By Amanda Schoenberg
November 2, 2011
Like many patients with advanced cancer, Dennis Williams found himself facing questions he couldn’t ask anyone, even his family.
Then he met Marcy Zaffron. Since April, when patients diagnosed with advanced cancer need to talk, they find Zaffron. He is the quality of life navigator at Presbyterian Healthcare Services’ Cancer Center, who works with mostly Stage IV cancer patients.
“The thing that I like is Marcy and I just have a conversation,” Williams says.
The quality of life navigator position is a new one at Presbyterian, and may be the first of its kind in the growing field of patient navigators, who help people through the complexities of cancer care.
“I made it up,” says Dr. Dava Gerard, a breast surgeon and administrator for Presbyterian’s Cancer Service Line. “It was really in response to a need.”
Wording was important when creating the position, she says. Quality-of-life focuses on how people live, not how they die, she says. The position is designed to help people maximize the last chapter in their lives.
One goal is to start tough conversations early on subjects like hospice and pain management so patients have a more meaningful experience when they reach the final stages of cancer.
Discussions should be respectful of patient wishes and where they are in the cancer process, Zaffron says.
“When people say, ‘I’m really scared,’ I go, ‘Yeah, this is really scary.’”
Zaffron’s conversations range from finances to the daily struggles of family life, like teenagers acting out.
Cancer, even advanced cancer, doesn’t mean patients aren’t still actively engaged in family worries, he says.
“All of these issues are still true,” he says. “Our life goes with us.”
Williams, 68, was diagnosed with a cancerous blood disorder in December 2009. He ended chemotherapy treatment a year later.
Sometimes, he chats with Zaffron about their mutual interest in boxing. Other talks move into serious terrain. Recently, Williams says he asked Zaffron, “You’ve seen a lot of people die. What is it like?”
A licensed independent social worker, Zaffron has spent much of his career in oncology and end-of-life care. He also trained with Elisabeth Kubler-Ross, a pioneer in bereavement and hospice education.
For many patients, cancer is not the only source of stress. Many patients worry about leaving their families with massive medical bills or how their children will cope without them, he says.
Zaffron’s role is to help patients through whatever they need at the time — practical, emotional or spiritual — and connect them to resources if possible.
Zaffron works with patients and families, often speaking to out-of-state children by phone. Families often need just as much help as patients.
Much of his work is practical. Helping patients get a will together, for example, helps demystify the process.
He also advocates for patients. One man was diagnosed with cancer about the same time his company left Albuquerque and he lost his long-term disability benefits. It was a financial blow and a personal affront. He asked Zaffron for help.
After Zaffron spent three months wading through company bureaucracy, the patient received his benefits.
Presbyterian’s four nurse navigators typically meet cancer patients when they are diagnosed and see them through treatment and survivorship. Zaffron works with the specific issues of advanced cancer patients.
Advanced cancer is not a one-size-fits-all diagnosis. Some patients are stable, while others have stopped treatment and are preparing for the end of life.
People with Stage IV cancer, except in rare cases, will ultimately die from their disease, Gerard says. That doesn’t mean they do not still get chemotherapy to prolong or improve quality of life.
Sharon Francz, executive director of the Maryland-based National Coalition of Oncology Nurse Navigators, which has 650 members nationwide, says she is not familiar with any other navigators who focus on advanced cancer patients. She applauds the concept.
“I would say this is going to catch on,” she says.
Cancer centers are increasingly focused on issues of quality of life and survivorship, Francz says.
Both Gina Cimino, 47, who has Stage IV rectal cancer, and her husband Greg, have asked Zaffron for advice.
“It’s been wonderful,” she says. “We talk about things that are going on in our lives. It’s not just the cancer. It’s any little thing that comes up.”
Zaffron screens people on problems from sleep to child care. At first, many downplay their distress.
When Zaffron asked Cimino to fill out the form, she told him she was fine. As she filled it out, she checked more than she had realized.
“It made me realize that there are a lot more things going on in my life that I hadn’t looked at,” she says.
Talking to someone like Zaffron is important for cancer patients, Cimino says.
“It is hard to talk to your family,” she says. “They don’t want to hear that you might die. There are some days when I need to talk about it.”
Cimino finished chemotherapy in June and says she may be moving into remission.
With Zaffron’s help, Cimino has made tough decisions. Many people advised her to complete an advance directive, but Cimino never understood why she needed one. Zaffron explained that if she couldn’t speak for herself, she could designate someone to speak on her behalf.
Zaffron’s interest in end-of-life issues began when he cared for his mother at the end of her life in the 1970s.
“I think it’s really special to be there with someone, to be available to people in a way that serves them,” he says. “It is very gratifying.”
Most days, he has spiritual moments with patients. He also laughs with them.
When patients laugh about daily life, like how a spouse annoys them, they realize they don’t have to be “in the cancer” all the time.
“It is so magical when you see that,” Zaffron says.
As a navigator, he helps people identify solutions before it is too late, “putting light into a dark room, so to speak,” he says. Patients benefit when they have information to make better choices, he says.
“It gives power,” he says. “It gives the freedom of choice to the patient and their family by discussing it earlier.”