Background: Despite improvements in survival because of routine use of high-dose therapy, autologous stem cell transplant and the introduction of novel therapies, multiple myeloma is still incurable. Most patients will relapse and/or become refractory to treatment, with the disease becoming more aggressive and drug resistant over time, with shorter response intervals.  

Aim: To understand how people living with myeloma in three European countries report their understanding of and access to supportive and palliative care. 

Methods: A qualitative interview study with 36 working age people treated for myeloma in Poland, Czechia, and Germany. Analysis was inductive and thematic, informed by principles of intersectionality to inform intra- and cross-cultural comparisons alongside consideration of gender, age, and social class. 

Results:  Across all three countries, healthcare providers rarely spoke with patients about anything other than remission, and hence did not speak openly about palliative care. Hope for new treatments was the default position; yet patients were acutely aware of the incurable nature of myeloma, reflecting on other patients they had met previously and were aware had died, as well as their own mortality and doubtful longevity.  

Many respondents obliquely referred to their shortened lifespan and likelihood of dying from myeloma. Other respondents were much blunter in articulating their awareness alongside expressing concerns about not having optimal care and support.

Conclusion: Myeloma is not a unitary disease, nor is its experience singular across three European countries sharing borders with each other. Yet, timely integration of sensitive conversations about supportive and palliative care was not occurring in these countries, and is an urgent area for service enhancement.