more confident about initiating the conversation. Eight (88%) felt the workshop provided the right amount of information. Preferred discussion partners included loved ones (88%), nurse specialists (55%) and consultants (44%).

Conclusion

A group-based ACP education workshop was acceptable to patients with myeloma and their loved ones and identified important barriers to future-care discussions. Support-group education may provide a valuable patient-centred setting for introducing ACP and supporting patients to initiate conversations with loved ones and healthcare professionals