Years of personal growth, reflection, and scholarship following the loss of her teenage son, David, has led former University Trustee Robin Kanarek ’96, RN, BSN, on a 20-year mission of advocating for palliative care for those with serious illness. With the goal of improving the quality of life for individuals affected with life-threatening conditions, she and her husband Joe launched the Kanarek Family Foundation in 2006 to promote palliative and supportive care throughout all areas of healthcare. Through the generosity of the foundation, the Marion Peckham Egan School of Nursing and Health Studies' Kanarek Center for Palliative Care was established in 2017.

Recently, Kanarek authored a book, Living Well with a Serious Illness: A Guide to Palliative Care for Mind, Body and Spirit (Johns Hopkins Press, 2023), which she and Joe discussed with Richard Greenwald, PhD, dean of the College of Arts and Sciences, and Patrick Kelley ’76, P’12, MD, DrPH, visiting assistant professor of health studies. Available below, it was the first podcast in the Dean’s Series initiated by Dr. Greenwald.

So often, people confuse palliative care with hospice and death, but the two are not interchangeable. Palliative care, noted Kanarek, is a subspecialty that focuses on those with serious illness who need an extra level of support, be it psychosocial, physical, spiritual, or emotional. Reflecting on the months that David was in the hospital 24 years ago, “his medical care was excellent, but he never saw a psychologist or a social worker,” said Kanarek. While the focus on illness was strong, the focus on the individual was lacking. “Everyone in the healthcare system needs to be educated, on a basic level, about what patients are going through.”

The holistic nature of palliative care “is a very Jesuit idea,” noted Dr. Kelley. “It’s also incorporated into the World Health Organization definition of health, which is not just biological, but psychological, social and spiritual health.” 

When it comes to integrating palliative care into the healthcare system, “I believe it will be nurse practitioners who will lead the way,” said Kanarek. “They are the ones who spend time with the patient, who are at the bedside. It will take a financial investment for them to get the knowledge they need, but after that it’s a win-win. Medicare should be jumping on this,” she said.  Palliative care means that more people can be cared for at home, which is not only better for the patient, but less expensive for insurance providers as well. She noted an impressive communication program for healthcare providers at Memorial Sloan Kettering called COMSKIL, which uses actors and simulations to train healthcare providers on navigating difficult conversations with patients and their families.

While medical care is still heavily disease-focused, attitudes are changing as a new generation of doctors becomes more familiar with the concept of holistic end-of-life care. A few hospitals have even created palliative care teams, and “medical schools are just starting to integrate palliative care into their curriculums,” said Kanarek. “Of course, Fairfield University has been doing this in the nursing school for years, and they are way ahead of the game." 

By way of example, she noted that Michael Pagano, PhD, director of Fairfield’s health studies program, requires his students to volunteer at hospice, and they’re asked to write a paper before and after their experience. While the initial papers outlined their fears, the student reflections after their hospice experience noted the joy and purpose they felt after speaking with patients. “Those students felt proud of themselves, and the papers are evidence of how much young people need to volunteer and have conversations with patients,” said Kanarek. Both Kanarek and her husband, Joe, recalled the tremendous relief their son David evidenced after speaking honestly and openly with a doctor with whom he was close.

“This is a very personal and powerful book,” noted Dr. Greenwald. “In reliving this experience, you’ve given us all a gift, [and that is] to be brave enough to have conversations around these issues.”