Palliative and End-of-Life Care for Patients With Hematologic Malignancies

Areej El-Jawahri, MD; Ashley M. Nelson, MA; Tamryn F. Gray, PhD; Stephanie J. Lee, MD; Thomas W. LeBlanc, MD

Disclosures

J Clin Oncol. 2020;38(9):944-953. 

In This Article

Abstract and Introduction

Abstract

Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.

Introduction

Hematologic malignancies are a heterogeneous group of diseases characterized by marked variation in their illness trajectories, treatment paradigms, and potential for curability.[1,2] Compared with patients with solid tumors, patients with hematologic malignancies experience unique illness trajectories that affect their palliative and end-of-life (EOL) care needs.[1,2] Specifically, these patients often experience an unpredictable illness course, with the possibility of cure persisting even in relapsed and refractory settings, contrary to most advanced solid tumors.[1–3] Many hematologic malignancies require treatment with intensive therapies, including hematopoietic stem-cell transplantation (HCT) and, more recently, chimeric antigen receptor (CAR) T-cell therapy, both of which are associated with significant toxicities and risks of mortality.[4–8] Even among patients with more indolent and chronic hematologic malignancies, intermittent or continuous therapies may be required indefinitely, which can contribute to morbidity and long-term quality-of-life (QOL) impairments.

Early integration of specialty palliative care has been shown to improve a wide range of outcomes for patients with advanced solid tumors, including QOL, mood, symptom burden, illness understanding, coping, and quality of EOL care.[9–14] Although palliative care clinicians are increasingly asked to care for patients with solid tumors, they are rarely consulted for patients with hematologic malignancies.[1,3,15] Given palliative care clinicians' expertise in managing complex symptoms, facilitating adaptive coping and illness understanding, and addressing the EOL care of patients with cancer, they could play an important role in addressing the palliative and EOL care needs of patients with hematologic malignancies.

In this article, we first describe the unmet palliative care needs of patients with hematologic malignancies and then examine the barriers to palliative care integration and optimal EOL care for this population. We also review the literature on palliative care integration strategies and discuss future directions to enhance the QOL and care of patients with hematologic malignancies through collaborative care.

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