LOOK has been touched by Robin Bennett Kanarek’s giving spirit and candid approach along with her passionate advocacy for palliative care. Her book, Living Well with a Serious Illness, A Guide to Palliative Care for Mind Body and Spirit is a road map for those with loved ones in need of help, and has been a source of healing for Robin since her son lost his battle with childhood cancer. Robin grew up in Stamford and graduated from King Low-Heywood School (now called King). Robin shared her story with us.

How did you start your nursing career?

I had every intention of pursuing art and was accepted early decision at Skidmore, but in my senior year of high school worked for a local pediatrician (Stuart Danoff). His nurses loved to teach me about healthcare and nursing. Just before I started Skidmore, I changed my major to nursing (they had a stellar nursing program at the time,1975). I never did take an art course because the nursing curriculum was too intense.

Nursing has been a wonderful career choice for over 45 years personally and professionally. My interest was in medical chronic conditions (heart disease, spinal cord and stroke rehabilitation, and diabetes education), because I loved getting to know the patients and their families. My parents were reluctant when I chose nursing as a career, but after I started my first job at Stamford Hospital on their cardiac unit, they received glowing reports from patients who were cared for by me. When my parents and David were sick, my nursing background was incredibly helpful in my ability to care for them. I never panicked and knew how to get the information I needed.

I find nursing very fulfilling, but it can also be incredibly stressful. It is of prime importance to learn how to take care of yourself (mentally, physically, emotionally and spiritually) and to learn how to reenergize (meditation, exercise, healthy diet, knowing your priorities); otherwise, you can burn out easily. With healthcare still recuperating from COVID there is much discussion about resilience, the need for self-care for doctors and nurses, and rediscovering the reason why one originally went into the healthcare field.

How did your writing journey take shape?

Since 2005 (five years after David’s death), I started writing about our family’s experience caring for David after his stem cell transplant. It was a very difficult time for us all. I specifically wanted my stories to be published in nursing and medical journals because, being a nurse, I wanted my colleagues to read about the “lived” experience and share what I had learned. Two years after his death (he died in 2000), I realized no one had focused on David’s psycho-social, spiritual care. I wanted to change that and highlight how these three aspects of care would have addressed crucial aspects of his psyche, especially after his transplant when he was in strict isolation for many weeks.

After several years of writing, I asked myself, ‘Who was going to teach the consumer what palliative care is?’ The majority of people, including many healthcare providers, use the term palliative and hospice care interchangeably, but they have different trajectories: Palliative care can be initiated at any time in the diagnosis of a serious illness and implemented with curative treatment. It is highly recommended that it should be started soon after diagnosis, especially for those who require symptom management. People with a serious illness include cancer, heart failure, kidney disease, lung disease, ALS, traumatic brain injury, Parkinson’s Disease, Alzheimer’s. It can also include those who suffer from multiple chronic diseases. Palliative care focuses on quality of life, what is important to the patient, education, and supportive services. Hospice is provided to those with six months or less to live, and it requires a doctor’s authorization. The patient and their family must understand that curative treatment is no longer an option in hospice care, and comfort care and pain management are the primary focus.

In 2017, our family foundation underwrote the establishment of the Kanarek Center for Palliative Care at the Egan School of Nursing at Fairfield University. After the Center opened, it dawned on me, ‘Who was going to teach the consumer what palliative care provides to those with a serious illness?’ I did a full search on what books were available to educate the patient. The books, written by palliative care experts, primarily focused on educating healthcare providers on disease management and end-of-life care, not the full spectrum of palliative care. That was when I decided I needed to write a book. I started the process in 2019. COVID delayed the publishing process by almost a year. The book has been written to honor David’s memory. He would have wanted me to share what I learned with others.

Another reason I wrote the book was to focus on the importance of psycho-social and spiritual support. David’s case was so complex after he relapsed that the transplant team concentrated more on his medical needs with no focus on how we were adapting to all the changes a transplant thrusts upon you. When David was in strict isolation after his stem cell transplant, he experienced a major personality change. No one could address what caused this. It took 20 years for me to learn the cause – spiritual distress. Christina Puchalski, MD, from George Washington University, presented at the Egan School of Nursing (Fairfield U) in 2017. She is a leading expert in spiritual distress. It opened my eyes to a realm in healthcare that is misunderstood and underutilized. As a result of this experience, I do spiritual support with patients at Greenwich Hospital. Rabbi MJ Newman, a board-certified palliative care chaplain, trained a group of volunteers to meet the spiritual needs of patients. I wish I had learned about spiritual care in nursing school. It has opened my eyes to the importance of human connection and compassion.