About 70% of patients referred to Winship’s Supportive Oncology Clinic mistakenly conflate palliative care and hospice care, according to Kimberly A. Curseen, MD, director of supportive and palliative care outpatient services for Emory Healthcare. It’s a common mistake, she says—even among providers.
The short explanation of the difference is that hospice is the insurance benefit that delivers palliative care for patients who are at the end of life or are no longer pursuing curative treatments. It is the best way to provide comprehensive care that is needed for patients and families during that time. Palliative or supportive care is an approach to care that focuses on maintaining the quality of life of people who have a serious or life-threatening disease, such as cancer.
Supportive Oncology is an umbrella term that can encompass a wide array of specialized services, including rehabilitation, pain management, financial counseling, nutritional support, and palliative care. Palliative care in cancer focuses on the individual with the illness, the whole person, and what they need to have the best quality of life while they are experiencing cancer.
Curseen says that most of the people she sees are referrals whose oncology team or primary provider believes they would benefit from palliative care. She says that to help patients feel more comfortable, medical providers should normalize the language around palliative care and treat it as a standard part of the services offered during the course of a patient’s cancer experience to maximize their quality of life during treatment. “That would do a lot to help patients feel more comfortable about accessing it,” says Curseen.
Curseen explains that palliative care is a philosophy of care, an approach that provides a range of services across the continuum of serious illness. It aims to help you manage physical, spiritual and psychosocial symptoms so you benefit as much as possible from your cancer treatment and have the highest possible quality of life throughout your cancer experience.
Defining “Success”
“When you are going for your oncology appointment,” says Curseen, “they very much care about what is happening to you as a whole person, and they do their best to address those issues. However their primary focus is cancer—and rightfully so; that’s what you want them to be focused on.” They will define success in terms of how effectively they are managing cancer.
By contrast, Curseen says, “In palliative and supportive care, success is defined by how well we have mitigated what you’re suffering from.” This can mean addressing such things as treatment preferences and choices, or symptoms of pain, shortness of breath, anxiety, depression, social distress, and spiritual distress—any of which may be what Curseen calls “the star of the show,” overshadowing everything else and keeping you from fully benefitting from your treatment and limiting your quality of life.
Curseen says the starting point for defining what is successful for the individual patient is determining with them what matters most for them. Palliative care supports treatments that improve quality of life and align with a patient’s goals. She explains, “If I have a patient who is incredibly fatigued and they say, ‘Kimberly, I’m so fatigued and so short of breath that I can’t play with my grandkids, or all I want to do is go on this trip,’ then my way of managing that would be to order a blood transfusion. That sounds pretty aggressive, but that blood transfusion is going to help that person reach a goal.”
Of course, managing the side effects of cancer treatment follows the first step of receiving treatment for the cancer. “Overall,” says Curseen, “that’s going to help you reach the goal of feeling better.”
An Extra Layer of Support
When you go to see your specialist and they treat you with medication, they’ll give you things to help manage your pain or nausea. “You’re receiving palliation of symptoms, management of symptoms,” says Curseen. This is a form of palliative care called primary palliative care. She explains, “When those symptoms start to become so severe where it’s affecting your ability, and affecting their ability to focus on treating you effectively, then that’s when you need to bring in an extra layer of support.”
Part of the support Curseen and other palliative care providers offer is their ability to explain the patient’s needs to their oncology team when the patient and providers may seem to have different goals and communication breakdown. “Our role is always to support the patient,” says Curseen, “but we can spend our time trying to understand the patient’s values that inform their decision.” This means trying to understand where they’re coming from and taking that message back to the oncology team to help facilitate effective communication so that patient and provider can reach a common goal. “We clarify patient goals,” says Curseen, “and talk with their treatment team to make sure that we have a good understanding of the patient’s values and that the patient has a good understanding of their illness, prognosis and options for care.”
Curseen says the palliative or supportive care providers offer a support system for the patient and family, and also for the referring provider. “The whole purpose of treating your cancer,” she says, “is for you to be alive and to have quality of life.”
Winship Resources Available to You
The Emory Palliative Care Center is a comprehensive program offering multidimensional collaboration through the unique services and expertise provided across Emory, its affiliates and community partners. The palliative care team coordinates closely with your health care team to prevent and ease suffering, and improve your quality of life. Discussing palliative care at the beginning of cancer treatment provides the maximum benefit.
You and your family may have many questions and concerns regarding treatment choices, side effects, emotional issues and more. We are here to help you through the entire process. For more information about palliative care at Emory, please ask your nurse or doctor for a referral, or call 404-778-7777.
Additional Resources
- Palliative care in cancer – National Cancer Institute
- Palliative Care: A Guide to Coping with Side Effects for People with Cancer and Their Families – American Society of Clinical Oncology
About Winship Cancer Institute of Emory University
Winship Cancer Institute at Emory University is Georgia’s only National Cancer Institute-designated Comprehensive Cancer Center, a prestigious distinction given only to the top 3% of cancer centers nationwide for conducting cancer research and providing training that is transforming cancer care, prevention, detection and survivorship. Winship discovers, develops, delivers and teaches some of the world’s most effective ways to prevent, detect, diagnose and treat each patient’s unique cancer. Cancer care at Winship includes specialists with deep expertise and experience in cancer; multidisciplinary evaluation, treatment planning and care coordination that caters to each patient’s individual needs; therapies supported by the latest advances in cancer research; and comprehensive support services.
