I had to work yesterday and couldn’t attend the hearing before the Human Services Committee of the Texas State House of Representatives, in Austin. I wasn’t even able to watch on the internet until about 5:30 PM. But, I still saw some of the most interesting testimony, and am very impressed that the meeting continued until about 11 PM.
The testimony that I saw was heart-wrenching. It convinced me that we need to teach our doctors how to communicate better and to look more closely at the make up of the hospital ethics committees. There was at least one story about a miracle recovery, too.
I am concerned that any amendment of the Act will be used as evidence against “conscience clauses.” The portion in dispute, 166.046, appears to be a way for the physician to follow his or her conscience and professional judgement as to what is medically appropriate care. If the patient or surrogate is demanding that the doctor intervene to cause death, this law would protect the physician.
However, the (highly) publicized effect of the law is to allow doctors to refuse to provide interventional care that the patient or surrogate wants. All of the disputed cased that I heard about yesterday involved technological procedures in patients with multiple organ failure and who appeared to be within the last week or so of life.
Among those testifying were the sister and son of Andrea Clark, the doctor who took over her care and prevented the necessity of moving her to another hospital, and the families of others who have been affected by the Advance Directive Act.
As I listened to the families’ stories, I believe that I could see where there was a breakdown of communication between the family and the doctors. I wish that I could fix that. Far too often it sounded as though both doctors and family members both become defensive and/or angry.
Sometimes, it appeared that families were, indeed, expecting miracles. And, in one case of a 91 year old woman, it looks like they got it: without dialysis and the immediate placement of a permanent feeding tube, the patient is recovering. (And “firing” nurses who don’t behave!)
Also, from the testimony, some of the hospitals in question do need to reevaluate the members of their ethics committees. There can be no excuse for some of the behavior that I heard about.
More on this, later. (Gotta go to work!)
Edited 4/27/13 for formatting problems from switch from one blog host to another – BBN
>Beverly,The law allows the doctors and hospitals to dispense with communication and compassion. Once the futility process is triggered, they have all the power. Why should they mess with the family after that?Given that human beings are all fallen, we tend to misuse that kind of power.To me, the situation in the Beaumont case is a perfect example of the juxtaposition of a hospital and physicians with all the power versus a situation where a physician comes in, does the proper objective testing, spends time with the family and makes a clear and moral case for withdrawal of treatment–instead of running roughshod over the family via the law.
>jerri lynn,Welcome to the blog!I'm living this – or very nearly – currently, with my mom. I've been very disappointed now and in the past.Nevertheless, "they" are me, at least as far as the doctors go. "They" are my sister, as far as the nurses go. We love our patients. We have honor, pride, and professionalism. I know that some people in all the professions involved are not as good as the doctors and nurses we know and some in our families, but, for the large part, they are.The clinical picture as judged and communicated by a long standing family doctor – someone the woman chose herself 20 years ago – is very significant. I'm astounded by the honorable and caring attitude of the original family doctor in Beaumont as reported in the paper the other day.I would be glad to go over the video in a less public venue – when I can get away from my mother's hospital bed- and show you where the problems and misunderstandings were, that I could see/hear from the testimonies.
>Whoops, it's 13 years, not 20.
>"I'm astounded by the honorable and caring attitude of the original family doctor in Beaumont as reported in the paper the other day."Beverly, the original doctor was not honorable and caring towards the family–at all, no matter about his pretenses with the reporter at the paper. He treated the family like dirt. He also bugged out of town during the ten day period when he was supposed to be helping with a transfer, by law. The hospital case manager also left and told the family that they had to find a transfer all by themselves.The most honorable person in the whole story was Dr. James L. Holly who stepped in, took over the case, and did a simple objective test that told the family what they needed to know, that brain death had occurred. The other doctors kept telling them that there was no evidence of brain damage.Of course there was no evidence, they hadn't done the blood flow study.By the way, that "compassionate" family doctor violated HIPAA when he spoke to the reporter about the details and phi.I think that you are projecting your own character onto these doctors and that you are assuming that they would handle things the way you do. Not all doctors do, unfortunately.
>Which other doctors? The other doctors were wrong, weren't they? Or, perhaps they had a different meaning of "evidence of brain damage." Now, as to "HIPPA," the any-thing-but-privacy act: The "Health Insurance Privacy and Portability Act" is proof that humans "tend to misuse power. Even more, it's concrete evidence that every law has – and has the potential to become in itself – a booby trap. This law killed patient information and privacy by increasing the right of the Federal and State government to medical information – they can even write their own supoenas, now. And they drove another legal wedge between patients and doctors, creating an ever more adversarial climate that cases like the ones we are discussing thrive on. In the last 20 years, I've watched as doctors lose the feeling that they are on the same team as the patient. We're all fighting disease and pain, but somehow the doctor is assumed to be just as much an enemy as the disease and HIPPA condemns us all as unethical from the first point of contact to the last. The whole mess is a minefield these days.Yesterday, the nurses on my mother's unit were torn because they couldn't give any answers to relatives from another state because of HIPPA. The relatives had called, frantic – and then rude – out of their concern, but this incredibly caring and competent nurse could only take their number and promise to give it to the patient.Now, I don't know as much as you do about any of the cases you've worked on. Probably due to HIPPA. But, wouldn't the family have been better off with less of an adversarial position? Less of a need to prove the doctors wrong or in the wrong? So often, when reading about and hearing the families speak about the events, I can see where the misunderstandings arose.For one thing, it's very rare that the nurses are not liasons between the system and the family. That breakdown in relationship – a very tough bond to break because it's one of the things nurses do in "nursing" and they have justifiable pride in it – seems to have poisoned more than one of these cases.Actually, Jerri Lynn, a funny thing I've learned in the last couple of years is that I identify with the nurses more than with the doctors. It's probably because of my family background and my late entry into medicine.
>I'm going to be at the hospital all day. These conversations can be slow, can't they?
>Oh, and one more thing. *I* get to practice medicine – and diagnose "projection." (It's a joke. Or an attempt. Trust me, if we don't laugh, we'll spend all day crying.)For more on my Moma, who's suffering from "paraneoplastic cerebellar degeneration" or "Paraneoplastic encephalitis" or something that has resulted in bunches of tiny strokes, here's the story from an earlier blog post.We still have to start fresh with each on-call neurologist because this is just so rare that none have ever seen it, even if they've even heard about it. So, I know my profession has some problems. I entered med school in 1986, when the "DRG's" and Medicare scrutiny was really clamping down. I knew I'd never make a ton of money as a family doctor. I just didn't know that laws and media would try to stereotype doctors as the bad guys. I thought I'd get to be Jim McCoy or Marcus Welby instead of Dr. Jekyll and Mr. Hyde, depending on the legal climate.
>"But, wouldn't the family have been better off with less of an adversarial position? Less of a need to prove the doctors wrong or in the wrong?"Having a trigger like this law fosters the adversarial in these situations. When a family is within the 10 day period and they aren't getting the help they need with a transfer, yes they are going to defend their family member.By the way, the doctor covering for Dr. Findley told the son that his mother "was a burden on society" in the midst of all this. She WAS an advesary."Which other doctors? The other doctors were wrong, weren't they? Or, perhaps they had a different meaning of "evidence of brain damage." "The neurologist and doctors on the ethics panel. Whatever meaning they had, they weren't explaining it to the family in a comprehensible fashion. Of course, when the ten day period is triggered, there's no incentive for them to do so. Then "it's my way or the highway."When one side holds all the cards, it's human nature to dispense with persuasion and negotiation. The family is "wrong" and the doctor's are "right" and they have the law backing them up.You can't write a law giving excess power to a group, trusting that they won't abuse it. No matter how nice some doctors are.