Holly Spraker-Perlman presented an overview of palliative care and its role in personalized medicine as part of the CCTS-supported Foundations in Personalized Health Care course, which was designed to introduce students to many facets of this emerging field.
You are a not a superhero. When you are healthy, you can manage the normal scrapes and bumps of life, but a serious illness can weaken your resilience to not only normal, daily activities but also the course of medical treatment.
Getting a serious diagnosis can feel bewildering, and providers may not be in the best position to help a patient see the big picture begins Holly Spraker-Perlman, M.D. associate professor in Pediatrics at Primary Children’s Hospital.
“Palliative care does not mean dying,” she said. Rather she likens it to an extra layer of support. “It takes a village to help a patient with a serious illness.”
Palliative care is personalized medicine that treats the person not the disease. It consists of a team of doctors, social workers, nursing support, religious services, child services, and other specialists to help improve the quality of life of the patient, as well as their family and support group by taking into consideration their cultural and spiritual needs.
Spraker-Perlman stated that palliative care can be provided at any stage of life and at any stage of an illness. The goal is to improve a patient’s life as they tackle a serious illness, while planning for the future. “Ideally, we want to be integrated early in the patient’s therapy to help normalize the treatment process,” she said. “I am my patient’s biggest cheerleader, and I hope that they won’t need me.”
The first step of palliative care is listening.
“It is important to develop a relationship not only with the patient, but also with the family or support group so we can help everyone as the treatment evolves.”
In the beginning, the palliative care team helps the patient understand their disease, using non-medical terms, and determine the patient’s goal for medical therapy. “We take a patient’s medical plan and their life plan to make a care plan.”
The team helps the patient and their support system make decisions about what medical treatments make sense at different stages of the illness. “We want our patients to live as actively as they can, but we are there to help the patient and their support system cope with the changes throughout the treatment process,” she said.
If an illness progresses, the patient’s goals may evolve. The team discusses options with the patient when a therapy is not working to help make hard decisions about the next, best steps for their care. “We address the difficult, scary questions, like what is it going to look like when I die,” she said. The team discusses all of the options that are available and what it means to have a good death.
The palliative care team continues to offer support to the patient’s family and support group through the bereavement process to help them cope with the difficult transitions when a loved one is lost. “We try to follow our families for years after a loved one passes to offer support,” she said.
She concluded that end of life is a sacred, critical, and difficult time, but it does not need to be a taboo experience. Palliative care offers specialized care tailored to the patient’s needs. “We are available to help the patient and their support group as they navigate difficult decisions about curative therapies,” she said.
Contact: Rebekah Hendon
Email: Rebekah.Hendon@utah.edu