Members of the George Washington University (GW) School of Medicine and Health Sciences, physicians and care providers, and those involved in spirituality and palliative care gathered for the 2019 GW Institute for Spirituality and Health (GWish) Fall Celebration Platinum Dinner. The evening featured the presentation of the Fourth Annual GWish Award for Excellence in Interprofessional Spiritual Care. This year the honor went to Marvin Omar Delgado-Guay, MD, assistant professor of palliative, rehabilitation, and integrative medicine at MD Anderson Cancer Center, the University of Texas.
The evening’s keynote address was presented by Robin Kanarek, RN, president of the Kanarek Foundation. In her remarks, Kanarek recalled the instant connection she felt for the GWish mission and the institute’s founder and director Christina Puchalski, MD ’94, RESD ’97. “I had an ‘ah-ha’ moment,” Kanarek said about when she first heard Puchalski speak to the importance of integrating spirituality and health care. “I really understood what Dr. Puchalski was describing, the importance of addressing spiritual distress.”
Established nearly two decades ago, in 2001, to promote whole-person care by integrating spirituality into health care and education, GWish brings together clinicians, physicians, psychiatrists, psychologists, and health care chaplains together to think about compassionate end of life care in an effort to create healing environments in health systems to support wellness and whole health, even in the midst of serious illness and dying. Patient narrative and research studies reinforce the institute’s belief that spirituality — broadly defined as a search for meaning, purpose, and transcendence and a connection to the significant and/or sacred — is associated with better health outcomes. GWish has developed models to address spiritual distress as a clinical diagnosis as data demonstrate that when spiritual distress is ignored patients suffer. GWish’s contributions have garnered numerous grants and recognition from major organizations including the Fetzer Institute, Foundation for Spirituality in Medicine, and the Arthur Vining Davis Foundation.
“There is such a tremendous interest in this area,” said Puchalski as she ran down a list of highlights for the year. “There is a real hunger out there for integrating spiritual care into health systems globally. People often experience loneliness in health systems; what they are looking for is love, compassion, and connection with their health care providers.”
GWish has led Interprofessional Spiritual Care Education Curriculum (ISPEC) courses across the United States and around the world in places such as Australia, Hawaii, and Rwanda. The outcomes-based, education initiative launched in July 2018 to improve spiritual care for patients with serious and chronic illness. The program trains health professionals to recognize, address, and attend to the spiritual needs and suffering of patients with chronic and serious illness. GWish has also been working with medical schools to bring the research-grounded curriculum for interprofessional spiritual care to the student level.
During the program, Puchalski offered a comment from Max Rubin, a fourth-year SMHS student who previewed the online ISPEC course as part of the palliative care elective.
“Module three [on compassionate presence] was very inspiring. I felt chills and familiarity with the motivations I brought into medical school. What has happened since studying medicine certainly has been a focus on the technical, but perhaps not enough on the sacred aspects of medicine. I look forward to bringing into practice these principles from the course, in particular I intend to take a pause moment before seeing each patient, so as to center myself and become prepared for the sacredness of the encounter to come.”
“Our work at GWish,” Puchalski said, “is about those things that Max talked about, we are working hard to lift up the sacred aspects in medicine and health care. We are creating models and practical ways to integrate the sacred into health care.”
In presenting the fourth annual award, Puchalski stressed the importance of Delgado-Guay’s collaborative nature. “We have been very intentional about honoring the interprofessional aspect of that field,” explained Puchalski. In addition to his work at MD Anderson Cancer Center, Delgado-Guay is also an ISPEC faculty member.
“I am humbled to be given this award, and I receive it with an open heart,” he said. “‘We have been called to heal wounds, to unite what has fallen apart, and to bring home those who have lost their way.’ These words from St. Francis of Assisi remind me of the calling of serving people in suffering, and what a privilege it is to touch those sacred spaces in the souls of each patient we encounter.”
In his remarks, Delgado-Guay recalled a patient suffering from an advanced illness whose experience exemplified the positive impact spirituality and humanism can have on patient care. “He was in the same hospital room where two years before his wife had died. When I asked how he was doing, he said ‘I can’t stand this pain anymore.’” As part of his clinical assessment Delgado noted that the patient’s physical pain was well-managed but that the patient has a “deep pain in his soul.”
Rather than offering even higher doses of pain medication, Delgado-Guay instead offered his presence and a chance to talk through what the patient was experiencing. Delgado-Guay talked to his patient about his life and the ways he could help, but mostly he listened. “We involved the [hospital] chaplain and [the patient’s] priest, and it was a healing and sacred moment, I believe.”
Delgado-Guay was able to calm his patient and soothe some of the anxiety he was experiencing. Soon after, the patient was able to return home with hospice care, where he was able to pass in comfort on his own terms. “That’s the action, that’s the compassionate care that we need to offer and continue to teach our students, because it’s not always about medication. It’s about presence and about touching those souls.”
Following the award presentation, Kanarek delivered the keynote address, which focused on the means by which we learn life’s most transformative lessons: experience.
Kanarek shared the lessons she and her family learned through her son, David, who was diagnosed with leukemia at the age of 10, and succumbed to the disease at 15 following more than three years in remission. She recalled how, when the cancer returned just before the start of high school, David underwent an experimental stem cell transplant procedure at Memorial Sloane Kettering. As a consequence of the procedure — wiping out his immune system in the hope that donor cells from his sister would prompt a healthy immune system to develop — David was forced to live in strict isolation to limit possible exposure to infection and viruses. During the second week of isolation, Kanarek noticed her son undergoing a major personality shift.
“Our easy, sweet, charming 15-year-old son suddenly became angry, confrontational, and belligerent,” recalled Kanarek.
The family first turned to David’s treatment team to find out what was happening. It was common occurrence among children placed in strict isolation, they told Kanarek, an answer that didn’t sit well. Next they turned to a child psychologist for answers, but almost immediately looked elsewhere after the psychologist focused exclusively on David’s relationship with his mother, rather than any fears or anxiety he might be feeling.
Finally, the Kanareks turned to their son’s favorite doctor and urged him to talk to David about what he was feeling. After an extensive conversation, the physician emerged from David’s room and told the parents that “David had deep philosophical questions about life and his own mortality.”
The couple worried how their son would respond after such as serious discussion. To their surprise and delight, it was as though a heavy weight had been lifted from his shoulders, and the easy going teen they knew had returned. Ultimately, David died from a fungal infection, a complication from the treatment, but not before he had an opportunity to work through the burden of his experience.
“How many similar children have suffered in silence without this type of intervention?” Kanarek wondered.
During a symposium in Spring 2019 at the Kanarek Center for Palliative Care at Fairfield University School of Nursing, Kanarek first met Puchalski as she presented on the role of spirituality in palliative care. She listened intently as Puchalski presented the keynote address, describing how spiritual distress is a common clinical problem among those facing life-threatening illness.
“As Dr. Puchalski described the many issues adults experience when facing spiritual distress, I had an epiphany. What she was describing was what David experienced when he was in strict isolation almost 20 years ago. From what I could guess, David’s fear of his own mortality came under the term of ‘spiritual distress.’ Suddenly I felt as though I had gone in a full circle. … Someone had described an aspect of care that our son so desperately needed.”
That moment would ultimately lead the Kanarek Family Foundation to support an ISPEC Train-the-Trainer Program focused on pediatric cancers and other serious childhood illnesses.
The palliative care field has only recently begun focusing on children and young adults, and there is recognition of the importance of attending to the spiritual needs and suffering in children with serious illness and their family members. Pediatric health care professionals often lack training to provide care that incorporates spirituality. The ISPEC pediatric program will develop the spiritual skill set of professionals who work in pediatric palliative settings by focusing on leadership skills, institutional culture change, goal development, and integration of spiritual care into clinical practice and education, including assessment and treatment.
“If we can prevent more children with serious life-threatening illnesses from experiencing spiritual distress, and if we can educate health care providers on how to assess their patients’ needs, then [this gift is] money well spent,” Kanarek said.
“I will never forget the expression on David’s face after that existential discussion with his doctor,” she added. “Hopefully our contribution, and Dr. Puchalski and her team’s work, will do the same for other young patients.”