“Aha” moment: Discovering the hidden experience of spiritual distress in illness

The Gold Humanism Honor Society put out a call as its Golden Glimmer #11 for GHHS members and all those interested in healthcare to share their “aha” moments: When was the moment you realized that medicine was more than simply science, but also intertwined with philosophy and humanity? We received this powerful answer from a nurse and a mother, Robin Bennett Kanarek.

By Robin Bennett Kanarek

My “aha” moment occurred during a presentation for healthcare professionals at Fairfield University’s Egan School, Kanarek Center for Palliative Care in Fairfield, Connecticut. Christina Puchalski, MD, from George Washington University Institute for Spirituality & Health (GWISH) in Washington, D.C., was the guest speaker. Dr. Puchalski, an international leader in the movement to integrate spirituality into healthcare, is the founder and director of GWISH. Her topic of discussion was spiritual distress and how it is manifested in adults who are seriously ill.

Spiritual distress, as defined by Dr. Puchalski and Dr. Betty Ferrell in their book, Making Health Care Whole, refers to a person’s “impaired ability to experience and integrate meaning and purpose in life through connectedness with self, other, art, music, literature, nature, and/or power greater than oneself.”

Spiritual distress can be caused by existential concerns, grief and loss, and isolation. It occurs when a person cannot find sources of meaning, hope, and a sense of connectedness to life. Living with an illness challenges one’s sense of normalcy and may lead to a sense of loss over their decline in health. Behavior manifestations include anger, sense of loneliness, hostility, depression, difficulty sleeping, sadness, anxiety, and feeling of abandonment. In addition, one may question if they contributed to their failing health.

When Dr. Puchalski described these symptoms of spiritual distress to the audience, I had an epiphany. For over 20 years, I had lived with questions about my son’s personality change after he relapsed from leukemia and underwent a stem cell transplant at a major children’s cancer center. He was placed in strict isolation for several weeks while his new immune system developed. Only those who had to enter the room for medical reasons were allowed. My husband and I could stay as long as we wished.

During the second week in strict isolation, our easy-going, happy-go-lucky son became angry, depressed, and aggressive toward his healthcare providers and us. When I asked the team about his personality changes, many providers stated that this was “a regular occurrence” in children who underwent a bone marrow or stem cell transplant. Unfortunately, the healthcare team provided no other information on the specific cause of such a change in his personality.

Robin Kanarek with her son, David, in 1997

Luckily, I had pressed one of his favorite doctors to talk with David about what he was experiencing. The doctor sat with him for three hours, and when he emerged from our son’s room, he told us that David had many “philosophical” questions about life. He didn’t tell us specifically what the issue was, but it was evident that David was concerned about his own mortality. As my husband and I entered the room, we expected him to be despondent. Incredibly, just the opposite occurred – for the first time in two weeks, he had a smile on his face and wanted to play a game with us. It was a transformational experience for us.

When Dr. Puchalski described to the audience at Fairfield University what an adult exhibits during spiritual distress, I viscerally recognized her description – my son went through the same experience, but no member of the medical staff had acknowledged it to us.

Finally, I had an answer for David’s profound personality transformation. At the end of Dr. Puchalski’s presentation, I stood up and told a group of 200 healthcare professionals that I had an “aha” moment. My teenage son exhibited the same spiritual distress symptoms as adults did. I went on to explain the specifics of this epiphany and how for 20 years, I wished I knew what David experienced. Now there was a term for what he endured! I am grateful to his transplant doctor for allowing David to vent what was troubling him, to be heard, and for his experience to be validated.

Now that I had the information on what David experienced, it left me with many questions. For example, how many other children who underwent bone marrow or stem cell transplantation had the same experience as our son? Did they suffer in silence? Did someone take the time to help them process what they were going through? Were other parents questioning how they could have helped their child during a similar experience? Or were the parents left feeling guilty and vulnerable because they couldn’t take away their child’s anguish?

I am so grateful to have heard Dr. Puchalski’s description of spiritual distress. It validated my maternal instinct that something was wrong and has propelled me to learn more about acknowledging the spiritual element of an illness. Too often, healthcare staff needs to be more knowledgeable about identifying spiritual and existential questions, and most chaplains need more time or training to identify and deal with them. Dame Cecily Sanders, MD, identified the concept of “total pain” in the 1960s. Total pain describes suffering that can be physical, psychological, social, and spiritual and precipitates a crisis. Acknowledging that pain is multidimensional is the most humane way to deal with pain and suffering.

I currently volunteer at my local hospital, doing spiritual support for hospitalized patients. It required intensive training from a chaplain who is certified in palliative care. Our group of volunteers meets regularly to discuss how we can aid those patients in need of spiritual support. Although I am an RN, I am not a social worker nor a chaplain. I am a good listener, though, which is one of the essential characteristics of someone who provides spiritual support.

My husband and I established the Kanarek Family Foundation in memory of our son in 2006. Its mission is to improve the quality of life for those affected by cancer and other serious, life-threatening conditions through the promotion, education, and integration of palliative and supportive care into all areas of healthcare. After hearing Dr. Puchalski’s presentation at Fairfield University, I contacted her several weeks later to discuss what type of work had been done for children who experience spiritual distress, like my son. She admitted to me that no research was being done on pediatric spirituality. After several conversations, we decided to fund a project at George Washington University School of Medicine under the leadership of Dr. Puchalski to educate healthcare practitioners on how to identify and help children and their parents through the arduous experience of a serious illness/hospitalization.

GWISH was already providing Interprofessional Spiritual Care Education (ISPEC) through a national and international outcomes-based educational initiative whose mission is to improve spiritual care for patients with serious and chronic illnesses. The funding, provided by the Kanarek Family Foundation, was used to train healthcare professionals on how to communicate with pediatric patients with serious illness and their family members about spiritual issues, identify spiritual distress, integrate spiritual issues into their treatment or care plans, and to help build leadership in interprofessional (nurses, physicians, psychologists, social workers, chaplains, and allied health professionals) care in children’s hospitals. The curriculum was developed by experts in pediatric palliative care and/or spirituality. The first pediatric ISPEC conference was unveiled in September 2021 at George Washington University.

Dr. Puchalski’s presentation at Fairfield University opened my eyes to an issue not previously apparent to most medical professionals and me. Now we can all say “aha” to meeting the spiritual needs of children who are seriously ill.

Do you have an “aha” moment to share? When was the moment you realized that medicine was more than simply science, but also intertwined with philosophy and humanity? Submit your story here.

Robin Bennett Kanarek has been a registered nurse for over 40 years. Her 10-year-old son, David, was diagnosed with acute lymphocytic leukemia in 1995, achieved remission for four years, and relapsed. He underwent a stem cell transplant in 1999. Unfortunately, David developed graft vs. host disease and died in 2000 at 15. As a way of healing, Robin began writing articles on her personal experience and shared them with other healthcare professionals in nursing and medical journals. In 2006, she and her husband founded the Kanarek Family Foundation, a non-profit 501(c) (3) organization. Its mission is to improve the quality of life for those affected by cancer and other serious, life-threatening conditions through the promotion, education, and integration of palliative and supportive care into all areas of health care.

Johns Hopkins University Press will publish her first book in the spring of 2023. The book is titled Living Well with a Serious Illness: A Guide to Palliative care for Mind, Body, and Spirit. Although palliative care is often associated with hospice and end-of-life planning, Ms. Kanarek argues for a more expanded definition incorporating palliative care earlier in a patient’s journey. Living Well with a Serious Illness helps patients and their caregivers understand:

  • what palliative care entails
  • how to access the support they need when going through a serious illness
  • what questions to ask medical professionals
  • how to navigate advanced care planning
  • definitions of common terminology used with end-of-life planning
  • the importance of spiritual care, coping strategies, and emotional support
  • how to become an advocate for palliative care

Ms. Kanarek’s book will illuminate the importance of seeing patients as individuals who can benefit from care for their body, mind, and spirit ― the core tenet of palliative care. Learn more at Johns Hopkins University Press, the Kanarek Family Foundation website, and Robin Kanarek’s author website.