The demented should want to die or feel guilty

Baroness Mary Warnock led the British ethics committee (named after her) which couldn't quite decide the status of human embryos, but allowed destructive research on them. (See this LifeEthics essay on the Baroness' 2007 apologia concerning the deliberations of her committee.)

This year, the Baroness told British journalists that she believes that the demented are wasting the lives and resources of other people and that they should be euthanized. According to the Daily Mail, she now supports a "duty to die."

Lady Warnock, 84, was the head of the committee which during the 1980s opened the way for legal research on human embryos.

Influential in education as well as in medical ethics, she became an open supporter of euthanasia after her ill husband was helped to die by his doctor in 1995.

She told the Church of Scotland's magazine Life and Work: 'I've just written an article called A Duty to Die? for a Norwegian periodical. I wrote it really suggesting that there is nothing wrong with feeling you ought to do so for the sake of others as well as yourself.'

She added: 'I am absolutely, fully in agreement with the argument that if pain is insufferable, then someone should be given help to die, but I feel there is a wider argument that if somebody absolutely, desperately wants to die because they are a burden to their family or the state, then I think they too should be allowed to die.'

There's more of the same at the BBC News.

Ignore the fact that a large part of our economy depends on the jobs created by the need to take care of people who can't take care of themselves, at all ages.

Please note that the Baroness is worried about the "wishes" of people that she dismisses as incompetent. She's proposing that other people determine when and how those wishes are implemented.

However, she also suggests that society should actually decide to go down the slippery slope of pressuring people into feeling guilty enough that they chose euthanasia.

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.

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.

Medical Ethics and the Holocaust Lecture Series

The Holocaust Museum of Houston and the University of Texas at Houston are sponsoring a lecture series, "Medical Ethics and the Holocaust."

I'm not sure of the procedure, but there is information at the website on watching the lectures, live, on the Internet.

Summary of Forensics Reports from New Orleans Hospital

The link to the experts’ reports in the case against Dr. Pou has been published by CNN.


I was worried that I was just reacting in defense of a fellow doctor, so I spent quite a bit of time reviewing and typing up a summary, in order to get as much of the case as clear as I could. The reports by Baden and Brescia convinced me that I was right to defend Pou.

A February, 2006 “All Things Considered” (National Public Radio) article that describes the conditions that led up to the charges. (The photograph above is from that article.) 2000 people were in the hospital after the hurricane. Some were patients and their families, some were from the surrounding area and trying to get to high ground. All had to be evacuated.

A Ms. McManus, the daughter of one of the patients described the attempted evacuation of one lady who died due to the efforts:

According to McManus, attempts were made to evacuate other patients from the seventh floor. She recalls seeing workers desperately trying to get one woman out of the hospital, only to see that the woman died in the process.

That article also describes Ms. McManus' evacuation at gun point by the local police.


I used Baden’s report for the order, with correlation from Brescia’s notes added (in italics) where he seemed to give additional information. These were incredibly sick patients, and there is at least some indication and documentation of pain, anxiety, worsening condition in each case. No one should be surprised that the patients died that last day. The worst thing that could be proven from the pathologist’s notes is that the documentation wasn't done by a lot of people, over several days. (Not surprising considering the conditions.)


1. Paraplegic admitted 7/13/05 to Chalmette hospital for fecal impaction and pitting edema of LE. Surgery was being considered before evacuation to New Orleans. There were no Physician’s notes in the charts after transfer to Life Care in NO. The nurse’s note 8/31 documented the evacuation order by verbal order from a Dr Thien. Someone called wife 8/31 to check on her safety (I can’t tell whether the patient made or received the call. BBN) Positive morphine and versed in tissues at autopsy. Body removed from hosp. 9/11, Autopsy 9/17.

Dr. Brescia noted that patient had a “mega colon,” "chronic ileus" and cirrhotic. It looks as though this patient was prescribed Ativan for anxiety before the last day, and there’s documentation about the patient being or complainig about being “hot” and “too big to move.”

2. Admitted to NO hospital for decubitis ulcers. CVA, Dementia, pernicious anemia, contractures, bed bound total care. Alert/Awake, but no verbalizing. Bilateral Above the Knee Amputation due to ulcers planned but not done. Dr. LaCorte made notes. 8/31 code blue, F 105, sinus tachycardia at 123. Aspiration pneumonia afterwards. “No c/o pain.” Body recovered 9/11. Autopsy showed gangrene of toes Rt. Foot. Cerebral atrophy, “prominent post mortem changes.” + Morphine and versed.

3. Transferred from Chalmet 8/22 with acute bronchitis, hyperkalemia, renal insufficiency. 8/25 notes improved function. Darvocet 8/24. Fentanyl 8/28. (Shows pain, BBN.) Recovery 9/11, Autopsy 9/18. moderate to advanced decomposition. Morphine in liver.

4. Nursing home resident admitted to NO Memorial from NO Methodist Hospital 7/1, 2005 with coffee ground emesis, sepsis and hypotension. 8/7 surgical treatment of cellulitis. 8/30 Dr. Cashman ordered evacuation. 8/31 Dr. Joubert ordered “prn MSO4 1-4 mgm ivp/im q 1 hr prn restlessness/agitation.” Joubert hadn’t seen patient. Body recovered 9/11 Autopsy 9/19, extensive decomposition. “Bronchopneumonic changes limited to the lower lung lobes and pyelonephritic changes were present in both kidneys.” (bilateral lower lobe pneumonia and bilateral kidney infection) + Morphine and versed.

Brescia’s notes on his patient # 1: Sepsis GI bleeds, DNR. Orders 8/5 Restraints, PEG, debridemet (sic). 8/7 penile cellulitis, Ativan prn agitation 104.8 temp. 8/26 “Outlook poor . . . hospice not unreasonable.” 8/27 last entry by MD “quiet vs. stable Antibiotics” 8/21 MS for agitation, “last seen alive.” “9/1 No lights, water toilet air, electricity. T 102 (squared) sponge bath.” (I’m not sure whether this last was from the records or Dr. Brescia’s opinions. BBN)

5. Admitted to NO with multiple infected decubitus ulcers and malnutrition 7/19. Lt Leg debridement 7/26, rt leg debridement 8/19, Rt. Below the knee amputation 8/26. Evac order 8/31. Body recovered 9/11, Autopsy 9/17. Moderate decomposition and bronchopneumonia rt lung. + Vicodan (sic), morphine, versed.

6. Nursing Home resident admitted to Chalmette 8/12 for treatment of decubitus ulcers. Evac to NO 8/27. History of Congestive Heart Failure, organic brain syndrome, Chronic Obstructive Pulmonary Disease. 8/30 evac order. 8/31 fever 100.8. Body recovered 9/11, autopsy 9/21. + Morphine and versed.

7. Admitted to NO Memorial 8/2 and LifeCare 8/10 severe decubitus ulcers, H/o Arteriosclerotic heart disease, CVA hypertension and rectal surgery for cancer with a permanent colostomy. 8/22 inferior vena cava filter inserted Bilateral deep venous thrombosis. CT 8/25 showed osteomyelitis and abcess in pubic bone. Temp 104 9/29. Note 8/39 “no acute distress.” 8/31 signed order to evac. Unsigned order for morphine 1-4 mg every hour for restlessness/agitation Ativan 1-2 mg every hour for restlessness/agitation. Nurses note 8/31 Vicodan (sic) given for c/o of pain. Autopsy moderate to advance degree of decomposition and heart disease. No pulmonary embolism or other acute pathology. +morphine and versed. (note, no dates for recovery, autopsy)

Dr. Brescia’s notes have dates apparently crossed out, but documents temperatures, “uncomfortable,” “daughter refuses surgery,” “thick secretions,” ” yelling out,” “Doctor gave something to make ‘feel better’ x3 doses”

8. Admitted to Chalmette for treatment of pneumonia and sepsis. 8/25 transferred to Life Care Chalmette and 8/27 evac to LC NO. Treated for Arteriosclerotic heart diseas, congestive heart failure, hypertension and acute renal failure with last dialysis 8/26. 8/30 vital signs normal no note of pain. Autopsy moderate decomposition severe arteriosclerotic heart disease. +morphine and versed. (No dates for recovery, autopsy. BBN)

Dr. Brescia’s notes:
Oxygen, PEG, foley Coded during dialysis. Dialysis m/w/f Last note, “quiet vs. stable” Last nursing note 8/30/05 BP 128/56, 69, 22 awake, no distress.
“nl breathing no pain”per Dr. B(my question: ? With a respiratory rate of 22?BBN)
Autopsy – rt coronary 100% thrombosis.

9. Admitted to LC NO from Memorial NO 8/8 for decubitus ulcers, dehydration and malnutrition. Morphine 8/22. Order for morphine d/c’d 8/24, with Fentanyl patch and as needed Demerol. 8/30: vital signs normal, Demerol for pain. At 8 PM, temp 106.4 breathing agonal. Evac ordered. Autopsy severe arteriosclerotic heart disease. +fentanyl, demorol, morphine. “The presence of morphine in liver, brain, muscle and purge fluids demonstrate that the heart was beating and __ was alive with that injection was given.

"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)

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.

"Back Alley Death" ("Physician Assisted Suicide" )

Oregon and Vermont - extremes on the map and extremes on medical ethics. But this is the first time that I've heard that doctors should give patients a deadly prescription to prevent a "back alley" death.

How many of us really want our Family Doctor to be proficient in killing? Or, in over-riding his or her conscience?

The Vermont Legislature is once again considering legalized, intentional death by medication and physician prescription.

From the Burlington Free Press:

Is it suicide? That's at heart of Statehouse debate

Published: Thursday, March 1, 2007
By Terri Hallenbeck
Free Press Staff Writer

MONTPELIER -- Dr. Robert Orr read the Webster's Dictionary definition of suicide: "The act or an instance of taking one's own life voluntarily and intentionally especially by a person of years of discretion and of sound mind."

How, he asked, is that different from proposed legislation that the House Human Services Committee is considering that would allow a terminally ill patient to hasten dying with a lethal dose of medication?

We're trying to change the dictionary definition we've been working with for years," he said.

Dick Walters, an ardent supporter of the legislation, sees the two -- suicide and physician-assisted dying -- as entirely different things. "Suicide is a desperate act," he said. "It's done in a back alley, a barn. It destroys families.

"What we're talking about in H. 44 is something totally different," he said. "They're doing this under care, with loved ones around them. They're saying goodbye in a way supportive of their own values."

(emphasis mine)


HT to Bioethicsnews.com

Debate On Ethics

After several days of discussion about a baby that Texas lawyer Jerri Ward asked Wesley Smith to blog about on Secondhand Smoke, I have been asked "How can you be a doctor and not know this about what passes for ethics nowadays?"

Because I have a different understanding "about what passes for ethics nowadays."

I do not agree that euthanasia is practiced in Texas medicine or that utilitarian arguments prevail in medical ethics, especially in Texas. I am a pro-life family doctor who has been studying and practicing medicine, and now, bioethics in Texas. My activism and biggest motivator has been focused on the manipulation and dehumanizing of humans at the beginning of life, because of the advocacy for abortion and destructive embryonic research. I am repeatedly reassured that our Texas physicians do not support euthanasia at the end of life by what I know of them and by what I witness at our medical association meetings and at the meetings where we have been debating the amendment of the Texas Advance Directive Act.

I know what is said in the literature, in the media, in the blogs, and what is said between doctors. I've experienced being the patient, the daughter, wife and mother of a patient, and the doctor in some tough ethical situations.

The elite "ethicists" across the world voice and publish all sorts of utilitarian ideas, including the feminist bioethicists at the American Society of Bioethics and Humanities who discounted conscience as a legitimate guide for physician's actions. I oppose this sort of "ethics" every chance I get.

However, the doctors in Texas do not advocate or encourage such drivel. The very rare doc who is unwise enough to voice the opinion that some lives are not worth living is immediately countered and out-numbered and out-reasoned by his or her professional and compassionate colleagues.

In contrast to my own experiences and education, in the one-sided reports on the blogs and in the media, I hear a story that never quite fits what I know about medical facts, much less about the way I see practical clinical ethics being practiced and taught in Texas. Unlike the other posters at Secondhand Smoke, it is not at all "obvious" to me what happened in this case.

Concerning the bit we know about the case in question, it's not at all "obvious" to me that any pediatrician would have argued to an ethics committee that there are not enough resources to go around or that a child would be better off dead than to have a safe tracheostomy and feeding tube placement in order to continue the current level of technology and in anticipation of transfer to the proper step down care.

On the other hand, if, as I suspected, there had been concerns about imminent death or about a crisis due to the mitochondrial defect flaring after stress of surgery, then it would have been appropriate to object to treatment that could hasten death while causing pain and (surgically) separating the child from her/his mother.

I spent several hours over the last two days watching and listening to the hearings last August 9 on the TADA. I couldn't attend them because my mother was in the hospital - she died August 14. I was reassured by the testimony of the doctors and hospital representatives.

As I said, part of what the lawyer who reported this case experiences is most likely ("obviously") the result of her previously publicized comments in the media that doctors and hospitals kill patients and bury their mistakes.

There's (Still) No "Futile Care Act" in Texas

I keep running across news articles like this one in the Dallas Morning News (free subscription required) which claim that Texas has some sort of "futile care" law. There is no such thing as a "Futile Care Law" in Texas and never has been. (Previous LifeEthics posts include several in April, 2006.)

There is a law called the Texas Advance Directive Act (TADA). (Here at the Texas Statutes website in pdf, and an excerpt with my comments, here.) The law was written by a coalition of doctors, lawyers, patient advocates, disability rights groups, and pro-life groups such as Texas Right to Life, National Right to Life, and Texas Alliance for Life.

In that DMN article above, please note that Dr. Fine was interviewed without knowledge that he would be quoted in an article about a very sad case, one which had not come to the point of being subject to TADA at the time of the interview.

I am concerned that Texas Right to Life is not speaking up about why they found the law acceptible in 1999, but feel that they can condemn it - and all doctors and hospitals - now.

We never stop treating the patient. The TADA has never been invoked in order to withhold food or water from patients or from a patient who only needs artificial food and water. The Texas Advance Directive Act does, however, allow doctors to refuse to use medicine and technology that is not in our patient's best interest, treatment that is harmful or futile.

There are no futile patients, and no "futile care law," there is only futile medicine and technology.

If my patient suffers organ failure after organ failure, some medicines and technology can become harmful -- sometimes by causing side effects and more organ failure, often by prolonging the patient's dying.

In fact the TADA coalition has been trying to come to a consensus on making sure that the Act cannot be invoked if the only intervention needed is food and water. It has also been agreed that the Coalition will support a longer period of notice before the ethics committee meeting is held, that medical records need to be offered in a timely manner and that the family should have two weeks in order to find another doctor or facility.


The cases in Texas which have been cited to criticize the TADA include:

• A woman who had been in the ICU for 4 or 5 months after heart surgery, who had had a stroke and was on a ventilator. Her doctors had suggested to her family that perhaps they should not begin dialysis when her kidneys failed. The family rejected the suggestion and the patient had to have continuous, then intermittent dialysis. She then needed increasing doses of medicines to raise her blood pressure. After a while, the attending doctor again suggested stopping or withholding the addition of new treatments because of the risk of pain and complications that each treatment added on top of the previous complications. Again, the family refused. The doctor decided that he couldn't continue to escalate the interventions and asked for an ethics committee meeting under 166.046. The family members postponed several times, putting off the meeting. Somewhere in this time, the family threatened legal action, picketing, and raising as much bad publicity for the family as they could muster. Finally, the hospital set a meeting for a firm time and refused to budge. The ethics committee members agreed with the doctor and began the process to help the family find a new doctor or a new facility for the patient. The family began protests that became news nation-wide. A new doctor was found and additional treatments and invasive interventions were performed on the patient. Finally, the doctor reported that the patient had had a heart attack, and the ventilator was stopped without verifying brain death.
• In another case, the patient was brain dead, but the family members sued to prevent the doctor - who had been the woman's family doctor for years - from turning off the ventilator. A new doctor came in, did an additional test, and confirmed that the patient was brain dead.
• A third case involved a woman who had a stroke, was unconscious and required a ventilator and dialysis. The patient's daughter was an ER doctor in that hospital. There are no Texas long term facilities that offer dialysis to an unconscious patient on a ventilator. The patient was sent home with home dialysis and ventilator.
• A fourth case involved another woman who had had a stroke, was unconscious and required dialysis. There is still no facility in Texas that offers dialysis for a comatose patient on a ventilator. Her family objected to the hospital's "forcing" them to move her to another facility. Eventually, she was moved to another state, where there is a long term facility that could provide the treatment she needed.

Unfortunately, a repeating theme from some of the lawyers at the meetings is an objection that doctors are protected from malpractice if they follow the Act.

Two identical Bills before the Texas Legislature, SB 439 and HB 1094 not only remove the current protection from risk of malpractice for doctors who follow their consciences and would require doctors to use ever escalationg "life saving treatment" until (as in the case of Andrea Clark) the family decides to remove it or until transfer to another doctor or facility is arranged, without a time limit.


Do we really want to override doctors' consciences? Remember the NEJM article from last week.

Concerning abortion due to failure of contraception and prescribing contraceptives to 14 to 16 year olds when parents object, the Chicago Tribune reports that some believe this is the case:

That approach doesn't even give a patient the option to access other physicians," said R. Alta Charo, a professor of law and bioethics at the University of Wisconsin-Madison who was not involved in the study. "It's a raw imposition of your personal beliefs on all those who come to you for professional services."

Bad, Bad Doctors (Religious, with Consciences)

The NEJM has a free on line article evaluating the results of a survey of doctors, "Religion, Conscience and Controversial Clinical Practices," which is a perfect example that far too much of the effort of "medical ethics" or "bioethics," goes into deciding who can be killed.

"In recent years, several states have passed laws that shield physicians and other health care providers from adverse consequences for refusing to participate in medical services that would violate their consciences. For example, the Illinois Health Care Right of Conscience Act protects a health care provider from all liability or discrimination that might result as a consequence of "his or her refusal to perform, assist, counsel, suggest, recommend, refer or participate in any way in any particular form of health care service which is contrary to the conscience of such physician or health care personnel." In the wake of recent controversies over emergency contraception, editorials in leading clinical journals have criticized these "conscience clauses" and challenged the idea that physicians may deny legally and medically permitted medical interventions, particularly if their objections are personal and religious. Charo, for example, suggests that the conflict about conscience clauses "represents the latest struggle with regard to religion in America," and she criticizes those medical professionals who would claim "an unfettered right to personal autonomy while holding monopolistic control over a public good." Savulescu takes a stronger stance, arguing that "a doctor's conscience has little place in the delivery of modern medical care" and that "if people are not prepared to offer legally permitted, efficient, and beneficial care to a patient because it conflicts with their values, they should not be doctors.""

"If physicians' ideas translate into their practices, then 14% of patients — more than 40 million Americans — may be cared for by physicians who do not believe they are obligated to disclose information about medically available treatments they consider objectionable. In addition, 29% of patients — or nearly 100 million Americans — may be cared for by physicians who do not believe they have an obligation to refer the patient to another provider for such treatments. The proportion of physicians who object to certain treatments is substantial. For example, 52% of the physicians in this study reported objections to abortion for failed contraception, and 42% reported objections to contraception for adolescents without parental consent."

Not surprisingly, these "controversial" "legal" practices are abortion "for failed contraception," giving "birth control to teenagers between the age of 14 and 16 if their parents do not approve," and "sedation to unconsciousness in dying patients." For some reason, the authors do not give results or even discuss the other "Controversial Issues in Medicine": Physician assisted suicide, withdrawal of artificial life support or abortion for congenital anomalies.



First, "elective" abortion is neither mandatory nor beneficial.

Second, I guess that the first discussion must be whether or not "legal" implies that a practice is necessarily "beneficial," moral, or required.

Third, the legality of providing contraceptives to minors under the age of consent, against their parents' wishes, is questionable, except in Federally funded clinics, where it is mandated under Title X funding for Family Planning clinics.

Fourth, it is illegal in most states to participate in "Physician Assisted Suicide."

And fifth, the "monopolistic control" is distraction. Are all professionals who are licensed by the government required to do whatever is demanded of them by whomever can use their services? Let's see: architects, engineers, all those media types?

If so, I'd like to ask Alta Charo - who, after all is a licensed lawyer, working for a State University that receives Federal funds - to give me some good, solid quotes that do not advocate the taking of human life or the defamation of those of us who act on our convictions.





Take a look at the survey and the article. Take the survey.

Do you agree with the "bioethicists" quoted in the introduction?

UK survey: doctors should probably kill patients

The British Social Attitudes Survey is being reported in UK papers today as "4 out of 5" and 80% of respondents feel that a doctor should be able to kill patients requesting to be killed and who are going to die anyway. The support for killing goes down if the patient is not likely to die soon of his disease or if a family member should kill the patient and for suicide with assistance from the physician.

The Guardian OnLine reports the story this way:

In a finding confirming that British public opinion is at odds with the law, today's British Social Attitudes Survey reveals strong support for euthanasia, though only in carefully defined circumstances.

Research conducted for the survey indicates that backing for voluntary euthanasia depends strongly on whether someone is terminally ill, on levels of suffering and on how death occurs. There is much greater support for a doctor being permitted to end someone's life rather than a relative, or than suicide assisted by a doctor.

Strongest support - from 80% - came for the suggestion that a doctor should "probably" or "definitely" be allowed by law to end the life, at the patient's request, of an individual with an incurable or painful illness from which they will die, such as cancer.

Seventy-five per cent backed doctor-administered euthanasia for those with an incurable and terminal illness who say their suffering is unbearable.

However, public support for euthanasia drops dramatically for cases where an individual is not already facing death as a result of their condition. Where the patient has an "incurable and painful illness, from which they will not die", 45% support assisted dying, while only 43% back euthanasia for those not in danger of death but permanently and completely dependent on relatives.

When questioned on a specific condition, public backing falls still further. Exactly a third of people said they would condone euthanasia for individuals with an incurable and painful but not terminal illness, such as severe arthritis.

From the (Scotland) Herald:

VOLUNTARY euthanasia for terminally ill patients is supported by eight out of 10 people in Britain, according to the latest survey of social attitudes.

Professor Sheila McLean, of Glasgow University, and a team of researchers from the National Centre for Social Research investigated attitudes towards assisted dying and found a large majority were in favour if doctors were in charge of the procedure.

The British Social Attitudes Survey found 80% supported voluntary euthanasia for "a person with an incurable and painful illness, from which they will die, for example someone dying of cancer".
continued...

There is less public support in cases where a person will not die from their incurable illness, with only 45% found to be in favour.

A similar proportion supported the right to die for someone who is completely dependent on relatives for washing and feeding but not in pain or danger of death.

Euthanasia by a doctor attracted the most support - 80% - while physician-assisted suicide was supported by 60% and slightly less than half said relatives should be allowed to administer voluntary euthanasia. A link between religion and attitudes towards assisted death was found with support waning among regular worshippers.

Times Online coverage is not nearly as informative as either of the above sources, but it's available here.

Each of the articles review recent attempts to legislate in favor of euthanasia and notorious cases that have been in the news.

Thanks to Matthew Eppinette, again.)

Hypothetical end of life dilemma

Suppose there was a patient, Mr. B., with adenocarcinoma, a fast growing malignancy that begins in the liver, the pancreas, or another intestinal organ. Although the patient has lived twice the predicted 3 month life expectancy, the cancer has finally spread throughout the body - to the liver, the lungs, the intestines, and, now, the brain.

Mr. B. is a 50 year old engineer, divorced and has no children. When he found out about his cancer, he spent some time "getting his affairs in order." This month, he moved back to the town he grew up in, to live with his older sister, Mrs. S. Unfortunately, he has not seen a doctor in town, since he had planned to continue seeing the oncologist 50 miles away. The day after he arrived, Mrs. S. found him passed out on the floor of his room and called the ambulance.

On admission to the Emergency Room, Mr. B. is not conscious, can't swallow, and his liver and colon are not functional. The CT scan of the head shows a small mass, but the doctors explain that the problem is probably the loss of liver and kidney function.

The liver has completely shut down, causing the loss of the blood plasma protein normally made by the liver. The fluid from his blood moves from the veins and arteries into the body tissues by osmosis. The liver can't clean toxins from the body, so he is yellow, his blood vessels are losing the ability to hold blood pressure, and his kidneys are shutting down.

Mrs. S. refuses to hear of transferring Mr. B. to the big hospital 50 miles away where his oncologist practices. She insists that Mr. B. is a fighter and has already fooled the doctors by living so much longer than they predicted, and demands that he be given "everything possible" to prolong his life.

The family doctor who is assigned as Mr. B's new Dr. by the ER "on call list" has asked both of the kidney specialist groups in town to evaluate the patient for dialysis and each has separately advised him that the dialysis is not appropriate and declined the consult. For one thing, the veins in his arms and legs are not big enough to handle the amount of fluids necessary for dialysis, and he would need a surgical procedure to place a larger central IV line than the one that was placed in the ER.

The sister, Mrs. S, who is acting as the patient's surrogate for making medical decisions, is furious with the new doctor. Although by th day after admission, Mr. B.'s legs are swollen to the point that the skin has begun cracking and draining, she is certain that the patient is thirsty and hungry. Convinced that the doctor is "killing" and "starving" her brother, she calls a lawyer who takes the family doctor to court. The judge grants an emergency hearing and then orders the doctor to begin dialysis and provide adequate artificial nutrition and hydration.

The family doctor, who is board certified in Family Medicine, which requires continuing medical education and repeat certification each 7 years - in fact, he just passed his boards for the 3rd time - has never written the orders for dialysis, hasn't written orders for "total parenteral nutrition" (TPN) since he was in medical school, and hasn't placed a central line since residency 21 years ago. Besides, his hospital privileges don't include supervising dialysis. He's already explained all of this to the judge.

The doc, just looks at the judge and says, "Tell me, your honor, will you assist me in placing the central line and then dictate the exact orders you want me to write? What rate of filtration and how much pressure should I use in the dialysis? How much fluid can I safely remove, and how fast?"

Agreement: no euthanasia for children

Art Caplan, the pseudoeditor at blog.bioethics.net, head of the Center for Bioethics at Pennsylvania University, and a columnist for MSNBC, has posted a note at the bioethics.net blog that calls for an end of the suggestion that sick babies should be killed by their doctors.

Good going, Art!