Former Senator Explains Consequences of Bill Language

Former Senator from Tennessee, Fred Thompson, explains the consequences of the language concerning end of life care that is included in the current version of House Bill 3200.

I do read the language as making the counseling mandatory, although not necessarily a demand that doctors (or nurses, if they are the "primary care providers") tell a patient that they must refuse or be willing to withdraw medical intervention at the end of life.

Of course, there's the pesky problem that no one has written the approved counseling language or produced the approved documents, yet. That will be done by "the Secretary," if and when the Bill passes with this provision still in place.

Here's what I think happened: the Committee or staffer who wrote that section thought that offering payment for what was mandated in the "Stimulus bill" earlier this year would be a politically advantageous move.

However, since no one knows what will actually be required by the Secretary of Health and Human Services, and there is no note as to which doctors will be responsible to counsel patients, I forsee a repeat of the confidentiality snafus and stumbling blocks that happened after the "HIPAA" became law. Remember when every single doctor and pharmacy had each patient sign a disclaimer, no one knew who could talk to whom, and a whole lot of money, time and energy was wasted making sure that you knew that the provider knew that the government wanted us to keep your medical information private - at least from everyone except the government agencies who demanded documentation, ICD-9 and CPT codes and qualifiers?

Here's Senator Thompson's essay:

FRED THOMPSON: Phantom pains at The Post

Fred D. Thompson

A Page One article in Saturday's Washington Post blaring the headline "Talk Radio Campaign Frightening Seniors" states, "A campaign on conservative talk radio ... has sparked fear among senior citizens that the health care bill moving through Congress will lead to end-of-life 'rationing' and even 'euthanasia,' " and that the bill has been described as "guiding you in how to die."

The story's continuation inside -- under the headline "Conservatives Have Seniors Fearing 'Euthanasia' as Part of Reform" says that, like arguments about abortion coverage, this has become a distraction to the president's broader health care agenda.

The reader looking for examples of this "talk show" campaign will be disappointed. Not one talk-radio host is quoted, and no specific radio show is mentioned (though The Post does quote an interview done on my radio show, without telling the reader the interview was done on a radio show). However, the article does make use of information supplied by off-the-record "Democratic strategists." One is free to conclude for oneself who has launched a "campaign."

It does seem that the words attributed to unnamed conservative culprits are fairly mild compared to the hysteria coming out of left-wing Web sites and blogs. My favorite is the one found on the Huffington Post, where Republicans are accused of saying that granny would be shot in her wheelchair under a provision in the Obama-Pelosi-Waxman health care bill.

Let's discuss whether these deranged seniors are being misled by people who actually may have read the bill. (Presumably this offense cannot be laid at the feet of their representatives of Congress.) Although I have never said anything like the things attributed to radio talk hosts, the article states that "the attacks on talk radio began when Betsy McCaughey ... told former senator Fred D. Thompson (R-Tenn.) that mandatory counseling sessions with Medicare beneficiaries would 'tell them how to end their life sooner' and would teach the elderly 'how to decline nutrition -- and cut your life short.' "

The basic position of the bill's proponents seems to be that these consultations are totally voluntary, that seniors should have the benefit of such end-of-life consultations and that the consultation provision is nothing more than to get doctors reimbursed when a consultation occurs at the patient's request. The "let's get the doctor paid" rationale was swallowed whole by The Post's writer, Ceci Connolly.

Those concerned by this provision believe it to be mandatory and wonder why the government is involving itself in the doctor-patient relationship and with end-of-life decisions.

Section 1233 of the bill, having to do with Medicare, describes the "advanced care planning consultation" as between the individual (a spouse and next of kin are not mentioned) and a "practitioner," described as a physician, a nurse practitioner or a physician's assistant. (It does not appear that it is a requirement that the physician in question be the patient's physician of record.)

In legislation, an issue as to whether an action is mandatory or not can be resolved quickly by a glance at the statute, which will state that (in this case) the consultation either "shall" be taken or "may" be taken. Remarkably, neither phrase is used in the statute in question.

Rather, the statute just describes what a consultation is and then strictly prescribes in mandatory language what must be included in the consultation as well as what may be included. For example, in Paragraph 4, a consultation "may include the formulation of an order regarding life-sustaining treatment" and may include an order for "the use of artificially administered nutrition and hydration."

The drafters of the provision were either sloppy, befitting a situation in which a complicated, 1,000-plus-page bill, controlling one-sixth of the economy, is rushed through the legislative process. Or it might be that the drafters desired an intentionally vague statute, knowing administration officials would be drafting regulations for the implementation of the bill after it passed.

As it stands, there is more than ample reason to believe the provision was meant to be mandatory with regard to the practitioners. Otherwise, why have the provision in the bill at all? If getting the doctors paid for a voluntary consultation really was the provision's intent, an amendment of two or three lines would have fixed it. As it is, it is two lines in a five-page provision full of specific instructions about what doctors, nurses or doctor's aides must explain to the patients.

Seniors are reminded daily by the media that Medicare is going broke, that the country must cut Medicare costs and that the last days of life are by far the most expensive. Now they are being told by the administration -- one that has been less than transparent on this bill and a host of other issues -- that this bill will cut Medicare costs. They are learning that they are "coincidentally" being asked about end-of-life issues at the government's behest, perhaps by a stranger who is receiving Medicare reimbursement payments. How long do you think it will take a Medicare patient to figure out which decisions will cost the government money and which will save the government money?

This is no reflection on medical professionals. They clearly are being put in a position they neither have asked for nor are completely qualified for. However, I am gratified that a president who can matter-of-factly accuse doctors of routinely removing a child's tonsils solely for financial gain has newfound trust in a doctor's or some hospital employee's ability to consult and even help draw up legal documents regarding end-of-life issues.

If this is all just a misunderstanding about whether this provision is mandatory or not, it can be resolved readily. Let's see if the supporters of the provision are willing to add language to the bill making it clear that there is no requirement that these consultations take place. Better still, they should drop this provision from the bill and let patients discuss these matters with their families, their clergy, lawyers who have expertise in living wills and powers of attorney, or whomever else they desire.

So is this a conspiracy to kill off granny? No. Will seniors be forced to make decisions they don't want to make? No. But will "practitioners" be encouraged to have end-of-life discussions that include when it might be best for patients to allow their life to end earlier than it has to? Of course. And seniors have a right to be satisfied that there is not, at the heart of this process, undo consideration given to cost-cutting.

In the end, it depends on how comfortable one is with having the government in the middle of this process. That is what this discussion is really all about.

Fred D. Thompson, a former Tennessee Republican senator, hosts a nationally syndicated radio show (www.fredthompsonshow.com).

Goodbye Medicare, hello County Clinic

Where is the outrage over the destruction of (what is left of) Medicare and the debt we owe to veterans? I'm afraid that we're not talking about "Medicare for all," or even "Medicaid for all." We're talking about County Clinic for all.

For a look at the proposed cuts in cost for Medicare, take a look a this table.

Consider that "reduce costs for re-admissions" and the "bundling" of hospital and outpatient costs after a hospitalization.

That means that Medicare will only pay a flat fee to the hospital for any hospitalization and follow up care after the hospitalization and will not pay if the patient has to be readmitted for complications or a new illness within a certain period of time. Patients would not be able to return to their family doctor for follow up care, unless the doctor works for the hospital. And there would be a lot of pressure to keep patients out of the hospital.

People who "cost" Medicare the most money would be encouraged to forgo care. I predict a huge push for hospice care for anyone with complicated, chronic diseases. (Or, possibly, a back-alley, underground medical care system for cash and barter. Wonder how long that will be legal?)

The AMANews reports that coordination of care doesn't lower costs to Medicare, only 2 out of 15 of the model centers cut patients' days in the hospital, and that the coordination is burdensome for small and solo practices. For every 100 patients, we interact with 99 other doctors in other practices. (I knew it was a lot.) (I don't think any of these links require subscription, let me know if there's a problem.)

This is my favorite part from that article:

"It doesn't matter if you back up a truck to their offices and drop off bundles of money," Dr. Norman said. "They don't have the time, resources or expertise right now to put this all in place."

Speaking of "bundles of money," the stimulus has a chunk to support Community Health Centers, as reported by Reuters' Maggie Fox. Will these centers really be open longer hours, as advertised, and will they continue to mandate the hiring of mid-levels (Nurse Practitioners or Physician Assistants), rather than allowing the hiring of physicians with the grants, as currently the case for other Federally funded clinics?

The budget includes plans to pay for the 667 Billion dollar health care for all by cutting payments to “providers” (including doctors and hospitals, pharmacists and wheel chair companies), according to the Wall Street Journal. We're already scheduled to have that automatic “Sustainable Growth Rate” 20% cut in Medicare payments to doctors, next year. Want to bet that the cut won't go through and/or won't be considered part of the "savings"? (And mesh with the President’s plans to cut the deficit.)

That WSJ and the LATimes articles also mention a “public” health care plan, and possible new taxes (on the employer’s portion of insurance payments or a new income tax).

Speaking of which, the Massachusetts mandatory health insurance trial isn’t working - even to make sure that people have insurance or are able to see their doctor in a timely manner - according to the Boston Globe The solution? That old United States National Health Insurance Act, paid for by "a modest progressive tax."

Obama moves to overturn Conscience rules

For a couple of years, LifeEthics has covered the conscience of physicians and what it would mean if a doctor, nurse or hospital were to be forced to go against their consciences. My review is here.

From the LA Times, we learn that President Obama plans to rescind the ruling clarifying conscience laws in force in the US today:

Conscience' rule on abortions may be overturned
The Obama administration wants to clarify a Bush policy that lets healthcare workers deny services because of moral beliefs.
By Noam N. Levey
February 27, 2009
Reporting from Washington -- Taking another step into the abortion debate, the Obama administration today will move to rescind a controversial rule that allows healthcare workers to deny abortion counseling or other family planning services if doing so would violate their moral beliefs, according to administration officials.

The rollback of the so-called conscience rule comes just two months after the Bush administration announced it late last year in one of its final policy initiatives.

Inevitably, no matter what they say, the outcome will be to further politicize abortion and to force doctors to perform abortions and assisted suicide, force Catholic hospitals to allow abortions and sterilizations and - inevitably - physician assisted suicide.

Last month without official ceremony, Obama overturned a controversial ban on U.S. funding for international aid groups that provide abortion services.

The move by the Department of Health and Human Services to throw out the conscience rule is being made equally quietly as most of Washington focuses on the president's blockbuster budget plan.

On Thursday officials stressed that before the administration finalizes the rollback, a standard 30-day comment period seeks input from people across the ideological spectrum.

"We believe that this is a complex issue that requires a thoughtful process where all voices can be heard," said one official, who was not authorized to speak on the record about the policy change.

The officials said the administration would consider drafting a new rule to clarify what healthcare workers could reasonably refuse to do for their patients.

For more than 30 years, federal law has allowed doctors and nurses to decline to provide abortion services as a matter of conscience, a protection that is not subject to rule making.

In promulgating the rule last year, then-Health and Human Services Secretary Mike Leavitt said it was necessary to address discrimination in the medical field.

Conscience: more than abortion

Last month, a judge in Montana ruled that patients have the right to a doctor's assistance in their intentional death by suicide. Baroness Warnock argues that doctors who will not kill their patients on demand are "wicked." The States of Washington and Oregon already have legalized "Aide in Dying." Is it now my duty to inform my patients on Hospice that they have a "right" to "safe(?) and legal" death by prescription?

Here is part of a poignant Letter to the Editor from an Internal Medicine doc in Oregon:

I was caring for a 76-year-old man who came in with a sore on his arm.

The sore was ultimately diagnosed as a malignant melanoma, and I referred him to two cancer specialists for evaluation and therapy.

I had known this patient and his wife for more than a decade. He was an avid hiker, a popular hobby here in Oregon. As he went through his therapy, he became less able to do this activity, becoming depressed, which was documented in his chart.

During this time, my patient expressed a wish for doctor-assisted suicide to one of the cancer specialists.

Rather than taking the time and effort to address the question of depression, or ask me to talk with him as his primary care physician and as someone who knew him, the specialist called me and asked me to be the "second opinion" for his suicide.

She told me that barbiturate overdoses "work very well" for patients like this, and that she had done this many times before.

I told her that assisted suicide was not appropriate for this patient and that I did NOT concur.

I was very concerned about my patient's mental state, and I told her that addressing his underlying issues would be better than simply giving him a lethal prescription.

Unfortunately, my concerns were ignored, and approximately two weeks later my patient was dead from an overdose prescribed by this doctor.

His death certificate, filled out by this doctor, listed the cause of death as melanoma.

The public record is not accurate.

My patient did not die from his cancer, but at the hands of a once-trusted colleague.

This experience has affected me, my practice, and my understanding of what it means to be a physician.

Baroness Warnock: doctors who won't kill are wicked.

Baroness Warnock took part in a debate in Belfast, Ireland on January 5, 2008.

According to a Belfast news report, the Baroness said that doctors who will not kill their patients are "genuinely wicked."

Baroness Warnock, who last year caused worldwide controversy when she said that some dementia patients had a "duty" to seek death, said last night: "I think that people should be able to beseech their doctors, nurses to end their life when it is no longer worth living (in the patient's eyes]."

Speaking of terminally ill patients who, while in good health, have made a written request to be killed when they reach a certain point in their illness, she said: "There are doctors, we know, who don't pay any attention (to those wishes to die].

"But that seems to me a genuinely wicked thing to do – to disregard what somebody had quite explicitly said, that he wants to die – not to be resuscitated in certain circumstances and in certain circumstances to be helped to commit suicide.

"I believe that if someone is diagnosed as having the beginnings of Alzheimer's or dementia, at that stage it is a positive duty that doctors should talk to them about what will happen when the moment comes where they reach steep decline."

Speaking of the impact that medicine-prolonged life has had, she said: "The consequence (of living longer] is financial, but much more importantly, I think of the number of people who end their life demented, unable to recognise family, unable do anything for themselves.

"They can be kept alive and are kept alive, but the question has to be: What is the point of the life at the last stages of Alzheimer's or dementia?"

The point of any life is one of those big questions, isn't it?

Clarification on Brain Death

The news reports about the Pope's recent cautionary remarks on the determination of death include quotes from a Vatican newspaper describing false assumptions about the use of brain death as the definition of death.

The whole brain criteria for brain death is not based on the cessation of function of the brain. Instead, it is based on our knowledge that when the upper and lower brain have died, degeneration of the body will always follow, at least with current medical technology. The cascade of lower brain death always leads to failure of cardiac and respiratory function without medical intervention. We are able to maintain the heart beat and artificially inflate the lungs for longer and longer periods each year, thanks in part to better and better medications to support blood pressure and kidney function. However, with the serial verification of lower brain death, there has never been renewed function of the brain stem. Brain cells die in 6-7 minutes after being denied blood flow. The rest of the body's cells will die when the brain does not drive the respiratory reflex or send the nerve signal to the heart to beat.

(In the case that we do hear of a man who came back to life after being declared brain dead, it does not appear that the first test was repeated.

The Pope's remarks were given at a conference on organ donation, held at the Vatican by the Pontifical Academy for Life, the International Federation of Catholic Medical Associations, and the Italian National Transplant Center.

Another end of life dispute (Motl Brody)

Doctors at a hospital in the District of Columbia have determined that a 12 year old boy, Motl Brody, has no upper or lower brain activity. He was declared dead by legal criteria November 4. Here's the Washington Post article on the case.

By legal and medical criteria, the boy died last week.

The dilemma is that he was placed on a ventilator and receiving drugs to stimulate his heart beat before the determination that he met the criteria for legal death in the District. His parents are Hasidic, Orthodox Jews and have legally objected to turning off the ventilator or stopping the medications, saying that their religion does not recognize anything other than cessation of breathing as "death." The case is now in court.

Perhaps the parents would consider discontinuing the addition of new doses of medications when the current ones run out? In this way, there is no intentional act of stopping the heart, and there would be no intervention if the heart continued to beat.

One way to look at the case is that it's never ethical to force doctors to act against their medical judgment as to what is in the patient's best interest. However, this patient is now dead. What do we owe the parents of a dead child?

The child's doctors have said, '"Ethically, there is no appropriate treatment except removal of the ventilator and of the drugs."'

However, it is considered ethical to continue cardiopulmonary support in order to preserve organs for harvest and transport. So, the organ support itself is not unethical. Is support for the body ethical in order to meet the religious requirements of the deceased patient's family?

Finally, who is responsible for carrying out acts that the doctor believes is not in the medical best interest of the patient? And for how long?

How not to promote organ donation

Julian Savulescu, the British ethicist who opined that religious doctors should shut up and perform, is back.

This time he's advocating the donation of organs from people who are not dead or dying, but who have "suffered such severe injury that they would be permanently unconscious, like Terry Schiavo, who would be allowed to die anyway by removal of their medical treatment."

Hat tip to BioEdge.com

New Bioedge edition available

The weekly newsletter, Bioedge, from the land down under is one of the better bioethics/biotechnology on-line newsletters.

Readers who consider the pro-life movement mainly as a US political matter, may be surprised by the existence of Bioedge, since it is pro-life. The publishers' aim is to:

* to promote evidence-based ethics in medicine
* to promote compassion in medical care
* to highlight the fact that medical excellence is not possible without ethical principles
* to provide high-quality up-to-date information and commentary on bioethics
* to facilitate the participation of health professionals in policy debates on bioethics

This week's headlines include

"Stem cell scientists seek to shed snake oil image"

"California euthanasia lobby scores victory"

"Nature attacks ‘human dignity’"

"Surprise on operating table"

"US Catholic bishops reject embryonic stem cell research"

Brain Death

Wesley Smith is blogging around the Web on the sad death of a 50 year old Atlanta man whose family took the doctors and hospital to court. Wesley rightly notes the poor communication.

The reporter is indeed a very bad communicator. I wonder about the reliability of the whole story because of the reporter's description of the patient: "he was brain dead and being kept alive by life support." While I can believe that the docs used "life support," the reporter goes on to say that the patient "passed away" when the ventilator was stopped and used the phrase, "pull the plug."

"Brain dead" patients are not alive and they're not on "life support." The doctors are using "artificial support." for the organs on a dead patient. (See this British Journal of Medicine article and comments, below.) Just as we support the body while waiting for the arrangements for organ donation (or for the birth of a child of a brain dead mother), it is customary to notify the family and give them a chance to "say goodbye" before discontinuing the ventilator and medications supporting the

Way down at the bottom, the article actually says,

"doctors told the family the stroke caused massive bleeding in Donald's brain. Four different physicians examined Fennell and his brain scans and determined his brain, including the brain stem which controls basic bodily functions like breathing, had ceased to function, according to court and patient records."

However, the problem started with the nurse who called security to have the family removed from the hospital because Mr. Fennell's 3 sons,

21, 20 and 18-year-old college football players— cried loudly and shouted "No!" when told their father was brain dead. After that, she said, security guards were posted at the door whenever they visited."

It's hard to talk to people who are shouting, but it's harder to talk to them when they've been kicked out of the building.

I'm trying to get my head around the medico-legal problem of delaying the declaration of death by the docs, scheduling a time to turn off the ventilator, and the comment about the machines being broken.

However, people don't live by laws alone. We often act from our hearts.

The New England Journal of Medicine published a review article describing the determination of death by neurological criteria in 2001. And here's an excellent (free) article from 2002, from the British Journal of Medicine that actually calls the ventilator and cardiac support "artificial support" and includes the ethical caveat that ""No physician engaged in euthanasia or medically assisted suicide should be responsible for diagnosing brain death.

Not coincidentally, the subject of yesterday's Secondhand Smoke was the case of an Orthodox Jewish man in Canada. The gentleman is on a ventilator and suffering from the effects of heart failure, pulmonary hypertension and renal failure. Three doctors, including one selected by the family have determined that he is dying and, even without the consent of the patient or the family, decided to remove the ventilator. The family has taken the doctors to court to prevent the removal of the ventilator on religious grounds.

One of the family's lawyers actually said that removing the ventilator is the same thing as smothering the patient with a pillow, and that (of the docs and nurses who must maintain the ventilator and adjust its settings):

"To do what they are suggesting would involve a physical act," he said. "You have to touch him, you have to remove the tubes. My reading of the law is that without consent ... they can't do it. I submit that is assault and battery."

(According to newspaper reports, the docs plan to remove the feeding tube, also. But that's not relevant, here, since Mr. Golubchuk will die within minutes if he is unable to breathe on his own off the ventilator. If any of the docs are making a fuss about the feeding tube, they are not very wise, since doctors and nurses aren't needed to maintain or monitor the feedings.)

An article from the Winnipeg newspaper on December 11 says that

"An orthodox rabbi consulted by the family quotes from guidelines on Jewish medical care that say it is imperative for doctors to prolong life, even if the patient is "suffering greatly" and asks for care to stop."

It's my understanding that Orthodox law forbids disconnecting the machine until the heart stops, even though there has been talk of a machine in use in Israel to randomly turn off ventilators so that the people won't have to. But I've never read that the Orthodox go so far as to demand that suffering be ignored.

In fact, withholding care under Orthodox Jewish law is acceptable. See the discussion about flickering candles, here. Here's a very well written review of Orthodox Jewish law on end of life, from the Virtual Mentor, the AMA ethics journal.

Do you suppose the family really believes that they should force other people to cause suffering? The family lawyer does point us to the ethics of intent and consequence of "a physical act." While the family may have the right to continue their father's suffering and to prevent the removal of the ventilator they don't have the right to force any particular doctor, nurse, or tech to act to violate their own conscience by adjusting, cleaning, and monitoring the ventilator.

Surely there's an Orthodox doc in the area who is willing to care for Mr Goubchuk and his family.

Wesley Smith on Toronto Conference on End of Life

Wesley's report is at his blog, Secondhand Smoke.

The medical interventional suicide or "Physician Assisted Suicide" (PAS) offers a false sense of control to people who are actually the healthiest of the patients who know that they are nearing the end of life.

It's false because before legal medical regulations can be used to "help" terminal patients to control the "time and manner of their death," the laws are actually being sold to voters who aren't sick, who are encouraged to think "there but for the grace of God, go I." Instead of giving dignity to patients in pain, talking about the indignity of having others care for our bodies and the horrors of uncontrollable pain increases the revulsion toward physical weakness and dependency.

Mr. Smith says that in Toronto ( as at the Houston Holocaust Museum last month), he focused the bulk of his talk on "Futile Care Theory."

Calling all cases of withdrawal of care "Futile Care Theory" and eugenics is also false. It denies any acknowledgment that doctors act on their conscience. By denying that doctors and medical ethics committees -a group of peers and lay people, clergy, and ethicists - can be acting in good conscience, even when it goes against the wishes of surrogates and families condemns us all. If we can't trust these people, how can we trust a judge or a jury to act in good conscience?

I hope everyone reads what Wesley says about another speaker, Ms. Frazee:

She told the audience that there are two general veins of opposition to assisted suicide; political and spiritual, with people in each camp disagreeing with each other on other issues. She suggested that the best way to work together would be to develop a philosophical approach that would include all and permit people to also pursue other agendas when not working against assisted suicide.

Too often, the only common ground is the hatred of the control that doctors seem to have. Suicide proponents and "futile care" activists declare doctors the bad guys who diagnose and couldn't cure, who bring the bad news of unavoidable death and who won't "do everything."

As I reported after Wesley spoke at the Houston Holocaust Museum, the risk is to squeeze doctors between two extremes.

I suggest that the doctrine of double effect can help us make the distinction. Doctors may not act with the intended result of death, but we know that some of our actions may cause death, unintentionally. In all cases, the intention and the act must be ethical, but sometimes - as when we poison the body with chemotherapy or radiation to fight cancers - only medical knowledge and experience can inform our conscience.

Laws and the legal process are a poor substitute for medical ethics and will result in the death of those same ethics.

The logical result is an end to all laws protecting the conscience of doctors, pharmacists, and nurses, in favor of laws leading to court and cookbook algorithms. The practice of medicine won't be a profession - much less a calling - with peer review, judgment and conscientious men and women. It will be a job done by people capable of following orders, even when it goes against their best medical and moral judgment.

Who will you trust? Lawyers and judges like Blackmun and Greer? Juries who live in a society that forces medical professionals to act in a way they believe is wrong? Legislatures and referendums that give us Oregon's assisted suicide? Or doctors and pharmacists who are prescribing and dispensing the potassium, heart stimulants or blood pressure control in the IV, adjusting the ventilator, dialysis machine and the dosage of pain meds under the watchful eye of nurses and the rest of their community?

Emotional Debate on "Physician Assisted Suicide"

On Tuesday night, November 26th, I drove to Houston to hear Wesley J. Smith, debate Physician Assisted Suicide (PAS) with Kathryn Tucker, the Director of Legal Services for Compassion & Choices, which was once the old Hemlock Society and then Compassion in Dying. Mr. Smith is the author of The Culture of Death and Forced Exit: Euthanasia, Assisted Suicide, and the New Duty to Die. The only biographical data I can find on Ms.Tucker is this pdf.

The Holocaust Museum Houston has teamed up with the University of Texas Health Science Center at Houston to present the Dr. Michael E. DeBakey Medical Ethics Lecture Series, called ""Medical Ethics and the Holocaust: How Healing Becomes Killing--Eugenics, Euthanasia and Extermination."

From the first, opening night, presentation featuring the-soon-to-be-unpopular James Watson and two other Nobel Laureates, it seems that we are being exposed to an ethics lab, rather than a history and theoretical series. The speakers the first night, including a doctor, Eric Kandel, M.D., 2000 Nobel Laureate, Medicine or Physiology, who was a child in Vienna on Krystallnacht before his family escaped to the US, told us not to worry about research on human embryos as long as the parents give "informed consent." Ironically, after descriptions of the build up to the Holocaust, Dr. Kandel reassured us that that we would gradually get accustomed to embryonic stem cell research.

I could tell that Mr. Smith and Ms. Tucker were irritated with each other during the program. In her introduction, Ms. Tucker referred to an earlier debate that had taken place that day when, as Wesley later told us, "it got angry." I got the idea that the moderator, Dr.Sheldon Rubenfeld, was slightly testy, although he did a good job moderating the questions, as always.

Ms. Tucker' s history of redefining, renaming, and litigating did not reassure me.

She was the lawyer in the case of a family suing a doctor for failing to give their loved one enough medicine to control pain at the end of his life and has fought laws against PAS for 10 years. Ms. Tucker misrepresented "terminal sedation," as though it is always intended to lead to death, rather than "deliberately inducing and maintaining deep sleep but not deliberately causing death in very specific circumstances." It was a surprise to hear Ms. Tucker warn against "back alley deaths" although it turns out that it wasn't the first time I'd heard the term. She frequently used the word, "choice," comparing the patient's choice at the end of life with a woman's right to "Reproductive Choice."

The silliest part of the evening - we were discussing death, after all - was when Ms. Tucker chided Mr. Smith for using the wrong terminology, "Physician Assisted Suicide." She showed us the recently revised policy statements of the American Medical Women's Association and the American Public Health Association. Because these two second tier (that's a word I learned from John Gearhart while attending the ASBH conference this year) organizations revised their own terminology to avoid the "emotionally charged" nature of certain words within the last year, Ms. Tucker shamed Mr. Smith for using the American Medical Association's terminology and legal term instead of calling the act "Aid in Dying."

Mr. Smith pointed more clearly to the problem of emotions when he remarked that it is often acknowledged in these debates that "existential pain," or the emotional component of pain, may be worse than physical pain.

No matter what we call it, death is always going to be an emotionally charged subject and is rarely dignified or controlled. For one thing, the body loses control of the bowels and bladder at death, as well as everything else. The questions from the audience were examples of people who approach the subject of end of life care from a strictly emotional viewpoint, rather than thinking it through to its logical consequences. The emotion is getting stronger as technology introduces more and more variables.

However, when we are discussing Medicine and the death of the body as well as of the mind and spirit, we should confine our conversations to the physical consequences. To be trite: When you're dead, you're dead.

There is no legal question as to whether "Assisting" or "Aiding" death is different from withdrawing care. We don't pinch the patient's nose or remove the oxygen from the room when we withhold or withdraw a ventilator. Physician Assisted Death, in contrast, is an irrevocable interventional act against the living processes of the body using State regulated medical knowledge and medicines, and should be treated as the violation of medical ethics that it is. The history of Western medicine, at least between Hippocrates and Roe, has always condemned intentional use of medicine to positively end the life of the body.

Mr. Smith and I have had several discussions about the ethics at the end of life, especially the Texas Advance Directive Act, which he refers to as the "Futile Care Act." We agree that doctors should never intend to cause death but that they may withhold or withdraw intervention at the request of the patient. We disagree, though, about whether a doctor may refuse to intervene because our best medical judgment is that the intervention will cause increasing damage to the body and prolong death.

I found myself, a Family Physician who cares for people at all stages of life, theoretically squeezed between two legal pressures, one law to force me to act with the purpose of killing a patient and another that would force me to act even though my medical judgment is that the intervention caused harm. Several people from the audience also advocated for legal consequences for doctors who failed to follow patients' end of life wishes by prolonging their lives.

To be honest, if I had to "choose" between the two, I would choose against Ms. Tucker's extreme, which would leave me with Mr. Smith's. I could live with that.

However, I hope that society will teach doctors to never take life while expecting the profession to assist one another in determining when medical intervention causes more bodily harm than healing, when a patient's bodily processes are breaking down faster than we can heal or maintain them.

(Edited 11/20/07 for grammar and order - BBN)

Wesley Smith reviews Physician Assisted "Suicide"

Bioethics.com, the blog of the Center for Bioethics and Human Dignity published Wesley Smith's excellent review of a British report on so-called "Physician Assisted Suicide."

PAS is not medicine in any sense of the word. Medicine, at the very least involves the intention of bringing health to the body and relief from unpleasant symptoms. It can never mean killing. We don't end suffering by ending the patient.

It's worth your time to read the excerpts.

Pallimed (a blog on palliative care) on the cadaver

I stumbled on the blog, Pallimed, while chasing links last week. Today, I was able to read some of the posts. The blog is owned by a doctor and discusses the various elements of Hospice and Palliative medicine.

Read this post for a beautiful excerpt of a statement by a Mr. Thomas Lynch while testifying to the President's Bioethics Council on the way we humans regard the bodies of our loved ones after death.

NEJM comments on Texas "futile care"

The New England Journal of Medicine has a "Perspective" article commenting on the Emilio Gonzales case in Austin, Texas It's available free online, and there's an audio interview with the author.

The comments are very specific on the ethics of the case, and the author does a good job of outlining the Texas Advance Directive law, the various reasons given by the doctors who refuse to carry out the surrogates' wishes in these sorts of cases, and some of the objections to the ethics committees that decide whether or not the doctor's refusal to follow the surrogate's wishes is ethically appropriate. There's also a link to another free article that details findings about the "burnout" of ICU nurses.

"Duty to Die" (A Bioethics "Target" if there ever was one)

If the person has lost her moral agency/personhood as I argue, then the person who deserved reward is no longer present to receive it. It is the new moral entity, having done nothing, that receives the reward for what someone else did.

Seriously! "Someone else?"


Yesterday, I discussed the first of two "Target Articles" in this month's American Journal of Bioethics. The second Target Article, "A Kantian Moral Duty for the Soon-to-be Demented to Commit Suicide" by Dennis R. Cooley,Ph.D, seems a good demonstration of what happens when elitist minds forgo ethical boundaries in order to provoke discussion.

Cooley bases his essay on the discussion by Kant of personhood, moral agents, and a duty to one's life and self as an end in itself:

Kantian arguments for morally obligatory suicide are
extremely rare. Many believe that Kant thought suicide
was absolutely prohibited conduct, mostly on the grounds
that no agent could consistently will the generalized form
of any suicide maxim based on self-love as a law of nature.
Therefore, according to this interpretation, Kant would
never require someone to kill herself for any reason. However,
there is a plausible interpretation of Kant’s views
that states, under certain conditions, not only is the person
permitted to kill herself; she is required to do so
as a duty to herself qua moral agent. In situations in
which the agent cannot keep both her physical and moral
lives, killing her body preserves her moral life and dignity
as a person. I will first develop the Kantian suicide
duty to the self and then focus on why it pertains to
dementia patients before they lose their moral status as
persons.
...the example most closely related to dementia patients’
loss of moral agency is that of a man bitten by a rabid dog.
As in the case of the patients, the ill man is not responsible
for becoming ill. However, even though he is innocent
of any wrongdoing related to the illness, Kant states that
the man has a duty to take “his life lest he harm others as
well in his madness” (Kant 1797 [1996], 178). There are only
two choices—each of which is bad—open to the rabid individual:
suicide and madness/loss of personhood. For the
latter, the agent not only loses his humanity by becoming
the physical equivalent of a rabid dog, he poses a threat to
others, which in turn could cause them to lose their humanity
if they are also infected. Suicide, on the other hand, is a
duty he has to himself as a being with human dignity. Although
it is likely to cause harm to others due to the loss of
the individual, if performed with the right mental states and
reasons, the taking of his physical life preserves his moral
agency. He chooses to remain a person, instead of allowing
himself to be degraded by having a moral status lower than
that of a rabid dog.

The good news is that all of the Open Peer Comments object (with one, Ackerman, calling Cooley "elitist"), and it appears that Cooley, himself, believes that he only wrote the essay to provoke discussion. In his "Reply" to the Peer Comments, Cooley (who teaches philosophy and ethics at the North Dakota State University) explains his purpose behind writing the essay, as well as implying that he doesn't accept Kant's assertions:

I knew when writing “A Kantian Moral Duty for the Soon to Be Demented to Commit Suicide” that it would cause a great deal of consternation too (sic) many. First, my interpretation of Kant was heavily influenced by Korsgaard’s double-level theory so well explicated in her “The Right to Lie: Kant on Dealing with Evil (1998).” Second, and most importantly, any challenge to central beliefs on morality, especially when it involves vulnerable populations, always will have this effect. However, I take Mill seriously when he states that:

the only way in which a human being can make some approach to knowing the whole of a subject, is by hearing what can be said about it by persons of every variety of opinion, and studying all modes in which it can be looked at by every character of mind (Mill [1972], 88).

The goal is to understand what others think and argue, and then incorporate the useful parts into a fuller understanding of death duties.

......The position I consider only applies to people when they have dementia causing disease and their full self-hood with its inherent duties to themselves. The need now is to discuss the issue until some practical solutions that respects all those affected are found.

Actually, no, Dr. Cooley, we have no such need.

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.

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.

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.

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.

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!

Judge rules to restrain hospital on Emilio Gonzales

I'm very glad that the judge in Austin has ruled that Children's Hospital can't remove him at this time from the ventilator and that he has named a guardian ad litum, to look at the evidence from the baby's best interests.

The Austin News 8 TV news also tells us that Emilio's mother and her lawyers have another doctor who will step in to evaluate his condition and whether he is a candidate for a tracheotomy.

Hopefully, some new voices will bring the two sides together for Emilio. I'm convinced that the doctors and nurses caring for Emilio have been doing their best, saving Emilio's life daily. And I'm sure that his mother is getting through the whole ordeal the best way she knows how.

For more information, you can read the Ethics Committee Report at the North Country Gazette, published in a same March 18th post by June Maxam.

End of life on the internet

LifeNews and Channel 8 TV in Austin, as well as several bloggers are reporting on the denial of the temporary restraining order for Emilio Gonzales in Austin, Texas.

Unfortunately, there are quite a few errors in the story.

I'm disturbed that the false information is spread and that there seems to be no problem in accusing the doctors of wanting to cause Emilio to die. In fact, the disease is causing Emilio to die, and his mother has said as much. The nurses and doctors have fought to prevent Emilio from having a "natural" death.

The doctors have worked with Emilio's mother, and have kept him alive in spite of repeat episodes where the baby's lungs developed a leak - or a "pneumothorax" - caused by the very high ventilator pressures required to keep Emilio's oxygen levels up.

Somehow, the North Country Gazette obtained the Ethics Committee Report and they have posted it on the Internet. I have copied part of the report at this post.

A pneumothorax allows air to escape into the chest around the lung, the pressure outside the lung grows each time the ventilator pushes air into the lungs. The lungs will collapse unless a chest tube is placed, the air is sucked out of the chest, and the lung reinflates. The ventilator pressures, high concentrations of oxygen and the collapsing of the lungs each cause further damage to the lungs.

The same high pressures explain why the doctors did not put in a tracheotomy earlier. The "trach" would have leaked if placed while the lungs needed such a high pressure.

There's no question of the diagnosis and the vitamin IV was not one of the "life sustaining treatments" and probably was not needed at all.

There's no doubt that the child has Leigh's syndrome. The syndrome is diagnosed by a group of symptoms, findings on the exam and sometimes by labs. In Emilio's case, there are also MRI's that show areas of the brain are dead and there are EEG's that show he has seizures one third to one half of the time. There are some tests for finding whether and how many or how severely the cells are affected with a genetic defect that makes the mitochondria - the energy factories of the cells - damaged. In the worst form, the type that causes "necrosis," or cell death, of the brain cells, children die very early. An alternate name is "necrotizing encephalomyopathy," meaning that the nerve and muscle cells are affected.

What is not known is the exact nature of the genetic defect that is causing the child's cells to die. There are at least several dozen and from my reading, I'll bet there are a hundred or so genetic defects that can be inherited or may be a new mutation. Some are "X-linked," meaning they are passed through the mother. Some - especially the X-linked forms - disturb the metabolism of the pyruvate dehydrogenase enzyme within the mitochondria.

In the past, some children with the form of the syndrome that changed the metabolism of pyruvate dehydrogenase got better after given high doses of IV thiamine. Now we know that that only works for certain types of defects that cause the syndrome. Other people get better with Co-Q 10 or some other diet change. (The article that the lawyers used to "prove" that the doctors were denying needed therapy was from 1974. There is much more known about the Sydrome than was known then - for one thing, more is known about DNA and certain mutations. However, these types are usually much more slow in developing and it's much more likely that the docs have been able to order tests for this specific defect - the DNA is evaluated.

While the hospital ethics committee did vote behind closed doors, they heard the testimony of in a hearing that included the lawyers, Emilio's mother and at least one employee of Texas Right to Life. No one is disputing the facts of the report.

Doctors understandably can debate and discuss medicine in a closed conversation, without lawyers and non-medical family members present. How else could they freely discuss the case, without fear of more lawsuits and/or while using the exact medical terminology that doesn't always mean the same thing to lay people that it does to doctors?

The difference is between those who want to keep Emilio alive no matter what pain he is caused by his treatments, no matter how many times his body must be invaded by tubes and needles while his brain tissue - and probably his muscles and intestinal lining as well - dies as the ventilator forces air into his stiffened lungs.

How many needles will Emilio have before his mother changes her mind and lets him go in peace? How many times will he be snatched back from the edge of death by the doctors before he is allowed to live - even a short time - without the pain and irritation of chest tubes, ventilators that push air into him, etc.?

There's no mention of removing the food and water because Emilio's brain does not cause him to breathe without the ventilator. If the ventilator is removed before the damaged areas of the brain heal -- a very unlikely scenario in children without Leigh's disease -- Emilio will die within minutes. The disease will kill him, not the doctors. Removing the ventilator will allow - not cause - him to die.

One of the lawyers has been posting about Emilio at Wesley Smith's blog since mid February.

And yet, neither of the lawyers mind saying things like,

People who could profit from an innocent person’s death should not get to decide when it occurs. Whatever the hospital’s motives are for pushing to end Emilio’s treatment, a child's life outweighs all other concerns--whether it’s to cut costs, or for convenience, or something else,” said Carden. “And furthermore, the twisted state law that allows hospitals to exterminate disabled children over their parents’ wishes needs to be changed.”

There is no profit for the doctors - the child has Medicaid and Medicare, according to what the lawyers and Texas Right to Life staffers have told me.

It is wrong to falsely accuse. It will not help Emilio. I sincerely doubt that it will help Emilio's mother get ready to let him go. And many people are being made angry and sad about the doctor's, hospital employees, nurses and even the Bishop of the Diocese of Austin's "murder" of Emilio. (The post at ProLife Blogs that had that last has been "snipped" to remove it, but the note of protest about accusing the bishop is still there. The quotes from Melanie Childers are still online at the North Country Gazette.)

Video on Emilio Gonzales

Austin Texas' KVUE has several video news stories available on their website covering the story about Emilio Gonzales and the Texas Advance Directive Act.

The report is in error because it says that the hospital makes these decisions, when the law allows the doctor to do so, and the ethics committee only determines whether the doctor's decision is correct about "medically inappropriate care."

These may not be available for long:
"Medical Ethics vs. Futile Care" is available on this page. (I can't link to this one directly.) This video covers the Ethics Committee and has part of an interview with Catarina Gonzalez.

There's more video, here. One is from the day the lawsuit was filed and one, "Life Support Decisions" is from Thursday the 22nd, with a long interview, "I live breath to breath," with a mother who faced a similar decision in December.

News stories from the last few days are linked to that page, too.





3/21/07 Mother gets more time to find new hospital for dying son

3/20/07 Dying toddler brings futile care bill to forefront

Explaining

This is a re-write of a post I made as part of the conversation about Emilio Gonzales's treatment at Wesley Smith's Second Hand Smoke.


I'm a family doctor because I have always seen the patient as part of the family and (ideally and sometimes not so ideally) the family as integral to the patient's condition and health care. We do treat family members, even if we never see them.

However, when the family's needs conflict with the patient's, the patient's interest has to come first. We naturally identify with a mother's wish to keep her child alive. However, when the doctors sense that we are treating the mom at the expense of the child's care and comfort as he is dying, the duty is to the child, our patient.

The determination as to what the best interests are in each case depends on whether it is true that (as the blogger-published report of the Ethics Committee says) the baby is having increasing injuries requiring aggressive treatments due to the ventilator, more uncontrollable seizures, progressive spastic muscle effects, loss of brain tissue due to the disease and what I suspect is multiple organ failure (liver and kidneys) due to both his underlying cell malfunction and the lactic acidosis.


I just don't believe in conspiracies that would allow a deception to play out over a month. Jerri Ward wrote on Wesley Smith's blog about the earlier hearing on February 19th, and said that the mother originally did not want the child to have a tracheostomy and a permanent feeding tube. Evidently, the mom and doctor were in such conflict that a new attending was named.

The nurses I know would be tearing themselves up over the condition of the baby as it is. To have the doctors write orders that make them cause the baby pain, over and over, without seeing the good of healing or at least a little relief of pain, is abuse of them, as well.

Patients have taught me lessons in caring for them as they die. Even in my first week as a phlebotomist nearly 25 years ago I had to draw blood from a brain dead child. The only way I could get through it was to care for this child and be grateful to his parents for being generous enough to donate his organs. I still treated him - and was encouraged to treat him by my bosses and the nurses caring for him - as though he were a living, feeling person. I count it a blessing that I was able to do what I could to respect them and do what I had to do without causing more pain and injury.


Instead of caring and concern for this mother and Emilio, the fuss and attention is focused on personalities and organizations.

It's shocking to me to see the use of the word "futile" brought up over and over - even though it's not in the law at all. It's used as some sort of weapon and focus to call in the troops. There are bad doctors, bad nurses, bad judges, husbands, wives, children and bad examples of surrogates. This law does not make it any easier for them to end a patient's life. The doctors and hospitals still have to answer to the public, courts and community. No doctor wants his failure to heal made part of a public press event and no hospital wants to be known as a place where patients are killed if they don't go home well. The formal process laid out in the law gives structure to very hard times in the lives of patient's families. (and I've offered several times to come to the aide of anyone in Texas who suspects that the law is used to cause the death of someone who is not dying)


What's worse is the attack mode and personalized accusations in the press and the blogs. Who would have ever thought that anyone would publish the names and phone numbers of a Bishop, accusing him of complicity with murder?

We can be sure we're being mocked by our traditional non-pro-life counterparts. At the American Society of Bioethics and Humanities meeting last year in Denver, it seemed as though most of the sessions knocked the concept of conscience and individual rights that trump the community's.

We're fighting the skeptics and unbelievers - not to mention those who claim to be believers yet feel the need to justify their complicity with abortion and push for embryonic stem cell therapy for their diabetic daughters, etc. The claims that nurses and doctors just want to empty a bed in the hospital make it harder to assert that our beliefs are not just personal opinions, that they are matters of right and wrong. Not to mention that we don't come off as good Christians when we make statements that assume the worst of nurses and doctors or when we ally with someone whose reaction is to attack a Bishop.

"Living Life's End"

The title is from a 2005 essay by Gilbert Meilaender in First Things. Not surprisingly, Dr. Meilaender speaks with much more clarity than I ever could in discussing the sort of dilemma that we face when considering the baby, Emilio Gonzales, and the treatment vs. the care he is to receive from his doctors, his mother, and the State and the distinction between letting "die those who were clearly dying," and “letting patients die who are in fact not dying.”

We are not abandoning the care of Emilio by saying, "This much and no more." If he requires constant painful intervention and technology while his condition continues to deteriorate, we do not cease to care for him when we cease to intervene and use technology.

As Dr. Meilaender points out,

On the one hand, we should not aim at their death (whether by action or omission). We shouldn’t do whatever we do so that they will die. On the other hand, because we do not think that continued life is the only good, or necessarily the greatest good, in every circumstance, we are not obligated to do everything that might be done to keep someone alive. If a possible treatment seems useless or (even if useful) quite burdensome for the patient, we are under no obligation to try it or continue it. And in withholding or withdrawing such a treatment, we do not aim at death. We simply aim at another good: the good of life (even if a shorter life) free of the burdens of the proposed treatment.(emphasis mine)

The reports at the Capitol are conflicting with what is being told at the North Country Gazette, Prolife Blogs, and Second Hand Smoke. And with one another.

No one that I know is arguing that Emilio is not dying - or that he could have died from any number of past events if the doctors had not intervened. It is time to stop intervening.

There is also a difference between causing another to do his duty and forcing another to act against his conscience and what he believes is his duty because you very much want him to do what you want him to do. How often do you want your doctor and your ICU nurse to practice going against her or his conscience? How often should the State force an action - a repeated action that causes other people to be forced to act - against a professional's conscience?

The Texas Right to Life lobbyists told me that they are offended because the Ethics Committee mentioned Emilio's "dignity." If the report published by the North Country Gazette is the actual Committee report, the members affirm Emilio's human dignity - but say that the aggressive treatment is an assault against his human dignity:

• The current aggressive treatment plan for Emilio amounts to a nearly constant assault on Emilio’s fundamental human dignity, and with little, if any, corresponding benefit to Emilio. Thus the burdens associated with such care clearly outweigh its benefits.

A trial of care including the ventilator, the feedings, and the chest tubes for a pneumothorax were appropriate. When Emilio continues to require more invasive care, when we can not keep him the same, much less make him better, it is time to stop hurting him, at least.

To force the doctors, nurses, phlebotomists and all the other people who are caring for Emilio to put aside their concern for his best interests, to subjugate their consciences and duty to Emilio for his mother's wishes is simply wrong.

To accuse them and even the Bishop of the diocese of Austin, of acting with the intention to "murder" Emilio (as June Maxam of the North Country Gazette quotes Melanie Childers as doing here and as "plb" quotes NCG here), to state that the hospital Ethics Committee is willing to speed Emilio's death in order "to free up a bed" (as Jerri Lynn Ward is quoted as saying in this news article: “You have a treating doctor who makes the initial decision, then you have an ethics committee at that same hospital with, frankly, a very clear conflict of interest,” Gonzales' attorney Jerri Lynn Ward said. “They have something, a bed they can free up basically, if their decision goes unchallenged."
, is simply evil.

(Edit 8:30 AM 3/21/07 addressed the "dilemma" of spelling)

More on Texas end of life case

A reader, unfortunately, shows us the other extreme of the end of life debate. However, she missed the point entirely. Our discussion about the end of Emilio's life is a debate about conscience, laws, and whether because doctors are licensed by the State, they abdicate their duty to act in the patient's best interest.

It is also a demonstration that the first principle of medical ethics should be non-maleficense, not autonomy. In the name of "autonomy," the mother is demanding that the doctors carry out acts that they believe are not in Emilio's best interests. The lawyer for the mother questions what the doctors are telling other hospitals, and patient's rights advocates accuse the doctors of abusing an "imbalance" of power.

The doctors - and the Ethics Committee, in their report as published by The North Country Gazette - have shown the evidence that leads them to believe that this child is experiencing pain and being harmed due to the actions of the doctors.

Here's the case they made, with a little explanation and guess work from me:

The lungs cannot tolerate the ventilator. We know this because of the repeated pneumothoraces (or "leaks"). Any one of these instances would have lead to a "natural death" by the compression of the lung tissue - and even the heart - if the doctors had not intervened on the mother's request.

There are large areas of the child's brain that are dead, and more are dying due to the seizures (and probably, the build up of lactic acid and other toxins). We know this because it shows on the MRI and the EEG.

More than likely, feeding by IV, a feeding tube placed in the gut or even by mouth harms this child. We know that the cells lining the intestines grow and replace themselves faster than any other cells in the body. Probably, the lining of the gut is mostly dead because the cells require energy from the mitochondria to replace themselves and to fight off infection. Where the lining does remain, food in the form of fats, proteins and many nutrients must be moved into the system from the gut by actions of cells that require energy, rather than passive absorption. Everything must be moved through the gut by the actions of muscles that require energy or they will sit, build up, and decay.

Even in a child who has a healthy liver and functional mitochondria, long-term "total parenteral nutrition" damages the liver. In this case, the cells of the liver aren't likely to be functioning well due to the mitochondrial defect and to the build up of lactic acid and other poisons, including those IV feedings. Virtually all food is processed in the liver by cells that use energy to function. Most waste products are also processed by the liver, again, in cells that use energy.

Very soon, if not already, Emilio will need kidney dialysis. Due to the brain damage and the acid build up in his blood, his blood vessels will not be able to contract and hold his blood pressure up and his heart will beat irregularly.

The doctors laid this out for the Committee. The Committee's report laid it out for us. From what I've read in the press and other blogs, the doctors have tried to explain this to Emilio's mother.

And yet, we read that the doctors, the hospital, the Catholic Church and the State of Texas are all conspiring to kill Emilio against his mother's wishes.

Leigh's Disease (Long post on end of life and baby Emilio Gonzales)

The mitochondria are the power plants of the cells. They take the sugar and turn it into the power that runs all the processes of the body. Leigh's disease is a defect in the genes of these mitochondria or of the body’s ability to make a protein or an enzyme that is used in the mitochondria, like pyruvate dehydrogenase.

The prognosis for individuals with Leigh's disease is poor. Individuals who lack mitochondrial complex IV activity and those with pyruvate dehydrogenase deficiency tend to have the worst prognosis and die within a few years. Those with partial deficiencies have a better prognosis, and may live to be 6 or 7 years of age. Some have survived to their mid-teenage years.

The defect can be nearly complete or it can be very mild depending on which of the many genes that can be involved are involved. The cells may be able to make energy but only very slowly - or very, very slowly. Or some cells may be able to make some power, but others can't. Some functions of the body need constant energy, others do not.

Pro-Life Blogs and other blogs carry posts about the very sad case of little Emilio Gonzales, who has been diagnosed with "Leigh's Disease." Unfortunately, they are full of implications that doctors (and even the Bishop of the diocese of Austin) are planning to "murder" the baby boy.

We do not have good tests to determine where the genes went wrong and they can go wrong in several places causing different symptoms and even different symptoms in the same child at different times. So this is a “syndrome” or a diagnosis given when we see a pattern of symptoms. AIDS is a syndrome that has only one cause -- infection with a virus instead of many different gene defects -- but it still develops differently in different people and can mimic different diseases in the early stages.

Sometimes Leigh’s disease does respond to thiamine – but only if the defect is in certain genes. Not in the vast majority of cases.

Another name for the syndrome is “Subacute Necrotising Encephalitis,” because in the late stages, areas of the brain die and break down. This little boy's nerve cells all over his body, including large areas in his brain, have died. This can be seen on his MRI.

It’s also supported by the findings on his EEG – that shows that he is having seizures one third to one half of the time. The seizures cause more cells to die.


However, the pain nerves still live: the report says he still reacts to painful stimuli as though he is in pain. He isn't able to process the pain.

Other organ systems fail as the lactic acid builds in his blood and tissues – cooking the proteins that make up the muscles, enzymes, and most structures of the body. If you’ve ever been sore the day after exercise, you know what lactic acid build up in one spot feels like and how long it takes to go away.

And, of course, growing and healing takes energy. The fastest growing cells for most of us line the intestines and make up the liver where food is processed - they die first, but can grow back sometimes - so the symptoms seem to come and go. When they are dead, it hurts the patient to give him tube feedings that must be absorbed by the gut or to give IV feedings that contain anything that must be processed by the liver.

Even the kidneys use energy. And the sphincters of the bowel and bladder do, too. If there is an imbalance between nerves, the sphincters spasm shut - so Emilio needs a catheter in his bladder.

The lungs stiffen with prolonged ventilator use. The stiff lungs and muscles mean that the pressure from the ventilator needs to be so high in order to give him enough oxygen that he is having leaks appear in his lungs as some of the airways break. The baby's lungs are repeatedly collapsing and having to be re-inflated. This means that over and over, he has a “pneumothorax.”The air goes into the sac around his lungs, squeezing the lung tissue itself down. The pressure outside the lungs is even higher than the pressure the ventilator is making inside the lungs -- each push from the ventilator pushes more air through the leak.

The docs then have to place a chest tube or chest tubes – possibly in a baby, they would use the temporary insertion of large bore needles - to release the air around the lungs, and allow the lung itself to inflate.

Some of the air moves between the tissues of his body, coming to the surface in little pockets – causing “subcutaneous emphysema.” Patients tell me that the pneumothorax and the subcutaneous emphysema hurt. The chest tube does not take away the air in the tissues – that takes days or weeks to be reabsorbed.

What would I do? I would suggest that the mother and the docs adopt a strategy of "this much and no more." Give Emilio droppers of fluids by mouth, to keep his mouth moist. Hold him as much as possible. Continue the ventilator, but stop placing the chest tubes and stop changing the ventilator settings. Do not add new medicines and do not resuscitate when the heart stops.

The Ethics Committee Report has been published at the North Country Gazette.

Medical Update Since Last Ethics Committee Meeting on 2/19/07:

Dr. Alexandra Wilson, the patient’s current attending physician, states that Emilio is unable to move his arms and legs and only has abnormal posturing movements with stimulation. He rarely opens his eyes, does not gag, cannot cough and cannot breathe without use of the ventilator; his pupils are not normally responsive to light. In addition, he can not empty his bladder and has to have a catheter. He does appear to experience pain, as he grimaces in response to deep stimulation, and is now receiving pain medications. He also bites his tongue, which causes bleeding, making it necessary to place a device in his mouth to prevent further injury to his tongue. In addition, he has experienced repeated full and partial collapses of his lungs, and his physicians and the treatment team are having great difficulty keeping his lungs inflated, even with the assistance of the mechanical ventilator. Finally, he is now having seizures, some of which produce visible physical symptoms, and scans (MRIs) of his head show progressive loss of brain tissue.

Dr. Brendle Glomb, pediatric pulmonologist, then discussed Emilio’s pulmonary status, which as noted above has continued to deteriorate. He explained the current functioning and support provided by the ventilator, and then described why Emilio would no longer benefit from a tracheostomy. He also noted that the repeated collapse and reinflation of Emilio’s lungs is damaging to the lungs, and increases the risk that they will tear or even burst during attempts at re-inflation.

Dr. Jeffrey Kane, pediatric neurologist, then discussed Emilio’s current neurological status, which has continued to deteriorate since the last consultation. Overall Emilio shows no purposeful response or movement, which is evidence that the deeper functioning of the brain is absent. In addition, Emilio’s EEG suggests that Emilio is experiencing many more seizures than those at the bedside can see. Based on his review of Emilio’s most recent EEG, Dr. Kane believes Emilio’s brain may be experiencing seizures between 1/3 and ½ of the time. Dr. Kane believes that the seizure activity will continue to increase, and that continued seizures will accelerate the death of Emilio’s remaining brain tissue. In response to a question, Dr. Kane noted that the current brain damage is not reversible, even if the seizure activity for some reason should slow or stop. Instead, he believes that Emilio will continue to experience the relentless and progressive loss of his brain tissue and brain function, and that no therapy or other intervention has been identified which could stop or reverse this process.

Dr. David Anglin, a pediatric intensivist involved in Emilio’s care, then discussed Emilio’s care-setting. He noted that during the Ethics Consultation on February 19, 2007, there was some hope that Emilio might be able to be transferred to a lower-acuity care setting or discharged home, and particularly if he were to undergo a tracheostomy and receive a feeding tube. However, given Emilio’s continued deterioration, he is too ill to survive anywhere but an intensive care setting, and he certainly is not a candidate to be discharged to home.

Edit 03/19/07 at 21:30 - cleaning up grammar.