When you’re living with liver disease, extra support can make all the difference. That’s the idea behind palliative care. It’s an additional layer of care to help you navigate the unique challenges of your diagnosis.
“We want to be sure that throughout the course of your illness, your symptoms are well managed and your quality of life is not put on the back burner,” says Edward W. Martin, MD, MPH, HopeHealth’s chief medical officer.
And unlike hospice, palliative care can be delivered alongside any cure-focused care.
“We’re not here in any way to limit your options,” says Dr. Martin. “I’ll hear from patients, ‘I’m not ready to throw in the towel.’ I explain that with palliative care, you can keep the towel. We’ll give you extra towels.”
Here’s what this type of care means for liver disease.
Palliative care specializes in the difficult symptoms that come with liver disease.
People with liver disease often face a heavy symptom burden, ranging from pain and breathlessness to confusion. When these symptoms are not effectively managed, they can lead to significant distress and discomfort.
Palliative care offers advanced medications and techniques to prevent that from happening. With the right support, you can feel more comfortable, think more clearly, and have the best possible quality of life.
“Just because you have this illness, you don’t need to suffer with uncontrolled symptoms,” says Dr. Martin.
It reinforces other medical support too.
Even beyond symptom management, a palliative care team offers extra attention to keep you on track with medical care.
For instance, when liver disease is related to alcohol, a patient can have a dramatic turnaround if they stop drinking. Your palliative care team can work closely with experts in addiction medicine to arrange the support they need.
Second, palliative care is designed to lighten the load of patients and families. That includes working with all your experts and teams to keep everyone on the same page. Most patients find their care suddenly feels simpler and more streamlined.
It helps you understand your future options.
For any major health decision, you need the right information — and a clear picture of how it actually applies to you. That’s at the heart of palliative care.
For example, when a patient is living with liver disease, the idea of a liver transplant may loom large in their hopes for the future. But in truth, it’s not always a possibility. Even when it is, they must carefully weigh the decision.
Whatever your individual situation, a palliative care team devotes time to helping you understand and come to terms with your options — and consider where to go from here.
“What are your priorities? We want your plan of treatment to meet those goals,” says Dr. Martin.
They prepare your caregiver to be your decision maker.
As liver disease progresses, it impairs the ability to communicate, think and make decisions. This can occur suddenly, and sooner than many patients and families expect.
A palliative care team can make sure you’re prepared. They can help you think through the medical care you do and don’t want, communicate those wishes with your family, and assign someone like a caregiver to make decisions on your behalf. They can also provide support for that person.
“We want your caregiver to have a good understanding of your preferences, and be ready if they have to speak for you and advocate for you.” says Dr. Martin.
What is the role of palliative care in liver disease?
Palliative care offers extra care, information and guidance for people living with liver disease. In terms of direct services, it spans everything from physical care to emotional support for you and your family. In addition, palliative care experts often act as your advocate across all your specialists and care teams.
Right away, this can add up to a better quality of life. Down the road, it can help align your medical decisions with what matters most.
“We always ask patients, ‘What brings you joy in your life? What’s important to you?’ That’s a central goal,” says Dr. Martin.