Kate Nelson, 2007 Fellow
I was awarded a fellowship to explore the provision of care to dying patients in various settings—internationally and domestically, big city and small town, with adults and children—and to create a series of comparative essays examining my experiences more deeply. I spent four months in primary care clinics in Chile and Paraguay, learning about the overlap of chronic and terminal illnesses in resource-poor settings. In Boston, I received formal instruction through rotations on adult and pediatric palliative care services, where I saw patients with acute illnesses in tertiary care centers. In my northwest Missouri hometown I spent six weeks following social workers and chaplains on home hospice visits where I learned how sharing stories and jokes and prayers can significantly impact a patient's well-being. Finally, I spent one month in Durban, South Africa rotating at an HIV hospital where I experienced palliative care delivery in a setting with grim prognoses and limited access to therapeutics.
Eric Zwemer, 2007 Fellow
Pediatric Palliative Care is a relatively new subspecialty that seeks to provide the best quality of life for children with life-threatening illnesses and their families. For my Ghiso Fellowship, my primary objectives included gaining exposure to the field of Pediatric Palliative Care and exploring the role that magic can have in this field. For six and a half weeks, I worked with the Pediatric Advanced Care Team at Children’s Hospital Boston in all of their daily responsibilities. My roles as “PACT Medical Student” included pre-rounding on patients in the morning, attending all family and patient meetings, and handling certain Quality of Life issues assigned to me. Throughout the course of my experience, I was able to meet and bond with many children with life-threatening illnesses, ranging from a 13 year old with Cystic Fibrosis to a 5 year old with Congenital Heart disease. In order to investigate a potential role for magic within this field, I spent part of most days either performing or teaching magic tricks for children. These experiences served to entertain, distract, and empower these kids. In addition, I ran a magic workshop for the Spinal Muscular Atrophy Conference held in 2007, where I taught a few basic tricks to children with SMA. I also went on two “Magic Home Visits” with a nurse from the Partners Transitions for Kids Program, leaving the hospital to perform and teach magic for a child in the comfort of their own home. Finally, as part of a more longitudinal project, I am in the process of assembling two booklets of magic tricks for physicians and kids, including tricks that involve items found easily within the hospital. Through the support of the Ghiso Foundation, I was able to fully immerse myself in the field of Pediatric Palliative Care, and I am extremely thankful for the opportunity to explore this holistic approach to pediatric patient care.
Eric’s Final Report
Molly Collins, 2006 Fellow
Shadowing talented and compassionate professionals formed the cornerstone of my experience during the year I was supported by the Ghiso Fellowship. Several themes emerged from this unique exposure to end-of-life care: an understanding of patients’ fears of addiction; the persistence of consciousness despite appearances; and a greater appreciation for the many barriers to enrolment of eligible patients in hospice care. In addition to shadowing, I took part in ongoing educational and advocacy efforts through work with Compassion Sabbath (a group working with religious leaders to address end-of-life issues), discussions with classmates, and through leading the Palliative Care Interest Group at Harvard Medical School. Finally, I worked on two separate research projects addressing the role of blame in medicine, and crying among medical trainees.
Molly’s Final Report
Kevin Selby, 2006 Fellow
The goal of my project was to experience and learn about the use of music in palliative care. My initial research revealed a rich community of people using music in health care. I worked with several music therapists and saw how music can be used as a healing tool. I had the privilege of meeting researchers, composers and musicians who explored the power of music to affect us. I then focused on two experiences: shadowing palliative care doctors at the Dana Farber Cancer Institute, and playing the piano for patients at the Hebrew Rehabilitation Centre.
Kevin’s Final Report
Kelly Edwards, 2005 Fellow
Through the support of the foundation, I was able to combine research and clinical activities dedicated to pediatric palliative care. In partnership with the Dana-Farber Cancer Institute and Children’s Hospital Boston, I conducted a study that explored parental perspectives on the end-of-life care of children with advanced cancer. By interviewing both mothers and fathers, we sought to generate a more complete picture of the experience of children with advanced illness and their families. Specifically, we analyzed gender differences in the understanding of prognosis and primary goals for the child’s treatment, explored how couples work together to negotiate the decision-making process, and asked parents about their child’s experience of suffering at the end of life. We found that although fathers are more likely than mothers to focus on cure at the time of diagnosis, the majority of both fathers and mothers focus on relief of suffering at the end of life. Only one third of couples shared the primary goal of relief of suffering during the end-of-life period. When parents disagreed, children appeared to suffer more, particularly from cancer-directed therapy and fatigue. We hope that we have gained additional understanding about the importance of talking with both mothers and fathers to heighten awareness of their priorities and facilitate effective decision-making at the end of life. Additionally, I was able to work with the Pediatric Advanced Care Team (PACT) at Children’s Hospital Boston and Dana-Farber Cancer Institute. Through collaboration with the primary medical team and the child’s family, PACT focuses on the care of children with advanced illness. The team strives to support care of the underlying illness, promote comfort through prevention and management of symptoms, promote optimal quality of life, and help to create meaningful childhood experiences.
Edwards K, Neville BA, Cook, EF, Aldridge SH, Dussel V, Wolfe J. Understanding of Prognosis and Goals of Care Among Couples Whose Child Died of Cancer. In Press. (To be published in March.)
David Hwang, 2003 Fellow
David's year as an inaugural Ghiso Fellow took on several different dimensions. During a month of his third year at Harvard Medical School, David interned with the Massachusetts Compassionate Care Coalition (MCCC), a tax-exempt charitable organization that exists to enhance care for people with life-threatening illnesses and their loved ones in the Commonwealth. Through the MCCC, he helped organize educational programs geared towards religious leaders who counsel their congregation members through end-of-life situations. He also rotated through the Pain and Palliative Care service at the Dana-Farber Cancer Institute, contributing as an author on a paper studying the attitudes of medical school deans towards incorporating end-of-life care in their curricula. David also published an essay in the Boston Globe about his experiences as a medical student working with cancer patients and prepared formal diadactic presentations on the ethical debate surrounding terminal sedation and the management of delirium at the end-of-life.
David’s Final Report
Richard Lin, 2003 Fellow
Richard’s project as an inaugural Ghiso Fellow involved conducting a survey-based screen at a local nursing facility to evaluate the need of long-term care residents to receive palliative care. The objectives of Richard’s project were to understand the preferences and goals of the patient and family in dealing with a potentially terminal illness, to observe the quality of communication between the patient, family and health care team and to identify key barriers to a cohesive transition from curative treatment to palliative care. Through his study, Richard concluded that deficiencies exist in the education, support and delivery of palliative care, particularly in the areas of advance care planning, psychosocial support and education on living with chronic illness and end-of-life care.
Richard’s Final Report