Thursday, April 24, 2008

Can Medical Ethics Taken to the Extreme be Detrimental?

I believe it can. Here’s a recent example.

An 18-month old child with a rare and always fatal disease had been on life support in a Texas hospital for five months. The Texas physicians, with the agreement of the hospital ethics committee wanted to discontinue life support because the child had no chance of recovery. His death was imminent and certain. Texas has a Futility Law that provides for a limited time period before the hospital, with the agreement of the ethics committee, can discontinue all but supportive care. His mother wanted life support continued and with the help of others, appealed to the courts to prevent the Texas Futility Law from being activated in this case. The child died before the judge’s final ruling.

Dr. Robert D. Truog, Professor of Medical Ethics and Anesthesia (pediatrics) Harvard Medical School, wrote about this case in a perspective article in the New England Journal of Medicine. (1) In Dr. Troug’s view, since the child was severely neurologically impaired and could not perceive pain, the doctor’s claim that he was having a painful death was not valid. But what about the indignities suffered by this child with feeding tubes, constant IVs, multiple blood tests and the ventilator tube to keep him breathing? The physician’s concern about the dignity of the child’s death was of little concern to Dr. Troug, the child’s mother and others who joined in the legal battle.

These are extremely unfortunate and painful situations that require delicacy and understanding, but I believe, must be addressed with a sense of reality. If, indeed, the total weight of medical knowledge shows that a patient will not benefit from therapy, then providing such therapies because of patient/family demands, means physicians are not to express or develop judgment, but must rather use their skills as technicians at the bidding of others.

There is no doubt that some form of due process should be in place to insure against human misjudgment and provide fairness to the patient/family. But Dr. Troug’s view that the judicial system is the only source of due process is an extreme view that says honesty and fairness is impossible in a medical setting. I share Dr. Troug’s respect for the need to be fair to minority views, but that fairness does not, in my opinion, extend to family desires that are totally inconsistent with the reality of the situation. This is just the sort of situation that would benefit from a nationwide system of appropriate care committees (See my March 1,2008 post about Appropriate Care Committees for more details.) The courts are not the places to decide medical issues.

Dr. Troug’s conclusion that physicians are incapable of dealing kindly but appropriately with end of life situations along with ill-conceived judicial opinions (2), have had a serious negative impact on American medicine. This has led to over 550,000 deaths in ICUs yearly with its overuse of technology and procedures, lack of spirituality at tremendous cost to our society (3).

In my opinion, physicians must learn how to deal fairly with the many difficult and sometimes tragic situations they confront on a daily basis, but cannot relegate conflict to others, especially to the courts. Doctors must learn to use the profession’s ever increasing treatment options wisely for the benefit of their patients and for our society. A family’s demand for treatment does not relieve the physician of responsibility to deliver care within the confines of medical knowledge and with the best interest of the patient at heart.
1. Troug, RD. Tackling Medical Futility in Texas. New England Journal of Medicine 2007;351:1-3 (PMID 17611201)
2. Annas, GJ. Asking the courts to settle standard of emergency care – the case of Baby K. New England Journal of Medicine 1994;330:1542-1545 (PMID 8164726)
3. Angus, DC, Barnato AE, Linde-Zwirble, WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Critical Care Medicine 2004;32:638-643 (PMID 15090940)

8 comments:

hOURTampabay said...

Terri Shindler Schiavo was NOT in a persistent vegetative state. That was the "law of the case", a judicial decision arrived at in the first 20 minutes of the first hearing without the benefit of any medical testimony. Several doctors would later agree she was not PVS, but the media ignored that testimony. Further, she was not on life support. She had a statistical probability of 30 to 50 more years to live. Ms. Schiavo was receiving natural food and natural water delivered by a natural gravity feeding tube. Caregivers secretly fed her soft desserts because they were under court orders not to allow feeding by mouth. The woman was an aware of self human being. Severely brain injured, yes, but she was aware of her own person, able to laugh, cry, and within her limits could form certain words. In the moments before her feeding tube was painfully sliced from her belly, asked to say she wanted to live she answered not once, but twice -- she screamed for her life. An interview, attorney Barbara Weller with John Sipos in the moments before her tube was removed -- http://www.youtube.com/watch?v=-KPCsUBr6X4
One day, a truly independent group of medical and legal experts will conclude that the killing of Terri Schindler Schiavo was homicide. If you want additional information, jsipos@ij.net Thank you. John Sipos.

Zooker's Blog said...

How timely. I was just on vacation with a lifetime pal and physician from California (retired) and we came to the conclusion that the end of life expenditures are a starting place to look at "rationing" care. Numbers that come to mind are 90% of lifetime $$ in the last year or less. I would like to get involved with your cause.

Bethany said...

do you have any book signings scheduled in Kalamazoo? We read the piece in tonight's Gazette, and would love to come and see you!

Doctor Kenneth Fisher said...

Dear John,

Thank you for taking the time to write on my blog; I welcome all input. I applaud your interest in protecting the rights of the disabled and the medically needy.

I base my medical opinion regarding the Terri Schiavo case, in part, on the information found on Wikipedia which has an extensive and, I believe, fair discussion of the entire matter. I believe the evidence that Terri was in a persistent vegetative state is overwhelming despite the protestations of her parents, sibling and some others.
1) Multiple examinations by qualified specialists and protracted video recording supported the finding that her cerebral cortical function was non existent. I believe the findings of the neurologists hired by the parents were biased by their commercial interests.
2) The CAT scan that can be seen in the wikipedia article to my eyes shows severe and irreversible loss of the cerebral cortex.
3) The autopsy findings provide anatomic evidence that the cerebral cortex was irretrievably lost.

Our humanness, consciousness, awareness of sensation and purposeful motor activity all emanate from the cerebral cortex. There is no doubt in my mind that the person Terri Schiavo was irretrievably lost because of anoxic brain injury secondary to her cardiac arrest.

I believe Congress and the medical community at large missed a wonderful opportunity to help the
general public understand the consequences of the irreversible loss of the cerebral cortex. I had hoped that Congress would have had public hearings from noted experts to explain these medical facts to the American people. Unfortunately this did not happen.

Again, I applaud your concern for the disabled and medically needy, but feel you weaken your case by your stance on the Terri Schiavo matter.

Doctor Kenneth Fisher said...
This comment has been removed by the author.
Doctor Kenneth Fisher said...

Zooker,

Thank you for your support. Please tell your fiends to visit my blog, read the essays, order the book with the link to Amazon.Com and to download the introductory letter and proposed admission form to their Congressperson and Senators. This is a crucial first step to get Congress to focus on the problem and create a legal framework by which we can address inappropriate care. (estimated to be about six hundred billion dollars per year) and thus afford universal coverage while not hurting our economy.

Please note that my philosophy is not to ration care but rather to avoid inappropriate care so that rationing will not be needed.

Bethany,

Thank you for your kind note. Presently I do not have a book signing scheduled in Kalamazoo; however, I will go to Kazoo books tomorrow and tell them that there is interest in another book signing in town. I believe it would help if you would also go to Kazoo books and tell them you are interested in me doing a book signing in their store.

the crucible said...

Dr. Fischer,

While I agree with your basic thesis, after reading your interview in the Gazette (but not your book, yet), I would like to point out that in some cases, the physicians at hand do not know enough about, say, a rare disease to bring their great experience to bear on a balanced judgement.

While I have compassion for and understanding of these professionals and their experience, they too often do come to the bedside from a place of sobriety (understadably colored by grim experience) rather than hope.

I base this opinion on my recent experience with my then newborn son, last summer. His incredibly rare disease (microvillous inclusion disease) diagnosis was followed with a recommendation to pursue multivisceral transplant. When we suggested the use of Omegaven (omega-3s instead of our current standard of care omega 6s), they pooh-poohed the suggestion and told us to meet with the Palliative Care Team if we were not going to take their suggestion of transplant.

I'm happy to say that we no longer see those doctors, that my son's jaundice disappeared, and that the Omegaven has been the source of this longevity. He is not only alive, but with a great quality of life. On the other hand, the baby that they had sent for tranplant died this year at 4 years old after tx at 8 months, and over 30 months in the hospital. But that is not without patient/physician conflict.

I wonder what your position is on rare diseases?

Best regards,
Kinn Chan de Velarde

Doctor Kenneth Fisher said...

Thank you for making the effort of contributing to my blog. I believe you raise an important issue.

There is no doubt in my mind that you made the correct decision. From a medical point of view, I believe in trying the least complicated therapy first and only if unsuccessful move on to more complex ones. Presently and probably for the foreseeable future medical knowledge is incomplete for all diseases – common ones and more so for those that are rare. We need humility as we approach each problem. Therefore, as demonstrated by your son, the best solution is the simplest that deals successfully with the problem.

I emphasize in my book that patients/families have the right to refuse any or all therapies and that the medical team should not react negatively because of this refusal. However, I believe that the opposite is not true. The right of refusal does not mean the right to demand therapies that because of the complexities of the patient’s medical situation will be of no benefit.

Lastly I hope your son continues to do well and I wish you the very best.