Many patients and families avoid the topic of palliative care out of the mistaken belief that it means giving up. The term is often confused with hospice care, which specifically means comfort care at the end of life.
But that’s not what palliative care is. Palliative care in Duchenne muscular dystrophy (DMD) is about caring for the whole person. It aims to make sure the hopes, worries, goals and values of a patient and their family are factored into their medical care, and provides an extra layer of support in decision-making and symptom management.
What is palliative care?
Palliative care is care that focuses on quality of life and well-being, rather than curing a disease or controlling its symptoms. It often focuses on providing relief from pain and suffering, but it also helps ensure treatment is in alignment with what a patient most wants.
Palliative care is personalized to the goals and values of a patient and their family. A patient’s DMD care team is likely to focus on what will keep their body living the longest. Palliative care takes a step back and asks a patient what living well means to them, and then supports them in living well for as long as possible.
This is especially important in Duchenne. Since symptoms eventually affect movement, breathing and heart function, daily life for the patient and their loved ones will see many new challenges over the course of the disease. Palliative care aims to create a holistic approach that prioritizes support and wellbeing as patients navigate these challenges.
When is the best time for palliative care in DMD?
It’s never too early to introduce palliative care in DMD. Previously, only adult patients and patients at later stages of the disease received palliative care, but current advice encourages palliative care at any age to help you or your child have a higher quality of life. A palliative care team can partner with a patient’s multidisciplinary healthcare team at any stage to provide the best care for both health and wellbeing.
Learn more about DMD treatment and care
What does palliative care involve?
Thanks to medical advances, life expectancy for those living with DMD has significantly evolved: Patients with DMD are now living into their fourth decade. However, as those with DMD live longer and their disease progresses, their support needs grow.
This means patients and their families will face countless challenges and decisions. Is a ventilator the right choice? A new medication? What’s the best way to manage back pain, or constipation?
Palliative care can help patients and families respond to new uncertainties. It can help with finding the right resources and decisions on:
- Symptom management: Palliative care can provide support in managing symptoms, especially with pain relief.
- Emotional support: A palliative care team can help a patient and their family access counseling.
- Practical support: Palliative care helps address the needs of caregivers, too, and can help ease the burden of navigating financial services, school accommodations, mobility aids, respite care, etc.
- Care coordination: Palliative care specialists can liaise with all members of the healthcare team to ensure continuity of care.
- Advance care planning: Palliative care can help navigate discussions about future care and treatment preferences.
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