Unmet Palliative Care Needs in Patients With Multiple Myeloma


The emergence of novel therapies has significantly altered the treatment landscape of multiple myeloma (MM), allowing patients to live longer and experience more time in remission.1 Despite the improvement in treatment options, however, providing optimal care to patients with MM at the end of life (EOL) represents an unmet need.
Patients with MM typically have high rates of emergency department visits and hospital admissions, contrasting with low rates of palliative care and hospice service use.2 Optimizing quality of life (QOL) while continuing to provide potentially life-prolonging treatments can be a challenging clinical scenario. While early integration of palliative care interventions has been associated with improved pain control, decreased caregiver burden, and less aggressive EOL health care use,3 there are a number of challenges associated with delivering timely palliative care referrals, including the following:
- Heterogeneous and often unpredictable disease trajectory
- Patient uncertainty regarding prognosis of relapse
- Need for recurrent (often continuous) treatment to provide symptom control
- Inadequate hospice care services (e.g., lack of dialysis and transfusion)
- Limited access to palliative medicine resources and hospice care
- Discordance between QOL metrics and patient-perceived QOL
Due to the disease’s natural history, it can be uniquely challenging to develop advanced directives for some patients with MM.4 Given the chronic and incurable nature of MM, the disease course usually involves recurrent relapses interspersed with variable-length periods of remission. This undulating pattern often makes it difficult for patients to grasp the severity and consequences of the disease’s progression. Frequently, when patients experience a relapse, a different line of treatment may be offered. This may result in temporary improvement in symptom burden yet uncertain returns in terms of survival benefit. Importantly, current treatment paradigms for MM require indefinite therapy in many instances, which might increase the risk of cumulative toxicity.5 Therefore, it is crucial for caregivers to offer clarity to patients about their individual prognosis to help ease decision-making. While limited time and patient reluctance can be barriers to adequate discussions, introducing advanced directives early in the disease course and readdressing goals with each relapse can help improve goal-concordant care.
In addition to symptom burden, patients with MM are also more likely to die in the inpatient setting, often with significant infections, transfusion dependence, or dialysis dependence.6,7 Given that there is limited to no benefit to EOL dialysis and/or transfusion support, most hospice agencies will not provide access to these interventions, resulting in MM patients being less likely to engage in or consider hospice care. There is a need for prospective research focused on EOL outcomes for patients with MM and the best options for support within the hospice system.
Finally, traditional metrics to measure quality EOL care do not always apply to patients with MM. Chemotherapy within the last 14 days of life, emergency department visits or hospital admissions within the last 30 days of life, and hospice length of stay are considered surrogates for poor EOL care for cancer patients.7 However, patients with MM are often on indefinite therapy, which varies from frequent outpatient infusions to daily pills. Not all forms of therapy at a patient’s EOL will result in similar reported outcomes. Furthermore, patients suffering from MM can have significant symptom burden, requiring hospitalizations to achieve adequate symptom relief.8.9
Currently, there are no evidence-based guidelines regarding the ideal timing for palliative care and hospice referral for patients with MM. The relapsing/remitting trajectory of MM requires clear understanding of patient goals, as well as open discussion around individual preferences regarding advanced directives. These decisions may change with altering disease states over time. It is imperative that caregivers (and patients) have resources in place to engage in critical conversations about their disease course and prognosis. There is a dire need to develop EOL metrics tailored to patients with MM. The high symptom burden of this population creates a need for additional palliative care services as a bridge to hospice. Further research is needed to optimize palliative care delivery and develop evidence-based guidelines for patients with MM.
- Binder M, Nandakumar B, Rajkumar SV, et al. Mortality trends in multiple myeloma after the introduction of novel therapies in the United States. Leukemia. 2022;36(3):801-808.
- Mohyuddin GR, Sinnarajah A, Gayowsky A., et al. Quality of end-of-life care in multiple myeloma: a 13-year analysis of a population-based cohort in Ontario. Canada. Br J Haematol. 2022;199(5):688-695.
- Giusti D, Colaci E, Pioli V, et al. Early palliative care versus usual haematological care in multiple myeloma: retrospective cohort study. BMJ Support Palliat Care. 2024;14(3):291-294.
- McCaughan D, Roman E, Smith AG, et al. Palliative care specialists' perceptions concerning referral of haematology patients to their services: findings from a qualitative study. BMC Palliat Care. 2018;17(1):33.
- Patel MN, Nina A, Branchaud B, et al. Symptom experience of patients undergoing treatment for multiple myeloma: a longitudinal real-world electronic patient-reported outcomes study. Support Care Cancer. 2024;32(12):802.
- Tsang M, LeBlanc TW. Palliative and end-of-life care in hematologic malignancies: progress and opportunities. JCO Oncol Pract. 2024;20(6):739-741.
- Neuss MN, Jacobson JO, Earle C, et al. Evaluating end of life care: The Quality Oncology Practice Initiative (QOPI) experience. J Clin Oncol. 2006;24(18_Suppl):8573.
- Kamal M, Wang XS, Shi Q, et al. Symptom burden and its functional impact in patients with "symptomatic" relapsed or refractory multiple myeloma. Support Care Cancer. 2021;29(1):467-475.
- Abbasi S, Roller J, Abdallah A-O, et al. Hospitalization at the end of life in patients with multiple myeloma. BMC Cancer. 2021;21(1):339.
Disclosure Statement: Dr. Thakur indicated no relevant conflicts of interest.
Acknowledgment: This article was reviewed by Agrima Mian, MD, MBBS, and Hetty E. Carraway, MD, MBA.