Improving the Quality of Care and Research for Patients With Cancer and the Ethics Behind Its Delivery

A Conversation With Rebecca D. Pentz, PhD

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Rebecca D. Pentz, PhD

Rebecca D. Pentz, PhD

With the rapid expansion of scientific advances, the intersection of ethics and the delivery of cancer care becomes ever more complicated. To shed light on some of the challenging ethical issues faced by today’s busy oncology practitioners, The ASCO Post spoke with Rebecca D. Pentz, PhD, Professor of Hematology and Oncology in Research Ethics, Winship Cancer Institute, Emory University School of Medicine, Atlanta. Dr. Pentz and the ethics research team conduct empirical ethics research on issues in early drug development, emphasizing informed consent, biobanking, health disparities, and precision medicine.

Moving Interventions to the Clinic

Please tell our readers about your current work.

As Professor of Research Ethics at Winship Cancer Institute, I conduct empirical ethics studies to implement ways to improve the quality of care and research and the ethics behind its delivery. Once we identify an issue, we study it to see if it presents a challenge for patients, and if so, we design an intervention to help patients have a better experience. We then test the intervention, and if successful, we implement it in the clinic.

For example, during a routine clinical trial conversation, it may be difficult for physicians to ask exactly what patients’ current preferences are about joining a clinical trial. So, we developed a simple tool that gives patients three preference areas to check. In this way, physicians see patients’ preferences in real time. Physicians state they like it, and right now we’re testing its efficacy.

Cancer Prevention Program

Can you give an overview of the Cancer Prevention and Control Research Program (CPC)?

Since we are a comprehensive cancer center, we have a very diverse group of investigators and faculty members, who are members of four different research programs: Cancer Immunology, Cell and Molecular Biology, Discovery and Developmental Therapeutics, and Cancer Prevention and Control (CPC). I’m in the CPC, which has 51 members from 20 academic departments at Emory, including the Rollins School of Public Health, the Nell Hodgson Woodruff School of Nursing, and the School of Medicine. The central point of these programs is to encourage collaboration and enhance synergy to further Winship’s research aims, which have the overall goal of reducing cancer risk, incidence, morbidity, and mortality as well as improving the quality of life of patients with cancer and survivors in Georgia and beyond.

In CPC, we work as a collective team at monthly meetings and retreats, during which we brainstorm ways to improve our research and its impact. For example, at the latest retreat, one of my associates suggested I be more aggressive in disseminating the patient education videos I had created with my team. He offered to help distribute them, not just at Winship but all over. So, we sat down and worked up a protocol to interview physicians at Winship, Grady Health System, and our rural sites. We wanted to ascertain what was the best way to use the videos in the clinic, not just posting them on the Internet, where they may or may not be seen.

Also, one of our investigators has done extensive work on decreasing the incidence of second-hand smoke in the home setting. During the retreat, several physicians wanted to implement the protocol in the pediatric setting. They wanted to try to make homes smoke free, especially those with kids who had cancer. This is the type of value-added interventions that arise from our collaborations. These meetings are a productive way to develop ideas to further our research and improve cancer prevention and care.

Efforts to Enhance Patient Education

Please drill a bit deeper into the structure and purpose of the patient education videos.

It began with a call from the Director of Cancer Research at Grady Memorial Hospital. Professionals at Grady are mandated to obtain patient consent before beginning chemotherapy, and she feared that a large number of patients may not have a clue as to what they are consenting to, simply because the terminology can be like a foreign language to them. She considered it unethical for patients to consent to treatment with drugs they did not understand.

So, I did a study to determine the extent of the lack of patient understanding about chemotherapy. We interviewed 50 patients, and the findings were telling. We found a high level of misunderstanding, not only about chemotherapy, but cancer itself, along with the risk of infection, side effects, and the difference between curative and palliative treatments.

I formed an expert panel, and after deliberating on the issue, we decided the best way to address it was through 1-minute teaching videos, with simple language and graphics. The expert panel picked 20 words that were highly misunderstood, wrote the scripts, and created the videos. We tested six of them at Grady, our county hospital with a population composed largely of those in underserved communities.

The videos significantly increased the level of patient understanding. So, we took the video program to rural Georgia, to the oncology clinics that are part of the Winship Network, and the six videos significantly improved patient understanding in that setting too. We’ve now posted the videos on -CancerQuest, which is a cancer education and outreach program at Emory University.

We are in the process of developing ways to get the videos into oncology clinics. I give a lot of the credit to the experts we invited to help, as they perfectly shaped the 1-minute videos.

Stem Cell Transplantation in Children

Please describe your research on siblings of children undergoing stem cell transplantation.

The reason I undertook this research is because many ethicists are concerned about the donor, an HLA-identical sibling, who is often a child in the same family. It’s a complicated issue, as the parents are using one child to save another. It’s a conflict of interest that has many ethicists concerned.

So, we studied it and -discovered the pediatric donors seem to be fine. However, we found the heaviest psychological burden is on the nondonor children, largely because they are often left out of the loop and are not participants. You cannot blame the parents, who are dealing with overwhelming stress surrounding their child’s life-threatening disease. Moreover, one of the parents has to be in the hospital during the full 100 days of the transplant procedure.

I had one little boy I’ll never forget. He lived with his aunt in a trailer in South Georgia, and his brother was undergoing a transplant. As we were talking, he asked if he could ask me a question. I said, of course, and he asked if his brother and mother would ever come home. He said kids at school told him that kids with cancer never come home. No one had explained to him what was happening, and although I could assure him his mother would return home, I could not guarantee his brother would. The ethics team brainstormed with our pediatric oncology colleagues, and we decided that having a Certified Child Life Specialist video conference with kids in that difficult situation could be a solution. We have an ongoing study looking into the feasibility and effects, and the preliminary results are terrific. 

DISCLOSURE: Dr. Pentz reported no conflicts of interest.