BY JIM OMEL Multiple myeloma is a complex cancer whose treatment is constantly evolving. New immunomodulator (iMiD) and proteasome inhibitor (PI) drugs as well as promising immunotherapy approaches give us more reason for optimism than just a few years ago. Aggressive treatment such as transplantation can increase our overall survival (OS) time. Still despite all our significant progress, our death toll remains high, especially for high risk patients. Myeloma patients and their families should learn more about how palliative care can help them during the roughest parts of living and dying with myeloma. The word I would like to emphasize in that last sentence is living. What is “Palliative Care”? Palliative care is specialized medical care for people with serious illnesses such as cancer. It focuses on providing patients relief from the symptoms and stress of their illness with a goal of improving quality of life for the patient and their family. The term “palliative care” is often incorrectly used as a synonym for end-of-life care, or “hospice care”. Unfortunately even well-meaning doctors incorrectly equate these two treatment approaches. Palliative care does NOT require a terminal diagnosis or proximity to death, a common misperception which badly needs explanation. Hospice care is late-stage terminal care compassionately delivered by hospice agencies. It helps people and families during the process of dying. Palliative care is an essential component of serious illness care, much farther upstream from terminal care. It should be viewed as a valuable care component for patients with cancer from the time of diagnosis onward. This is certainly true for myeloma patients undergoing rigorous therapy such as single or tandem autologous transplants and allogeneic transplants. Myeloma patients receiving allogeneic transplants face varying degrees of acute and chronic graft vs. host disease, often for the rest of their lives. Unfortunately patients with hematologic malignancies rarely utilize palliative care services, despite their many unmet care needs, and are much less likely to receive palliative care compared to patients with solid tumors. This multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients and their families emphasizes the well-being of patients and families at any point along their disease trajectory, regardless of illness state. Palliative care does not refer to a particular place or a specific stage of illness, but rather it describes a philosophy of care. It is provided by a specially-trained team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It typically improves quality of life, decreases patient’s pain, and addresses physical, psychosocial, and spiritual needs. Palliative Care Availability In 2000, less than one-quarter of US hospitals with 50 or more beds had a palliative care team. In 2012 greater than 60% of similarly-sized hospitals had a team, and in 2015 it was forecast to reach 80%. In larger hospitals (>300 beds) palliative care teams can be found in an estimated 85%. In 2006 “Hospice and Palliative Medicine” was recognized as an official medical subspecialty. There are greater than 6500 board-certified palliative medicine physicians and more than 100 accredited fellowship programs in the US. Similarly there are over 18,000 certified non-physician palliative care professionals in the US, per the Hospice and Palliative Nurses Association. The demand for palliative care has increased dramatically. Palliative care specialists are especially competent in symptom and quality-of-life assessment, complex symptom management, communication skills, spiritual assessment, family-centered care, and high-quality end-of-life care including hospice care. Oncologists are highly trained in treating cancer, but might be less so in managing complex time-consuming psychosocial issues. We all know that multiple myeloma can sometimes be a very painful disease. Hematologist/oncologist trainees often find complex pain management quite challenging, and welcome additional expertise in this difficult but vital area of patient care. Who Should Provide Palliative Care? Clinicians who treat patients with cancer provide a great deal of palliative care themselves without formal palliative care intervention. This includes anti-emetic and pain management and discussions about prognostic understanding. Involving palliative care specialists in myeloma is certainly not meant to replace care already being provided by hematologist-oncologists. These specialists are most helpful in the care of patients with high symptom burden, complex symptom management needs, and patients with high risk prognostic uncertainties. In these circumstances palliative care specialists can help facilitate coping and planning. They can also serve as an effective communication bridge between the oncology team and patient. Patients may engage in different conversations with different clinicians, focusing on cancer with the cancer specialist, and pain or psychosocial distress with the palliative care specialist. They often say different things to their oncologist than they say to their palliative care clinician. Patients with myeloma experience physical and psychological symptom burdens that are comparable to or exceeding those of patients with advanced solid tumors. We experience pain, mucositis, dyspnea, fatigue, nausea, constipation, and diarrhea, especially during hospitalization for stem cell transplantation. Despite their significant needs, patients with myeloma rarely utilize palliative care services compared to patients with solid tumors. ASCO (American Society of Clinical Oncology) recommended in 2012 that concurrent palliative care be offered to all patients with metastatic cancer and/or high symptom burden. As of yet, however, there is no formal recommendation about palliative care involvement in hematologic malignancies such as myeloma. Studies have shown that palliative care improves patients’ quality of life, mood, symptom burden, and other aspects of cancer care. Family caregivers receiving early palliative care intervention report less depression and stress burden. Please consider this valuable approach to myeloma care, especially when undergoing stem cell transplantation. Ask your hematologist/oncologist about the availability of palliative care in your hospital.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.