Audrey Fitch is filming her life with cancer to show others what it’s like to live with the disease, as opposed to dying from it.
“That’s great and all, but that story’s been told,” she said.
Fitch, 22, is a patient at the Ellis Fischel Palliative Care Clinic, located on the first floor of the cancer center at 115 Business Loop 70 W. She recently became a palliative care patient after it was determined that, while her cancer can’t be cured, there remains a need for medical intervention to improve the quality and length of her life.
Traditionally, palliative care is provided to terminally ill patients who are near death. At Ellis Fischel, a patient can receive palliative care whenever cure-seeking treatments are no longer available.
“It’s mostly pain management,” said Clay Anderson, medical director at the clinic. “We do some chemotherapy to keep the cancer at bay, but we’re not going to do something that’s painful and aggressive.”
Anderson and his team at Ellis Fischel have been taking a holistic approach to their work for years, but the cancer center didn’t begin its designated palliative care program until last summer.
Through his work with the Missouri End of Life Coalition and the palliative care clinic at Ellis Fischel, Anderson has been developing new ideas for treatment at the end of life. His philosophy is to make the best of the time a person has left.
“We like to preserve the most active lifestyle possible,” he said. “We help them to be as comfortable as possible so they may complete any goals they have.”
Fitch, one of Anderson’s patients, was diagnosed with cancer as a teenager. Her initial prognosis was poor.
“They said she’d be lucky to live five years,” said her mother, Karen Bradley. That was six-and-a-half-years ago.
Fitch considers Anderson “the best — capital B — doctor in the world.” She recalls the time he stepped in during a painful procedure that was being performed by another physician and gave her pain medication.
“There’s no reason for that to be uncomfortable,” Anderson said.
“That’s him,” Fitch said with a grin. “That sums his treatment up.”
Veronica Kempker travels from Jefferson City to receive treatment from the palliative care clinic. Her daughter, Margaret Rehagan, drives her to Columbia about once a month for her appointments.
Kempker has decided not to treat her cancer aggressively. She is now on comfort care, living in her own home with her two sons, who prepare her meals and help her around the house.
In her spare time, Kempker knits baby blankets for Angels of Mercy, a charity organization that donates keepsake blankets to parents of stillborn or miscarried children.
“I’ve already gotten three letters of thanks for my blankets,” she said.
Kempker also has a good relationship with Anderson. “I always wanna call him ‘buttons,’” she said. She’s still looking for the right button to give Anderson for his lab coat, which is covered with decorative buttons and pins he’s picked up from all over.
Details like Anderson’s lab coat help make the palliative care experience personal.
Nancy Bennett, one of the coordinators of the program, remembers when her mother died, it was a difficult adjustment time before and afterward.
“She didn’t want to go into hospice, but I realize now, there were other options,” Bennett said. “[We] would have benefited from this type of program. I’m glad we can provide this to other families.”
Bennett stresses the importance of the family of a palliative care patient receiving material to aid in the bereavement process.
“It’s important for a dying person; they can die knowing they did all they could,” she said. “The family needs it more in some ways than the dying person, because they still need to figure out how to live after losing someone.”
Hospice is what many people turn to for end-of-life care. Others choose to go in and out of hospitals, spending whatever time they can at home.
The palliative care team considers both hospice and hospitals tools in their treatment of the whole person. They also talk about personal needs, and incorporate the whole family in the decision-making process.
The team also emphasizes the importance of a patient’s understanding of their living will and treatment choices. “We still do blood tests and scans, and some treatments, so that we know how the disease is progressing,” Anderson said.
“It’s all about not knowing,” Fitch said. “How do you plan for that?”
Anderson tries to help his patients plan by being up front with them about their situation, and trying to deal with the options in whichever way is best for each patient.
Other palliative care programs such as the one at Boone Hospital Center are good, Anderson said, “but perhaps have a different purpose.”
At those clinics, patients are picked up much later into their disease progression. Most patients in other palliative care die after about two weeks, Anderson said. That’s not because the programs are not doing their jobs, he said, but because the patients are added to the program that late in their disease.
In those situations, “normally, it’s too late to talk about hospice,” Anderson said.
At the Ellis Fischel clinic, the palliative care team gets the opportunity to build a relationship with the patients and their families.
“We’re better able to help that way,” said Julie Anne Hagedorn, a nurse at the clinic. “We need trust, and they trust us to help without causing any harm.”