Living—and Dying—by Example

Proximity to death is to be expected in certain professions dedicated to protecting life such as law enforcement, firefighting, and medicine, among others. Being young and my immediate family being in good health, I naively anticipated that I would become acquainted with death through formal contact with the patients I encountered in the hospital. It turns out that while I was busy looking for death in the distance, it quietly and nonchalantly came to curl up next to me like a cat.

From the time that my friend and classmate Neil Ghiso was first diagnosed with a brain tumor in 1997 until his recent death in February of 2002, chronic illness and death have been part of everyday life for all who knew him. As a result, witnessing Neil's journey over the past five years has taught me about what it can mean for patients and their families and friends to live in intimate contact with a terminal illness. I have been moved by Neil's courage and the compassion of his family and friends in the face of his illness. I was also moved by the dignity and the sense of hope they created together, especially as it became clear that surgery and medication had no more to offer him. I think of that experience as a gift, one that his family and friends hope will live on through the formation of a foundation in Neil's name. Care for the Chronically and Terminally Ill

The Neil Samuel Ghiso Foundation (NSGF) is "dedicated to fostering compassionate care for chronically and terminally ill patients and their families through medical education and training." Its pilot project aims to offer medical students between their first and second years the opportunity to investigate ways to enhance the care of this patient population. Initially, students will round with Dr. Robert Buxbaum, HMS assistant professor of medicine at the Mariner Health at Longwood hospice facility. Neil was one of his patients. Students will focus on issues such as improving the dialogue between patients and providers and will be free to define hypotheses of their own regarding the role of the physician in circumstances that are emotionally difficult for patients and families.

The formation of the NSGF is not in response to a failure in Neil's care. Instead it is a measure of how successful Neil and his family were at making the many difficult decisions they faced after his diagnosis. First Neil had to decide how to fight back, which he did with multiple surgeries, chemotherapy, radiation, and drugs to control his worsening seizures. His family fought back by repeatedly flying out from Chicago at a moment's notice, and his friends by dropping what they were doing to accompany him to his meetings with various doctors.

The other decisions Neil had to make were harder still: how to prepare for a life of chronic illness and possibly early death. After his diagnosis, Neil would have been justified in quitting medical school and moving back home with family. Instead he chose to stay the course he had initially set for himself. In spite of his illness, the seizures, the memory loss, he graduated from medical school with honors in 2001 and even gave one of the student speeches at commencement the year before. As Neil's symptoms made it progressively harder for him to go on in medicine, he refused to withdraw from the world and worked in a bookstore. All the while he was affectionate and tender toward those who loved him. Even as his symptoms were beginning to overtake him, he placed the comfort of others before his own. He never flinched when asked about his symptoms. And at the end, he made it easy for us to relate to him because we did not need to waste a single minute pretending that this wasn't happening. I believe this freed all those involved to enjoy his company and focus on his life. Instead of choosing how he was going to die, Neil chose how he was going to live.

"Healing Without a Cure" The chronically and terminally ill are at risk for having their choices severely limited by more than their disease. Family pressure to deal with illness in a manner not consistent with the patient's priorities can alienate patients from their own experience. To paraphrase a friend of Neil's who spoke after his funeral, Neil's family's acceptance of his wish to continue to live in Boston and finish medical school was a compassionate and healing gesture because it made it possible for hope to persist. It could be hope for some personal reconciliation, hope for seeing a project come to fruition, or just the hope of feeling intimately connected to loved ones.

Doctors who care only about cures have no way of communicating alternative forms of hope to patients and close off alternative paths to healing when they are needed the most. The mission of the NSGF is to promote the healing that is possible even when there are no cures. The genesis of the foundation is a testament to the hope and creativity that are possible even in the face of death.

- Alex Carter, MD-PhD