Wall Street Journal on dealing with dying parent

Thank you, Wall Street Journal, for giving us this free article on dealing with a dying family member, focusing on children who live out of town.

The best point: "Just go." You won't regret it.

Virtual science vs. actual experimentation (Emergency Contraception)

There's still no evidence that Plan B interferes with implantation, and lots of evidence that it doesn't.

There have been reports that Drs. Mikolajczyk and Stanford ("Levonorgestrel emergency contraception: a joint analysis of effectiveness and mechanism of action." Fertility and Sterility R. Mikolajczyk, J. Stanford, access to free abstract available, here) have proven that there is an abortifacient effect from the morning after pill ("Emergency Contraception," EC, or the levonorgestrel-only pill protocol, LNG EC).

In fact, they do not "prove" anything. Mikolajczyk and Stanford derived an equation from actual results from observing oocyte follicle development and ovulation in women. They then used statistical, "virtual" models,to estimate they effects of LNG:

We simulated random samples of 10,000 women presenting for EC for a single cycle each, and we calculated the number of ‘‘expected’’ pregnancies for each simulated cohort of women using both sets of the daily fecundity data. We assumed that women ‘‘presented’’ for EC treatment with equal probability on days –10 to +5 around the day of ovulation
(day 0).

For each of the women within the fecundity window, we used the follicular growth equation to estimate a follicular diameter, which in turn was used to estimate the disruption of ovulation by LNG EC based on the data from the Croxatto study (Table 1). We assumed that effects observed for 12–14 mm, 15–17 mm, and R18 mm groups reported by Croxatto et al. (15) apply to follicles of size up 11.51–14.5 mm, 14.51–17.5 mm, and R17.51 mm, respectively. When LNG EC was administered on a day when follicular size was below 11.5 mm, we assumed that there was zero probability of pregnancy. These conservative assumptions maximized the possible effects of LNG EC to disrupt ovulation and prevent fertilization.With this information, we estimated the ‘‘observed’’ pregnancies within the simulated cohorts.

Durand and Croxatto's teams studied how LNG EC actually worked in the bodies of real, live women, using biopsies, exams, assays of hormones and serial ultrasounds, as well as animal studies. Mikolajczyk and Stanford actually refer to the Durand study on human women, "On the mechanisms of action of short-term levonorgestrel administration in emergency contraception," (available free on line, here), but say the evidence from biopsies are "mixed."

On the contrary, Durand reported on actual labs, ultrasounds and even biopsy samples from actual observations:

The results were highly consistent with the chronological date of sampling because differences longer than 3 days between the histologic diagnosis and the day of the cycle were not observed. A total of 24 out of 33 biopsies from treated cycles with ovulatory features were studied. The rest were excluded because of insufficient tissue sample (one from Group B and D) or because sampling did not correlate with the cycle day (three from Group A and four from Group D). Table 3 summarizes the morphological findings in Groups B, C, and D. No significant changes were observed between treated and control specimens in any of the studied parameters. No significant differences among groups were observed. Of particular importance was the finding that the predecidual changes as evaluated by the
presence of prominent spiral arteries, which are considered
crucial for implantation [24], were not altered by LNG.

The post ovulatory mechanism is most likely explained by the finding in many studies, including Durands', which have demonstrated a strong effect on mucus thickness and sperm motility from the Levonorgestrel protocol (LNG EC). Practitioners of Natural Family Planning are familiar with this (natural) effect of (natural) post ovulatory rise in progesterone: when the progesterone levels rise after ovulation, the cervical mucus becomes thick and fertility goes down because the sperm can't get to the egg for fertilization. The movement of the oocyte down the fallopian tube is slowed also, because the cilia in the tube are affected. The combination of these two phenomenon explains the increased rate of ectopic pregnancy in women who do become pregnant using levonorgestrel only EC and daily pills.

There are definitely problems with EC. It only works when it works for 4 or 5 days before ovulation and, possibly on the day of ovulation. (The oocyte only lives about 24 hours.) This is the first time that contraceptive pills have been made available to men as well as women. For some reason, women don't use the pill correctly, even when they have them at home. And we have tons of evidence that neither the pregnancy rate nor the abortion rate are affected by making the pill available over the counter. And there's the increased risk of ectopic pregnancy described above.

However, this "study" appears to be statistics used to argue against observations derived from real life medical experiments in order to prove a pre-conceived position.

Hiatus (Over, I hope)

I haven't been blogging - I've been lobbying and working, instead. Whether in Austin or at work, my access to the blog is spotty. And I worried that anything I wrote might get in the way of some bills we were fighting for.

Unfortunately, the Texas legislature is self-destructing and virtually none of the pro-life, pro-family bills made it through.

One of the bills I was lobbying for contained amendments to the Texas Advance Directive Act (TADA) that would have increased protection for patients, prevented the removal of artificial hydration and nutrition, and more than doubled the time that doctors had to give medical treatment that they and others deemed "inappropriate." An improved process for communicating with families and a liaison between the family and the doctor was in the bill, which would have also added funding for facilities that offered complex medical treatments, such as dialysis for comatose patients, which simply don't exist in Texas. For two more years, we have the same law and the same arguments.

I do expect some of the recommendations, such as a dedicated liaison and improved communications to be adopted voluntarily in hospitals, as the good ideas that they are.

The Bill to limit embryonic stem cell research also failed, but we did get a brochure to explain the options available for donating cord blood and held the line on expanding unethical research, since several "clone and kill" bills were blocked.

Billions and Billions of stem cells (or ACT kills more mice needlessly)

Once again, ACT is hyping research that duplicates work already done using non-embryonic stem cell research. The only thing new is the possibility that they have come up with a way to make "Billions" of the plastic cells.

Ok, maybe we learned something from Advanced Cell Technology's Robert Lanza's latest human embryonic stem cell report published on line (free) prior to print in Nature Methods, "Generation of functional hemangioblasts from human embryonic stem cells." Perhaps the method of growing the cells without animal or human serum will prove useful.

This time, ACT is hyping their development of "hemangioblasts," the stem cells that become blood cells and the cells that make up the blood vessels, and the big claim is that the researchers at Advanced Cell Technology have a technique for making "billions and billions" of cells. Their own introduction explains that the group has not developed a new line of cells or proven anything new as far as vascular repair goes:

Although progenitor cells have recently been discovered that can enter the circulation in response to vascular injury and ischemia (1–5), defining and isolating these cells has proven problematic. Circulating bone marrow–derived cells have also been shown to be important in normal physiologic maintenance and repair of the body’s vasculature (6,7) with approximately 1–3% of endothelial cells at any one time being bone marrow–derived. Furthermore, the entire hematopoietic system has been hypothesized to originate from a transient population of hemangioblasts restricted to embryogenesis (8,9). But recent evidence suggests that hemangioblasts or more mature endothelial progenitors may also exist in adult tissues and umbilical cord blood (2–4,10,11).More direct proof for their existence was provided when the in vitro equivalent of the hemangioblast was isolated using a mouse embryonic stem cell differentiation system (12,13). Recently a human hemangioblast cell population derived from hES cells was also identified using a procedure that consisted of serum-free differentiation in a mixture of cytokines followed by expansion in serum-containing medium (14). To date, large-scale generation or functional assessment of hemangioblasts has not been achieved in any of these systems. Here we show that large numbers of what appear to be a distinct population of progenitor cells with both hematopoietic and vascular potential can be efficiently and reproducibly generated from hES cells using a simple two-step procedure with different supplements under fully serum-free conditions.

Here's those references, please note the titles:

1. Rafii, S. & Lyden, D. Therapeutic stem and progenitor cell transplantation for organ vascularization and regeneration. Nat. Med. 9, 702–712 (2003).
2. Grant, M.B. et al. Adult hematopoietic stem cells provide functional hemangioblast activity during retinal eovascularization. Nat. Med. 8, 607–612 (2002).
3. Bailey, A.S. et al. Transplanted adult hematopoietic stems cells differentiate into functional endothelial cells. Blood 103, 13–19 (2004).
4. Cogle, C.R. et al. Adult human hematopoietic cells provide functional hemangioblast activity. Blood 103, 133–135 (2004).
5. Otani, A. et al. Bone marrow-derived stem cells target retinal astrocytes and can promote or inhibit retinal angiogenesis. Nat. Med. 8, 1004–1010 (2002).
6. Crosby, J.R. et al. Endothelial cells of hematopoietic origin make a significant contribution to adult blood vessel formation. Circ. Res. 87, 728–730 (2000).
7. Hill, J.M. et al. Circulating endothelial progenitor cells, vascular function, and cardiovascular risk. N. Engl. J. Med. 348, 593–600 (2003).
8. Wagner, R.C. Endothelial cell embryology and growth. Adv. Microcirc. 9, 45–75 (1980).
9. Park, C., Ma, Y.D. & Choi, K. Evidence for the hemangioblast. Exp. Hematol. 33, 965–970 (2005).
10. Loges, S. et al. Identification of the adult human hemangioblast. Stem Cells Dev. 13, 229–242 (2004).
11. Pelosi, E. et al. Identification of the hemangioblast in postnatal life. Blood 100, 3203–3208 (2002).
12. Choi, K., Kennedy, M., Kazarov, A., Papadimitriou, J.C. & Keller, G. A common precursor for hematopoietic and endothelial cells. Development 125, 725–732 (1998).
13. Kennedy, M. et al. A common precursor for primitive erythropoiesis and definitive haematopoiesis. Nature 386, 488–493 (1997).
(Emphasis is mine)

As I said, the main claim in the article is that the ACT researchers made a large number of hemangioblasts, and set about proving that they were, indeed, hemangioblasts, through experiments on mice, which all had induced injuries and which were sacrificed for autopsy.

However, what do we read in the tabloids science mags?

From Scientific American.
"New Recipe for Powerful Stem Cells Promises Greater Insight."

Other groups had discovered hemangioblasts in mouse and human embryonic cells as well as in adult human bone marrow and umbilical cord blood. But they were unable to harvest them in large enough numbers to evaluate the cells' healing properties.

And from Technology Review, "Stem Cells Repair Blood Vessels: A new method to boost growth of blood vessels with stem cells could improve cell therapies for diabetes and heart disease."

And last, but not least, from Reuters, UK, "Embryonic stem cells can repair eyes, company says."

"For example, we injected the cells into mice with damaged retinas due to diabetes or other eye injury. The cells (labeled green) migrated to the injured eye, and incorporated and lit-up the entire damaged vasculature. The cells are really smart, and amazingly, knew not to do anything in uninjured eyes."

The researchers killed the mice to check the cells' progress, so they do not know the long-term effects.

What none of the articles mention is the ongoing studies using non-embryonic stem cells to do what ACT claims its embryonic stem cells will do.

There was this report in the American Journal of Pathology in 2006 and this one from 2004, published in the Journal of Clinical Investigation about using a patient's own bone marrow cells to repair eye injury. Both used mouse models.

There is also the Austin, Texas trial that I reported on last week, which is using donor bone marrow cells. And there are several studies, including one using the patient's own stem cells to treat "Critical Ischemic Limb," at Houston, Texas' Stem Cell Center at St. Luke's Hospital.

It appears that this is just one more example of hype and hope about cells that have already been studied - and even used in humans - when someone (ACT, too often) claims to have a new study proving that they have generated human embryonic stem cells of some sort or other and to have "cured" some disease. (in mice, if at all.)

Lancet's "Comments" on its WHO expose'

Here's more from The Lancet, an editorial comment discussing why the World Health Organization's opinions matter at all.

Just last week, I had to answer a pro-abortion argument that had used WHO statistics on abortion, the safety of abortion contrasted with carrying a pregnancy to birth (and delivery of a live child) in relation to the Partial Birth Abortion ban ruling by the Supreme Court on one of the American Academy of Family Physicians' e-mail lists.

Housekeeping

I fixed a broken link in that story about Nature Neuroscience's refusal to allow dissent on its editorial pages, or even a rebuttal when the editors attack a scientist for expressing her opinion in another journal. (It seems that extraneous commas interfere with html.)

If you follow the (functioning) link, there are links to all the editorials and articles in question.

WHO(se) life is it anyway? (Or "We meant well")

The Miami Herald (with a HatTip to Drug Wonks) reports on the Lancet's report on the World Health Organization's lack of evidence for its "evidence based" recommendations and guidelines.

I like this part (From the The Miami Herald) the best:

One unnamed WHO director was quoted in the study as saying: "I would have liked to have had more evidence to base recommendations on." Another said: "We never had the evidence base well-documented."

Pang said that, while some guidelines might be suspect and based on just a few expert opinions, others were developed under rigorous study and so were more reliable.

For example, WHO's recent advice on treating bird flu patients was developed under tight scrutiny.

Oxman also noted that WHO had its own quality-control process. When its 1999 guidelines for treating high blood pressure were criticized for, among other things, recommending expensive drugs over cheaper options without proven benefit, the agency issued its "guidelines for writing guidelines," which led to a revision of its advice on hypertension.

"People are well-intended at WHO," Oxman said. "The problem is that good intentions and plausible theories aren't sufficient."

Bloggers on "Loaded Lanquage"

The blogger, Nick Anthis, a graduate of Texas A&M and a Ph.D student and Rhodes scholar currently studying at Oxford, occasionally posts at his blog, Scientific Activist ("Reporting from the Crossroads of Science and Politics"). On his "About" page he warns us that "enemies of science" should "Beware!"

As part of his campaign against his "enemies," has a post from May 8, 2007 that notes "Loaded Language in Media Coverage of Embryonic Stem Cells." He accuses the New York Times(!) author, Pam Belluck, and her fellow science reporters of being "pawns of the conservative movement."

But not to worry, he gives Ms. Belluck the exact wording he would prefer:

Instead, the author could write that "President Bush objects to the necessity of what he calls the destruction of human embryos" or that "President Bush objects to the use of human embryos."

However, the commenters on the blog don't appreciate any other viewpoint, especially a clarification of whether or not "destruction of embryos" is an accurate description of the process of harvesting embryonic stem cells. That being said, surely they would benefit from hearing from us.

If you have a minute, stop by and say hello to Mr. Anthis and friends at Scientific Activist.

Edit: 05/12/07 - another broken link.

Austin Texas Patients In Adult Stem Cell Research

The Austin, Texas TV station, KEYE, has a report on the research trial using donated adult stem cells from bone marrow in patients within 10 days of a heart attack. (I've highlighted the part about the bone marrow.)

Seema Mathur
Reporting

(CBS 42) AUSTIN

A clinical stem cell trial involving Austin patients has some doctors saying it may change medicine forever.

The trial involves heart attack patients using adult stem cells. The stem cells are from the donated bone marrow of healthy adults.

The trial is in its first phase, with just 10 sites around the nation. Doctors are already saying the results hold the promise of doing what has never been done before, rebuilding heart muscle of heart attack patients.

Ben Calvo, a math teacher, was willing to take what he considers a calculated risk. He's one of 53 heart attack patients in the nation taking part in an adult stem cell clinical trial.

“I don't feel like a guinea pig,” Calvo said. “I don't want to say I feel super human, but I feel just great.”

Dr. Roger Gammon is director of research at Austin Heart, cardiologist providers in Central Texas. He says that in the double blind study, within 10 days of a heart attack, some patients received adult stem cells from donated bone marrow and other patients received a placebo.

“We hang a bag that has millions of stem cells in it,” Gammon said. “They infuse through the vein and travel to where there is an injury. It's just a simple intravenous infusion over 30 minutes.”

Calvo thinks he received the real thing. According to recent images of his heart, so does Gammon.

“Now, his whole heart is moving well,” Gammon said.

The image of Calvo’s heart is amazing because, up until this study, nothing could repair damaged heart muscle.

“They don’t just patch the problem, they actually become heart tissue that starts beating,” Gammon said.

“I feel that I can breathe better,” Calvo said.

Gammon says there was no rejection. He says some patients also had unexpected improved lung function and less irregular heartbeats.

“There seems to be an amazing homing mechanism with these cells to where they can figure out where there is an injury in your body and they go there and start to heal it,” Gammon said.

Calvo believes healing heart muscle is exactly what he experienced. Calvo also had some stents put in after his surgery.

Before this can become an approved treatment, many more people need to be studied to see if the results continue to be promising. But if they do, Gammon suspects this treatment may also help other inflammatory conditions like Alzheimer’s.

(© MMVII, CBS Broadcasting Inc. All Rights Reserved.

Texas "Futile care debate: Prolonging life or suffering?"

The Houston Chronicle has an unusually good and balanced article on one case in the on-going debate in Texas on the end of life care, originally published May 6th.

The article uses the example of 91 year-old Mrs.Edith Pereira, and the way that her daughter, Zee Klein, made sure that she got the care that Mrs. Klein believed she should have:

Taking action on her own

Zee Klein wasn't about to just let her mother die, no matter what some hospital committee decided. But instead of waging a high-profile fight against the hospital, she decided to get her mother out on her own.

It wasn't going to be easy. For one, Medicare wouldn't cover Pereira's care if she were transferred to Christus St. Joseph, the downtown hospital where a doctor had agreed to take the case. Her coverage for her particular diagnosis already had been exhausted at Memorial Hermann.

Further complicating matters, Pereira's condition was deteriorating fast — by the time the hospital's futility committee ruled, she was in respiratory distress and her kidneys were failing. Doctors wrote in her chart that the discharge was against their advice.

"The patient was unstable," Castriotta said. "Given how sick she was, doctors felt her release would be dangerous."

The moment wasn't lost on Klein.
"She looked like she was in the throes of dying," said Klein, 68, who had previously cared for her late husband when he suffered a stroke and numerous heart attacks. "We didn't know how long she had."

Still, Klein had a plan. She would have her mother transferred back to St. Dominic nursing home for several hours, then taken to St. Joseph's emergency room, where federal law would require she be admitted.

But would she make it? Pereira's condition was so precarious that paramedics gave her oxygen through a respirator and stood ready to take her to a closer emergency room if it looked like she wouldn't survive the drive to St. Joseph.

On the afternoon of June 26, Pereira was discharged from Memorial Hermann and started the journey.

***
`Extremely poor' prognosis

Pereira made it to St. Joseph Hospital, but doctors summed up her prognosis in two words: "extremely poor."

It was understandable. On the day she was admitted, Pereira's problems included pneumonia; sepsis, a potentially fatal blood infection; dangerously high blood sugar; severe dehydration; a urinary-tract infection; kidney failure; and respiratory distress.

Doctors worked diligently over the next 72 hours to stabilize Pereira, giving her antibiotics, putting her on intravenous fluids, balancing out-of-whack electrolytes that were causing the kidney failure.

Pereira improved significantly, and St. Joseph scheduled an ethics committee hearing to consider all the options, which included inserting a gastric feeding tube. Many doctors, like those at Memorial Hermann, thought that the case seemed futile.

But Klein had one thing in her favor. St. Joseph, which since has been sold to Hospital Partners of America, then was a Catholic hospital.

"We follow the U.S. bishops' directive that the presumption be in favor of nutrition and hydration as long as the benefit outweighs the burdens on the patient," said Mike Sullivan, an administrator at Christus Health Gulf Coast, St. Joseph's corporate headquarters before the sale. "At a Catholic hospital, food and water are considered comfort care."

The ethics committee persuaded Klein to put a "do not resuscitate" order on her mother in the event of a cardiac arrest. A week after the meeting, a St. Joseph gastroenterologist inserted the feeding tube.

On Aug. 12 — a month later, finally free of all infections — Pereira returned to St. Dominic nursing home.

On the one hand, there's a lot to be said for the fact that Mrs. Pereira lived another 8 months and was stable for a while. Mrs. Klein spoke about her mother "firing" a nurse when she told her story to the House Public Health Committee meeting last August 9th, while Mrs. Pereira was still in the hospital. (RealPlay Video at about 8:00/12:38 to about 8:20/12:38 on the timeline) On the other hand, Mrs. Pereira was put through a lot of invasive interventions in the hospital, on a ventilator, dialysis, and other treatment for multiple organ failure, with several readmissions to the hospital over the next 8 months for infections. The last was for treatment for respiratory failure, ending with her death in a long term acute care hospital.

I especially like one of the comments from a reader, "KISDteacher," speaking about the care of her own 100 year old grandmother:

When it takes more than God to keep her alive, she made it clear that she doesn't want to keep going.

As I approach the first Mother's Day after my mother's death, I'm glad that she was spared the debates over feeding tubes and resuscitation. And I am so grateful that I was with her when she died and that I can remember rubbing her back and using a straw and spoon to feed her the afternoon of her death.

No dissent allowed in Nature Neuroscience journal

I received a reply to my letter to the editors at Nature Neuroscience yesterday:

9th May 2007

Dear Dr. Nuckols,

Thank you for your letter to the editor of 3rd May. Having had a chance to consider it, we do not feel that this subject would be appropriate for our letters section. We think that these matters would be more appropriately discussed on the Nature Neuroscience blog, Action Potential, given the intense pressure for space on our pages. We have made the editorial freely available and posted links to the relevant original articles at http://blogs.nature.com/nn/actionpotential/2007/04/does_human_embryonic_stem_cell.html, and we invite you to post your response there.

Yours sincerely,

Annette Markus, Ph.D.
Associate Editor
Nature Neuroscience

I've posted my letter, but it's awaiting the moderator's approval.

Just in case, here's that letter and my comment:

Frankly, what is the "scientific" justification for declaring any argument "anti-science"?

The editors suggested that I post my letter to them to this board. Here it is:

To the Editors:

I was surprised to read an unattributed editorial in the April, 2007 Nature Neuroscience, ("Shaky arguments against stem cells") critical of the essay in First Things by Maureen Condic, Ph.D. While emphasizing the "conservative Roman Catholic" background of the ethics journal, she is accused of "spinning" science "to fit an anti-scientific purpose." It appears that NN's anonymous editors' purpose is much less scientific that Dr. Condic's unless we're discussing political science.

There is no expression of disagreement about Dr. Condic's facts or her credentials to comment on the subject of embryonic stem cells and it is noted that she does not engage in making "fundamental moral arguments." Those anonymous authors seem most offended that she commented at all. The editorial, published without identifying the authors, reflects a deep bias and a "spin" of its own, discrediting your journal and "distorting the state of the field," indeed.

Beverly B. Nuckols, MD
New Braunfels, Texas

(Edit 5/12/07 to fix a broken link)

AMA on Texas Advance Directive (Futile Treatment)

The AMANews magazine, a weekly print newspaper for the members of the American Medical Association, has an article in the May 14 edition, available on line now. The excerpt is free here, but full content is only available to members and paid subscribers. Since LifeEthics readers have been following the progress of the legislation and know about the most recent action in the Senate Health and Human Services Committee, here's the portion that's not available for free:

Texas hospitals have used their state's advance directives law 27 times to withdraw treatment over family objections, said Robert L. Fine, MD, one of the 1999 law's architects.

Supporters of the status quo say the process normally extends far beyond 10 days.

"This law is usually invoked after days, weeks or even months of negotiation with families," said Tom Mayo, a health law professor at Southern Methodist University in Dallas who has helped evaluate more than a dozen medical futility cases on various hospital ethics committees.

Those seeking to abolish the time limit, however, allege that hospitals are most concerned about the estimated $10,000 a day it costs to provide intensive-care unit life support in these cases.

"The current statute, effectively allowing euthanasia with a polite and perfunctory 10-day notice, is misapplied and rips families away from the bedsides of their loved ones," said Bob Deuell, MD, author of a Senate treat-until-transfer bill, in an April letter to The Dallas Morning News. Dr. Deuell did not respond to AMNews' interview requests by deadline.

Bob Kafka, a Texas organizer for Not Dead Yet -- a disability rights group that opposes the advance directives law -- said in a statement that "the ability of a doctor to overrule both the patient and their surrogate in withdrawing life-sustaining treatment is in violation of the principle of patient autonomy."

But physicians argue that their obligation is principally to the terminally ill patient, not the family.

"It can be hard for patients' families to wrap their heads around the dying process," said Hanoch Patt, MD, an Austin, Texas, pediatric cardiologist who has served on hospital ethics committees and testified against the treat-until-transfer legislation. His patients often require invasive procedures if there is any hope for recovery, "but when a treatment can cause only more pain and suffering without any hope of benefit, then we're just prolonging the dying process, and I'm obligated to stop the treatment."
Compromise in the works

As this story went to press in late April, a compromise bill authored by House Public Health Committee Chair Dianne Delisi that would give families 21 days' notice to secure a transfer before the withdrawal of life support gained backing from the Texas Hospital Assn. and the Texas Medical Assn. The bill also would not apply to cases in which the only life support provided is artificial hydration and nutrition.

Such a compromise is not ideal, said Mark Casanova, MD, an internist at Baylor University Medical Center in Dallas.

"Physicians are going to live within the legal confines that we are forced to live within," he said, "but morally and based on medical ethical principles that are centuries old, we don't feel that it's necessarily appropriate. It's just 11 more days of suffering and pain for these patients that will not result in a single saved life."

AMA policy on futile care says hospitals should develop policies on how to handle such cases, refer them to ethics committees, involve families to the greatest extent possible and attempt to negotiate settlements. If the committee sides with the attending physician, the ethical opinion states, the hospital should seek a transfer, and if no transfer can be arranged, care should be withdrawn.

(Un)Ethical Science Journals

I guess the first question should be, "Where is the scientific and ethical justification for demanding public funding of science without public restraints?"

The next is, "When there is public disagreement, what is the ethical way to conduct the discussion about the disagreement?"

I'm sure that the answer to the second is not "hit and run."

Wesley Smith adds a new bit of information to the story I wrote about last week, concerning an attack on Maureen Condic, PhD, for her informational article on the lack of promise of embryonic stem cells.

It seems that that the journal Nature Neuroscience has refused to allow Dr. Condic, a respected neuroscientist herself, to respond to the editorial on their pages.

Why, Wesley, the editors didn't display enough courage to sign their names. I'm not surprise that they continue to take the less courageous road.

End of Life Compromise Texas

According to the Houston Chronicle, the Senate Health and Human Services passed a compromise bill to amend the Texas Advance Directive Act to extend the time lines for end of life care when the doctor believes that technological intervention is inappropriate.

The new committee substitute for Senator Dr. Duell's bill 439 was introduced by the Senator himself. It mirrors the current version of Representative Delisi's HB 3747. There will be 7 days notice before the ethics hearing and 21 days before care can be withdrawn or withheld against the surrogate's wishes. I believe that the House Bill will pass the Committee easily.

I'm sure that the Senator and Representative and their staffs have been working hard to come to this point. I know that those of us who have been advocates have put in many hours and much concern and prayer.

Bravo, 80th Texas Legislature!

Do No Harm 101 (Wesley Smith, Catholic Bishops and Futile Care)

Wesley Smith is covering Texas' legislature's debate over our Advance Directive Act. Yesterday, he accused the 24 Bishops of Texas of practicing "Futile Care Theory," which he defines as the decision to limit care by anyone other than a family member or patient. (In other words, here, he says that Terri Schiavo was not a "Futile Care Theory" case.)

Patient autonomy is not the first principle of medicine - that should be non maleficence guiding beneficence over-rides autonomy. "Heal when possible, but first, do no harm."

If you want to get to basics, the right to life means the right not to be killed, not the right to some one else's actions to maintain your life to the standard that you want and as long as you want. The doctor also has the right to life and the right to liberty.

Those rights intersect in medicine with/by a fiduciary duty of the doctor to place the patient's interests above his own and society has agreed that medicine is a good that we will provide for our community.

These interactions have to be guided by a respect for life and health and the medical knowledge and skills of the doctor. The medical knowledge and skills are the element that is measurable, licensed and verifiable by observers outside the patient-physician relationship. The practice of applying medical knowledge and skills requires medical judgment. Acquiring medical judgment - even if it's just the ability to understand statistics and not a growth of our actual wisdom - is how we learn to do surgery and chemotherapy when it's obvious that there's at least a short term harm.


I certainly don't practice medicine at what Wesley Smith has called "at the macro level." The closest I come to "macro level" thinking is that extra ankle xray to rule out fracture and ward off lawsuits. And I don't dare touch a pregnant woman after 20 weeks without all kinds of informed consent forms that ensures we understand that I'm taking care of the cold or sprained ankle (no xray here, without the Obstetrician's permission), because I'm not insured for OB care.

Nevertheless, money is a factor - society has a duty to the entire community, but the doctor's fiduciary duty has been to the patient in front of him. We've pretty much held that line over the last 20 years despite the push to make us "gatekeepers" and "managers." (read that, "bean counters." However, a doctor can't afford to financially bankrupt himself to devote care to one patient or to provide free or deeply discounted treatment for so many other patients that he can't provide for his family. (and pay his staff, taxes, rent, etc.)

Every day, our ability to offer increasing levels of technology and pharmaceutical interventions that can serve to keep a body alive longer and as more cells and organ systems fail. It was reported this week that new techniques of resuscitation after cardiac arrest that may benefit - and may harm - thousands of patients.

Each new ability to keep patients alive when they would have died "naturally" puts more stress on the medical judgment element. And puts the doctor in the position of increased likelyhood that he will have to determine the benefit to his patient for more and more invasive treatment. A side effect is that some patients and families may demand that he act against his judgment.

Carried to the extreme, the doctor could become the slave of any family - unable to withdraw from the care of a patient for months or years, forced to change IV's and IV settings, to maintain and adjust the ventilator and dialysis settings, or even to maintain the heart-lung assistance device that slows cell death, even after the heart has died.

When so many doctors agree that the demands to use medical technology on a patient is inappropriate, that's not "Futile care theory," no matter how finely some define it. That's the practice of medicine. For the Bishops to back the doctors in the practice of medicine is not "futile care theory," either.

Where are the doctors stepping up to cast doubt on specific decisions and doctors in the cases that have become so celebrated in Texas? We hear rumors, but I don't see action.

Last year, a good man, a skilled and compassionate doctor, ended up treating Andrea Clark's family while doing his best to treat the patient, herself, but his actions were definitely futile, proved to be of no medical benefit. By treating the family's concerns, he enabled them to agree to stop increasing Mrs. Clarke's level of intervention. He showed wisdom in addition to knowledge, skills and judgment. However, my medical skills and judgment wouldn't have allowed me to go so far as to drain the gallbladder as he did.

Religion and zealotry of one sort or another

The National Review has published an editorial by Colleen Carroll Campbell on the resignation of St. Louis' Archbishop Raymond Burke from his position on the board of that city's Children's Hospital foundation. The Archbishop objected to the invitation to the outspoken (and vocal) proponent for abortion and embryonic stem cell research, Cheryl Crow.

Ms. Campbell states the problem well:

Today’s religious leaders increasingly face a double standard when it comes to their public pronouncements: They can say what they want as long as they express politically correct views or stay mum on hot-button social issues. Where secular pundits and celebrities are given free reign to plead their case to the public, religious leaders are derided as theocrats for injecting religiously derived moral principles into political debates. This stifling of religious voices is intended to prevent religious conflicts in the public square. But it also prevents the most fundamental form of deliberation necessary to the functioning of a pluralistic democracy: honest debates about right and wrong, good and evil, truth and falsehood.

However, I would add that the zealotry of some who complain about activism by any and all religious people in any public dispute is near-religious in itself.

A case in point:

The journal, Nature Neuroscience published an unsigned, unattributed essay in the April, 2007 issue, entitled "Shaky arguments against stem cells: Recent attempts to use scientific findings to discredit embryonic stem cell research are distorting the state of the field." (I'm not sure whether this requires registration to view.)

(Amazing, huh, that the editors could afford so much space for their title, but none for their own names?)

The editorial is nothing but a call for all embryonic stem cell research and nothing short of the same, without comment, without restrictions.

In order to illustrate their point, the authors (whoever they are), discuss an essay written to inform the readers of First Things. The authors (whoever they are) state that the content of the article is "correct," but feel it necessary to stress that the journal is a "conservative Roman Catholic magazine" and cite Maureen L. Condic, Ph.D. for "trying to spin science—both its problems and successes—to fit an anti-scientific purpose."

In fact, they seem most offended that Dr. Condic commented at all.

As I wrote the editors, the editorial reflects a deep bias and a "spin" of its own, discrediting their journal and "distorting the state of the field," indeed.

If we knew who these anonymous authors were, perhaps we could ask them why their own position is "right" and the Dr.s' is "wrong." I would also ask them why they insist on bringing religion and politics into the debate, when Dr. Condic so obviously - as they state - avoided both.

End of Life Debate (Emilio, Texas Law)

The debate continues on the end of life decisions and care of the poor child, Emilio Gonzales, at Wesley Smith's blog.

Please take a look at the misunderstandings in the conversation and the fantastic review by "woundedpig," whose comments begin at about the 27th post.

It does appear that the lung collapses were due to atelectasis, rather than pneumothoraces and there were no chest tubes. That doesn't change the facts that no one "refused" Emilio a tracheostomy. It means that he was unstable and not a candidate for the procedure.

There's also links there to the House State Affairs committee hearing of April 25th, if you want to see some of the debate at the Texas Legislature - and some of the people involved. The hearing began in the morning, when Representative Delisi laid out her bill. After a recess for the regular House session, the Committee resumed late that afternoon and ran to 5 AM. I couldn't stay because I had a 6:30 AM meeting in Dallas the next day. But the other testimony is worth some time -- after you read "woundedpig's" comments, though!