Tuesday, July 10, 2007


An editorial in the NEJM this week concerns medical futility in Texas. Dr. Robert Truog MD writes about the case of Emilio Gonzalez.

Emilio had been diagnosed with Leigh’s disease, a pediatric illness which is fatal. Sometime before he was 2, he ended up on life support at Children’s Hospital of Austin for five months! Dr. Truog describes some of the painful events, especially how the mother refused to let the hospital move the child. She took the hospital to court, but before the judge could issue a ruling, the child died.

(Does this outcome vindicate the judgment of the doctors? Hmmmm….)

Anyway, it’s a sad ending to a sad case. But this is not what made me angry.

It’s Dr. Truog’s take on ethics committees themselves. Here’s what he says:

“ ...most members are physicians, nurses, and other clinicians from the hospital staff... they are unavoidably “insiders,” completely acculturated to the clinical world and its attendant values. This is hardly a “jury of peers” for a low-income woman of color and her infant son.”

He feels that the ethics committees agree too often with providers. (He states later that ethics committee at Baylor agreed with the clinicians 43 out of 47 times. Gee, I wonder why.)

I will tell you why: Because they know what they are doing.

First, I hate the seamy implication that because the woman is of “color” and is “low income”, that the doctors involved (pediatricians, I suppose) were more willing to treat them unfairly. They kept him on life support for FIVE MONTHS!!! And he died of his TERMINAL ILLNESS!!! (It’s like Terri Schiavo all over again).

Additionally, I do not understand AT ALL his beef that the committee is made up of mostly doctors, nurses and people who are “insiders”. WHO SHOULD IT BE??? Lawyers and people who have never cared for a sick person a day in their life!!???

I’m sure we’d all like someone with no clinical judgment or experience except what they’ve seen on TV to offer an ethical opinion. That makes as much sense as letting a postal worker manage your finances!

Ethics committees are correctly loaded with people who understand a life is at stake, and that family members are the best advocates of the patient. The fact that they agree with practitioners is a testament to the practitioners’ clinical judgment, NOT evidence of a “conspiracy”. I mean, did anyone ever meet someone on an ethics committee who wasn't a "touchy feely" do-gooder? I sure haven't.

Also, what is with his obsession with the whole “jury of peers” and “due process” systema? This isn’t a court of law. It’s an ethics committee. There is no need for a “jury of peers”. No one is on trial. Doctors, nurses, social workers and clinical minds are trying to come to a solution, much the same way a “tumor board” works. I don’t think anyone would call for a “jury of peers” at Tumor Board, if a patient’s cancer treatment was to be decided. That’s because it isn’t appropriate.

Dr. Truog has got it wrong.


Happyman said...

excellent post AngryDoc.

I agree this is just like the Schiavo mess - everybody has an opinion, and they all feel qualified to second-guess the clinical staff taking care of this woman for so many years (even Bill Frist, that scheister).

In the end lots of people were put through the ringer, and the autopsy showed what those actually qualified to judge already knew - that Schiavo was blind & unaware of her surroundings, with profound brain atrophy.

The other issue is that hospitals are private entities (mostly), yet are under so much governmental regulation. Had they been allowed & inclined to, I guess they could've simply said "feel free to ignore our assessments & take the baby home - good luck". I agree this would've been callous but resources are finite.

Anonymous said...

dont you think NEJM is trying to shore up its credibility by appealing to popular emotions [and popular media coverage]...since its recent faux pas[es?] with its right audience - medical docs?

Anonymous said...

Grieving the loss of a child is so painful that often people will do anything to avoid acknowledging it. The mother of the little boy was grieving that she was losing him, the pain so great she didn't want to deal with it. Those who encouraged her to battle with the doctors gave her powerful means not deal with it.

There's this popular meme that extraordinary medical advances can pull the dying back from death's door, if only......

In the past we knew death was inevitable for us all. We had so many social rituals for dealing with it. Nowadays, the main ritual seems to do battle with someone, usually a hospital or doctors. Lawyers and others love the excitement, publicity and 'righteous' chest pounding without regard to fruitlessly extending the family's grief.

Yes, ethics committees staffed with medical personnel is absolutely necessary. But a good reading of the history of medicine reveals deep fissures of personal and institutional corruption in medicine, disregard for human life and patients 'rights' coupled with medical brilliance and compassion. There is on some level a societal awareness of this, and it is this deep vein of mistrust (and a belief that doctors can do miracles if only they would) that the lawyers and politicians mine.

Of course most people also know that lawyers and politicians are very corrupt in general, and so feel themselves playing one group against the other to 'save' themselves or family.

Inevitably, there can be corruption in families, too, who see a potential windfall (financial or emotional) in the dying of a family member.

Life is just so messy much of the time. Right up to the end of it.

Anonymous said...

This is so patronizing and condescending, I hardly know where to begin.

I think it's appropriate that the *majority* of the ethics committee is made up of health professionals who have expertise and experience to bring to the table.

*However,* it is also appropriate to have at least one token layperson, if for no other reason than to offer the minority perspective and try to ensure that other points of view are heard.

This does not mean you have to go along with everything a layperson says. It's just that laypeople can often be a source of insight into how families think and feel when there's a crisis and how to sensitively communicate with them so the battle lines don't become even more sharply drawn than they already are.

How do you expect nonmedical people to gain a better understanding of futility of care, when your assumption is that we are so stupid we couldn't possibly understand and therefore deserve to be excluded from the discussion?

Your arrogance and gall are breathtaking.

Anonymous said...

So why even the token layperson?
In essence aren't all the members of the ethics committees laypersons for most of their lives. Every one of them has experienced medicine from the other side either for themselves or for a family member. It is impossible to gather a room full of adults with a mean age over 40 and not expect most to have seen someone they love through the dying process. They are there to provide the objectivity that both the primary medical team and the patient and family might lack.

Anonymous said...

I mostly agree with you, anony 1:27 PM, except for one thing: Even though every single one of us is guaranteed to experience illness and loss among our loved ones, medical people have the advantage of an insider's knowledge of disease processes and the medical culture of decision-making. For the most part, medical people have had experience of seeing hopeless cases among their own or their colleagues' patients and therefore have at least an inkling of what to expect, vs. the layperson for whom all of this is a relatively more rare experience. There are also such things as professional courtesy and deference that tend to be extended to medical professionals - the "one of us" syndrome - that are not necessarily accorded to laypeople. After all, we're stupid, as Dr. Mike keeps telling us.
So while I know that all of you will be stunned and stressed out and grieving when something happens to one of your loved ones - because you all are human - you are still approaching this as an insider while the rest of us are outsiders. Outsiders are, well, outsiders. And instead of leaving us outside the magic circle, maybe we should be included a little more and given the opportunity to learn and participate in the discussion. Don't shut us out and then slam us for being dummies.
That's all I was trying to say.

Anonymous said...

I am a nurse who has attended a hospital medical ethics committee meeting on behalf of a low income woman of color whose infant had a fatal illness. And I disagree about the composition of the ethics board.

The mother in question was angry about what she felt was a lot of pressure from doctors on the unit to discontinue life support for her daughter. She was NOT invited to the meeting, however, to speak her piece (that may be enough in itself to make you mistrust the ethics committee). So I, the primary nurse for the child, went, to present the mother's views and arguments. To my way of thinking, that woman had every right to be at that meeting. And she was excluded. She was not even notified that her case would be presented to the ethics committee.

There should be a person who is trained extensively in ethics--the chairperson. Docs and nurses have had course work in ethics, but they have not had extensive training. This chairperson is probably the most objective person there.

At the ethics committee meeting I attended, clergy were present--hospital chaplains who had ministered to the spiritual needs of this mother, who was doing anticipatory grieving.

Those who take care of the healthcare needs of people every day, myself included, often enough do not see the forest for the trees.

AND they may be too enmeshed, or personally involved, their colleagues being under fire.

What is the goal? And how can it best be achieved? Get the team together who can accomplish the goal, whatever it is. (Proposed goals: 1) Persuade mother that our definition of quality-of-life is right for her and her child, over her objections and her own set of values; 2) Stop her from criticizing the docs, the policies, the procedures; 3) Give her as much time as she needs, as much time as she asks for, to accept the facts and let go; 4) Get the child out of the hospital because she is on Title XIX--Medicare--and that is charity care; 5) Or ??? Believe me, every one of these "goals" was discussed at the ethics committee meeting I attended.)

In the case I am writing about, a geneticist and a medical ethics physician from another facility got involved in this case. They did not attend the meeting, but their views were presented to the mother and to the board.

Transparency. More transparency is needed in medicine, and the ethics committee need not be a closed society of medical people. If it is, transparency may be questioned. IMO.
Chris K

Mike said...

anon 12:47...

The editorial by Truog saus that there usually are one or two laypeople, so your argument is irrelevant.

I'm saying that an ethics committee is not a TRIAL BY JURY and should not be treated as one. Most of these "futile care" cases never have anything to do with reality. Only the needs, as Chris K says, to

"Give her as much time as she needs, as much time as she asks for, to accept the facts and let go; "

Great, except what iof she never DOES accept it??? There are limited resources in healthcare.

The mother should be interviewed surely, by why does she have to be at the meeting?

Happyman said...

Having been at plenty of these meetings, I think often patients & families aren't there out of a genuine concern that they'd be needlessly hurt by having so many qualified people discuss how futile further care would be.

These cases all stem from denial, and overwhelmingly throwing it in their faces that they are holding out for a miracle when there is no hope is perhaps cruel.

Anonymous said...

Mike said

"Great, except what if she never DOES accept it??? There are limited resources in healthcare."

The ethics committee said that cost could not be considered in their recommendation. The recommendation was NOT, could not be, based on the mother's ability to pay, or whether she had private insurance or Medicaid Title XIX. (The mother had believed that docs were pressuring her to discontinue life support because she could not pay.)

Their recommendation was only advisory--it was to NOT put pressure on this mother. Ethics committees do not make decisions for patients--they ONLY recommend. Their recommendations are not binding. They could not know how long the mother would keep her child on the vent.

As it turned out, it was 7 weeks, only 1 1/2 weeks of which occurred after the committee meeting.

Prior to the involvement of the ethics committee, an ethicist from another facility met with the mother. That person, as well as the doctors treating her child, argued "quality of life" with the mother, who believed in the absolute value of life--which, in this case, was antithetical to the quality-of-life arguments. (See the current discussion about quality of life on The Preemie Experiment blogspot.)

This mother chided the doctors and ethicist for not having faith that HER child could be in the minority who survive this usually deadly genetic abnormality.

She was strident and lashed out, and , as time went on, had a list of people who she did not want to take care of her child. Several doctors and many nurses were on her list.

The mother's message to the committee was this: I do not intend to leave my child up there with you forever. I only need time to get to know her better. The comittee, then, as I said, recommended to give her that time without pressure or harrassment.

When the mother finally okayed the child to be removed from the vent, she lived 3 more days, the mother in constant attendance. The anger went away abruptly during that time because the mother got what she needed--she got time and we stopped trying to take the control away from her. We respected her and respected her wishes.That was how I saw it.

Actually, I saw it as a good death. Many people rose to the occasion--there are several sidebars to the story that tell about people stepping forward in support.
Chris K

Anonymous said...

happyman said

These cases all stem from denial, and overwhelmingly throwing it in their faces that they are holding out for a miracle when there is no hope is perhaps cruel.

Denial. In psych I learned that denial is a legitimate interim coping mechanism.

In this case (and probably many other tragic cases as well), "interim" is the operative term---this mother needed time to adjust, get to a certain stage of grieving, and get some, if not all of her needs/requests met. IMO.
Chris K

Happyman said...

are YOU ever gonna post again???

Unknown said...

There's a question here about what sorts of life are worth preserving. This kid had technical biological life. Treatment was futile -- his brainstem was going to eat itself -- but there was something there, even if that something was just meat.

I would make a different treatment decision. I'd pull the life support from my child, my wife, my mother -- whomeever. This is because I'm a strict materialist, and I believe that the cessation of metabolism in the brain is the cessation of personhood.

But we happen to allow people to disagree, and to act on those disagreements. We allow people to act on all sorts of basically irrational shit. Our government even subsidizes the propagation of basically irrational shit, because it makes people feel better. That's the core of it.

Futile medical care, at least in situations where brain death occurs early, isn't a huge cost. It doesn't even rack up a full percentage point. Treatments that are futile and within the standard of care (c.f. Temodar, Avastin or even things like Aricept and Copaxone) rack up relatively large percentages. But, of course, you focus on crazy patients rather than pen, Post-It, and golf-outing addicted doctors.

There's a mote in the eye of patients with dying kids. But did you notice the enormous fucking beam in the doctor's?

-- ACS