The Gift of Time: Moffitt Initiative Empowers Patients to Speak Openly About Treatment Decisions

By Amanda Sangster - October 03, 2022

The 65-year love affair between Donna and Duane Dunbar is the kind of story that movies are made from. Two kids from a small, rural town meet at school in ninth grade. He spots her from across the classroom. He asks her to join him on a field trip to a local roller-skating rink and she says yes. They spend the day holding hands and flirting.

“And we kissed on the back of the bus the entire way home,” Duane Dunbar said. “I kissed her the first day I met her, and the last thing she did on Earth was give me a kiss.”

They would go on to have a relationship that spanned the better half of a century. Duane joined the Air Force and the couple married on base. Three children later and their family was complete. They would go on to have one adventure after another and live a full life.

The Dunbars were no strangers to tragedy, though. They lost their only daughter to an accident when she was 9 years old. They later lost their younger son, Ken, to brain cancer.

After losing their son, the Dunbars planned an adventure out West in 2020. “Donna and I loved to travel,” Duane said. “Not only that, but we liked to get lost.” When given the opportunity, the couple always took the road less traveled. But when the time came for their trip, Donna was experiencing trouble with her bladder.

She went to her doctors, who ordered scans. A day later, the Dunbars began getting phone calls. The scans showed an abnormality in her pancreas. Her doctors said a huge mass had formed — and it was likely cancer.

‘We Were in Florida Two Days Later’

“We’re going to a top 10 cancer center — that’s what I told her,” Duane recalled. The couple lived in Pennsylvania but reached out to Moffitt Cancer Center for an appointment. When they mentioned pancreatic cancer, the Dunbars noticed a shift in the woman’s tone over the phone. 

“‘We don’t need any more information. If you’re ready, we can see you next Wednesday.’ That’s what she told us,” Duane said. “We were in Florida two days later.”

Dunbar family photo
Family photos reflect the loving family Donna and Duane Dunbar built together.

After arriving at Moffitt, Donna was diagnosed with metastatic pancreatic cancer. They were told that she might have as few as four months to live. The couple were waiting for the elevator while processing the news when Donna collapsed. A stranger immediately began rendering aid to Donna.

“She came out of nowhere — it was instantaneous. She started barking orders at everyone,” Duane said. “Within seconds, first responders were there. Within a minute, everyone was helping Donna.”

Donna was rushed into an exam room while Duane paced back and forth down the hallway. The stranger stayed quietly by his side. “She really didn’t say anything, but she just walked with me,” Duane said. “She was so calm and caring.”

Kris Lombardi has been a clinical pharmacist for nearly 27 years. She helps patients with chemotherapy treatments and often develops deep connections with them and their families. Patients in the Senior Adult Oncology Program turn to her for help when they experience negative side effects or need modifications to their medicines.

On the day that Donna collapsed, Lombardi was the stranger who comforted Duane while he paced. “I call her my angel. Every time we got in trouble, every time Donna had a problem, there she was. It was like Kris was wandering around looking for us,” Duane joked.

Despite meeting only a handful of times, Lombardi remembered them. During the pandemic when visitor restrictions were in place at Moffitt, Lombardi would find Donna in the hallways and lead her to the clinic while Duane waited in the car. Lombardi eventually treated Donna while she was undergoing chemotherapy, going as far as consulting pharmacology textbooks when Donna began experiencing rare complications.

The Realities of Continuing Treatment

Donna initially responded well to chemotherapy. She was able to return to her normal life and some of her favorite activities, such as gardening. Donna loved flowers. She had an acre and a half that she tended to daily back home in Pennsylvania. She would wake at dawn and work in her flower beds until dusk. When not working in her garden, she was volunteering at her local garden club.

Donna was in treatment for more than a year before her kidneys started failing, requiring multiple hospitalizations. Donna’s providers changed the formula of her chemotherapy, but she fell violently ill in response.

It was at this point that Christine Sam, MD, a medical oncologist in Moffitt’s Senior Adult Oncology Program who was treating Donna, had a conversation — one of many — where she spoke openly and honestly with Donna about the realities of continuing treatment.

“I had noticed she wasn’t as joyful,” Sam explained. “She was so focused on her next treatment, but I could tell she was not the same person.”

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"Sometimes we miss the forest for the trees. Donna felt isolated — their family was up North, and they were stuck here. She would talk about her garden and how it was probably full of weeds. She wanted to get back there."

- Dr. Christine Sam

Sam and Donna spoke about what was most important in Donna’s life. “Sometimes we miss the forest for the trees,” Sam said. “Donna felt isolated — their family was up North, and they were stuck here. She would talk about her garden and how it was probably full of weeds. She wanted to get back there.”

Sam explained to Donna that she had an incurable cancer, and her time was limited — two things that Donna understood well. Donna responded that she wanted to spend her remaining time with her family, traveling with her husband and tending to her garden.

“That’s when Donna said, ‘No, we’re not doing any more treatment,’ ” Duane said. “It was her decision, and Dr. Sam was very supportive.” Even though Donna was in a physical place where she could still receive treatment, more treatment did not necessarily mean that she would live longer, especially as more complications began manifesting.

Throughout Donna’s treatment, Sam had spoken to her about her goals and hopes for the future. Because of this open dialogue, Sam believes that Donna was able to feel at peace in her decision to discontinue treatment. With her decision made, Donna began hospice care in their home. The average time in hospice is less than a week, but Donna stayed under hospice care for almost a year.

Improving Goal Concordant Care

Donna’s story is a testament to a larger conversation happening across America’s leading cancer centers. In 2020, the Alliance of Dedicated Cancer Centers (ADCC) launched a collaborative project called the Improving Goal Concordant Care Initiative. The initiative is a three-year plan designed to address goals of care for patients with advanced cancer. It is a call to action that all patients with cancer and their families should receive care that aligns with their unique values and priorities.

In a commentary published in The Oncologist, the ADCC noted that designing care environments in which patient values and goals are defined and honored is critical. The ADCC also recognized that physicians should be consistently and regularly speaking with their patients about their prognosis, personal preferences and goals of care. When conversations about goals of care happen, they should be well-documented throughout a patient’s electronic health record. The ADCC noted that cancer centers also need a measurement framework for these care discussions, like patient surveys and hospitalization data.

There are four core components to the ADCC’s Improving Goal Concordant Care Initiative:

  • Implement a formal training program for communications skills to ensure providers are prepared to have these important conversations
  • Create structured goals of care documentation in electronic health records so a patient’s team of providers can keep track of what discussions have been had
  • Establish expectations regarding goals of care communications
  • Implement a measurement framework to track how this communication is improving patient care

As a member of the alliance, Moffitt has taken steps to implement the core components of goal concordant care. The center is providing advanced communications skills training to all oncology and hematology providers, in addition to advanced practice professionals. By September 2023, more than 65% of providers at Moffitt will be trained on how to have these conversations early on and more frequently with patients. The initiative is being co-led by Sam and Barbara Lubrano di Ciccone, MD, a psychiatrist with the Supportive Care Medicine Program.

To launch this initiative, Moffitt has focused on the senior adult patient population — a group that generally has advanced stages of cancer. The center has also made changes to the way these conversations are documented in patient records and is developing a measurement framework.

Changing What Hope Looks Like

“For Donna, we were reevaluating these goal discussions intermittently throughout her therapy,” Sam said. “These are not meant to be end-of-life discussions. They can happen any time during treatment, including the first day. Ultimately, this can benefit any patient with cancer, but to get started, we’re focusing on patients with advanced cancer.”

There is a misconception that these kinds of difficult, honest conversations could deprive patients of hope. “This myth has really been debunked,” Lubrano di Ciccone said. “In reality, we’re depriving patients of opportunity — the opportunity to make decisions about their lives.”

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"Hope is not fixed in stone. If we see the hope of living a long life as the only goal a patient can have, then we’re not helping them to see that maybe there are other things they might hope for."

- Dr. Barbara Lubrano di Ciccone

Lubrano di Ciccone says patients’ hopes and goals can transform over time just as the illness trajectory can change. “Hope is not fixed in stone,” Lubrano di Ciccone said. “If we see the hope of living a long life as the only goal a patient can have, then we’re not helping them to see that maybe there are other things they might hope for, like achieving certain milestones or being reunited with a loved one.”

By having goal concordant care discussions throughout their treatment, many more patients could have a better understanding of their treatment options and make decisions based on their evolving values and priorities. “Having these goal discussions can give control back to patients when they’re in a situation that feels out of their control,” Sam said. More patients could feel empowered to make treatment decisions that allow them to make the most of their limited time.

‘I Would Do It All Over Again’

Chemotherapy had been a blessing to Donna in the beginning. It improved her quality of life and helped her feel better for more than a year. After complications began to occur, her priorities shifted. The way she wanted to spend her remaining time changed. During that year in hospice, Donna thrived.

The Dunbars got to explore again, and Donna was able to tend to her garden. They enjoyed time with family. Most importantly, Donna got to meet her first great-grandson, Paxton. Hospice came every other week to check her vital signs and provided her comfort in the end.

Donna Dunbar with great-grandson Paxton
Donna Dunbar holds her first great-grandson, Paxton, in this family photo.

Throughout that last year, the Dunbars shared their photos and adventures with Lombardi and Sam via text messages. Duane made sure to stay in touch with their angel, even sending Lombardi photos of Donna and the newly born Paxton.

“We had a really good year. I’ll always be very grateful for that year,” Duane remembered. “We did whatever we felt like. ... It was just a beautiful, beautiful year.”

It wasn’t until her last week of life that Donna began showing signs of deterioration. Her passing surprised even her closest friends because she had been so vibrant until the very end.

Before Donna passed, she wrote Duane a letter that he later found. It detailed their life together. In between the beautiful moments and the heartbreaks that they endured, the page gave life to their epic love affair. In her final words, she wrote to Duane, “If it was with you, I would do it all over again. Love, Donna.”

This article originally appeared in Moffitt's Momentum magazine.

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Amanda Sangster PR Account Coordinator 813-456-3342 More Articles

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