If you or a loved one has been diagnosed with heart failure, you may be feeling overwhelmed by the changes and decisions ahead. By adding palliative care, you’ll have a partner every step of the way.
That’s where Alicia Patalano, NP, comes in. She’s a palliative care practitioner at Lifespan Cardiovascular Institute, a HopeHealth partner organization. Every day, she helps patients with heart failure find relief not just from symptoms, but from uncertainty.
She explains the benefits of palliative care for anyone living with this condition.
Support with lifestyle changes
Palliative care is an extra layer of care added on top of, and in coordination with, your existing care. These experts understand the challenges of chronic illness — and how to navigate those challenges for your best quality of life.
For heart failure, that often includes crucial lifestyle changes to help you live as long and fully as possible. From exercise to diet changes, your palliative care team can work with your cardiologist and other care teams to help you stay on track.
“If patients are able to stick to that healthy lifestyle, it helps them stay out of the hospital,” says Alicia.
Reducing stress and uncertainty
To ease the uncertainty around your diagnosis, your palliative care team can meet with you as much — or as little — as you need to understand how your disease might progress, and what to keep in mind at each stage.
“Ideally, we talk to families and patients early and often to help them understand what might be down the road,” says Alicia. “When they know what to expect, and what we can do to help, we can lessen their anxiety.”
That can have a positive impact on your physical health too: “Stress is a large component of chronic illness like heart failure,” says Alicia. “If we decrease a patient’s stress, their illness can be better managed.”
> Related: 7 common myths about palliative care
Managing heart failure symptoms for quality of life
As heart failure progresses, symptoms like shortness of breath get worse. Often, that leads to depression and anxiety.
Palliative care provides an extra layer of care and support to keep this at bay, so you can feel your best. For example, that might mean ordering and supplying oxygen therapy in the home — a change that can transform everyday life.
“If we can ease shortness of breath and the anxiety around that, it improves quality of life,” says Alicia. “So a patient can go out to eat with their loved ones, attend a birthday party, or just watch TV comfortably.”
Understanding your treatment options
When Alicia meets with patients and families, they talk a lot about the future. That includes if they may eventually be eligible for an advanced therapy, like heart transplant or a left ventricular assist device (LVAD) pump.
These treatments come with lots of pros and cons, and it helps to have the facts well in advance.
Alicia is there to listen, share information and make recommendations. This can happen in one sitting, or it can be an ongoing conversation over months and years.
If a patient and family reach an important decision, she makes sure all their providers are on the same page.
Having crucial conversations
Of course, treatment is just one piece of planning ahead. Palliative care practitioners help families think about other decisions too.
For example, if a patient plans to remain at home at advanced stages of heart failure, how will they do so safely? Do they want heroic measures like CPR? At what point will they transition to hospice care?
“Having these bigger discussions when the patient is well, rather than when they’re feeling ill and in the hospital, is so helpful for the entire family. They can be better informed and make better decisions,” says Alicia. “These are difficult conversations, but patients and families are appreciative that we had them.”
Supporting heart failure caregivers
Caring for a loved one with heart failure can require a lot of time and energy, from managing medical regimens to helping with activities like bathing and cooking. Over time, especially in the later stages of illness, caregivers need support too.
Palliative care offers a dedicated person that caregivers can call for questions and reassurance — from medication management to how to improve their loved one’s overall quality of life. “That support and reassurance is so important,” says Alicia.
That’s not all. “As a palliative clinician, part of my job is to find different avenues that benefit the patient and family,” says Alicia.
Often, that means recommending resources that lighten the load for caregivers, from visiting nurses to caregiver support groups.
What is the role of palliative care in heart failure?
Whether you and your family been navigating heart failure for a while, or you’re still adjusting to the diagnosis, you may want extra experts in your corner. That’s the role of palliative care.
Amid the challenges of chronic illness, palliative care is your partner for everything from everyday questions to long-term plans.
“We are willing to talk about anything you want to talk about,” says Alicia. “We’re here for support.”