When the doctor came in, he pressed on the tumor in Neeraj Arora’s chest and said Arora had lymphoma. As he recoiled in pain from the pressure on his chest, all Arora could think was, “Dave, you were so right.”
Arora was thinking about his graduate advisor, Industrial and Systems Engineering Professor Emeritus Dave Gustafson, who directs the UW-Madison Center for Health Enhancement Systems Studies (CHESS). Gustafson once had told his students that breast cancer patients reported going emotionally numb as doctors delivered the bad news.“I couldn’t process anything the doctor was telling me,”Arora recalls of his diagnosis on Halloween 1994. “I was in a daze, and a nurse dressed as a witch bumped into me. She apologized for scaring me, and I told her she did not scare me, but the doctor sure did.”
At the time, Arora was in his third semester as an industrial and systems engineering graduate student. Prior to UW-Madison, he had earned his bachelor’s degree in India and was pursuing a master’s degree in manufacturing at Kansas State University when he visited his sister and brother-in-law, who were students at UW-Madison. During the visit, Arora met with Gustafson and discussed shifting his career toward healthcare.
By the fall of 1994, Arora was working for Gustafson at CHESS and taking classes when he started to feel excruciating pain all over his body. Eventually, he was diagnosed with an aggressive case of non-Hodgkin’s lymphoma.
Among the first people to visit Arora as he began a 49-day stretch in the hospital were Gustafon and Pascale Carayon, Procter and Gamble Bascom Professor in Total Quality and industrial and systems engineering.
Though Arora was worried about losing his position as a research assistant and, by extension, his healthcare, the CHESS team and department friends petitioned the university on his behalf. Arora was able to remain enrolled for a few credits, and Gustafson paid for his health insurance and assured him a job would be waiting.
Gustafson told Arora he had a unique opportunity to conduct quality of care research. “This is the most in-depth internship you can have,” Arora recalls Gustafson saying. Though neuropathy in his fingers prevented Arora from writing for much of those 49 days, he acutely observed and kept track of his experiences. “Making these observations helped me cope and gave me focus,” he says.
While in the hospital, Arora’s weight plummeted to 88 pounds, and he lost so much muscle he was unable to lift his chin or head. He suffered from intense side effects, including mucositis, which prevented him from eating or talking for several days. Yet throughout, Arora maintained his sense of humor and awareness of what was happening around him. At the heart of his observations were the doctors and nurses providing treatment. He remembers exceptional kindness by particular nurses and doctors, and callousness by others, including the physician who diagnosed him.“You have to be human,” he says. “Be there for the patient; give them hope.”
It took about a year for Arora to be healthy enough to return to school and research full time, but he never questioned that he would go back. “I was so motivated and wanted to give back to the cancer community,” he says. “I wanted to make contributions that would make a difference to patients.”
Arora’s experiences as a patient not only inspired his graduate research but also launched his distinguished career as a cancer communication researcher. After receiving his industrial and systems engineering master’s degree and PhD in 1998 and 2000, respectively, he accepted a position as a research scientist in the Division of Cancer Control and Population Sciences at the National Cancer Institute (NCI), where he was, and remains, the only engineer.
Now a program director in the institute’s Applied Research Program, Arora hopes to facilitate the delivery of patient-centered care that would provide patients and their family members with ongoing support beyond initial diagnosis and treatment. For more than 12 years, Arora’s research has integrated the fields of health communication, outcomes research and cancer survivorship. His expertise includes assessing patient-reported outcomes, such as patient
experiences and satisfaction, information needs and health-related quality of life, and the impact of patient-clinician communication.
In 2007, Arora directed the publication of a comprehensive NCI report on patient-centered communication that aimed to reduce suffering and improve healing. His team outlined a model for healthcare professionals and organizations that includes the need to understand a patient’s worldview, how to facilitate informed decision making, manage uncertainty, and help patients self-manage once at home by developing supportive relationships among the care team, patients and their family members.
The same year, Arora found himself again on the receiving end of clinical treatment. He was diagnosed with congestive heart failure, a possible result of his intense chemotherapy regime. Even though Arora is an especially savvy healthcare consumer, he says the heart condition was an entirely new ballgame. “There are more fears when you have a family and dreams,” he says.
Though it’s been more than a decade since his cancer went into remission, his heart treatment experiences showed Arora that there is still a need for better clinician communication training. “Things are changing in terms of
doctors realizing they need to be interpersonal, but we don’t train doctors and nurses together as a team, and we need to teach all clinicians how to be sensitive to patient needs,” he says.
As he battles his latest health challenges, Arora continues to make significant research contributions. In November 2010, he received a National Institutes of Health award of merit from National Cancer Institute Director Harold Varmus. The award recognizes Arora’s leadership in building a research program to assess, monitor and improve the delivery of patient-centered cancer care.
Arora continues to hold onto lessons he credits to Gustafson. “Do research that truly makes a difference—that’s what CHESS taught me. There’s no point doing research just to get published,” he says. “It has to have the potential to somehow affect the lives of people.”