Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 74 The Journal of Clinical Ethics Spring 2011 Thaddeus Mason Pope, “Legal Briefing: Healthcare Ethics Committees,” The Journal of Clinical Ethics 22, no. 1 (Spring 2011): 74-93. Law Legal Briefing: Healthcare Ethics Committees Thaddeus Mason Pope 5. Decision-making and gate-keeping roles Readers who learn of cases, statutes, or regulations 6. Confidentiality that they would like to have reported in this column are 7. Immunity encouraged to e-mail Thaddeus Pope at tmpope@ 8. Litigation and court cases widener.edu. EXISTENCE AND AVAILABILITY ABSTRACT The history of ethics committees is familiar This issue’s “Legal Briefing” column covers recent legal to the readers of this journal. The origins of eth- developments involving institutional healthcare ethics com- ics committees date to the therapeutic abortion mittees.1 This topic has been the subject of recent articles in committees, dialysis allocation committees, and JCE.2 Healthcare ethics committees have also recently been early institutional review boards (IRBs) of the the subject of significant public policy attention. Disturbingly, 1960s.4 The use of ethics committees received Bobby Schindler and others have described ethics commit- a major boost in 1976. That year, the Quinlan tees as “death panels.”3 But most of the recent attention has court suggested that ethics committees, rather been positive. Over the past several months, legislatures and than courts, should review decisions to with- courts have expanded the use of ethics committees and clari- hold or withdraw treatment as “a general prac- fied their roles concerning both end-of-life treatment and other tice and procedure.”5 issues. These developments are usefully grouped into the The original concept was, in application, following eight categories: more of a “prognosis committee” comprised of 1. Existence and availability physicians.6 But that quickly evolved into a 2. Membership and composition multidisciplinary committee.7 Ethics commit- 3. Operating procedures tees received a further boost in 1983, when the 4. Advisory roles President’s Commission for the Study of Ethi- cal Problems in Medicine and Biomedical and Thaddeus Mason Pope, JD, PhD, is an Associate Profes- Behavioral Research endorsed the use of com- sor with the Health Law Institute at Widener University School mittees in its widely influential report, Decid- of Law, Wilmington, Deleware, [email protected]. ©2011 ing to Forgo Life-Sustaining Treatment.8 Indeed, by The Journal of Clinical Ethics. All rights reserved. the President’s Commission even published a Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 22, Number 1 The Journal of Clinical Ethics 75 model statute on the role and function of ethics ing standards to require that each hospital “have committees as an appendix to its report. a multidisciplinary bioethics committee, and/ But the President’s Commission’s invitation or prognosis committee(s), or equivalent(s).19 to mandate the establishment and use of ethics This requirement arguably extends to long-term committees was not widely accepted across the care facilities, because the state’s Advance Di- United States.9 The following year, in 1984, the rective Act requires each healthcare institution Department of Health and Human Services pro- to “establish procedures and practices for dis- mulgated regulations that only “encouraged” pute resolution.”20 providers to establish “Infant Care Review Com- Indeed, New Jersey later amended the li- mittees.”10 Ethics committee statutes were en- censing standards for both long-term care facili- acted by only a handful of states, including ties21 and home health agencies,22 to clarify that Maryland, New Jersey, Colorado, New York, the required procedures for considering dis- Texas, and Massachusetts.11 But perhaps more putes may include “consultation with an insti- notable than these laws was the ethics commit- tutional ethics committee, a regional ethics com- tee mandate in the private, although influen- mittee or another type of affiliated ethics com- tial, accreditation standards of the Joint Com- mittee, or with any individual or individuals mission. who are qualified by their background and/or Apart from this handful of statutes, legal experience to make clinical and ethical judg- support and guidance for ethics committees is ments.” New Jersey also extended the ethics sorely lacking in the United States.12 And this committee mandate to its psychiatric and men- situation is not unique to the United States. A tal health facilities.23 And the state Bureau of dearth of legal support and guidance also ex- Guardianship Services is required to consult ists in other countries. Ethics committees are with an ethics committee, especially in “criti- now legally mandated in only a few nations. cal areas of decision-making” such as a medi- Among these are Israel, Taiwan, the Spanish cal procedure that entails “major, irrevocable state of Andalucia, Norway, Alberta, and consequences” like amputation or organ trans- Singapore.13 And research ethics committees in plantation.24 Belgium14 and Greece15 are charged with serv- Like the Maryland statute that allows joint ing clinical ethical functions in addition to their and shared committees, New Jersey regulations core IRB functions. recognize “Regional Long Term Care Ethics Committees.” These committees, which are ap- Maryland proved by the Office of the Ombudsperson for In 1986, Maryland became the first state to the Institutionalized Elderly (OOIE), “provide enact legislation requiring the creation of “pa- to the long-term care community expertise of tient care advisory committees.”16 The statute multi-disciplinary members who offer case con- now provides that “each hospital and each re- sultation and support to residents and health lated institution shall establish . a patient care care professionals who are facing ethical dilem- advisory committee.”17 Recognizing that this mas.”25 While decisions to withhold or with- requirement might be burdensome for smaller draw life-sustaining treatment from an elderly, facilities, the statute permits a committee to incapacitated resident of a long-term care facil- function: “(1) solely at that related institution, ity must normally be reported to the OOIE, the (2) jointly with a hospital advisory committee, decisions need not be reported when they have or (3) jointly with an advisory committee rep- been reviewed by an approved ethics commit- resenting no more than 30 other related institu- tee.26 This seems to be a reasonable delegation tions.”18 of the OOIE’s responsibility.27 New Jersey Colorado New Jersey quickly followed Maryland. In In 2010, Colorado enacted significant 1990, New Jersey amended its hospital licens- amendments to its Medical Treatment Decisions Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 76 The Journal of Clinical Ethics Spring 2011 Act. But both the current law and the original Massachusetts 1992 law provided for ethics committees in a Like Texas, Massachusetts requires ethics section on proxy decision makers. The statute committees in only particular practice settings. provides: “The assistance of a health care Specifically, Massachusetts requires that neo- facility’s medical ethics committee shall be pro- natal intensive care units (NICUs) provide “eth- vided upon the request of a proxy decision- ics committees for review of complex patient maker or [potential proxy decision maker] care issues with a focus on parental involve- whenever the proxy decision-maker is consid- ment in decision making.”32 ering or has made a decision to withhold or withdraw medical treatment.”28 Like Maryland, “Baby Doe” Regulations the Colorado law recognizes that the require- In 1982, disabled newborn Baby Doe died ment might be burdensome for some facilities. in Bloomington, Indiana, after his parents de- Accordingly, the statute further provides: “If clined treatment. In response to this case, the there is no medical ethics committee for a health Reagan Administration enacted federal laws to care facility, such facility may provide an out- protect disabled infants.33 Among these, the side referral for such assistance or consultation.” U.S. Department of Health and Human Services (DHHS) issued regulations encouraging the es- New York tablishment of “Infant Care Review Commit- In 2010, New York finally enacted its long- tees.”34 The committees would assist in devel- awaited and much-anticipated Family Health- oping standards, policies, and procedures for care Decisions Act (FHCDA).29 While the cen- providing treatment to disabled infants, and also terpiece of the statute was its recognition of assist in making decisions concerning medically default surrogates, the FHCDA also requires beneficial treatment in specific cases. While the each hospital and nursing home to “establish DHHS recognized the value of such committees, at least one ethics review committee.” As in it only encouraged, but did not require, them. Maryland and Colorado, this requirement can be alternatively satisfied by “participat[ing]