The term “palliative care” is often thought of as end-of-life care, or hospice care. However, it’s a common misconception that palliative care is only meant for those with late-stage, incurable cancers. People with a myeloproliferative neoplasm (MPN) at any stage can benefit from palliative care. This type of care can ease MPN symptoms, help you deal with treatment side effects, and provide emotional support.
One member of myMPNteam shared, “I have spoken with my palliative care team. They have gotten my bone pain to a very manageable level, and my constipation is no longer an issue. I feel a heck of a lot better when I wake up each morning and am in a very positive mood. I still go at the same pace, but with a better attitude. It sure makes life worth living now. I feel that a huge weight has been lifted off my shoulders by discussing how I want my life to be.”
There’s no need to stop MPN treatments while receiving palliative care, so it makes sense to look into these services sooner than later. For early stage MPNs, palliative care can help you come to terms with your diagnosis and prevent complication risk factors, like weight loss. In later-stage MPNs, palliative care services can help you stay at home longer and transition to hospice, if needed. Here are some details you should know about the different types of services available throughout your MPN journey.
Palliative care is specialized support for people living with a serious health condition. Unlike hospice care, which begins when a person discontinues curative treatment, palliative care works with MPN treatments to improve the treatments’ effectiveness and help you feel your best.
Some palliative care costs are covered by health insurance, while others are not. Services may be provided in several settings, such as your home, an outpatient facility, a hospital, a long-term care facility, or your doctor’s office. 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.
Palliative care teams are made of specialists who work together to address your concerns and help you understand your MPN treatment options. You may meet with various specialists, such as social workers, nurses, registered dietitians, physical therapists, psychiatrists, and massage therapists. People with MPNs seek palliative care for issues like difficulty sleeping, fatigue, nausea, constipation, poor appetite or early satiety, shortness of breath, and pain.
For example, a dietitian could help you develop strategies to prevent weight loss, such as eating smaller, more frequent meals or incorporating high-calorie snacks and supplements. If night sweats are keeping you from a good night’s sleep, a sleep specialist could work with you and your oncologist to discuss your sleep environment or medications to help with sleep, such as JAK inhibitors. A palliative care team also can help you address both the short-term and lasting effects of cancer treatment.
Palliative care can 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 an MPN or have already undergone a stem cell transplantation, ask your hematology specialist for more information about palliative care services to improve your health and well-being.
As part of palliative care, a social worker can help you manage various aspects of living with an MPN — 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.
An MPN 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.
Research has shown that people with MPNs likely face mood disorders at a higher rate compared to the general population. Anxiety and depression are common responses to any health issue — particularly MPNs — and may make individuals feel isolated and fatigued. Trained mental health care providers are an essential part of the health care team to support you and your loved ones during any stage of life with an MPN.
For some people, having a health condition like an MPN 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.
On myMPNteam, the social network for people with myeloproliferative neoplasms, members come together to ask questions, give advice, and share their experiences with others who understand life with MPNs.
Have you ever considered palliative care? What types of services are you interested in? If you already engage in palliative care, how has it benefited you? Share your story in the comments below, or start a conversation by posting on myMPNteam.