Approved by the NCIL membership July, 2007
WHEREAS, cases have arisen recently in which a health care provider has sought to withhold life sustaining medical treatment despite the expressed objection of the individual or their authorized representative; and
WHEREAS, most states have health care decisions laws which include “futility” provisions permitting physicians to refuse to follow an advance directive or individual decision in favor of treatment; and
WHEREAS, only about ten states with “futility” statutes require medical treatment to be continued by an unwilling physician pending transfer at the individual’s request to another and willing physician; and
WHEREAS, many hospitals have enacted “futility” policies that enable medical providers to overrule the wishes of individuals or their authorized representatives when the medical professionals devalue the quality of life of the person in question; and
WHEREAS, journal articles published by the American Medical Association over the last ten years have recommended that hospitals and other health care providers adopt “futility” policies that include procedures designed to pressure an individual or their authorized decision-maker to accept and agree with the physician’s judgment that further treatment is “futile”; and
WHEREAS, most hospital “futility” procedures involve a review and determination by an ethics committee, while ethics committees themselves have no standards for composition, no criteria for membership and no standards for conduct; and
WHEREAS, “futility” judgments are made by health care providers with a research-proven tendency to under-rate the quality of life of persons with disabilities compared to self-assessed quality of life ratings; and
WHEREAS, “futility” judgments used to justify the involuntary withholding of life-sustaining medical treatment violate the civil and constitutional rights of the individual;
BE IT THEREFORE RESOLVED: NCIL opposes the use of “futility” judgments, policies and statutes to overrule the choice in favor of medical treatment made by an individual or their authorized representative;
BE IT FURTHER RESOLVED: that centers for independent living in each state are encouraged to advocate for legislation and other public policies to establish or restore restrictions on the application of “futility” judgments, policies and statutes to authorize the involuntary withholding of medical treatment; and
BE IT FURTHER RESOLVED: that centers for independent living are encouraged to become educated about their state’s health care decisions laws and to serve as a resource to people with disabilities who seek assistance in addressing “futility” judgments.
Submitted by: Diane Coleman
