Some of you may recall the controversy that accompanied the controversy over Terri Schiavo, regarding the case of Sun Hudson, an infant that was removed from life support by a Houston hospital in accordance with the "Texas Futile Care Law", an amendment buried in the Texas Advance Directives Act which permits hospitals to remove patients from life support if it is not judged to be "appropriate" by hospital phsycians and a hospital ethics committee. President Bush was pilloried as a hypocrite for signing into law as Governor a bill that permits patients to be removed from life support against their will, while making numerous public statements regarding the necessity of preserving Terri Schiavo's life. Unfortunately though the controversy has died, the Texas Futile Care Law has not. I wrote my co-bloggers not long ago about how this is possibly one of the worst bills to ever be written in to law in Texas, and upon further reflection I can't say that my initial assessment has changed. Why is it so bad? Let me explain.
You may or may not know that in Texas, like in many other states, people are entitled to use advance directives (what are commonly known as "living wills"-a terribly inaccurate moniker, but one that continues to stick) to determine in advance of their own incapacity in what manner doctors are permitted to treat them, and to what extent doctors can act to prolong or preserve a patient's life. The very idea of the advance directive is grounded in the ideal that it is a fundamental right of people to exercise autonomy over their health care decisions (or in the case of a medical power of attorney, give that autonomy to someone they trust.) It was quite a surprise to me to learn that in Texas at least, that right is stripped away in the middle of the very act that was promulgated to promote it.
Essentially, the Texas Futile Care Law permits a physician treating you to refuse to honor your advance directive (or the directives of your agent under a power of attorney), and it permits the physician to decide that you should instead be taken off of life support if he/she feels that it is "inappropriate." What does "inappropriate" mean? Well...who knows? It's not defined in the Act. Instead, it's left to the physician, with the permission of a hospital ethics committee, to decide whether or not your treatment is "appropriate." The standard is completely undefined.
Worse yet, if the committee decides that your treatment is "inappropriate" your family members or medical guardian has only ten days to attempt to find a hospital that will take you and will be willing to provide such treatment, and the merits of their decision is unappelable to any judicial entity (a court is permitted only to grant you more time to find another provider...if they think that more time will actually permit you to find one.)
The public controversy over the infant Sun Hudson had much to do with the fact that his mother was largely indigent and the State of Texas was paying for Sun's care. But if you look at the language of the Act, you see nothing regarding the ability or the inability of the patient to actually pay for their care. In other words, the law-as it's written today-would permit a hospital to disconnect you from what they consider to be inappropriate life-sustaining treatment even if you walk in with an iron-clad advance directive and have cash in hand to pay for years of treatment.
Of course, it's unlikely that's going to happen. What is much more likely to happen is that hospitals-which have financial incentives not to provide expensive life-sustaining care to people who can't pay for it-are going to be motivated to remove indigent patients from life support. How is this even possible? Because the final decision is left to the hospital's ethics committee, not an impartial committee, not a Texas State Bioethics committee, and not a court. The law doesn't even say who should sit on this ethics committee; that's left entirely up to the hospital. Someone whose interests lie more with the hospital's financial predicament and less with the patient's health circumstances could find themselves motivated indeed to pull the plug and bring an end to a costly expense.
So to recap, the decision on whether you can or cannot have life-sustaining treatment is not left up to you, but up to a hospital ethics committee, which will decide what is or is not "appropriate." Your family member's only hope is to find a hospital that will take you in, they have ten days to do so, and they can only appeal to the courts for more time to do so...and only then if it's likely that they'll actually find someone with that extra time.
How do bills like this get passed in Texas? Well, Texas Republicans (and even some Democrats) love to keep things out of the courts. After all, this is a state in which medical "tort reform" has found a home. Unfortunately they've gone too far in this case. The power that Texas hospitals have been given by this law has been used only sparingly, but bad laws should never be permitted to exist just because they are hardly used or promote only unintended consequences. Legislation to reform the law died in the Texas House this past session, but the issue isn't dead and groups will be pressing for significant reform or a repeal of the changes in the next session.
A very real debate is underway about the extent to which we should give people life-sustaining treatment, or any treatment at all, when the outcome is only likely to be further prolonged pain and suffering. I for one don't think we should, and I don't want it for myself. But I think that decision should be up to the patient or the patient's loved ones, not doctors who may have paternalistic notions about what is or isn't "appropriate" for their patients or hospitals with conflicts of interest between patient care and saving a buck. This bill, not Texas patients, deserves to die.