Facing the hardest conversations in myeloma care

In myeloma care, conversations about planning ahead for the end of life often emerge over time, shaped by patients’ evolving needs and priorities. For healthcare professionals, these moments can carry a significant emotional and professional burden, requiring careful judgement about timing, language and support.

Many of you will be familiar with the challenge of balancing honesty with compassion, and sensing when a patient or family member may be ready to talk – even if they are unsure where to begin.

Myeloma UK’s Planning ahead for the end of life Infopack, written in partnership with Marie Curie, is designed to support you at these points in care – not as something to hand over once but as a flexible resource that can help guide and sustain conversations when patients are ready.

Supporting conversations as they unfold

As a healthcare professional caring for those affected by myeloma, you play an essential role in supporting plans for end of life. We also know that many people affected by myeloma want information they can take away, reflect on in their own time, and return to again and again – a trusted, honest and sensitive resource that complements clinical conversations and allows discussions to continue outside appointments.

Our Infopack for Planning ahead for the end of life does just that.

Designed to complement your conversations and meet people wherever they are in their planning, the Infopack reduces the pressure to cover everything in a single discussion. It breaks the planning ahead process into manageable sections that reflect the realities of care and can be revisited as circumstances, priorities and questions change.

Crucially it also supports you in practice by providing a shared reference point for conversations that are often delayed or avoided.

A recent update reflects areas people affected by myeloma told us they wanted more support with:

• Talking to children and teenagers: A starting point for helping families talk to children about end-of-life plans, with signposting to more in-depth support from dedicated charities. This section can help people find the support they need for their family, no matter their needs and circumstances.
• Symptoms in the last weeks of life: Conversations about what the final weeks look like can be amongst the most challenging to initiate. This section provides clear, compassionate information about what to expect, helping reduce fear of the unknown, support preparation, and enable more open and timely conversations for patients and their loved ones.

By addressing practical decision-making alongside the emotional impact of planning ahead, this Infopack makes these conversations more manageable for everyone involved.

Shaped by experience, informed by expertise

This resource has been shaped and strengthened through the feedback of people affected by myeloma, healthcare professionals and Marie Curie – ensuring it reflects real experiences and practical need.

Myeloma UK partnered with Marie Curie to produce this Infoguide, combining patient insight and myeloma-specific expertise with specialist knowledge in end-of-life care. Content has been reviewed by a palliative care consultant and palliative care clinical nurse specialist, helping ensure it is clinically relevant, compassionate and meets the needs of patients and families.

Our Patient Information panel also responded positively to the updated Infopack, noting that sensitive and complex issues were handled with clarity and care.

Although written for people living with myeloma, many healthcare professionals may also find the Infopack helpful in reflecting the common questions and concerns that patients and families can find difficult to voice.

Helping to plan ahead – when it matters

Having the right resource available to support conversations and planning – at the right time – can make a meaningful difference for patients navigating challenging circumstances.

That’s why we invite you to order the free Infopack for your patients.

This Infopack is most effective when offered intentionally, at the point when an individual is ready to engage – avoiding somebody being overwhelmed, reading it unprepared in a waiting room.

Order the infopack – and a range of our other patient information resources.

Help deliver information when it matters most. More than an information resource, the Infopack gives people space to take things in gradually, return to key topics and use the guide to support ongoing conversations with you and those close to them.