Helen Brown is accustomed to living in pain. Some 20 years ago, she was diagnosed with gastrointestinal carcinoid tumors, a slow-growing cancer that wreaks havoc on the digestive system. She suffers through vomiting and sometimes debilitating diarrhea, and can experience intestinal block-ups that leave her doubled over in so much agony that her blood pressure spikes.
On top of all that, she has spinal stenosis.
“So it’s a combination of the two of them that really tears her up,” her husband, William, said. “It’s awful.”
Brown is among legions of cancer patients who have seen their quality of life eroded by their disease. And while research breakthroughs have helped save and extend lives, too many patients—and their families—still struggle to manage the symptoms, pain and stress that often accompany a cancer diagnosis.
A $14 million gift to Indiana University School of Medicine aims to change that.
The gift from the Walther Cancer Foundation will create a supportive oncology program that goes beyond standard therapies such as surgery, chemotherapy and radiation and seeks to care for a patient’s overall physical, mental and spiritual well-being. The program will be named the Walther Supportive Oncology Program in recognition of the foundation’s generosity.
It is believed to be the largest gift in the country to support a program of this kind. As part of For All: The Indiana University Bicentennial Campaign, the gift will receive matching funds from Indiana University, dramatically increasing the depth and breadth of what researchers, physicians and other caregivers can accomplish.
“In the future, I hope we don’t just look at a patient and think we are treating a tumor, but rather supporting a person, so that we broaden the care we’re providing,” said Thomas W. Grein, president and chief executive officer of the Indianapolis-based Walther Cancer Foundation. “I also hope that once we have built this model, it can be replicated from institution to institution around the nation and perhaps around the globe.”
James F. Cleary, MD, an international leader in the field from the University of Wisconsin School of Medicine and Public Health, has been recruited to IU School of Medicine and will serve as the inaugural director of the program.
The program will be developed in partnership with Indiana University Health, one of the largest academic hospital systems in the United States. It is also intended to influence care for cancer patients and their families throughout Indiana and the country by providing expertise and best-practices for other health systems to model.
For the Browns, who know all too well the physical and emotional toll that cancer takes, the idea of such a program is extraordinary. “I am so grateful that somebody else cares enough about you and your pain and what you could be going through,” Helen Brown said. “To give a gift of hope is so big, and I appreciate it.”
Supportive oncology is related to palliative care, a growing discipline that provides extra layers of support for patients with serious illnesses. While many people associate palliative care with end-of-life care, it is intended to support patients during all phases of illness beginning at the point of diagnosis and in tandem with therapies designed to cure or improve symptoms, and extends into survivorship.
Examples of services and expertise that will be included in the program include:
- Pain management
- Management of symptoms such as nausea, fatigue and neuropathy
- Psychological and psychiatric services, which are critically important for cancer patients who frequently experience depression, pain and anxiety
- Spiritual care
- Assistance navigating financial concerns, transportation issues and at-home support
- Complementary services such as nutrition assistance, smoking cessation and other types of behavior modification
- Systematic communication about patients’ values and preferences
While many of these services currently exist, they are typically offered in piecemeal fashion. A comprehensive, team-based supportive oncology program aims to assess patients’ needs throughout their cancer treatment and integrate services as part of routine cancer care.
Importantly, these services will be embedded in cancer clinics or closely coordinated with the oncology team, preventing patients from having to juggle multiple appointments at different times.
The Walther Supportive Oncology Program will also place a heavy emphasis on research in areas such as physician-patient communication, care coordination, symptom management and the long-term effects of cancer on survivors. The program includes laboratory research to predict which patients will suffer side effects to specific therapies and how to mediate them, and to discover treatments that are less toxic.
In addition, the program will include an educational component to train the next generation of clinical leaders in supportive oncology.
“Through research and innovation, we will develop a supportive oncology program that will be a model for the nation,” said Jay L. Hess, MD, PhD, MHSA, IU’s vice president for university clinical affairs and dean of IU School of Medicine. “Just as we are continuing to advance cancer treatments by personalizing therapies, we must reimagine the way care is delivered, so we are able to tailor support services for each patient and family. We will bring to bear existing resources, recruit some of the best minds in the field, and make this vision a reality for cancer patients.”
If you’re interested in enhancing the supportive oncology program at Indiana University School of Medicine, contact Amber Kelopfer Senseny at akleopfe@iu.edu or 317.278.4510.
