IN RESPONSE:
Sulmasy and colleagues express concerns about recently published papers on terminal sedation from two projects. The process used to develop these papers has been provided in past descriptions of the projects, but I will provide a brief review here.
"Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids" was developed by the ACPASIM End-of-Life Care Consensus Panel. It is one of a series of 14 by the College panel of national physician experts on important topics related to care of the dying. Those papers are approved by the College's Ethics and Human Rights Committee but are not presented for approval by the Board of Regents and are not official College policy. Not all College products receive Board approval as College policynotable examples are the Medical Knowledge Self-Assessment Program and the ethics case study series. The end-of-life care papers include clear language about their status. It was merely a mistake, corrected when identified, that the terminal suffering paper was accidentally published under the heading "Position Paper."
Further, all papers in the end-of-life care series receive rigorous internal and external review. Drafts are developed after intensive discussion within the ACPASIM End-of-Life Care Consensus Panel and go through numerous rounds of review over the course of many committee meetings. They are then reviewed by outside experts and also by internists who do not consider themselves palliative care experts. They undergo review (but not approval) by the College's Education Committee, Board of Governors, and Board of Regents and are both reviewed and approved by the College's Ethics and Human Rights Committee. On journal submission, the papers are then subjected to another round of external peer review.
The other paper to which Dr. Sulmasy and colleagues refer is "Palliative Treatments of Last Resort: Choosing the Least Harmful Alternative," by the University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel. My academic affiliation is with the University of Pennsylvania Center for Bioethics, and I worked on that project in that capacity. That affiliation was clearly noted.
This was one of a series of papers by that group published along with introductory material that clearly described the University of Pennsylvania group and its purpose. The series was the culmination of 3 years of work by a national panel of experts on the subject of assisted suicide. The panel membership was multidisciplinarywith representatives from medicine, nursing, psychology, hospice, patient advocacy, law, philosophy, the clergy, and bioethics. It was deliberately composed of individuals with diverse viewpoints on assisted suicide, proponents and critics. Our purpose was to come together to see where we could develop consensus on difficult issues related to assisted suicide. Dissent, if any, was noted on each paper.
A few individuals served on both groups. As is often the case, leading experts work with various organizations, institutions, and projects.
Concerns about process are understandable on matters of considerable debate. Regarding the papers that appeared in these pages, the process was sound and identified. We welcome continuation of the substantive debate around terminal sedation with the voluntary refusal of food and fluids, and other issues. It was, of course, not that long ago that the right of patients to refuse artificial nutrition and hydration was established, when fluids and nutrition were determined to be like any other medical treatment that may be withheld or withdrawn with patient refusalaccording to the consensus that had developed.