I attended a session on palliative care, Billed Palliative Care and End of Life Care in Patients with Hematologic Malignancies presented by V. Rao from Warren Alpert Medical School of Brown University. I thought it was interesting that palliative care was not defined in the talk. I suppose the assumption was the audience knew the definition, and perhaps they did. However, I wonder how many in the audience share misunderstandings of the differences between palliative care and hospice care. My experience in the community is that many people (patients and health-care professionals) interchange palliative and hospice care. During the talk, I considered the possibility that this played a large role in the low referral rates discussed in the talk. Although, there has been a steady increase in referrals over the last ten years.
While palliative care and hospice care share similar components, the two are different in goals and services. According the the International Myeloma Foundation (IMF), “Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specialty-trained team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.” https://www.myeloma.org/what-is-palliative-care
The American Cancer Society defines hospice as the following. “Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness. Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible. The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered—it includes the patient and the family in making decisions.” https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
Thinking about the issue anecdotally, I do not know any multiple myeloma patients, including myself, who have been introduced or referred for palliative care services. Given the goal of palliative care, I believe many of us could benefit from services. Early integration of palliative care into standard of care is recommended for multiple myeloma patients. It is important that myths and misunderstanding between the two are dispelled to assure that multiple myeloma patients are appropriately referred for services. I also see this as an opportunity to proactively education patients on the benefits of hospice services. Both offer rich supportive care, at different phases during the illness process.
According to this study, palliative care has been shown to benefit individuals with solid tumors, but benefits are not established for hematologists disorders. There aren’t any studies looking specifically at Quality of Life (QOL) impact in the hematologic population. I would image the benefits are irrespective of cancer type and would show beneficial for MM as well. QOL and supportive care are universal issues. I look forward to seeing more research in this area at future ASH meeting. Mr. Rao’s passion for this work leads me to believe he’ll continue the work.
Wishing you Hope,
Tiffany H. Williams