If you have been diagnosed with a serious disease, palliative care can provide an extra layer of support to you and your family when you need it most.
Unfortunately, people often don’t understand the role of palliative care and how it leads into hospice or end-of-life care. Palliative care can come in any time you have a serious disease diagnosis, even working alongside your treatment team.
“In fact, when palliative care comes into the care process early, we’re able to build relationships,” says St. Joseph Health Nurse Practitioner Jackie Burnette. “Eventually, as the disease progresses, the patient and family have the benefit of already having palliative care in place.”
Identifying What’s Important
Referred to as “comfort care,” palliative care provides relief from the symptoms, pain, and stress of serious illness. It also helps improve the quality of life of both the patient and the patient’s family.
Palliative care professionals begin supporting patients and families by helping them identify goals through a life review. “We help them look at what’s important,” said Burnette. “Sometimes, people want to do as much as they can. Other times they may determine that treatment would decrease the quality of their days while only increasing the quantity of days.”
Improving Quality of Life
Palliative care is carried out by a team of specialists trained in helping patients and families through what can be the most difficult time in their lives. Burnette describes the team as having a MacGyver way of thinking of things, looking at what is going to give patients what they want or need while they are living with their illness.
“One example,” said Burnette, “is where we might work with a patient who has had a stroke and has difficulty swallowing. There is this product that we can use to thicken liquids, which helps patients drink safely. It tastes horrible and prevents the risk of aspiration, but is it in relation to patient goals?”
The palliative care team can work with physical and speech therapy to teach strategies like adding gravy to biscuits to change the texture, so patients can continue eating what they want.
Sometimes palliative care offers the most value to families in need of support. The team will hold family meetings to talk through issues and help determine the best course of treatment for the patient.
Of course, the ideal situation, says Burnette, is for families to talk when everyone is healthy and sitting around the table. Unfortunately, families aren’t always ready to have these conversations in the earliest stages of an illness.
“One of my favorite phrases is, ‘Hope for the best, and plan for the worst.’” said Burnette. “It’s important to discuss things like who I want to make my decisions for me when I can’t, what kind of treatment do I want or not want, how comfortable do I want to be, and what do I want my loved ones to know.”
Bridging the Disconnect
When determining the timing for palliative care, family members often experience a disconnect between the knowledge in their heads and what they hold in their hearts, says Burnette.
“I can understand in my head why my loved ones might have a limited life expectancy, but I don’t think my heart always understands it,” she said. “When you have permission to have that disconnect, I think that makes conversations easier when talking to families.”
Palliative and hospice care are not always just about the patient. It’s also about the patient’s families and their journeys. By understanding the needs and goals of patients and families, the palliative care team can help walk both through to the kind of quality care they need.
For more information on palliative and supportive care, visit chistjoseph.org.
National Hospice and Palliative Care Organization (NHPCO)
Nurse Practitioner Jackie Burnette, St. Joseph Health Regional Hospital