Palliative care can be a good option for people with leukemia, regardless of the severity of their condition. Palliative care is different from hospice, or end-of-life care, because it helps people at any stage of disease, often while they’re pursuing other treatments.
Dispelling palliative care misconceptions can help encourage you and your loved ones to take advantage of supportive resources during your leukemia journey. According to research by the Journal of the American Medical Association, palliative care improves quality of life and should be considered the standard of care for people with acute myeloid leukemia and other blood cancers. Here are some details you should know about the different types of services you can find in a palliative care team.
Palliative care is a specialized form of support for people living with a serious health condition. Unlike hospice care, which begins when a person discontinues curative treatment, palliative care works with leukemia treatments to improve the treatments’ effectiveness, reduce side effects, and help you feel your best.
There’s no need to stop leukemia treatments while receiving palliative care, so it can be helpful to look into options early in your treatment. In early-stage leukemia, palliative care can help you come to terms with your diagnosis and prevent complication risk factors, like weight loss. In later-stage leukemia, palliative care services can help you stay at home longer and transition to hospice, if needed. For leukemia, palliative care can enhance treatment effectiveness by improving your ability to withstand aggressive interventions which may lead to a cure.
Palliative care specialists work together to address physical symptoms and help you understand your leukemia treatment options. You may meet with various specialists, such as social workers, nurses, registered dietitians, physical therapists, psychiatrists, and massage therapists. You can talk to your oncologist or other provider about referrals to the appropriate professionals.
Leukemia treatments can be overwhelming for you and your loved ones. Weighing different options and communicating with health care providers can quickly become an added stressor in everyday life. A palliative care team helps you remain a participant in your health and life choices by taking the time to review your care plan, facilitate communication with your providers, and assist as your advocate. If you’re starting to feel like you’re in over your head, now might be a good time to ask about palliative care.
One MyLeukemiaTeam member suggested palliative care to a daughter worried about her mother’s rapid weight loss: “I suggest speaking with a palliative care specialist about your mom’s status, as that service model is wonderful and may put your mind at peace.”
Many times, palliative medicine for leukemia focuses on treating the side effects of chemotherapy or other treatments. These can include fatigue, discomfort, and significant nausea and vomiting. The palliative care team will help you discover which treatments address these side effects.
Palliative care can also help you improve your strength and energy levels so you can keep up with the demands of daily life. In some studies, palliative care has also been shown to extend the life span of those living with a serious illness. Whether you’ve just been diagnosed with leukemia or have been living with it for some time, ask your oncologist for more information about palliative care services to improve your health and well-being.
People with leukemia can seek palliative care to prevent infections, get intravenous (IV) antibodies, receive treatments for low blood counts, and more.
For some people, having a health condition like leukemia brings up the desire to explore spirituality or religion as a source of support, or to explore a deeper meaning and understanding of life. Depending on your personal needs and beliefs, chaplains and other religious leaders can be included on your palliative care team.
As part of palliative care, a social worker can help you manage various aspects of living with leukemia — things like finding a ride to your appointments, paying for medical care, applying for disability or medical leave, finding child care assistance, and communicating with friends and family about your condition.
A leukemia diagnosis doesn’t just affect the individual. Often, loved ones and caregivers need support and resources as well. In addition to providing emotional support, palliative care can help family members with practical advice about how to manage day-to-day responsibilities. Filling out complicated medical forms, dealing with insurance companies, and finding housing and transportation are all potential topics of conversation families can have with a palliative care team. By involving a palliative care team early on, you’ll give yourself and your loved ones valuable support and easy access to assistance if unexpected or sudden changes occur.
Some palliative care costs are covered by health insurance (including Medicare and Medicaid), while others are not. Supportive care may be provided in several settings, such as your home, an outpatient facility, an inpatient hospital, a long-term care facility, or a cancer center. If you’re a veteran, you may have access to free or low-cost palliative care through the Department of Veterans Affairs. Talk to your oncologist and health insurance carrier to learn more about your options. You can also ask the social worker from your palliative care team to assist you in finding ways to cover the cost.
On MyLeukemiaTeam, the social network for people with leukemia and their loved ones, more than 10,000 members come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Have you ever thought about trying palliative care? What types of services might you be interested in? If you’re already engaged in palliative care, how is it going for you? Share your experience in the comments below, or start a conversation by posting on the Activities Page.