The current issue of the New England Journal of Medicine features a letter from Robert L. Fine, M.D. in response to a harsh critique of the Texas Advance Directives Act by Robert T. Truog, M.D. Truog’s Tackling Medical Futility in Texas is freely available (although it might require free registration). Here is an excerpt from Truog’s critique:
On the other hand, the Texas law’s effectiveness as a mechanism for reaching closure in difficult cases is also what makes it most problematic. It relies on a due-process approach that is more illusory than real and that risks becoming a rubber-stamp mechanism for systematically overriding families’ requests that seem unreasonable to the clinicians involved. During a 2-year period at Baylor Health Care System, for example, the ethics committee agreed with the clinical team’s futility assessment in 43 of 47 cases.
This week, Fine, a major proponent of the “futility” statute in Texas, published his response:
These disputes occur not between physicians and patients but between physicians and families. Some families are trapped in normal psychological responses to bad news, and others are divided. Some have dubious motives, and some engage in magical thinking. Ultimately, physicians must choose between the easy path of acceding to the family’s medically inappropriate request and the hard path of undertaking further committee review and possible unilateral action. We should respect the family’s preference when possible, but we should never use a patient as a means to the family’s end if the patient does not benefit.
This problem will not go away, but after 8 years of practice, the Texas process remains the best approach when family requests conflict with professional obligations at the end of life.
As much as we appreciate Truog’s criticisms of the Texas Advance Directives Act, we thought it would be more interesting and useful to get the reaction of Bob Kafka, who has been leading efforts of disability advocates and activists in Texas to get the law in that state changed. Here’s what he said:
Dr Fine illustrates the arrogant “god like” attitude that unfortunately many in the medical community have about anyone or any consumer involved process that questions their decision to withdraw treatment that results in the death of the individual.
Though each individual case is different and presents many complicated medical issues the underlying reality is that the Texas law allows doctors to overide the stated wishes of the individual and/or the family. The ethics committee have no outside public member and is composed of the doctors peers who work at the hospital. All advocates were asking was to have adequate protections in the law. Dr Fine led the political juggernaut that killed legislation last Texas legislative session. The fact is when a person’s life is at stake there should be a presumption for survival. In Texas however you get more protections and appeals if you are on death row than you do under the Texas Futility Law.
Bob Kafka
NOT DEAD YET of Texas
Don’t Mourn – Organize!
Bob Kafka’s response to Dr. Fine would have been very good – if he had not included the last sentence implying that people on death row get plenty of protections and appeals. What made that sentence especially bad is that Bob Kafka is from Texas. Ruben Cantu, Cameron Todd Willingham and Carlos De Luna are three men executed by Texas and for whom there are strong innocence cases.
The truth is that disability rights activists are usually progressive on many issues. On the death penalty, Laura Hershey wrote a paper in 2002 calling for the abolition of the death penalty in Colorado. Stephen Drake has frequently mentioned that very serious problems were uncovered with the death penalty in Illinois. And I am an active death penalty opponent from Ohio. As an aside, I am also vocally pro gay-rights.
You might be interested in this. I recently went to a talk hosted by the ACLU of Ohio. The speaker was an innocent man who had spent time on Ohio’s death row. While on death row he was subjected to beatings.
When I first arrived to hear the talk, I had to sign in. The sign in form asked a few simple questions. One was, “Are you an ACLU member?” I checked “no.” And off to the side I wrote, “I oppose futile care policies.” I am hardly an ACLU member. The ACLU, as an organization, seems to think that in order to end the practice of waterboarding, for example, you have to promote legalized medical killing of the severely disabled.
And you have to ignore some very inconvenient facts. Fewer than 30 percent of Jack Kevorkian’s victims were terminally ill according the New England journal of Medicine in 2004. Futile care are being adopted in hospitals with far too little protest despite all of the talk about patient autonomy. And doctors often all too often underestimates the quality of life of the severely disabled as evidenced, for example, by the fact that spinal cord injured rehabilitation patients were similar to the general population on self-ratings of depression, yet hospital staff consistently overestimated the patients’ level of depression according to a 1990 article by LA Cushman & MP Dijkers in the Archives of Physical Medicine and Rehabilitation.
It is not my intention to start a death penalty debate here. Because of that I will not respond to any posts that try to get that debate going in this comment section. I am merely pointing out how absurd it is to say that all of the opponents of legalized medical killing of the severely disabled are die-hard conservatives. And if we are talking about the disability rights movement, quite the opposite is often true.
John,
Thanks for reading and commenting.
To be fair, I am told the Texas ACLU *did* testify against the futile care law, but when I last checked they hadn’t put it up on their web page. I don’t know what to make of that.
I can’t speak for Bob, but I know he was writing on the quick when he sent me his reaction to Fine’s article. I’ll see if I can get a response from him, but it might be a few days because I’ll be heading out of town for a few days on Sunday – and taking care of a family situation most of tomorrow.
By coincidence, I recently sent someone info on Kevorkian to share with their local ACLU. In addition to the issues you mention, Kevorkian spent about 30 years advocating for the ability to get access to death row prisoners. He wanted to allow them to volunteer to be put to death through general anesthesia instead of the methods prevalent at the time (gas chamber and electrocution). The catch was that they would have to agree to be experimental subjects and/or organ donors while they were put under. It’s all spelled out in excruciating detail in his book “Prescription: Medicide.”
Final note in agreement with you – here in Illinois, it wasn’t “safeguards” or “process” that revealed the number of innocent people on death row. It was university professors and investigative journalists. The “system” had already finished with these folks. –Stephen
Reply from Bob Kafka via email:
The allusion I make about “more protections” on death row in Texas than in a Texas hospital is not to suggest that people on death row in Texas get anywhere near adequate protections. Living in Texas for forty years makes me well aware of how few protections people on death row have compared to other states. The fact is though, as appalling as these protections are for someone on death row, in Texas you get even less protections when your care is declared “futile” by a doctor in a Texas hospital. The reality is, unfortunately, that in both instances the lack of adequate protections results in the same ending – death.
Bob Kafka
NDY of Texas
i an a law student and have been researching the texas advance directive act for two months. i believe the statute is unconsitutional and violates a patient’s due process rights under the fourteenth amendment. can you direct me to any good legal sources on the topic?
robin,
I’ll try to reply back to this posting in a day or two after I get a chance to check with some folks on that.
If you don’t see a reply, email me:
sndrake at aol.com (written this way to avoid getting picked up by spammers) –Stephen