Robin Bennet Kanarek On Her Book “Living Well with a Serious Illness”

Joe and Robin with children, Sarah and David

EVERYTHING ROBIN BENNETT KANAREK DOES TODAY IS IN MEMORY OF HER SON, DAVID. And that includes her recently published book, Living Well with a Serious Illness: A Guide to Palliative Care for Mind, Body, and Spirit.

When David died in 2000 at the age of fifteen from cancer, palliative care was still mostly unknown, only becoming a board-certified subspecialty of medicine in the United States in 2006. Today, almost twenty years later, it is still a misunderstood branch of medicine, which was the main reason Robin wrote her book.

“Any project I do is to honor David,” she says. “This book is a form of healing for me but also my chance to help other people learn about palliative care.” In its simplest definition, palliative care affords patients with life-limiting illness the physical, social, psychological and spiritual support they need, delivered by a multidisciplinary team of professionals that includes medical doctors, nurses, social workers and chaplains. It is often confused with hospice care, which is provided only at the end of life. Patients can receive palliative care early in diagnosis with the purpose of improving the quality of life for themselves and their family or caregivers.

However, there’s a big but. “If you don’t know what palliative care is, you aren’t going to ask for it; and that means you won’t get it,” says Robin. She wishes she and her family could have asked for palliative care to help them navigate David’s illness. She hopes her book will help millions of people facing life-limiting disease.

In 2005, Dr. R. Morgan Bain was the chief resident of internal medicine at Norwalk Hospital. He equated palliative care with hospice until he attended a conference on end-of-life care that changed his career. “It was my Eureka moment,” he says. “I knew immediately that palliative care was the branch of medicine I wanted to pursue.” He is now medical director of the Stephen and Betsy Corman Center for Palliative Care at Greenwich Hospital.

“Our approach to care is a little different from other fields,” he explains. “We are like a team sport, providing care as a group.”

He says it’s common for the palliative care team to meet patients for the first time in a hospital, something he says needs to change.

“We want to move outside the hospital walls, engage patients when they are healthier, so that they can traverse their illness with more support. The common denominator with all palliative care patients is suffering—and that can be physical, spiritual, emotional or social.” He notes that palliative care patients’ illnesses are progressive. “The palliative care team can help the patient and their caregivers understand the trajectory of the disease and prepare them for what might be coming down the road. The benefits of a palliative care approach have been studied and are numerous.”

Robin was a nurse for forty-five years and feels strongly that compassion—a cornerstone of palliative care—is a necessary part of medicine. She wishes that palliative care was available in 1995 when David was diagnosed with leukemia, because although he received the best care available at the time, it did not address his quality of life, personal goals, spirituality or any other facets that made him the David Kanarek his family knew and loved.

In 2006 Robin and her husband, Joe, established the Kanarek Family Foundation based in Greenwich. Its mission is to improve the quality of life of those affected by cancer or other life-threatening conditions through the promotion and integration of palliative care into all areas of American healthcare. All proceeds from the book go to the Foundation.

Her book is a detailed look at palliative care, and according to Dr. Bain, a book whose time has come. “We need people to read the book, so they understand palliative care and can get the critical care that is available to them.”

Both Robin and Dr. Bain agree that although someone might not need palliative care right now, there will come a time when you or someone you know or love is in need of palliative services.

Making an Impact

The Foundation’s hard work has paid off in many ways
The Kanarek Family Foundation has funded many programs, including the following—all supporting its mission to encourage innovative approaches in palliative and supportive care.

Subsidized the development and implementation of a pediatric “Train-the-Trainer” interprofessional spiritual care education curriculum in palliative care at the George Washington Institute for Spirituality and Health in Washington, D.C.

Underwrote the creation of the Kanarek Center for Palliative Care in the Egan School of Nursing at Fairfield University to offer a comprehensive, integrated curriculum providing students and nursing professionals the education to be leaders in palliative care.

Underwrote the creation of an advanced communication module for nurse practitioners caring for pediatric patients and their families at Memorial Sloan-Kettering Cancer Center in New York City

Created David’s Treasure Tree in the pediatric unit of Stamford Hospital, providing a gift to any pediatric patient

For more information visit kanarekfamilyfoundation.org


When Is Palliative Care Right?

According to the Stephen and Betsy Corman Center for Palliative Care at Greenwich Hospital, palliative care guidelines for the patient and family include:

  1. Experiencing uncertainty regarding the prognosis and goals of care
  2. Living with difficult physical and emotional symptoms related to a serious medical illness
  3. Showing a decline in physical health with multiple hospitalizations
  4. Suffering through prolonged hospitalization with poor prognosis
  5. Facing patient and family stress with unresolved psychological or spiritual issues
  6. Having questions or concerns about a living will and advance directives

Benefits of Pallative Care:

  • HIGHER QUALITY OF LIFE SCORES FOR PATIENTS
  • GREATER SATISFACTION OF CARE FOR BOTH PATIENTS AND FAMILIES
  • FEWER TRIPS TO THE EMERGENCY ROOM
  • IF ADMITTED, SHORTER HOSPITAL STAYS
  • PATIENTS LIVING BETTER AND OFTEN LONGER
  • MANAGEMENT OF PATIENTS’ SYMPTOMS IMPROVING

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