The Neil Samuel Ghiso Foundation

Despite the emerging role of PD-1 pathway inhibitors for patients with advanced lung cancer, there is a paucity of data on the activity of these agents among patients with brain metastases. We investigated the outcomes of PD-1 pathway inhibitors and stereotactic radiosurgery (SRS) for the treatment of patients with lung cancer brain metastases.

Emily's Final Report

Andrew Kim, 2017 Fellow

We worked with the Executive Office of Elder Affairs, Massachusetts e-Health Institute, and the Coalition on Serious Illness Care on a national and state-wide landscape analysis of digitalizing advance care planning documents. This included over 20 semi-structured interviews, a request for information with 9 responses, a focus group, and a literature review, culminating in policy recommendations to the state and a presentation at a public forum. Ultimately, we hope that these findings may help the state create a more reliable infrastructure for access to advance directives when patients need them most. And ultimately, we hope that these improvements may ensure that all individuals' wishes may be honored at crucial moments in their life.

Andrew's Final Report

Jillian Moore, 2016 Fellow

Development discourse has focused on gendered dimensions of poverty, demonstrating how parastatal poverty alleviation programs target women as aid recipients while devaluing their productive and reproductive work. However, seldom analyzed is how privatization of social services and proliferation of non-governmental organizations (NGOs) have impacted women. We explore this in a Guatemalan community.

Jillian's Final Report

Fallon Chipidza, 2016 Fellow

Patients with the Neurofibromatosis Type 2 (NF2) develop three major types of tumors: vestibular schwannomas (VS), meningiomas and ependymomas. The natural history of VSs has been well characterized, but that of meningiomas (which occur in multiple frequencies) is not well understood. Our study aims to understand the natural history of intracranial meningiomas by analyzing their radiologic features on CT and MR images as well as their pathologic features from those meningiomas that were resected.

Fallon's Final Report

Daniel Lage, 2016 Fellow

Creating a Network of High-Quality Skilled Nursing Facilities: Preliminary Data on the Postacute Care Quality Improvement Experiences of an Accountable Care Organization

Daniel's Final Report

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 planning.

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 about caregiving.

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, France.

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
Marie-Adele's Survey
Marie-Adele's Summary

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.

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.

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.