Kind strangers: the families of organ donors.

Abstract

Prologue: Transplantation of human organs from one individual to another has become an almost commonplace medical event in the high-technology era in which we live. Behind this medical triumph, though, lies a fundamental problem. There are far too few organs available for transplantation. An estimated 9,000 to 20,000 people are waiting for kidneys alone. Patients generally enjoy a higher quality of life after kidney transplantations, and the cost of their medical treatments is less than dialysis if the organ is not rejected. Proposals to increase organ donation have been widely discussed in health policy circles. These discussions led to enactment of the National Organ Transplant Act (PL. 98-507) in 1984, which called for the establishment of a computerized network of organ procurement centers. In October 1986, Omnibus Budget Reconciliation legislation (PL. 99-506) set out additional guidelines: immunosuppressive drugs are now covered under Medicare and Medicaid; and, as of October 1,1987, hospitals with Medicare and Medicaid patients are required to have written guidelines for routinely requesting donation and must notify federal procurement agencies about possible donors; procurement agencies must follow certain standards to qualify for federal certification; and hospitals performing transplants must be members of a network. One source of information that has not been mined in the pursuit of a larger number of human organs is those families who have already donated organs of kin. In this first systematic survey of families of organ donors, authors Helen Batten and Jeffrey Prottas ask why the families donate, if the act of giving helps the family in overcoming the loss of a loved one, and how the donation process can be improved in the eyes of the families. Batten and Prottas are affiliated with the Bigel Institute for Health Policy, Heller School, Brandeis University. Batten is a research associate and doctoral candidate in sociology at Boston College. Prottas is senior research associate and acting director at the institute. He received his doctorate in political science from Massachusetts Institute of Technology.