As folks who read this blog already know, the Institute of Medicine’s Transforming End-of-Life Care Committee sets aside a portion of its meeting agenda to receive public comments. At the Committee’s second public meeting, held at Stanford on May 29, DREDF’s Marilyn Golden attended to provide public comments.
Not Dead Yet previously submitted written input concerning the composition of the Committee, particularly the lack of disability representation. We didn’t receive a response to that submission, nor did the composition of the Committee change.
Since I was not able to attend in person, the Thursday before the second meeting, I wrote a letter requesting the opportunity to comment by telephone or Skype. That was admittedly short notice for such a request, but I hoped I’d get lucky and prepared comments anyway, scrunching them into the three minutes provided for each speaker.
My hoped for accommodation didn’t work out (yet), but I adapted my planned remarks slightly for written format, added a few references, and submitted them this week. There’s plenty more to say, but here’s a start.
Public Comment for the Institute of Medicine’s Transforming End-of-Life CareCommittee – By Diane Coleman, President/CEO, Not Dead Yet
Submitted June 4, 2013
My name is Diane Coleman and I’m the President and CEO of Not Dead Yet[i], a national disability rights organization focused on public policy related to many of the issues that this Committee will address.
Last Friday in upstate New York, the Democrat and Chronicle newspaper reported, “An appellate court has ruled that a feeding tube must be inserted for a severely disabled man … whose parents and attending physician did not want the use of the life-sustaining treatment.”[ii] The New York Office for People with Developmental Disabilities sued on behalf of a 55-year-old man with cerebral palsy who faced increasing problems with aspiration pneumonia. One of his nurses said that he is “alert, awake and communicative, and that he enjoys social interaction and activities.” Because the state challenged the hospital and parents in court, and then appealed a negative lower court ruling, the man will live.
On May 24, 2012, National Disability Rights Network, or “NDRN”, the national association of protection and advocacy agencies federally charged to protect the civil rights of people with disabilities, issued a report entitled “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.”[iii] After recounting several case stories, the report condemned decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional rights of individuals with disabilities.
The report stated that reliance on ethics committees and consultations are insufficient protections of a patient’s legal rights and that hospitals and other providers must “establish and implement due process protections….”
I’ve communicated with protection and advocacy attorneys in several states who had to go to court to try to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital. Against the odds and because of their intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana, Pennsylvania and New York. That’s just from my limited knowledge.
The recommendations contained in the NDRN Report constitute nothing less than a call to conscience for health care providers who are withholding life-sustaining treatment from people with disabilities who are not otherwise dying. Sometimes this is done at the request of family members or other surrogates, who are often persuaded or even pressured by the health care providers themselves. Sometimes treatment is withheld based on the unilateral decision of the health care provider under what are often termed “futile care policies.”
A central problem is physicians’ “quality of life” judgments. Research shows that physicians devalue the quality of life of people with disabilities compared to our own assessments.[iv] Doctors are not immune from the bias against disability that prevails in society overall.
From our perspective, there is an imbalance in end-of-life policy-making because it has ignored the problem of under-treatment of people who, but for the under-treatment, would not die. In other words, sometimes “end-of-life” really means ending lives. The first step in addressing this problem is admitting that it exists, and I would urge this Committee not to shy away from a serious examination of this problem despite the discomfort and other challenges that would accompany such an effort.
What the NDRN report emphasizes is that people with disabilities are entitled to constitutional protections when third parties are seeking to withhold life-sustaining treatment. Anything less is unacceptable.
Like I said, it’s just a start. To be continued. – Diane Coleman
[ii] “Court orders feeding tube for disabled Yates County man”, Democrat and Chronicle, May 24. 2013, http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=2013305240049
[iii] Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights http://www.ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_People_with_Disabilities.pdf