The Law Did Not Work--Thoughts on Andrea Clark and Yenlang Vo
For two weeks I have carried responsibility in the legal realm for the lives of two women whom attending physicians and ethics committees have decided should not receive life-sustaining treatment. This has been a heavy burden--although I cannot compare my ordeal to that of the families and patients.
I filed papers with the court in one case and got close to doing that in the other case. In one, a new attending physician has assumed care. In the other, the hospital is, so far, cooperating with grace and compassion to find alternatives.
I cannot express the gratitude that I feel for the bloggers,journalists, radio talk hosts who have informed the public about these cases, and the readers and listeners who have clearly expressed to the hospitals, physicians and bioethicists who support denying people autonomy in medical decisions by replacing the desires of patients and families with subjective judgments about "quality of life", that such a position is not acceptable.
Andrea Clark has fought and won against the odds since her birth. She desired to continue that fight so that she could see her 23 year old son eventually marry and give her grandchildren. Her family supported her 100%. She was a blue baby. Dr. Cooley performed open heart surgery on her in the 1950's, when that surgery was in its infancy.
Andrea has benefited from miracles in her life. Before undergoing the last surgery, she instructed her family that she wants a chance this time as well. Now, thanks to a groundswell of support,and a new physician, she will have that chance.
Yolang T. Vo was born in Vietnam. She was a young mother when Saigon fell. Her husband was an officer in the South Vietnamese Navy. After the Communists took over, they put her husband in a re-education camp. Yolang worked her fingers to the bone to earn enough money to bribe guards so that her husband could escape the camp. After his escape, the couple fled from Vietnam on a rickety boat with other "boat people" in 1979. They came to America, where Yolang continued to work hard so that she could bring her young daughter out of Vietnam to America. She achieved that in 1981. She also helped her sisters and the rest of her family escape the Communists to come to America. Yolang's family reveres her.
The hospital in her case, has, with grace and compassion, agreed to work with the family to explore alternatives. Yolang still has a chance to be with her family to whom she is so beloved.
Things have worked out for Andrea Clark, and appear to be working out for Yolang. However, I have seen a number of commentors on various blogs who have expressed the belief that these outcomes mean that the Texas Statute works.
Nothing could be further from the truth. Were it not for the huge stink raised by the public, these ladies would not be alive today. Finding a new attending physician and/or especially a new facility to accept a patient whom a hospital has deemed a "futile case" is like finding a needle in a haystack. In the case of Andrea, without all the press, the new attending physician would never have been located or even known that this was happening.
The reality is that once a hospital labels a patient as a futile case, other hospitals will rarely, if at all, take the patient. Specialty hospitals (long-term acute care hospitals) will not take them because the patient has no discharge plan (plan for going to a lower level of care) A person that a hospital has written off as futile is not going to have a discharge plan. A nursing home, more likely than not, will have insufficient resources (dialysis and respirator care for instance) to care for such patients.
The Texas Statute, at the heart of all this, came about because the hospitals begin, independently, to create protocols for withdrawing treatment during the early to mid 1990's--there is an article in a 1996 JAMA issue about that. A coalition of doctors and hospitals came up with a Bill that would give health providers immunity or "safe harbor" from lawsuits or criminal and licensure liability if the provider followed the ethics committee protocol. The bill gave only 3 days for a transfer.
George Bush vetoed that bill and forced the coaltion to sit down with Texas Right to Life to rewrite the Bill. TRTL negotiated a 10 day period and the creation of a registry of health providers willing to take patients--which is a joke. Only one doctor is listed on the Registry. That was the best that TRTL could do. In 1999, no disability rights groups were included in the coalition.
The law gives undue consideration to the hospitals and the physicians at the expense of the patient and their families. Dealing with a life-threatening illness, suffered by you or a wife, husband, child, parent or other family member, is a horrible experience. The horror is compounded when family members and patients are forced to fight the health providers charged with providing the medical treatments that sustain the life of the patient. The energy of the patient and/or family is turned to dealing with lawyers and courts and calling potential providers who are, usually, turning down care. During all this, the family is acutely aware that their beloved family member may be leaving them forever, but they must fight, instead of spending time at the bedside, in a frenzied attempt to avert certain death.
Is this the kind of compassion we expect from the practitioners of medicine?
We must remember that practicing medicine in Texas is a privilege. Decades ago, physicians pressured lawmakers to require that the practice of medicine be licensed so that they could monopolize medical care. In return for this, Pphysicians are required to adhere to certain ethical standards. One of the most cardinal of sins for a physician is abandonment of a patient--this law legalizes patient abandonment, in my opinion. It is rationalized because the patient is considered to be a "futile" case.
What is meant by "futility"? It's not about the care being "futile". The care is doing what it's supposed to do, which is to keep someone from dying for at least some period of time. What the futilists are saying is that the person's "quality of life" is not worth sustaining and that it is not worth providing treatments that will prolong such a life.
When should doctors should be allowed to withdraw from a case? Well, the standard in the Texas licensing regulations is with "reasonable notice"to the patient. That's a case by case measure.
I operate as an attorney under the same type of standard. A judge would not let me quit a capital murder trial in the middle of the trial--unless another attorney is in place. Whatever his or her reasons, why should a physician be allowed to discontinue orders and withdraw from treating a patient, who wants to fight to live and to have treatment continued, before another physician and/or facility assumes the case?
Before I took on these two cases, I could see the procedural flaws in this law. Now that I have experienced handling these cases, I have become acutely aware of the human cost to patients and families.
I have had numerous calls and e-mails from people who have chronically ill or disabled family members. They are scared to death because this law gives such power to hospitals and doctors. I even talked to a reporter today who had to fight like hell to get a hospital to treat her child due to these ideas about "futility".
As I say in my profile, I have a profoundly retarded sister. If she becomes ill, and needs life-sustaining treatment, even if she is not terminal, she could be labeled as a "qualified patient" under this law because she has an "irreversible condition"--mental retardation. Life-sustaining treatment can be withdrawn from "qualified patients" if the procedure is followed. I am convinced that a hubristic doctor could decide that she should not have the needed treatment because--well...who would want to live in a state of profound retardation, and why spend the resources on such a person?
I am determined to fight those who presume to make such judgments for the Andrea Clarks, the Yenlang Vos and the disabled among us.
This law does NOT work. Andrea Clark and Yenlang Vo prove that the law does not work.