The patient is in his 50s and is suffering from a neurological disorder that has impaired his ability to breathe and swallow. He is dependent upon a feeding tube inserted into his stomach for nutrition and a ventilator inserted through a tracheostomy to breathe. He faces the prospect of being like this for the rest of his life.

The tracheostomy prevents him from speaking but he is otherwise completely awake and alert and is able to communicate by writing. He understands his diagnosis and prognosis.

The patient has some ability to breathe on his own and so the pulmonology service was trying to see if the patient could recover enough strength to come off the ventilator (weaning). Indeed, his pulmonary status gradually improved to the point that he was able to come off of the ventilator for short periods (breathing only from an oxygen mask placed over the tracheostomy tube).

Unfortunately he would eventually get fatigued and need to be placed back on the ventilator. It was during one of these trial periods that the patient refused to go back on the ventilator. He made it very clear (via writing) that he understood that he might die without the ventilator but that he didn’t want to live if he was going to be dependent on the ventilator for the rest of his life.

This was witnessed by the family, the nursing staff, and myself and was well documented. But the pulmonologists felt that the patient may not be capable of making his own decisions because the carbon dioxide level in his blood was rising as a result of his ventilatory failure. However, it was obvious that he remained clear headed and able to determine his own fate.

Then one of the lung specialists ordered that the patient be sedated and placed back on the ventilator. Hold on a sec! Isn’t that assault? Yes it is. But the specialists felt that from a liability standpoint, they could not be 100% sure that the patient is fully competent since he could not speak and he had a relatively high carbon dioxide blood level. They felt that this uncertainty could be brought up in court and used against them should the case ever go to trial.

Wait a minute! The family witnessed the patient communicating with the staff and they agree that he is competent and free to make his own decisions. All of this has been witnessed and properly documented. And nobody is talking about a lawsuit. As far as I know there are no issues of potential malpractice in this case. But the specialists felt that they should err on the side of keeping the patient alive since some uncertainty remains.

Sadly, the specialists are right. Not ethically right. They are legally right. They are playing the odds. Far fewer lawsuits are filed for similar cases where the patient is kept alive against their wishes then in cases where the patient died because a certain treatment was not given. There is also the practical aspect that time can be taken to make absolutely sure that the patient is competent, informed, and their wishes clearly known before treatment is withheld.

The downside of waiting to make absolutely sure of what the patient wants (or allow time for the patient to change his or her mind) is that this may prolong suffering before the patient ultimately is allowed to die. But this is what the patient wanted to avoid in the first place!

After the human egg is fertilized it divides multiple times and forms a small sphere of identical cells called a zygote. Each of these cells is called a blastomere and when there are about 30 of these the zygote is called a morula. These divisions occur in the fallopian tube several days prior to implantation.

What’s special about these early cells (blastomeres) is that they are pluripotent i.e. they are able to divide into any type of specialized cell (muscle, nerve, gland, etc.). Scientists study these cells in the hopes of finding out how this cell specialization works. The goal is to find a way to grow new tissue to replace that damaged by disease or trauma. The implications of such a technological breakthrough are profound. Replacement organs could be grown (no more need for donors), new pancreatic cells could cure diabetes, new nerve cells could cure paralysis, new skin for burns, donnerless blood for transfusions, and on and on and on.

Who would stand in the way of such a breakthrough? Oh, only the oldest institution in the world. After being the inspiration for millions of violent deaths over 2 millennia the Catholic Church finally decided to affirm the sanctity of human life during Vatican Council II. The Humanae Vitae clearly defines the boundaries of human procreation to be that of natural law, i.e. God’s design. Thus anything outside the loving union of man and wife (such as in vitro fertilization) is considered immoral as is the “direct interruption of the generative process already begun” (such as artificial contraception and abortion).

Of course, most conservatives enthusiastically pick the sanctity of the human embryo from the Vatican morality smorgasbord (while choosing to pass on the immorality of war and the death penalty). And G.W. Bush was perfectly in line with Vatican teachings against abortion and in vitro fertilization when he restricted millions of dollars in federal funds from going to research that would result in the destruction of human embryos.

But now scientists hope to bypass this funding ban by utilizing a new process in which single cells are taken from this ball of pluripotent cells (notice I didn’t write “ball of early human beings”) and used to grow embryonic cell lines that can be studied. Current techniques involve taking cells after the embryo has developed into a blastocyst, which results in the death of the embryo (and draws the ire of conservatives and Catholics). But the new method does not kill the embryo, which can be implanted and develop into a normal pregnancy. Sounds like a great compromise, right! WRONG!

Even if the new cell harvesting technique does not lead to the interruption of the generative process already begun, it still violates the natural process of procreation according to the Humanae Vitae. There seems to be no wiggle room to even consider the principle of utilitarianism i.e. that the untold number of lives that could be helped and saved as a product of this research should outweigh the evils of violating the natural order. The HV specifically states that “it is never lawful, even for the gravest reasons, to do evil that good may come of it.”

But there appears to be a problem with formulating an ethical system based on “natural law” when that law is incompletely understood. The HV recognizes that procreation does not result from every sexual act and explains this by saying “God has wisely ordered laws of nature and the incidence of fertility in such a way that successive births are already naturally spaced through the inherent operation of these laws.”

However, many more acts do result in procreation than was previously known. What was not known back in 1968 is that human procreation has the stunningly high failure rate of 30 to 50% with most of the loses coming at the earliest stages of pregnancy. This is because early pregnancy is a kind of weeding out method during which very complex biochemical processes (fertilization, implantation, and specialization) must be near perfect for the embryo to survive. This is nature at her messiest. Like the amoral natural world of prey and predator, only the fit survive.

Trying to extrapolate the sanctity of human life from our macro world to the amoral microscopic world of dividing cells is the absurdity of human arrogance. It was never considered before the discovery of embryology and should not have been attempted by VCII. But they wanted and needed a tidy beginning point for human life even though God in her wisdom did not create her natural laws to conform to the moral system of the Catholic church.

Apparently God did not intend for the embryo to have the same sanctity of life that the Catholic church has so arbitrarily extended to it. Otherwise this high rate of embryo death would either be pointless or the work of a malevolent deity and I believe that most would reject such notions.

If early human life is not so precious according to true natural law then does that mean that embryos are fair game to do what ever we want with them? Not necessarily. Every action of an entity acting out of free will is made in a moral context. I.e. we are responsible for our actions and those done with malevolent intent are wrong regardless of the context.

But it opens the door for the consideration of the utilitarian principle of contributing to the greater good and this new cell extraction technique should be given very serious consideration. Besides, in some sense the Humanae Vitae may agree with this cell harvesting. Even though it outlaws direct abortion or destruction of the embryo for therapeutic reasons, it accepts medical therapy that may indirectly hamper procreation.

“The Church does not consider at all illicit the use of those therapeutic means necessary to cure bodily diseases, even if a foreseeable impediment to procreation should result there from—provided such impediment is not directly intended for any motive whatsoever.”

Abortion, even to save the life of the mother is wrong but other therapy such as radiation to treat cancer that could also result in sterility is acceptable. The Church does recognize the value of utilitarian thinking even if it violates God’s natural laws! Could not this add weight to recognizing the utilitarian worth of embryologic research in the eyes of the Church?

As for when does human life begin? When does life take on that sanctity that the Church looked for, for 2,000 years (before it took the easy route and settled on fertilization)? I like the opinion of Vanderbilt University embryologist Dr. Brigid Hogan who compared the developing embryo to origami.

In her view, conception marks not the beginning of life, since both egg and sperm are alive, but merely an increase in complexity. Many people think of the embryo as a tiny homunculus that just grows bigger. To Dr. Hogan, the building of an embryo is a process like origami, except that the sheets being bent and tucked are made of cells instead of paper.

Like origami that gradually changes from a simple sheet of paper to a complex form, at some point that cannot be clearly defined, the fetus or embryo becomes human in a moral sense. This does not fit at all with the cut and dried moral worldview of Catholics and conservatives but then again nether does most of reality.

Well then . .

If you’re an evangelical Christian this is just one more step on that ever shortening road to Sodom and Gomorrahland. Conservative organizations such as the Family Research Council and Focus on the Family have been very critical of the vaccine. Mostly they claim that such a vaccine is not needed if we all make like good Christians and delay sex until mirage and not screw around.

Ahh, but if the world were perfect then we wouldn’t need conservative Christian organizations.

And yet,  this medical advancement raises some interesting issues and questions. What if there were no health consequences to sex? It’s not such a theoretical possibility. Most of the deadly and harmful STDs (HIV, hepatitis, herpes) are caused by viruses, which are particularly susceptible to vaccines (the effort to produce the HPV vaccine took over 15 years). It’s possible that within the next 10-20 years the spread of these STDs will be prevented by vaccines.

It is also entirely possible that the next 10-20 years may see the development of the ultimate birth control technology; I.e. a simple and harmless procedure that can be given once, is 100% effective, and lasts until the person decides that they are ready to reproduce at which time it is easily and effectively reversed. Think of it like a tubal-ligation or vasectomy but in injection or pill form. The technology is already beginning to take shape.

Should such medical advancements become reality then society will be facing the same questions posed by the development of the HPV vaccine. Should we be giving these vaccines and temporarily sterilizing children when they reach the age of sexual maturity, i.e. the ages of 9-12? Or do we assume as the evangelicals assume that this will only give horny kids carte blanche to engage in sexual activity? Would you as a parent sleep better at night knowing that your sexually capable teenager is protected from pregnancy and the worst STDs or would you prohibit them from receiving such treatments, cross your fingers, and hope that all those abstinence contracts your teen signed actually work?

But crossing our fingers is what most parents do now even though there is not much evidence that either sex ed or abstinence only education work very well to prevent the spread of STDs or pregnancy. Even though there has been a slight decline in teenage sexual activity in this country in the last 20 years, a significant drop in the teenage pregnancy rate can be attributed to the use of injection depo contraception. Because these injections need to be given only once every three months the improved effectiveness comes from improved compliance. Clearly technology has the capability to make unexpected (and often unwanted) pregnancy a thing of the past. But only if it is used.

So what will it be? Should we aim to protect our teenagers from the risks of what is a normal human body function or do we adhere to our traditional puritan morality; that we need not protect people against the risks of something that they should not be doing in the first place? At some point in the near future we may be forced to face our own sexual mores. Is sex “bad” only because it has health consequences? If those consequences go away then is sex “neutral” or still bad if it is not monogamous? Should teenagers be sexually active even if they have no health consequences? If not then when and why should we arbitrarily decide when it is ok to become sexually active?

“I’m very confused about a DNR. I understand what a DNR means. My Mom had one. But, she was very ill and quite old. What does a DNR mean for say someone in their 50s who has a heart attack but has every chance in the world of living once resuscitated and rehabilitated? Would they receive this care or die because of the DNR order? I want to get a DNR but because of this confusion I’m not sure what to do.”

A DNR (Do Not Resuscitate) order simplistically is an order put into the chart of a patient (usually at the family or patient’s request) that changes the usual staff response to a cardiopulmonary arrest (heart and/or breathing stop) from resuscitation to no resuscitation. Hospital resuscitation (CPR) usually involves four things; 1. Chest compressions and rescue breathing, 2. Cardiac defibrillation (shocking the heart back into a normal rhythm), 3. Endotrachial intubation and mechanical ventilation (being placed on a breathing machine), and 4. Cardiac stimulants and blood pressure medications administered via IV.

There are several potential misconceptions among the lay public about an in-hospital DNR so keep the following in mind.

1. A DNR order can be altered or revoked at any time!
2. Any DNR request or revocation can be made verbally i.e. the patient or family does not need to produce any documents or proof of advanced directives (living wills).
3. The requesting patient/family member does not need to sign any order (thus DNR requests can be made over the phone).
4. In the event the patient is incapacitated or otherwise unable to give informed consent any family member can make a verbal request for a DNR.
5. A DNR applies ONLY to when there is a cardiopulmonary arrest. Unless otherwise stated (i.e. comfort care only) a patient with a DNR order will continue to get treated for their illnesses even and up to the point of trying to prevent a cardiopulmonary arrest.

Another important point needs to be clarified. Patients do not die because of a DNR order! At the point where resuscitation is initiated the patient is already clinically dead (i.e. no pulse, blood pressure, respirations). DNR is not a form of euthanasia. This may seem like a subtle point but many people have this misconception because they believe that resuscitation is an effective treatment to prevent death. In fact CPR is a very poorly effective treatment given its importance. On average only 15% of patients requiring CPR in the hospital survive to discharge. In contrast, 96% of people in one survey believe CPR to be effective in preventing death.

So if CPR is not very effective then why bother with a DNR order at all? The main point of a DNR order is to prevent unnecessary suffering especially when death is expected and inevitable such as in the end stages of a terminal illness. Even though only 15% ultimately survive CPR, on average 1 in 8 hospitalized patients who suffer cardiopulmonary arrest are successfully resuscitated. These patients are usually in critical condition following the arrest and require intensive, often invasive, and often painful treatment in an ICU and of these only 1 in 3 ultimately survive to discharge. But these odds as bad as they are, are an average of all patient groups.

For patients older than 70, those with multiple serious medical problems, severe disabilities, and acute severe infections the survival to discharge rates following CPR are less than 4%! For patients with metastatic cancer the survival rates following CPR are next to ZERO! Even if a patient with a terminal condition somehow miraculously survives to discharge following CPR they still suffer from a terminal condition and almost always end up back in the hospital in a short time and may have to go through another CPR/ICU session! I have seen this sad scenario more than I care to count.

On the other hand, a DNR order is usually not appropriate for a relatively young patient who has a potentially completely reversible and treatable condition such as heart disease. An ethical dilemma may arise when such a patient requests a DNR order that goes against the recommendations of their physician. In this situation patient autonomy conflicts with a doctor’s ethical duties. However, keep in mind that in almost all cases the DNR order is up to the patient and/or family based on the recommendations of the physician. Only in very rare cases will a physician unilaterally make a patient DNR and only then with a court order or the support of the hospital ethics committee and this is usually based on unrealistic family expectations resulting in the continued severe suffering of a terminal patient.

The issue of unnecessary suffering.

In my experience most DNR requests are appropriate considering the clinical situation. However, in my experience way too many patients undergo in-hospital resuscitation attempts when they should have had a DNR order and this often results in horribly painful intensive care that is also amazingly expensive and usually ultimately futile. Far too many patients and/or their families say that they want CPR but draw the line at a life that is dependent upon “artificial means” to maintain. The focus in these cases is not the potential for needless suffering but the preservation of life at any cost. Likely this emanates from our Christian culture, which tends to value life above the prevention of suffering even in cases where death is inevitable but suffering is not!

The issue of too much health care spending.

In this country we spend up to one third of total health care funds on intensive treatment for elderly patients and those with terminal illnesses in the last few days-weeks of their lives. However, this is likely to change. Regardless of whether or not our country converts over to a socialist health care system, the future of health care spending is likely to include ever increasing restrictions on the payment for intensive treatment of the elderly and those with terminal illnesses. I.e. if you want everything done to save the life of your 80-year-old grandmother who suffers from metastatic lung cancer, heart failure, and kidney failure then you better be prepared to fork it over. Maybe now is the time to start getting real familiar with the concepts of living wills, advanced directives, hospice care, and DNR orders if you haven’t already.

It’s a common joke among health care workers. After seeing the living hell that patients endure following cardiopulmonary resuscitation (before ultimately dieing) many in the health care field like to claim that not only are they “DNR” (Do Not Resuscitate) but they’ll get it tattooed on their chest just to make sure that it doesn’t happen.

It turns out that more than one patient has actually done gone and did this! The latest DNR tattoo convert is Mary Wohlford, 80, of Iowa, who wants to make sure that there is no ambiguity about her wishes (link via the pro-life fanatics at Fark.com). However, such an unorthodox way of communicating your end of life wishes is being scoffed at by the legal dept.

“Bob Cowie . . is chairman of the Iowa Bar Association’s probate and trust law section. He suggests people sign a living will or authorize a medical power of attorney.”

Why can’t a DNR tattoo be a legal document? First off, an advanced directive must have three elements; 1. It must represent the true and un-coerced wishes of the patient, 2. It must be un-ambiguous, and 3. It must be morally and legally appropriate. A tattoo, being a quintessential example of personal expression and consent is more than qualified to be a legal document (the signature being the body on which it is placed). It seems “a priori” that a tattoo is less likely to be a result of coercion or trickery than a simple signature on a document.

Whether the tattoo spells out “Do Not Resuscitate” or just “DNR” these terms have very specific and un-ambiguous meaning to health care personnel. The “DNR patient” does not get CPR (chest compressions or rescue breathing), is not defibrillated (shocked), is not intubated and placed on a ventilator, and does not get special medication via an IV to simulate the heart and elevate the blood pressure. Most paper advanced directives are far more ambiguous than this and often it states only that the patient does not want to be kept alive via “artificial means”. Huh?

The third requirement is more problematic but it doesn’t matter if there is a paper document or a tattoo involved. A DNR (particularly an out-of-hospital DNR) is most appropriate when the patient has a condition(s) that significantly decreases the likelihood that a successful resuscitation would lead to meaningful long-term survival. For example, patients older than 70, those with very poor kidney function, advanced HIV disease, and general severe debilitation have < 4% chance of surviving successful resuscitation to be discharged alive from the hospital. Patients with metastatic cancer and those with severe acute illness like sepsis, pneumonia, or stroke have about a 0% chance of survival! In these cases it is more than appropriate for a patient to tattoo their DNR requests on their chest.

However, patients suffering cardiac arrest from certain arrhythmias have actually much better survival odds (25-40% or more) without any serious lasting disability if their attack is witnessed and help (like an out of hospital defibrillation device) is immediately available. If you are relatively young and in relative good health (even if you have pre-existing heart disease) then a DNR tattoo doesn’t make much sense.

But is a DNR tattoo, even in the appropriate patient, really a good idea? Advanced directives and end of life wishes commonly maintain a certain amount of ambiguity up to the point where they need to be followed. This is because no one can anticipate the exact clinical situation that may arise and whether it is appropriate to evoke a DNR order.

In my medical school ethics course we were given an example of the problem of blanket DNR orders. This was back in the mid 1990s when HIV and AIDs had very poor outcomes and few treatment options. The vignette was of a HIV positive patient with advanced AIDs who entered the hospital for a relatively minor infection. He requested a DNR status, which included no intubation or mechanical ventilation, but after getting his first dose of antibiotics he developed an acute anaphylactic reaction with airway swelling. He needed emergent intubation to allow him to breathe but that would go against his DNR request. What to do?

The utilitarian solution would be to treat him because the condition had nothing to do with his HIV status and is very survivable with appropriate treatment. Yet, this is an example of how blanket DNR requests like a tattoo can be problematic even in seemingly appropriate populations.

However, due to the often ambiguous nature of advanced directives and the unpredictability of clinical situations, most state laws regarding advanced medical decision making allow DNR orders to be revoked at any time and allow next of kin to make decisions for an incapacitated loved one without anything more than their belief of what the family member would want in the particular situation. No documents are required to make these decisions and family may even contradict what is stated in an advanced directive signed by the patient!

This can be a problem if the patient does not trust their “loved ones” to make the right decision. It is not uncommon for family to have other interests in mind other than what is best for the patient. From economic concerns (collecting the patient’s retirement checks) to emotional self interest (”I don’t want my Grandma to die!”), to simple ignorance (”The doctors can save her!”) family members make bad decisions all the time and the patient needlessly suffers. In these cases, the 80-year-old patient with the DNR tattoo more then likely knows what the hell they are doing. My advice in this case would be to read and follow.

According to a recent phone survey only one American in 1,000 was able to name all five rights guaranteed by the First Amendment. If you extrapolate this finding to the whole of the country then you find that only 300,000 Americans out of a population of about 3 million know all of their First Amendment rights (I am one of the 300,000, BTW). Incredibly 30% did not know that freedom of speech is one of them despite this concept being one of the cornerstone concepts of our democracy and only a meager 24% could name freedom of religion.

Even though few Americans make the effort to know all 45 words of the First Amendment by heart most have at least a vague sense of their “rights” in the form of freedom from government interference in their lives. So it is very unlikely that our present day Congress would be able to pass such an unconstitutional law as the 1798 Sedition Act. Yet our horribly inexact knowledge of our “rights” helps to explain the wide support for such misguided proposals like the so called Flag Burning Amendment or the sad fact that about half of Americans actually believe that our rights go too far (a common occurrence in time of war).

Digging deeper into the survey we find a significant number of Americans are unclear on the concept of a “right”. About a third believe that education is guaranteed by the first Amendment and one in five believe that there is a “right to drive”. The problem here is that a “right” as defined by the First Amendment simply limits government restrictions on activities such as speech. A “right” is not something that places an obligation on others to provide. Not a single Amendment obligates the government to provide any service (like education) or provision (cars and roads) to the people.

With so few Americans knowing what their rights are and not even understanding what the concept of “right” means, it worries me when I see surveys like this one that found that 77% feel that health care should be a right guaranteed by the government. But health care is not a “right”. Health care is an entitlement in this sense. It worries me that people use “right” and “entitlement” so interchangeably.

Health care is a service that requires others to provide and these providers must be compensated. However this compensation does not come from the government. As Dr. Peikoff (PhD) pointed out, “Government is not a productive organization; it has no source of wealth other than confiscation of the citizens’ wealth, through taxation.” Government simply acts as a collector and distributor. The actual compensation comes from us or rather those of us who pay taxes. Taking something from someone and giving it to someone else does not make it a “right”.

Yet this simple concept has not prevented so many from using the erroneous term “right” when what they really mean is entitlement. They do this because they know that “right” implies getting something for nothing such as freedom of speech and who doesn’t want that? When health care is considered a “right” then the vast majority of Americans support universal health care provided by the government.

But when people realize that health care is not a right but a service requiring them to provide compensation then support for universal health care drops. Only 45% would pay higher taxes or health care premiums in order to have universal coverage. As a service, health care draws on limited resources and unlike a true “right” health care must be proportioned out which means that not everyone will be getting their “fair share”. When people realize this reality then the percentage drops even more to 35-38% if the result would be limited choices and longer waits for non-emergent treatment (the universal ills of universal health care coverage).

Some believe that we have the “right” to get emergency treatment. The 1986 Emergency Medical Treatment & Labor Act (EMTALA) mandated that every US hospital that accepts Medicare/Medicaid must also treat and stabilize every patient in need of emergent treatment without regard to their ability to pay. But this is not a “right”. This is mandated charity (if the treated patient is unable or unwilling to pay afterwards) The uncompensated costs of this unfunded mandate are spread around among paying patients, insurers, and taxpayers. So everyone (including nonresident foreign citizens) has the opportunity to get charity emergent care.

The reason I’m nitpicking on definitions here is that the future debates on universal health care in this country will (as too often are things of this nature) be dominated by political slogans and “buzzwords” in an attempt to simplify a massively complex issue for consumption by an attention span shortened public who know far more about the Simpsons then about their own Constitution. It appears inevitable that one of these slogans will be “Health care is a right” followed by a litany of services that your government should be providing while burying the costs of such a program in the fine print and completely neglecting to mention what unpopular steps will need to be taken in the likely event that costs cannot be contained. Be educated. Be prepared.

Continuing my discussion on this topic with Moof, one commenter, Dr. Crippen (from the UK), proposed the following excellent questions that need to be considered before any “right-to-die” legislation is proposed. I will answer each in turn.

1. There would have to be legislation allowing euthanasia. Under UK law, you cannot consent to being murdered. You therefore have to legislate. Supposing, therefore, you do legislate and allow patients to ask a doctor to kill them. Under what circumstances?

First off, assisted suicide is not direct euthanasia under either the Oregon or the Netherlands laws. The term “assisted suicide” is not just a euphemism. Patients are “assisted” by a medical professional in obtaining a lethal combination of medications and the means by which to administer them. The Oregon law prohibits anyone other than the patient from directly administering the medication(s) but requires a “health care professional” to be present.

The Netherlands law is less clear on who would administer the medications (probably to avoid discriminating against patients who are able to give consent but because of their illness would not be able to do it themselves) but several conditions must exist; The patient must be a mentally competent adult. The request by said patient for assisted suicide must be voluntary and persist over time. The patient must have intolerable suffering without any hope for relief. The physician must consult with another physician not involved in the case.

2. Could they ask to be killed because of intractable depression that has not responded to treatment? Of course not, you will say. But why not? If that is what [they] really want, why not?

Depression and other psychiatric illnesses do not fulfill generally accepted criteria for assisted suicide; i.e. that the patient is suffering from intractable physical pain and suffering and that death resulting from the same illness causing the suffering is considered to be inevitable. Both the Oregon and the Netherlands laws do leave it up to physician evaluation to determine if the appropriate criteria exist but the Oregon law makes it very clear that if the physician suspects that the patient’s judgment is impaired by depression or other psychiatric illness, a psychological examination must be done. More about the depressed terminally ill patient on question # 4.

3. How terminally ill do you have to be to be allowed to request euthanasia? Life expectancy 5 years? 1 year? Less than a year? One month? You would surely have to draw a line . .but where?

A terminal patient is commonly defined by hospice programs and by the US Medicare program as having six months or less of expected lifespan. I prefer the inclusion of this criteria in being eligible for assisted suicide because it underscores the futility in continuing palliative care when suffering is incompletely relieved, quality of life is poor and death is inevitable.

However, not everyone includes this criteria because there exists the possibility of suffering chronic severe pain/discomfort and/or debilitation from one or more conditions that are not necessarily terminal. This is a valid point but also a source of a lot of alarm from critics of assisted suicide. In particular, they worry about the possibility that non-terminal patients who have debilitating disease will be put to death by society under the pretext of humane relief of suffering from lives that are deemed to be not worth living. But such a slippery slope would have to cross a huge speed bump in that it violates a critical tenant of assisted suicide; that the patient request must be fully voluntary, persistent, and be free of coercion or other undue influence such as depression or substance abuse.

However, the possibility that a patient with a non-terminal illness may be allowed to chose assisted suicide is of continued concern to opponents of such laws (advocates for the disabled are vehemently opposed). How do we know that a cure or effective treatment for their disability and/or source of suffering won’t soon be discovered? How do we know that their lives will not improve with effective treatment and even how do we truly know that a terminal illness is truly terminal (the case of Stephen Hawking who has ALS is often invoked)?

These are valid concerns however opponents assume that these theoretical hypotheticals (the possibility that a cure will be found, for example) usurp the importance of patient autonomy and the reality of human suffering due to physical illness. Opponents have never provided a good argument to why patient autonomy should stop at how, when, and where a terminal/suffering patient decides to die (hence the “right-to-die” debate). Again I raise the question; Does the importance of life always trump the relief of suffering and of patient autonomy?

4. Should the patient have to have an independent psychiatric assessment?

Dealing with psychiatric conditions in terminal illness is tricky for any proposed assisted suicide law. Depression is very common in terminally ill patients and as such I think it’s very important that the patient be evaluated for impaired judgment resulting from such depression or other psychiatric illness. The problem is that an automatic requirement for a psychiatric evaluation may amount to an undue hindrance and delay for the patient who will not benefit from it. Such a requirement will also suggest to these patients that the system (and society) automatically considers them to have some degree of “mental imbalance” for wanting to die. After all, what sane person wants to die? Only depressed or crazy people want to commit suicide! This requirement seems reasonable on the surface but can become quite problematic.

5. Does the family have to consent? If they do, is it just the partner? Or the children? Or the parents? Supposing there is a disagreement; would you have a vote? Simple majority required, or maybe two thirds?

Since this is a question of patient autonomy and self-determination the concerns and wishes of the family are not taken into account in most cases. In addition, the Oregon law makes very clear that the family cannot make a request for assisted suicide on behalf of the patient in the event that the patient is unable to communicate (i.e. in a coma). The request must be voluntary and come from the patient and the patient alone.

6. Having signed a document requesting euthanasia, does the patient have to be conscious at the time he is killed? Supposing he is unconsciousness. Does the doctor still kill him? Supposing at that stage, the wife/husband changes her/his mind and withdraws consent? To whom does the physician owe the greater duty?

Both the Netherlands and the Oregon laws make it clear that a request for assisted suicide be voluntary and be made by a competent and well informed patient and that such request persist over time. The Oregon law specifically states that the patient can resend the request at any time. If the patient is not conscious then obviously he/she cannot continue to give consent nor are they able to resend the request if so desired. In Oregon the patient must self-administer the medication(s), which is another protection against involuntary euthanasia.

In the event that the patient is no longer able to give consent then from a legal aspect it appears that the request is no longer considered to be valid. As mentioned above, consent for assisted suicide cannot be given nor rescinded by anyone other than the patient. Ergo, the physician’s duty is strictly to follow the request of the patient so long as the patient is able to give consent.

7. If he does not kill the patient and the patient regains consciousness, could he then sue the doctor for breach of contract? You can just see the lawyers buzzing round that one!

Considering that this is America (which means “Land of the Lawyers” in Potawatomi) this is a very important question. If the assisted suicide does not work and results in additional pain and suffering of the patient and it can be proven that this was a result of improper procedure, prescribing, and/or monitoring then it should fall into the venue of medical malpractice (ironically). As with question #6 if the patient is unable to give consent for any reason then the physician cannot be held liable for not going through with the assisted suicide in accordance with the law.

8. Do you take the patients financial standing into account? What has that got to do with it you may say, well, supposing the patient knows that the on-going medical bills are going to reduce the whole family to poverty (and it happens) and so decides to ask for euthanasia rather than soldier on?

Ahh. Excellent question. Or to put it another way; What if the patient has reasons other than intractable pain and suffering that are pushing them to request assisted suicide? Many an elderly or terminally ill patient may not want to subject their family not only to the expense of their illness but also to the pain of seeing their loved one suffer and slowly die.

But then again, financial considerations or other concerns not directly related to intractable pain and suffering in a terminal patient do not fulfill the accepted criteria just as depression alone does not (see question #2). What if a terminal patient does have intractable pain and suffering but other concerns like the financial well being of the family do play a part in the patient’s reasoning and decision to request assisted suicide?

If this is known to the physician then a request for a psychological evaluation should be made to ensure that the patient is making the request for assisted suicide appropriately and not under undue influence or pressure. But just because the family may save money from the patient’s early demise does not necessarily mean that this alone supercedes that patient’s right to self-determination!

There are still so many more questions that need to be asked with regard to assisted suicide.

Is it appropriate for the physician to FIRST bring up the option of assisted suicide to a terminal patient who is obviously suffering? Just what is the family’s role in this? What if the family approaches the physician with a request to “convince” the patient to consider assisted suicide? Can family members sue or get a court order to stop the assisted suicide? Exactly how do we determine and document “pain and suffering” in a terminal patient? What does the physician do with a patient who is not in any pain yet but has been diagnosed with a terminal illness and who wants assistance with suicide before the inevitable pain and suffering start? Should we require patients to endure pain and suffering first before we consider a request for assisted suicide?

Yes, euthanasia and assisted suicide is a can of worms waiting to be opened. But in my opinion it needs to be opened and these questions need to be asked because intractable pain and suffering is a very real issue and patient autonomy needs to be discussed and debated within this context. If you believe that we can make the issue of assisted suicide go away by not opening that Pandora’s box then you must believe as well that the issues of futile human suffering at end of life and patient autonomy and the right of self determination will also go away with it. Obviously this will not happen. It is a box that we must open.

The state of Illinois has declared in law that “human beings” exist from the point of conception and as such they have a “right to life”. A couple is using this law as the basis to file a wrongful death lawsuit against the Center for Human Reproduction in Chicago that accidentally disposed of nine of the couple’s embryos. A judge recently ruled that this case could continue as filed (a previous judge had thrown the case out but didn’t give sufficient reasons).

Maurice at the Bioethics Discussion Blog has expanded coverage of the issue with the language of the Illinois law in question, a very similar 1995 case from Rhode Island in which the court clearly ruled that frozen embryos were “irreplaceable” property and didn’t qualify as “victims” in a wrongful death suit, and a bizarre and somewhat sarcastic comparison in the Chicago Sun Times between this issue and 19th century attempts to deny slaves the status of “personhood”.

The problem of course is that there is no clearly defined point in human gestation where one can say, “here is where the fetus becomes a human being”. In ages past, the fetus did not attain full legal and mortal status as a person until the moment of birth (there were many practical reasons for this). In fact, the degree of difference between an early fetus and a near term one lead most early philosophers including Thomas Aquinas to believe that the fetus does not attain the status of personhood until late in gestation.

But now we have the technology to keep a fetus alive out of the uterus as early as the 25th week of gestation. This makes birth appear to be an incorrect and arbitrary point at which to define personhood but it certainly does not contradict the beliefs of St. Aquinas et al. and is consistent with most state laws that prohibit elective abortion in the third trimester. So clearly the fetus attains “personhood” well before birth but exactly where is still hotly debated.

In the last few decades a new movement has arisen who’s members believe that personhood begins at conception. This belief has little precedent simply because very little was known about the biology of conception and early gestation until the 20th century. This belief is popular with conservatives because it is simple and concrete. Life begins at conception . . period. This gets rid of all the nasty arbitrariness inherent in human gestation that would require deeper ruminations as to the definitions of “human being”.

The obvious problem with the “life beginning at conception” belief is that the concept of what I will call “actuality” (i.e. the state of development of the fetus at any point in time) is replaced with “potentiality” as the definition that they use for personhood. As such this belief dictates that we assign the same moral value to a fertilized ovum or multicellular zygote as we do to a fetus that is sufficiently developed to be able to survive independently of it’s mother.

As a result, we end up with this situation where the Illinois legislature has given full personhood status to nine microscopic embryos in a frozen vat. But clearly these embryos are not “human beings” any more than an acorn sitting on my desk is an oak tree. The moral value of these embryos emanates purely from potentiality and not actuality.

However, the concept of potentiality in ethical reasoning is entirely dependent upon the certainty with which such a potentiality would become a reality (an actuality). For a normal pregnancy the rate of spontaneous miscarriage is about 20% (the rate may actually be higher due to very early miscarriages before the women knows she is pregnant). The likelihood of successful in vitro fertilization is very low with only about 11-26% of transfer attempts resulting in a live birth. Clearly neither a fertilized embryo in vitro nor one in vivo has a 100% chance of proceeding to term and so logically we cannot assign every embryo the same moral value as that of a term infant.

This uncertainty is consistent with how our society assigns moral value with regard to potentiality vs actuality. We prosecute criminals not based on what they could have done but on what their actual crimes were. Even though up to 90% of doctors in training complete their education, we don’t start offering high paying jobs to first year medical students. Professional sports leagues don’t hire every high school athlete and we don’t treat every purchase of a lottery ticket as if that person is the actual winner. Had the certainty of development of a fertilized egg into a term fetus been a 100% certainty then this theory would have held much more weight. But few things are a certainty in life (death, taxes, etc.).

Yet somehow the belief has developed that early products of gestation have the same moral value as that of a term infant. “Pro-lifers” are very adapt at punching holes in the definition of “person” that “Pro-Choice” advocates put forth in an attempt to prove that fetuses before the third trimester are not really people. Yet I have never read an argument from a Pro-Lifer that convinces me to that the potentiality of a fertilized egg equates to the moral equivalent of a “person”.

The most metabolically active area of the brain and the first to be damaged when the supply of oxygen is interrupted for more than a few minutes is called the cebreal cortex. This is a thin layer of brain matter that is responsible for most of the higher brain functions including memory, sensory perception, planning, motivation, personality, and conscious thought. It is this layer that makes us who we are and it is this layer that has been almost completely destroyed in Terri Schiavo.

Matthew J. Conigliaro who writes the only blog about Florida law, has a Terri Schiavo Information Page and he quotes the June 2003 opinion of the Second District Court of the State of Florida;

“Over the span of this last decade, Theresa’s brain has deteriorated because of the lack of oxygen it suffered at the time of the heart attack. By mid 1996, the CAT scans of her brain showed a severely abnormal structure. At this point, much of her cerebral cortex is simply gone and has been replaced by cerebral spinal fluid. Medicine cannot cure this condition. Unless an act of God, a true miracle, were to recreate her brain, Theresa will always remain in an unconscious, reflexive state, totally dependent upon others to feed her and care for her most private needs”

(emphasis added).

Terri’s husband Michael Schiavo filed petitions with Florida courts starting in 1998 and was successful in convincing the court that his wife had made statements to him as well as to other people (who testified as well) that she would not want to be kept alive in such a state. Terri’s patents opposed this petition and tried to convince the court that their daughter was in fact conscious but the court found the video tapes of Terri and the testimony of only two physicians unconvincing and early this month Terrie’s feeding tube was disconnected.

Despite what you hear in the press about Michael Schiavo (”he sued the doctors for a million dollars and now he is after her life insurance . . he doesn’t want her around anymore because he has a girlfriend and a new child”) he remained by her side for eight years without getting a divorce and when it became clear that Terri’s condition was not going to improve and knowing what he did about her wishes he petitioned the court to act as surrogate to decide what to do.

“Rather than make the decision himself, Michael followed a procedure permitted by Florida courts by which a surrogate can petition a court to act as a ward’s surrogate and determine what the ward would decide to do. Michael took the position that, based on statements Terri made to him and others, Terri would not wish to continue life-prolonging measures. The Schindlers took the position that Terri would continue life-prolonging measures. Under this procedure, the trial court becomes the surrogate decision-maker, and that is what happened in this case.”

The trial court in this case held a trial on the dispute. Both sides were given opportunities to present their views and the evidence supporting those views. Afterwards, the trial court determined that, even applying the “clear and convincing evidence” standard — the highest burden of proof used in civil cases — the evidence showed that Terri would not wish to continue life-prolonging measures.

But then it seemed as if every conservative and religious right-wing politico (most of whom had never heard of Terri Schiavo before this month) including the ultra conservative National Right to Life Coalition saw fit to intrude into what was previously a tragic, private family dispute in order to utilize this case to further their agendas.

The Florida legislature passed a law allowing the Governor to have the power to order her feeding tube to be reconnected, which he did and it was. Now lawyers for Michael Schiavo are trying to convince the court that this new law is unconstitutional . . . . What a friggen mess!

The Medical Issues;

Most people seeing this case for the first time on the news have seen the video clips of Terri that her family has released. What you see is a smiling woman reaching for her mother. There is no possible way that this woman could be in a “persistently vegetative state” as the court and doctors say she is! Right? The problem here is that people are confusing the concept of “coma” where a patient is completely unresponsive to stimuli with “persistent vegetative state” where the patient has intact reflexes (such as movements and facial expressions) but no awareness or conscious thought. In hearing testimony from five physicians (two for Michael, two for Terri’s parents, and one independent), the court concluded that there was no convincing evidence that Terri was capable of any conscious thought;

At first blush, the video of Terry Schiavo appearing to smile and look lovingly at her mother seemed to represent cognition. This was also true for how she followed the Mickey Mouse balloon held by her father. The court has carefully viewed the videotapes as requested by counsel and does find that these actions were neither consistent nor reproducible. For instance, Terry Schiavo appeared to have the same look on her face when Dr. Cranford rubbed her neck. Dr. Greer testified she had a smile during his (non-videoed) examination. Also, Mr. Schindler tried several more times to have her eyes follow the Mickey Mouse balloon but without success. Also, she clearly does not consistently respond to her mother. The court finds that based on the credible evidence, cognitive function would manifest itself in a constant response to stimuli.

Even though there is no technical way to measure or evaluate conscious thought there is the additional evidence of the CAT scan of Terri’s brain that proves that the critical areas of the brain necessary for conscious thought (the cortex) is either gone or severely damaged. This scan is consistent with Terri’s clinical presentation. She has intact reflexes (purposeless movements, breathing, digestion, temperature regulation) that only require the most basic structures of the brain, the brain stem, and the spinal cord to be intact in order to function. Given the evidence of the clinical exam and the head scans and the fact that she has been in this state for over 10 years without any change, the likelihood that Terri has any self awareness or conscious thought to any extent is slim to none.

We don’t know for sure because there is no direct way of measuring this and conservatives and “right-to-life” proponents will cling to this uncertainty as their argument for keeping these patients alive. But this is a closed argument because it cannot be currently proven 100% that there is no “Terri” inside her body despite the large amount of evidence that makes this highly unlikely.

The Legal issues;

There are volumes of material that has been written about the moral and ethical dilemmas of people in persistent vegetative states and whether or not to allow them to die. This web site has a very good outline of the various arguments, most of which are beyond the scope of my single post. But no matter what you believe as to the ethical validity of discontinuing life support in these patients, one thing is clear. Individual cases need to be decided in the courts and not in legislatures. Part of the reason we have court systems is for this very purpose, to decide difficult cases.

Many conservatives fear that cases such as this will set a precedent that may lead to a slippery slope. They fear that we will be questioning whether to allow those patients such as the mentally retarded or those who have less brain damage than Terri to live or die (even though this has not happened since the first cases of withdrawing support from patients in a vegetative state appeared in the 1970s).

But what about the precedent that the Florida legislature sets? We could certainly see a slippery slope here! The next time the family of an elderly patient with end-stage Alzheimer’s disease who does little more than what Terri Schiavo does and must be fed through a tube decides to allow their loved one to die, what is to stop the legislature from stepping in and stopping it?!

What is to stop the legislature from stepping in and altering the medical care of patients in cases where the conservative majority finds it objectionable (late term abortions, sterilization, the discontinuing of treatment for terminal diseases)? What is to stop any single family member who disagrees with the rest of the family on the care of a loved one from going to his/her state legislator and asking them to sponsor a bill to force whatever treatment they want? The Florida state legislature has overstepped it’s authority in bypassing it’s own court system and forcing medical care on a single patient in a single case.

Besides, I find the conservative’s opinion in this case to be very disingenuous. Would such attention have been focused on Terri if she had been a homeless minority drug addict who had suffered a cardiac arrest as a result of smoking crack cocaine and who was now a ward of the state? It is also very ironic that the conservatives who claim that there might be a slight chance that Terri has conscious thought are the same group who are so quick to dismiss the possibility that any murderer on death row might in fact be innocent or that we as a country have executed innocent people! It would seem that for the conservatives at least, everyone has a “right-to-life” but some people have more of a right to life than others.

So now we are left with another “right-to-die” debate that should never have happened. This case is a very difficult one because Terri didn’t leave any written living will. However, all the legal steps and procedures that are in place to help decide such cases were followed and the court sided with Michael. As her husband, Michael has every right to act as surrogate and guardian for his wife and to make decisions based on what he believes she would want and what would be in her best interests. This is both a legal right and obligation that is included in the legal institution of marriage. Yet another irony is that these conservatives who are so opposed to “gay marriage” because it would threaten the validity of the institution of heterosexual marriage found it quite easy to interfere in this case and negate Michael’s rights and obligations as husband.

What about Terri’s right? Yes, what about her “right to die” and her right to decide how she would want to spend her life? In her current condition she is unable to express her wishes (if she in fact is capable of having wishes at all). The courts have already heard the arguments and have made a decision. It is a travesty that any government would step in to intervene on any single case. It’s a case of political bravado that makes any conservative legislator (and the Gov.) look good in the eyes of the voters but not a single politico will spend a second of their lives in Terri’s shoes nor caring for her daily and watching a horrendously slow death and decay as the years drag on. Thank God I don’t live in Florida where the government decides when and how it will allow people to die!