new world
Medconference

The Anatomy of Hope
What sustains a commitment to care for the suffering? A panel of three nurses talk about offering all of themselves in a profession where, “when love is shown, it transcends our preconceptions, worries, and objections.” Their striking and life-changing accounts reveal the reason for this annual MedConference, which gives voice to that profound “quiet piece”–as an “invitation to a sacred place.”

by Giacomo Maniscalco

“What is it that urges us to care for others?” At the 2012 MedConference in Florham Park, NJ, healthcare professionals faced this enormous question, whose answer illustrates the core of the reason for this unique annual three-day event hosted by The American Association of Medicine and the Person. As chief organizer, Dr. Elvira Parravicini, said in her introduction of the conference, its purpose is “to establish a place where we can be helped in regaining the awareness of the original desire that moved us to enter the medical field.” The need to consider such questions comes from a real challenge, as described in the MedConference mission statement, which is the risk that their work be “reduced to a mechanical process” that focuses only on “the cure of physical well-being.”
On Saturday, October 20, 2012, at 3:00 pm, the theme, “That Nature that Urges Us to Care for Others is the Heart,” took center stage. Three nurses from different backgrounds, with different jobs and different approaches, came together to share their insights. Jeff Bushman is a father of five who, while still working fulltime in the auto industry, put himself through nursing school and now works as an oncology nurse at St. Cloud Hospital in Minnesota. Princy Rose Abraham is a registered nurse in the Neonatal Intensive Care Unit (NICU) at Cohen’s Children’s Medical Center (New York), part of the North Shore–Long Island Jewish Health System. And Philene (Bean) Cromwell is a pediatric nurse practitioner who helped develop and now directs CompassionNet, a home-based pediatric palliative care program in upstate New York.

Not unaffected. Jeff Bushman’s is the story of a family man who realized he needed a change in career in order to be true to himself. He spoke first about what it was like for him to be cared for by others. At age 22, complications following his Chron’s disease diagnosis landed Jeff in the ER. He recalls the nurses who were with him: “They touched my life with their attentive ears and caring hands at a time when I did not even know if I would live to see the dawn of the next day. The memory of these nurses continues to be an example for me of the  the kind of person I’d like to be.” Thus, his journey began. Now, as an oncology nurse, on a daily basis Jeff witnesses immense pain, as well as lack of hope. He spoke of Susan, a 40-year-old mother of four who was diagnosed with cancer: “Her life was turned totally upside down by her diagnosis, separation from her family, and the financial burden of her treatment, not even to mention her physical battle with the leukemia treatment, but she rarely was short tempered.” As he told of this woman losing a tough battle to cancer, Jeff revealed everything that being a nurse means to him. His approach to caring for the patient takes all of him. Being a good-natured man with a booming laugh, Jeff joked about being “forced to offer therapeutic sarcasm as well.” At Susan’s funeral, his sharing in the family’s pain was the result of choosing to live his job the way he does. “Do I feel I crossed any boundaries with Susan? I would have to say no. Do I feel that I was changed by my experience with her and her family? I would have to say yes. Would I say the experience was easy or without a consequence for me? No. I did not become a nurse to be unaffected.”

Behind the doing. When he was first invited to speak at this conference, Jeff feared his experience as a nurse to be “too ordinary,” but upon reflection he realized that he and others would be helped by his expressing the simplicity behind what he does. “What was at the center of the beginning of the nursing profession long before it was called a profession? What must not be lost in our pursuit of the cure of illness? What propels us forward in the face of time constraints, poor prognoses, and stressful family interactions? The answer to all these is: the heart.”
  Princy Abraham took what she calls a “typical road” into the nursing profession: “I became a traditional healthcare worker whose primary duty was to do whatever was necessary to assist the patient population and, in the process, developing the medical skills necessary.” Princy added, “My value was defined by the level of competency I possessed rather than by how sympathetic I was to my patients and their families. Therefore, I was deeply desensitized to their suffering.” A dramatic experience in Princy’s personal life changed all that. In February of 2011, she was 24 weeks pregnant with her first child when her membranes ruptured. She was hospitalized for a week before delivering her son, Aaron Samuel Abraham. To her dismay, Princy was immediately approached by her coworkers with various statistical assessments regarding the chances for Aaron’s survival. He was critically ill with “every medical condition a pre-term baby could be faced with” and was immediately admitted into the NICU. “I suddenly felt the anguish which I had only ever seen in other parents. Until then, I was a caregiver but then I became a mother whose child was in a critical state.” Unfortunately, Aaron did not make it. From that point on, she “learned to look upon every life as beautiful, no matter how long or short it may be.” She urges everyone to “accept the reality of their loved one’s sustainability” and to “attempt to acknowledge the limitations of treatments involving high technology.” For Princy, medicine practiced in any other way falls short.
Philene “Bean” Cromwell runs a palliative end-of-life care program for children. How did such a bright, sunny person end up in this kind of work? Bean explained, “It is said that some go into the healing profession to be healed themselves, and this might be true for me as well. There are many things that urge us to care: compassion and passion, the privilege of being invited to that sacred place... It’s the privilege and art of being present, the absolute power of kindness, the anatomy of hope, and it’s one child at a time.”
Bean’s CompassionNet team, with three large hospitals, has served over 1,100 families since its inception. Her clinical role includes pediatric nurse practitioner consultation for pain and symptom management, facilitating conversations with children and their families to determine goals of care, and caring for the terminally ill child and the family when the child is nearing end of life. Bean reveals the profound focus of her work: “It’s not really different from adult palliative care but kids aren’t little dying adults... It’s the relief of spiritual, emotional, and physical suffering of children and their families.” Bean’s life and work are governed by the importance of hope and kindness, “especially when the situation goes from curative to palliative.” She added, “It is a little embarrassing that after years and years of research, we have to say the best answer is: just be a little kinder. And I love that.”
She tells of Jennifer, who was about 16 years old when Bean met her, suffering from metastatic osteogenic sarcoma. Jennifer had been “lost in the system” and was labeled as a “non-compliant kid.” Bean was asked to go to her home in a tough area in Rochester, NY, where she was greeted by the girl’s somewhat suspicious family. While there, Bean discovered a protruding mass on her rib cage which meant that she was getting new lesions on her current chemotherapy regimen. At that moment, Bean recalled the words of one of her nursing teachers: “Try to be a little present and just ask a kid, ‘If you had three wishes, what would they be?’” Bean did just that, “and, in that simple way of just trying to be present with her, we learned all sorts of things about Jennifer.” Bean got Jennifer into the hospital and, for the first time, she was really in control of her pain. Then Bean brought her and her mother to Chuck E. Cheese’s–that was her wish, to have lunch with her mom. Bean also started art therapy with Jennifer. “We did all the things that were just little wishes of hers, and it was a privilege.” Finally, Bean asked her if she had any other wishes. Jennifer did have one huge wish: to see her brother David who was in boot camp. With a lot of help he had been able to come and see his sister earlier on in the illness, but she hoped to see him one last time. Bean recalls, “Jennifer was alert, awake, and in respiratory distress. We were giving her morphine. I had seen this before; she was waiting for someone. ‘David is coming; David’s coming.’ Because we had been so present, her mother trusted us to tell Jennifer that David wasn’t coming again, so we did. Jennifer looked at her mother... and died–within 30 seconds of this news. It was beautiful staying in front of her.” Through Jennifer, Bean learned the importance of being close to the patient in every aspect of life.

A life altering experience. After the MedConference was over, Bean discussed the value of the MedConference for herself and all participants: “In caring for children at end of life, I always feel that there is a very ‘quiet piece’ of what I do that is hard to put to words, a testament to the children and families that I care for. That is precisely how I felt about my experience while attending and speaking at the MedConference. On my return, I had a difficult time explaining to my colleagues just why this conference felt life altering. Perhaps it was because I was among kindred spirits–clinicians, young as well as seasoned, who care very much about the human connection that allows for compassion, and random acts of kindness in a challenging medical arena that at times feels quite broken. I left feeling connected and hopeful.” Dr. Parravicini echoed Bean’s gratitude: “What I really learned during these days is that our job is to affirm that patients are not biological phenomena, a sum of chromosomes; nor are they defined by the cultural hegemony that considers them useless or even ‘dangerous.’ Whether our patients are curable, chronically ill, or terminal, they are constituted by a relationship with a mystery who gives them life. We work to support the fulfillment of their lives.”
Concrete experiences, shared by healthcare practitioners, conspire to  build true fraternity in this field fraught with age old–and new–challenges. In responding to the probing question, “What is it that urges us to care for others?” they presented a piece of their life, a piece of their heart.