Our recent book, Palliative Care: Transforming the Care of Serious Illness (Jossey-Bass, San Francisco 2010), has been a long time coming. I got the invitation from my co-editors Stephen Isaacs and Bob Hughes of the Robert Wood Johnson Foundation over three years ago. The book was to be another in an annual series of books on health reform in areas of significant investment by the Foundation. Prior volumes addressed the Campaign for Tobacco Free Kids and School-Based Clinics, among others. I was asked to both write an introductory essay placing the field in context, and to help select a series of previously published articles for reprinting in the volume. The audience for the book was a matter of some discussion- we settled on the educated public and, we hoped, health care policy makers. The reprints were to serve as the signal and seminal pieces that exemplified the evolution of the field from its inception to its current status.
Sounded simple enough.
Many, many, hours and three years later, we had a draft ready to go press. The articles were chosen with a great deal of input from colleagues in the U.S. and around the world and lots of great pieces of writing had to be left out for lack of space. My essay started with the roadside hospices for the Crusaders of medieval times and ended before the passage of the 2010 Accountable Care Act and I learned way more than I anticipated about the threads that contributed to our field now- the 14th century origins in church-sponsored hospitals for the poor and hopelessly ill; the evolution of the place of death from a familiar experience to a mistake in the “medical model” of the modern world; the new science of pain and pain management in the 1970’s; the revolutionary and determined roles of three middle aged women (British nurse, social worker and physician Cicely Saunders, Dean of Yale University School of Nursing, and University of Chicago physician Elisabeth Kubler Ross) in a male dominated medical business culture; and the power of a federal payment mechanism (the Medicare Hospice Benefit) as a mediator of social change. The development of the field of palliative care as an approach to the human experience of illness and disability stands on the shoulders of at least a thousand years of social evolution. Humbling. It helps to understand what came before in order to think about what should happen next. Some people want to use the book in colleges and universities and Schools of Public Health. Hope for the future.