Public Comments on Futility by Diane Coleman on Behalf of Not Dead Yet Before the National Council on Disability

April 22, 2013

I’m commenting today to urge NCD to take a leadership position in addressing the problem of so-called futile care laws and policies which allow doctors to deny life-sustaining treatment to people with disabilities who want and need it.  The common thread running through stories we hear is that our lives with disability are seen as less worth living, so much less that health care providers too often think that death is the correct course.  They press this viewpoint on us, our families and sometimes even overrule us when we disagree.

Futility policies are not a new thing, but there are indications that doctors have become increasingly comfortable using them to withdraw life-sustaining treatment to end our lives.  They provide doctors a legal safe harbor to act based on whatever medical predictions and quality of life judgments that they may feel are consistent with community standards.

Texas has the most infamous futility law, which requires an ethics committee consultation and then, after only 10 days, allows doctors and hospitals to withdraw treatment.  Repeated efforts to amend the Texas law have failed.  This year’s amendment proposal is so weak that disability advocates have had to oppose it.  Bob Kafka, a national ADAPT leader who is also the head of Not Dead Yet of Texas, testified against SB 303:

“Our opposition … is based on our experiences with the medical community, who with all good intentions, make recommendations/decisions that if implemented would have resulted in the death of people who now are living members of our organizations. . . . Right now most of the appeal process is focused on ethics committees in hospitals that have them.  Currently there are no standards for ethics committees in regard to size, membership, procedures or even having one.  We believe that there is an inherent conflict of interest to have a committee convened at the hospital that the doctors have privileges.

“ADAPT/NDY recommends that a conflict free process outside of the hospital setting be established that has substantial membership of the disability community as members.”

Last year the National Disability Rights Network issued a report condemning decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of our basic constitutional rights.  The report states that reliance on ethics committees and consultations is insufficient protection.

I’ve communicated with protection and advocacy (P&A) attorneys in several states who had to go to court to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital.  Because of P&A intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana and Pennsylvania.  That’s just from my limited knowledge.

What I think the NDRN report tells us is that this futility problem is huge and we’ve just seen the tip of the iceberg.  Some groundwork has been laid, but serous work remains to be done and I hope that NCD will help lead that effort.