William E. Scrivener
I have been a full-time hospital chaplain and a supervisor of the Association for Clinical Pastoral Education (ACPE) since 1981. In that time I have served two hospitals in Chicago (one pediatric, one community), a community hospital in Stamford Connecticut, and, since 1990, Children’s Hospital Medical Center in Cincinnati.
One of my abiding interests throughout that time has been ethics. For a very long time that meant bioethics – an area concerned primarily with issues arising from treatment decisions being made or faced at the bedside. I have been active on the bioethics committee throughout my time at Children’s Hospital and have participated in numerous consultations.
These include questions around whether it is permissible to limit or end treatment, an older child’s right to participate in decision-making around his or her care, the permissibility of physicians refusing to provide care requested by the patient (or parents) which they believe to be futile, the rights of parents to limit pain control on their children, and many others.
Much of this will be familiar to those who follow these things with any regularity. But in the past few years we have begun looking at ethical issues that move beyond the bedside. One area of inquiry is research ethics. Cincinnati Children’s Hospital has one of the largest pediatric research centers in the country.
It used to be that ethics in research concerned itself primarily with research protocols and making sure that patients/families participating in research were fully informed of the nature of the research, its risks and benefits, and gave uncoerced consent. But today research is faced with many other issues. What are the implications of genetic therapy beyond mere treatment? Is it permissible to do clinical trials in third world nations where the standards are not as strict as they are in the U.S.? In our newly developing bio-bank (a repository wherein thousands of tissue samples, collected from biopsies and surgery, are typed and stored to give researchers a much larger sample to study), how do we insure that patients’ privacy is maintained?
The other area is organizational ethics. In a nutshell, organizational ethics is concerned with the task of bringing focused ethical attention to the management and delivery of healthcare and is likely to involve a broad scope of organizational concerns such as patient services, business and service plans, and professional integrity.
Cincinnati Children's Hospital has grown into an enormous enterprise. It employs nearly 13,000 people. It does about $1.5 billion a year of business. Its reach is not merely regional or national, but global. It is a highly entrepreneurial operation. So the challenge becomes one of creating a climate wherein potential ethical issues arising from all this activity can be recognized and addressed.
For the past six years or so I have co-led an effort here to develop an Ethics Center. This is envisioned as a program that will bring active ethical reflection to all the areas I have mentioned and do so in an academic setting which will produce scholarship and make a contribution to the larger ethics community.
My involvement in this grew out of my sense that the traditional ethics committee was ill-equipped to handle the challenges I’ve outlined and also out of my experience of watching programs develop where it was not clear whether or to what degree potential ethical issues had been named or addressed. There have been, and continue to be, many challenges in bringing all this about.