[This is an excerpt from the Center for Disability Rights’ January 29, 2014 Analysis of the 2014-2015 NYS Executive Budget: Proposals that Impact People with Disabilities, discussing New York’s Lauren’s Law.]
CDR is concerned about unintended consequences of Lauren’s Law and recommends that the Cuomo administration allocate $250,000 to fund Disability Rights New York to study the issues, assess the impact of Lauren’s Law, determine if adequate protections are in place, and recommend any needed policy changes to protect the rights and lives of people with disabilities and to ensure the informed consent of potential organ donors who fill out the driver’s license application form.
The Governor proposes amending section 6 of Chapter 465 of the Laws of 2012, to make permanent certain aspects of Lauren’s Law which rule requires “anyone over the age of 18 obtaining a new driver’s license to check off a box declaring whether or not they would be an organ donor.”
Although few people think of organ donation as controversial, there are some serious concerns about this program within the disability community. Those who are newly-disabled and may be potential candidates for organ donation are vulnerable to being exploited through aggressive procurement tactics. A prominent and respected brain injury specialist in New York resigned from the board of an organ procurement organization because families complained that staff were overly aggressive in urging them to “pull the plug” and donate organs, yet when they refused, the patients recovered and went home.
In November of 2013, Not Dead Yet, a national disability rights organization that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination, issued a message to the Organ Procurement and Transplantation Network (OPTN) expressing concern over proposed organ procurement protocols. These proposals would have allowed organ donation to be discussed with individuals who depend on life sustaining treatment and their families before a decision to withdraw life-sustaining treatment has been made, affecting people with upper spinal cord injuries, neuromuscular disabilities and severe brain injuries.
Additionally, the procedures for determining “brain death” are in part determined by hospital policy. The differences are significant enough that a person can be legally declared dead in one hospital while another hospital would find them to be alive and in need of treatment. Health care providers are also not able to predict outcomes with total reliability, and they are sometimes far from accurate. For example, last year it was reported that a woman in a Syracuse hospital had woken up just as doctors were preparing to harvest her organs.
The driver’s license application question does not include anything about these issues and potential conflicts. In general, people don’t have enough information about organ procurement policies to make an informed decision. Expecting people to make a choice about future health care without informed consent is problematic. Faced with such a forced choice, some people will simply check “yes” because to do otherwise would make them feel selfish.
Perhaps the biggest risk is that hospitals will use a “yes” on the form to overrule one’s health care decision maker under the Family Health Care Decisions Act. But it’s also possible that a person’s trusted doctor could try to save a person’s life while the family uses the form to argue against life saving measures in order to avoid the person having a future with significant disability.
These are complex issues that need further study before making Lauren’s Law permanent. CDR recommends that the state allocate $250,000 to fund Disability Rights New York to study these issues, assess the impact of Lauren’s Law, determine if adequate protections are in place, recommend any needed policy changes to protect the rights and lives of people with disabilities, and develop additional disclosure materials and related training to help ensure the informed consent of potential organ donors who fill out the driver’s license application form.
In addition, CDR recommends that the following language be added to the driver’s license application question about being an organ donor: “My consent to organ donation is not intended to supersede the authorized decisions of my health care power of attorney or surrogate decision maker under the New York Family Health Care Decisions Act.”