Kathryn Reiser, 2013 Fellow
My NSGF fellowship has focused on improving communication and education around end of life
choices. I helped to launch a National Healthcare Decisions Day (NHDD) and advance care
planning program at the University of Massachusetts Medical School (UMMS) and Graduate
School of Nursing (GSN). These activities included hosting a major Continuing Medical
Education (CME) event, creating a two-part skills session for medical and nursing students, and
participating on the development team of a software platform to engage patients in advance care
Kathryn's Final Report
Betsy Campbell, 2011 Fellow
As a Ghiso Fellow, I participated in the 2011 Summer Program at the Yale University Interdisciplinary
Center for Bioethics. My time on campus was busy: I attended daily lectures and seminars taught by
Yale faculty; I wrote and presented a paper about positive psychology at the end of life; and I published
a poem in the Yale Journal of Humanities in Medicine. However, my main project was to develop a
piece of documentary theater about the experiences of end-of-life caregivers. I successfully crafted a
draft of the script, cast accomplished actresses for the parts, staged a reading of the script for members
and friends of the Yale University Interdisciplinary Bioethics Center, and facilitated a set of discussions
Betsy's Final Report
Jillian Rork, 2011 Fellow
My Ghiso Fellowship was spent in three different clinical settings. Two of the clinical
electives were at Harvard Medical School hospitals (Pediatric Anesthesiology and Palliative
Care). The third clinical elective was at Hopital Robert Debre, a pediatric hospital in Paris,
Jillian's Final Report
Grant Smith, 2010 Fellow
Under Dr. Kristen Schaefer's guidance, I had the opportunity to shadow physicians and other healthcare
providers on the Inpatient Palliative Care Unit (IPCU), the palliative care consult service, social work and
chaplaincy consultations, and the pediatric advanced care team (PACT). The opportunity to see pain and
palliative care medicine from all of these perspectives helped me obtain a better understanding of the
breadth of this discipline.
Grant's Final Report
Emily Morell, 2010 Fellow
My summer as a Ghiso fellow has been truly a fabulous learning experience. I was able to gain
experience in palliative care research and exposure to clinical care of chronically and terminally ill children.
The knowledge and skills I have acquired have strengthened my commitment to pursuing a medical career
in which I practice compassionate medical care of children coping with chronic illness. I am incredibly
grateful for the support of the Ghiso Foundation as well as my mentors, Dr. Betsy Blume, Medical Director
of the Heart Failure/Transplant Program, and Dr. Joanne Wolfe, Director of Pediatric Palliative Care at CHB. In this final report, I summarize the results and status of my research, as well as my experience in the clinical setting.
Emily's Final Report
Kristina Mirabeau-Beale, 2009 Fellow
My initial research project during my Ghiso fellowship year involved using a 5-minute
video decision aid, for advanced care planning for cancer patients, to see how it affected
patients’ care preferences. The video depicted three levels of end of life care, including
life-prolonging care, basic care and comfort care. The project is a randomized trial to see
how the video influences the decision making of terminal cancer patients deemed to have
6 month life expectancy. My personal responsibilities included interviewing patients, data
collection, as well as general integration into the palliative care team caring for these
patients. My previous experience interviewing cancer patients enhanced my ability
handle these responsibilities.
Kristina's Final Report
Erica Kaye, 2009 Fellow
Under the auspices of the Ghiso Fellowship, I created a project with three primary goals: 1) To gain
a greater understanding of the definition and impact of “compassionate care” as it applies to
pediatric patients, as well as an enhanced appreciation of the definition of “palliative care” from the
perspective of the PACT team at Children’s Hospital; 2) To ascertain the existing level of
knowledge among future health care providers regarding the goals of pediatric palliative care; 3) To
create a variety of educational resources, including a comprehensive pediatric palliative care
curriculum, in order to enable medical students, interns, residents, and other hospital faculty to feel
more comfortable and prepared in their roles as members of the multidisciplinary team providing
compassionate care to pediatric patients with chronic or terminal illnesses.
Erica's Final Report
Areej El-Jawahri, 2008 Fellow
With the support of my mentor, I designed a clinical research project focused on helping
patients with malignant gliomas (Grade III and IV primary brain tumors) to define their
preferences in terms of end-of life care. The study attempts to utilize video images to present a
framework for different goals of care options.
Areej's Final Report
Elizabeth Kwo, 2008 Fellow
Elizabeth's Final Report
Marie-Adele Sorel, 2008 Fellow
For the Neil Samuel Ghiso Fellowship, I had the opportunity to work across
specialties with a palliative care specialist, Dr. Robert Buxbaum, and a radiation
oncologist specializing in treating patients with CNS disease, Dr. Naren Ramakrishna.
Through two focused months of work as well as preparatory and continuing projects, I
focused on my goals of clinical work, patient narratives, and research.
Marie-Adele's Final Report
Leila Mariam Vaez-Azizi, 2008 Fellow
The DFCI Legacy Project was begun in order to provide a therapeutic gift to families
who have recently experienced the death of a loved one. This summer, I worked with the Center
for Psychosocial Oncology to design and execute the DFCI Legacy Project website. The purpose
of the DFCI Legacy Project is to encourage and guide families to commemorate their loved one
on a public platform through creation of a Memorial Page. In this space, a family can publish
biographies, photos, tributes, letters, and other media of their choosing. While the Memorial
Page is considered the final product, we believe that it is the process of creating the site – of
making choices as to how one should be commemorated – that mediates the true therapeutic
benefit of this service.
Leila's Final Report
Jennifer Erdrich, 2007 Fellow
Jennifer's Final Report
Emily Jerszyk, 2007 Fellow
My Ghiso Fellowship had two primary goals 1) to gain exposure to the clinical practice of palliative care and care for the terminally ill through shadowing and 2) to learn more about clinical research
within the context of palliative care and end-of-life care. In this summary, I will discuss
separately these two aspects of my project, my successes, my challenges, and my thought
process. I will also discuss current and future endeavors encouraged by my involvement
with the Neil Ghiso Fellowship, my experience with mentorship and finally a personal
reflection of what this time has meant to me.
Emily's Final Report
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.
Kate's Final Report
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
Payal Kohli, 2006 Fellow
Payal'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
Jennifer Siegel, 2006 Fellow
This project attempted to examine the uses of, and education about, one particular type of end-of-life communication, the family meeting, at a community hospital. As a part of a broader palliative care needs assessment at the Cambridge Hospital, we designed a program of intensive observation to better understand the demographics, content, and teaching of family meetings in the both the ICU and the general medical wards. Arrangements were made for the medical student to be notified about the occurrence of family meetings at the hospital, and a template was developed to facilitate a detailed observation of each meeting. The student joined the ICU team for morning rounds to better contextualize the family meetings and conducted informal interviews with house officers and attending physicians involved with the meetings.
Jennifer's Final Report
Melissa Wachterman, 2005 Fellow
Melissa'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