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Massachusetts General Hospital, Section Editor, Lung Cancer, The Oncologist
A tenured department chair pounds his fists while lamenting how unfair cancer is, burying his head in his hands. He begins to cry. A senior doctor says his sister committed suicide; it has forever changed his perception of death. A lymphoma patient recounts how he felt abandoned when the wrong side of his groin was irradiated and how he worked to regain trust in his doctors. A young woman reads poetry about the preciousness of life as she counts the days until she will die from breast cancer. In the process, she reminds us how important it is that we value her artistry. A rabbi sings a loud prayer in a hushed room for a Catholic man who has lost his faith in God as his cancer progresses.
Not the typical noontime conference. All of these events occurred during the Schwartz Center Rounds, a multidisciplinary forum that explores the patient-caregiver relationship. These Rounds have become cherished moments of clarity amid the hurry and disconnection of the modern medical center. They have had a major effect on how I practice oncology.
Ken Schwartz was a husband, father, health care lawyer, and a patient with metastatic lung cancer. He defined his life by a passion for those he loved and a strong sense of social justice. At Yale Law School, he founded the Allard Lowenstein Center for Human Rights. In Massachusetts State government, he fought to improve access to health care. As a health care lawyer in practice, he worried about how changes in reimbursement strategies would change the substance of the clinical encounter. It was against this backdrop in 1994 that Ken was diagnosed with advanced non-small cell lung cancer. Ken fought his lung cancer with the same heroic conviction that he fought for human rights. He died in September 1995.
Near the end of his life, Ken wrote an article for The Boston Globe Magazine in which he shared with readers his experience of our health care system—both the bad and the good. He wrote of the critical importance of the bond between patient and caregiver. He worried that our health care system was not valuing or promoting this crucial link. Ken's last act was to establish the Kenneth B. Schwartz Center to enhance and promote the relationship between patients and caregivers. In his writing and in the design of the center, Ken was explicit in his desire to define "caregiver" as nurse, doctor, therapist, technician, secretary, priest—everyone engaged in a patient's experience with illness.
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When Ken Schwartz wrote his article, did he realize how hungry caregivers were to share the human dimension of care? As medicine becomes more technical, more efficient, and clearly more economically focused, we have a tendency to view our profession more as an industry and less as a human exchange. There is a difference between medicine and manufacturing. Patients know this and so do heath care providers. But until the Schwartz Center Rounds began, I never realized how deep our need was to explore the social, ethical, and personal realms of our clinical lives.
This year is the fifth anniversary of the Schwartz Center Rounds at Massachusetts General Hospital. Rounds are now held in more than 18 hospitals around the country with plans to expand in coming years. More than 10,000 caregivers have attended Rounds. In focus groups, caregivers point to the enhanced sense of team and community that results from attending rounds. Many say they no longer feel "alone" and have a renewed appreciation of the importance of the personal connection between caregiver and patient.
The Rounds would never have happened without the vision and support of the Kenneth B. Schwartz Center. Under the leadership of Ellen Cohen and Andrew Dreyfus, the Center has become a national leader promoting compassionate health care. Specifically, the work of Marjorie Stanzler has been invaluable in establishing the rounds regionally and nationally.
Ultimately the Rounds sustain themselves because nurses, doctors, social workers, clergy, and support staff chose this profession at least in part because they have a desire to connect with patients. As Ken wrote, "I've been touched by the smallest gestures—a squeeze of the hand, a gentle touch, a reassuring word. In some ways these quiet acts of humanity have felt more healing than the high-dose radiation and chemotherapy that hold the hope of a cure."
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