In bioethics class this week, we discussed the “case” of <a href="“>Don Cowart, a Texas man who was badly burned in a propane explosion in 1973. Cowart begged to be killed or allowed to die, from the moment he was discovered lying in the dirt, third degree burns over 65% of his body, and for months and even years afterwards, during the painful intensive care and rehabilitation process. The Cowart case is usually understood in the context of patient rights. In our textbook, it appears in the section on “Decision Making for Once Competent Patients”, and indeed, it is presented as a textbook case of failure to respect patient autonomy. Cowart may not have had decision making capacity in the initial minutes or days, but surely, his right to determine the course of his own medical care should have been restored shortly thereafter.

The author of the case in the textbook is Dr. Robert White, the first psychiatrist to declare Cowart competent, and more importantly, the one person who was willing to find outside legal help to end Cowart’s nightmare of being treated as a nonperson.

White is one of the few good guys in the story, and his account is interesting and well-written. It’s followed by two bioethcists’ analyses. But like every clinical ethics case, the narrative reflects the viewpoint of the writer, including what he takes to be important, and omitting what he doesn’t.

For this reason, I had my students view a video of Cowart discussing his experience filmed at the University of Virginia in 2002</a>. It’s not just that Cowart has access to a perspective on experiences others lack — which of course, he does — but the details he chooses to include add a dimension of meaning lacking in White’s account. For example,

They did not want an attorney involved so they would not allow me to use the telephone. I ask them to take me to a pay phone on the floor and they said we don’t have any on the burn ward floor. I said, okay, let’s go to the lobby. Every hospital has pay phones in the lobby. They said no. Burn patients can’t leave the burn ward. I said okay, I will use the one at the nurse’s station. I know you got a phone there because I can hear it ringing all the time. And they said, no that is just for hospital staff. Patients aren’t allowed to use it. I said fine. At my own expense I will pay for the local telephone company to put a telephone in my room. And I will call from my room. And they said no, you can’t do that.

To many of my students, who can’t imagine being out of touch for a nanosecond, this is an especially chilling part of the story (although it can’t match Cowart’s descriptions of the gruesome, excruciatingly painful, and often ineffective burn “treatments” which he was forced to undergo). It’s a small detail, the telephone, but it seems to symbolize the powerlessness and dearth of human connection he experienced for so long.

The UVa video (transcript here) is a wonderful resource, because it offers up this “case”, not as a case only, but as, first and foremost, a compelling human story. I don’t think the form of presentation dictates our ethical responses. The moderator at UVa suggested that hearing Cowart tell his own story (one of triumph over adversity, a life well lived despite great odds) might make a listener more apt to think the medical staff was right to keep him alive. It had the opposite effect on me and many of my students. But every case study is a kind of “fiction”, as Tod Chambers has written, and exposure to more perspectives can help deepen our understanding.

Wryly observing that he never thought he would take up poetry as a hobby, Cowart concludes with a poem he wrote himself:

Embrace the day -
hold it close to you -
like the fire and passion of a vibrant, beautiful woman,
feel its warmth and energy flow through you.

Listen with the spirit, and you will hear the emotions of your brother’s heart.
Speak with the spirit, and your brother will hear the emotions of your heart.
And when you and your brother speak and listen to each other with the spirit,
your spirits will touch.

Be real;
step into yourself.
Cling to all that is you;
release all that is not.
For it is here, in the deep blue heaven of these high places,
that we soar on wings that are our own
and ride the currents of our soul.

I’m teaching future physicians — hopefully Maine physicians — in this class. What good is a bioethics course if our case studies eschew personal meaning, push human emotion to the margins, and ignore the importance of human connection?

The hospital where I consult is just a few miles from campus, so it’s easy to have guest speakers. Last year, we had a pediatric intensivist, trauma surgeon, family practice doc, and geneticist. It’s wonderful to hear them talk about ethics dilemmas they have faced, and how important bioethics is to their conception of being a good health care provider.

The one “innovation” in my course is the mock ethics consult. We set aside the last several class meetings (50 minutes each), and students in groups of 5 or 6 put on a case (either a famous one, or one they invent). It’s extremely fun (sometimes the students really get into it, with costumes and accents!) and a great way to put together what they’ve been doing all semester.

Here’s the syllabus:

Fall 2011

Jessica P. Miller, Ph.D.

Associate Professor, Department of Philosophy

COURSE DESCRIPTION: This course is an introduction to ethical issues in health care, aimed not just at students of the health professions, but at anyone who is curious about how biomedical advances call into question our notions of value, of right and wrong, and of the good life.  We will explore specific ethical issues arising from biomedical research and health care practice, including the doctor-patient relationship, informed consent, cloning, genetic screening, physician-assisted suicide, withdrawal of life sustaining care, research with human subjects, and justice in health care allocation.

COURSE OBJECTIVES:  To acquaint students with contemporary philosophical approaches to bioethical issues; to help students recognize the moral dimensions of issues in health care; to introduce them to various modes of analysis and response to these issues; and to give students the opportunity and some of the skills to begin their own systematic critical reflection on these issues.  By semester’s end, students should be able to articulate their own defensible positions on some of the most pressing issues in bioethics today.

REQUIRED TEXT: Bonnie Steinbock, John Arras, Alex London eds, Ethical Issues in Modern Medicine, 7^th Ed., McGraw-Hill, 2008.

EXPECTATIONS OF THE STUDENT: Students will be expected to…

1. Class participation: Students are expected to treat faculty and other students with respect. Do not disrupt class by arriving late, leaving during class, or chatting with friends. Be attentive to comments made by the instructor and other students. Do not sleep, do other coursework, text, surf, wear headphones, game, or read non-course materials while class is in session. Set cell phones to silent. Do not use abusive or vulgar language, and be sensitive to the way your comments may be interpreted by other students. Laptop use is a privilege that will be revoked if your laptop use is disruptive to me or to other students. If you find a fellow student’s laptop use distracting, please let me know. Students who violate these expectations will be asked to leave.

2.  Take three in-class examinations which will be composed of short answer and essay questions based on assigned readings and class discussions. Study guides will be distributed a few days prior to each exam. No make-ups for missed exams will be given, except under extreme circumstances. Make-up exams must be taken within one week of the missed exam. These exams each count for 25% of your course grade. There is no final exam.

3. Case analysis and presentation. Groups of students will role play members of an ethics committee consulting on a challenging case (which they discover or devise) with the patient and/or family member. Each group member will choose a case and write a 5 page position paper on it from his or her perspective as a physician, nurse, social worker, lawyer, chaplain, ethicist, etc. Then the group will engage in presentation and discussion of the case to the class. Students will be graded individually based on (a) their position papers and (b) their contributions to the group presentation. (25% of course grade).

A Note on Academic Integrity: Plagiarism or cheating will result in a grade of F for that assignment or exam. This includes falsifying attendance records. A student’s second violation will result in automatic failure of the course.  Plagiarism and cheating are violations of the University of Maine Student Conduct Code.  Please see the University of Maine Student Handbook, for definitions of “plagiarism” and “cheating”, as well as University policies relating to academic integrity.

A Note on Accommodations: If you wish to request an accommodation for a disability, please contact the instructor and the Coordinator of Services for Students with Disabilities (East Annex, 581-2319), as early as possible in the semester.

SCHEDULE OF READINGS AND ASSIGNMENTS:

This schedule is subject to change. Students are expected to check the course folder on First Class, where I will post updates and important course-related information. In the event of an extended disruption of normal classroom activities, the format for this course may be modified to enable its completion within its programmed time frame. In that event, you will be provided an addendum to the syllabus that will supersede this version.

M 8/29                        Introduction: Ethical Theories, Principles of Bioethics

I. FOUNDATIONS OF THE HEALTH PROFESSIONAL-PATIENT RELATIONSHIP

Autonomy, Paternalism, and Medical Models

W 8/31                        Hippocratic Oath

*Modern version:

http://www.pbs.org/wgbh/nova/doctors/oath_modern.html

Beneficence Today or Autonomy (Maybe) Tomorrow? + 2 Commentaries

F 9/2                        Why Doctors Should Intervene

Four Models of the Physician-Patient Relationship

Informed Consent and Truth-Telling

W 9/7                        Antihypertensives and the Risk of Temporary Impotence

Informed consent—Must it Remain a Fairy Tale?

F 9/9                         Bioethics in a Different Tongue

Offering Truth

Conflicting Roles and Responsibilities

M 9/12                        Vitaly Tarasoff et al. v. University of California et al….

Please Don’t Tell! + 2 Commentaries

Disclosing Misattributed Paternity

W 9/14                        SARS Plague: Duty of Care or Medical Heroism?

The Lessons of SARS

What Should the Dean Do? + 3 Commentaries

II. ALLOCATION, SOCIAL JUSTICE, AND HEALTH POLICY

Justice, Health, and Health Care

F 9/16                          An Ethical Framework for Access to Health Care

Equal Opportunity and Health Care

M 9/19                         Freedom and Moral Diversity

Social Determinants of Health: The Solid Facts

W 9/21                        Why The United States is Not Number One in Health

Justice, Health, and Healthcare

F 9/23                        Opportunity is Not the Key

Allocating Scarce Resources

M 9/26                         Bone Marrow Transplants for Advanced Breast Cancer: Christine deMeurers

Justice and the High Cost of Health

Imposing Personal Responsibility for Health

Responsibility in Health Care: A Liberal Egalitarian Approach

Organ Transplantation: Gifts Versus Markets

W 9/28                        The Case for Allowing Kidney Sales

An Ethical Market in Human Organs

Body Values: The Case Against Compensating for Transplant Organs

F 9/30                        **Test 1

III. FORGOING LIFE-SUSTAINING TREATMENT, AND EUTHANASIA

Decisional Capacity and the Right to Refuse Treatment

M 10/3                         State of Tennessee Dept. of Human Services v. Mary Northern

Deciding for Others: Competency

W 10/5            Keith Burton, “A Chronicle: Dax’s Case as it Happened”

Robert B. White, Commentary, H. Tristram Engelhardt, Commentary

Choosing for Once-Competent Patients

F 10/7                        Erring on the Side of Theresa Schiavo

“Human Non-Person” Terri Schiavo, Bioethics, and Our Future

The Severely Demented, Minimally Functional Patient

Quality of Life and Non-Treatment Decisions for Incompetent Patients

Physician Assisted Death

W 10/12             Death and dignity

Physician-Assisted Suicide: A tragic View

Assisted Suicide: The Philosophers’ Brief, Introduction

F 10/14                        Atul Gawande, “Letting Go”, The New Yorker

online: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande

M 10/17                        *Case Discussions

IV. REPRODUCTION

Assisted Reproduction

W 10/19             Presumptive Primacy of Procreative Liberty

Instruction on Respect for Human Life

F 10/21                        What are Families For?

Grade A: The Market for a Yale Woman’s Eggs

Payment for Egg Donation

V. Genetics

Prenatal Genetic Testing

M 10/24            Prenatal Diagnosis and Selective Abortion: A Challenge to Practice

Disability, Prenatal Testing and Selective Abortion”

Case Study on Molly and Adam Nash

Therapeutic cloning and stem cell research

W 10/26                        Embryo Ethics

Acorns and Embryos

Surplus Embryos

F 10/28                        **Test 2           

VI. EXPERIMENTATION ON HUMAN SUBJECTS

Born in Scandal: the Origins of U.S. Research Ethics

M 10/31             Nuremburg Code

The Jewish Chronic Disease Hospital Case

The Willowbrook Hepatitis Studies

W 11/2                        Racism and Research

The Belmont Report

The Ethics of Randomized Clinical Trials

F 11/4                        Ethical Difficulties with Randomized Clinical Trials

Of Mice but Not Men

A Response to a Purported Ethical Difficulty…

Ethical Issues in International Research

M 11/7                        Unethical Trials of Interventions…

AZT Trials and Tribulations

The Ambiguity and the Exigency…

W 11/9                        Case discussion

M 11/11                        Class cancelled – Professor at conference

VII. EMERGING TECHNOLOGIES

Emerging Technologies

M 11/14                        The Designer Baby Myth

Applications of Behavioural Genetics

Neuroethics

Enhancement

W 11/16                        Growth Hormone Therapy for Disability of Short Stature

The Genome Project, Individual Differences, and Just Health Care

F 11/18                        Genetic Interventions and the Ethics of Enhancement of Human Beings

The Case Against Perfection

Anyone for Tennis, at the Age of 150?

M 11/21                        **Test 3

VIII. GROUP CASE PRESENTATIONS: M 11/2 -

1. “The noncompliant substance abuser”. By: Cassel, C., LaPuma, J., Hastings Center Report, Mar/Apr91, Vol. 21, Issue 2:

JR is a combative, young white female who presents in the Emergency Room disoriented, with a fever, chills, and a cough productive of yellow sputum. She complains of chest pain and shortness of breath.

JR is well known to the medical staff. She has had three previous admissions with endocarditis and interrupted her clinical course on two of those admissions by leaving the hospital against medical advice. On her most recent previous admission, her mitral valve was replaced with a porcine prosthesis. She also tested HIV positive (but was and remains asymptomatic for AIDS).

JR’s social history includes occasional prostitution, IV substance abuse (cocaine), and needle-sharing. Although JR had been referred repeatedly to the substance abuse shelter, she refused counseling.

With a diagnosis of pneumonia, Staphylococcus aureus bacteremia, and a mitral valve vegetation and mild insufficiency, JR is placed on appropriate IV antibiotics and hospitalized.

{noncompliance —> bad things happen}

JR demands another valve, saying it would violate her civil fights to be refused. Would it be wrong to refuse her?

2.”Do cardiologists and cardiac surgeons need ethics? Achieving happiness for a drug user with endocarditis”. By Bromage DI, McLauchlan DJ, Nightingale AK. Heart. 2009 Jun;95(11):885-7. Epub 2009 Jan 23.

Ethical dilemmas are commonplace in clinical cardiology. There has been a recent
focus on ethical behaviour of cardiologists and debate about resource allocation
and cost-effectiveness of new technologies. The case of an intravenous drug
addict, with native aortic valve endocarditis complicated by a cerebral abscess
and severe aortic regurgitation, is presented to illustrate some common ethical
and moral dilemmas. The predominant theories in medical ethics, including the
“Four-Principles Approach,” is discussed, and a model to translate these ethical
theories into a clinical decision-making tool is presented.

3. We did not read this one as a group, but in case you are interested, this third article is relevant:

“Ethical obligation of surgeons to noncompliant patients: can a surgeon refuse to operate on an intravenous drug-abusing patient with recurrent aortic valve prosthesis infection?” By DiMaio JM, Salerno TA, Bernstein R, Araujo K, Ricci M, Sade RM, Ann Thorac Surg. 2009 Jul;88(1):1-8.

4. “To Friend or Not to Friend: Is That the Question for Healthcare?” by Summer Johnson McGee. American Journal of Bioethics 11 (8):2-5, August 2011.

Discussion:

Sometimes I share articles that are relevant to cases we have seen, and the three articles on noncompliance fit that description. It is always difficult to know how to factor probable nonadherence. When a doctor refuses to do a procedure on that basis, our ethics team often gets called. We have a high percentage of substance abusing patients, as the mental health services in our area serve 2/3 of the state.

Lance Stell’s position probably comes closest to my own on the issue and how to address it:

The controversial part of the argument concerns whether noncompliant, self-destructive behavior can be a relevant causal factor in judging efficacy. If it can, how much evidence must one have before the principle justifies refusal? Some ethicists think that a patient’s noncompliant, self-destructive behavior can never serve in an argument to justify refusing an intervention. I think this absolutist position is too strong.

That said, it is of the utmost importance to be sure everyone is on the same page with regard to understanding that this patient is presenting with two or perhaps three chronic (and maybe terminal) conditions: (a) whatever condition got her here, (b) her addiction, and often (c) mental health issues, such as mood disorders. We may have to do some education in the early part of a consult around addiction as an illness, not a moral or personal failing.

It is also vital to be clear on how the assessment of compliance is being made. For one thing, is this patient being supported, for all of her conditions, to the absolute best of our ability? If not, then it is not fair to use her past nonadherence against her. For another, how are we defining “nonadherence”? On what basis, exactly, is the judgment that this particular treatment (say, a heart valve) will be “useless” being made? It helps to substitute another example of nonadherence, like a patient with uncontrolled diabetes, to make sure predictions about a substance abusing patient’s likelihood of adherence are not being influenced by prejudice.

It’s also important in such cases to include the patient in the ethics process from the beginning. This group of patients is highly alert to bias and unfair treatment, often for good reason. The ethics process is for her, just like any other process we undertake on behalf of her health. The last thing we need to do is further disempower this patient, and cut off our most important source of information about who she is and what she wants and what she feels capable of achieving post discharge.

And finally, are clinicians being supported? Such patients, especially if, as so often happens, they are seen again and again by staff, can be very challenging. On some occasions, our consults have benefited the staff as much as anyone else. They needed to vent, to share frustrations, and their feelings of powerlessness. We sometimes set aside a portion of the meeting just for this purpose.

On the “Friending” article, it was short, but we agreed with McGee that the AMA guidelines on the use of social media are unhelpful, and we appreciate her more concrete suggestions, such as rigidly separating an online professional profile from a personal one. Right now, our hospital is trying to figure out how to realize the benefits of social media without suffering the costs. As McGee notes, many hospitals err on the side of caution, and ours, which has, for example, blocked social networking sites from the intranet, may be doing just that. It’s hard to tell from my position, honestly. I’m not privy to what kinds of problems Facebook and other sites may have created. One thing is clear: social media is not going away, and while McGee’s suggestions are a good start, I wonder if anyone with a Blackberry or iPhone can really be said to be able to separate professional from personal lives anymore.

Although I periodically pledge to use the word “No”, it rarely sticks, which is why I find myself writing a blog post on Stiff: The Curious Lives of Human Cadavers, by Mary Roach (W. W. Norton, 2003). Later today I will lead a discussion of Stiff with a group of local high school honors students who are visiting my university for the day. We don’t have a medical school, so the campus bioethicist is going to have to suffice.  Luckily, a forensics expert has been booked after me, so I don’t have to say much about the science.

Stiff, an outgrowth of a Salon.com column, is Roach’s first book. She has since published three humorous popular science books, Spook (about the afterlife), Bonk (sex), and Packing for Mars (space travel). Stiff investiates what happens to human cadavers, whether they are donated to science, buried, cremated, or lost in airplane wreckage. It’s a gross, illuminating, and entertaining read, widely praised, and widely bought (it’s a New York Times bestseller).

Stiff is organized into chapters, each of which investigates a different cadaveric fate:

Table of Contents

1. A Head Is a Terrible Thing to Waste:  Practicing surgery on the dead
2. Crimes of Anatomy: Body snatching and other sordid tales from the dawn of human dissection
3. Life After Death:  On human decay and what can be done about it
4. Dead Man Driving:  Human crash test dummies and the ghastly, necessary science of impact tolerance
5. Beyond the Black Box: When the bodies of the passengers must tell the story of a crash
6. The Cadaver Who Joined the Army:  The sticky ethics of bullets and bombs
7. Holy Cadaver:  The crucifixion experiments
8. How to Know if You’re Dead:  Beating-heart cadavers, live burial, and the scientific search for the soul
9. Just a Head: Decapitation, reanimation, and the human head transplant
10. Eat Me:  Medicinal cannibalism and the case of the human dumplings
11. Out of the Fire, into the Compost Bin:  And other new ways to end up
12. Remains of the Author:  Will she or won’t she?

Some chapters were weaker than the rest, but if you find yourself getting bored you can skip ahead, since there is no thematic unity to the Stiff, beyond the subject matter. The chapter titles give away the book’s abundant humor, not all of it successful. Perhaps because the topic is so inherently unsettling, Roach tends to shoot for irreverence. Roach has a “bloggy” writing style, feeling free to insert herself into the proceedings at random, sometimes to great effect, sometimes distractingly. What also makes the book feel “webby” is her amassing of factoids culled from so many different sources: historical, present day news accounts, her own interviews or research. This makes for a snappy read, with bits of odd information coming at you with every new sentence.

This is an undeniably gross  book. I think I have a pretty sturdy stomach, but even mine turned at times, as when Roach describes a corpse lying in the grass outside a U Tennessee facility that studies decomposition:

Squirming grains of rice are crowded into the man’s belly button. It’s a rice grain mosh pit. But rice grains do not move. These cannot be grains of rice. They are not. Entomologists have a name for young flies, but it is an ugly name, an insult. Let’s not use the word “maggot.” Let’s use a pretty word. Let’s use “hacienda.”

Arpad explains that the flies lay their eggs on the body’s points of entry: the eyes, the mouth, open wounds, genitalia. Unlike older, larger haciendas, the little ones can’t eat through skin. I make the mistake of asking Arpad what the little haciendas are after.

Arpad walks around the corpse’s left foot. It is bluish and the skin is transparent. “See the [haciendas] under the skin? They’re eating the subcutaneous fat. they love fat.” I see them. they are spaced out, moving slowly. It’s kind of beautiful, this man’s skin with these tiny white slivers embedded just beneath its surface. It looks like expensive Japanese rice paper. You tell yourself these things.

Of course, Roach’s question is hardly a “mistake” — it’s the whole point of her book, and her frequent deflating references to her investigative skills will seem either cute or needlessly self-deprecating, depending on your point of view.

Why would a reader not deeply intrigued by biological science want to know all this? I’m not sure. While Roach is never disrespectful of her nonliving or living research subjects, I confess that the episodic nature of the book and the tongue-in-cheek approach made me feel as if the book appeals mostly to the morbidly curious.

Roach writes:

We are biology. We are reminded of this at the beginning, and the end, at birth and at death. In between we do what we can to forget.

So, I suppose one effect of reading  Stiff – which is resolutely materialist — is to nudge us to remember that we don’t need our bodies when we’re dead, and to encourage us to make some decisions about what to do with our corpses to minimize harm and maximize benefit for society. But that can’t be right, since Roach herself says that while we can certainly let our loved ones know what we prefer, they are under no obligation to do what we ask, since it is they, and not us, who have to live with the consequences. Moreover, as Roach indicates with regard to obtaining consent for organ donation, sometimes more information (like, that if you donate your body to science, you might end up a head in a tray for a plastic surgeon to practice a facelift on, or you might end up full of maggots in a grassy field) makes consent harder to obtain, and I can honestly say that “giving my body to science” never seemed so dreadful as it now does. Am I less likely to make that choice? Maybe.

The other effect of reading Stiff might be lauding the unlauded: the people who donate their bodies, and the researchers who do the gruesome and difficult work of studying them so we can have better trained physicians, safer cars, and answers to important questions about what makes a plane crash or when a murder took place. After all, Roach refers to the cadavers are “our superheroes”:

They brave fire without flinching, withstand falls from tall buildings and head-on crashes into walls.You can fire a gun at them or run a speedboat over their legs, and it will not faze them. Their heads can be removed with no deleterious effect. They can be six places at once. I take the Superman point of view: What a shame to waste these powers, to not use them for the betterment of humankind.

But that can’t be it, either, for a couple of reasons: one, Roach comes very close to making fun of these people and corpses herself (of corpses: “Being dead is absurd. It’s the silliest situation you’ll find yourself in. Your limbs are floppy and uncooperative. Your mouth hangs open. Being dead is unsightly and stinky and embarrassing, and there’s not a damn thing to be done about it.”) and two, because the quacks, eccentrics, and sadistic researchers (the body snatchers, the creepy or greedy morticians, the guy who crucified bodies to determine whether the Shroud of Turin was a fake) get equal time with the good guys.

The word “dignity” appears fourteen times in the text (and in most reviews of the book, come to think of it). Preserving the dignity of the cadavers is major concern of many of the people Roach interviews. In Stiff’s first, very compelling chapter (one that would work well for pre-med undergrads), Roach marvels at the dignity with which medical students and professionals treat their cadavers (draping their faces, naming them, moving their limbs with gentleness, holding a memorial service for them). But, in a later chapter discussing the environmental benefits of composting dead human bodies, dignity seems less important:

To a certain extent, of course, dignity is in the packaging. When you get right down to it, there is no dignified way to go, be it decomposition, incineration, dissection, tissue digestion, or composting.

And, indeed, Roach has already said of cadavers at the start of the book, “Their fundamental feature is that they lack dignity.”

Not everyone who reads this book is going to approach it the way I would, but to me, this kind of tension cries out for exploration. Roach talks about “her first cadaver” — her mother. She says, emphatically,

My mom was never a cadaver. No Person is. You are a person and then you cease to be a person, and a cadaver takes your place. My mother was gone. The cavader was her hull.

So, why bother with dignity? Whose dignity is at issue? Certainly not the “hull’s”. Is it the researchers’ dignity? The dignity of surviving loved ones? The dignity of the person who once “inhabited” the hull? Part of the sense of the absurd that comes from dealing with our dead is this very issue of the moral status of the corpse, and it would have added a deeper dimension to the book if Roach had at least raised the issue.

Roach seems very clear in the quote above — “you are a person and then you cease to be a person”, but in a later chapter (Eight, which  would work well for undergraduate bioethics students), this simple story gets complicated. I very much regret that Roach used the term  “beating heart cadavers” instead of the more widely used and appropriate “brain dead cadavers”, but her point is still well taken: brain death looks a lot like life, what with the breathing and the heart beating, and the warm skin, and the ability to gestate a fetus, and… you get the idea. What does it mean that we remove vital organs from brain dead bodies? What allows us to say the death occurred when the brain stopped functioning, instead of when the heart stopped? The determination of death by neurologic criteria is still relatively new and, in cycles, controversial. Exploring what makes it so would have been worthwhile*, but perhaps would have sacrificed the “coffee table” book feel of Stiff.

Since I am looking at ethical issues, I’ll just throw out one more: the treatment of non-human animals. For many researchers, animals are a poor second best to the use of human cadavers, but they can get away with things using animals that would never pass an IRB, such as the whole head (whole body? Another philosophical question!) transplants discussed in chapter nine. Without moral judgment or comment, Roach recounts a veritable catalog of horrors visited upon animals (live vivisection being perhaps the mildest) performed for the purpose of answering questions meant to benefit humans (sometimes the “benefit” is mere satisfaction of curiosity). To me, this cries out for at least a paragraph of comment. Why should we preserve the dignity of a dead human body, but feel free to execute animals in every fashion imaginable?

To sum up, Stiff is a quick read, with lots of interesting information about a subject few know well, but perhaps should. It’s not particularly deep or thoughtful, but it’s fun, and often funny, and it could certainly serve as a springboard for the kinds of questions a more analytical person might want to ask.

*Actually, exploring nonheartbeating organ donation (cases in which the patient is taken off life support, the heart is allowed to stop for a few minutes — a mere three in some places –  the patient is declared dead, and then everything is started up again so the organs can be maintained and removed) would have been worthwhile, too, as it raised many of the same questions about when life really ends, the balance between social good and individual life, etc.

1. “Shaping Patients’ Decisions“, J. S. Swindell , PhD; Amy L. McGuire , JD , PhD; and Scott D. Halpern , MD , PhD, CHEST 2011; 139(2):424–429

Many physicians struggle to strike an acceptable balance between respecting patient autonomy and guiding patients’ decisions toward what is in their best interests based on their expressed values and long-term goals. Over the past 40 years, the ethical principle of respect for autonomy has gained primacy in Western medicine, but judgments about the appropriate dose of influence on patient decisions have been clouded by misconceptions about patient autonomy. In this article, we consider three such misconceptions with the goal of helping physicians to optimally promote their patients’ interests.

The authors claim that most patients are not autonomous. They lack at least one of the three components of autonomous action: (1) intention, (2) understanding, and (3) absence of controlling influence.

The authors cite several recent studies of patients, outpatients, and surrogates which suggest that they would prefer to have some decision making help from clinicians. Shared decision making is indeed making a comeback. At the ASBH conference in October, I attended a clinical ethics advanced skills workshops, which featured a long session on shared decision-making.

I am not sure I see shared decision making as in tension with autonomy. In fact, it may be a prerequisite for patient autonomy in many cases. But the cautions suggested by the authors are well wroth noting.

2. “Can We Improve Decision-Making for Incapacitated Patients?“, ANNETTE RID AND DAVID WENDLER, Hastings Center Report, Sept-Oct 2010

When patients cannot make their own treatment decisions, surrogates typically step in to do it for them. Surrogate decision-making is far from ideal, of course, as the surrogate may not know what the patient prefers or what best promotes her interests. One way to improve it would be to arm surrogates with information about what patients in similar circumstances tend to prefer, allowing them to make empirically grounded predictions about what their patient would want.

The authors identify 6 ethical goals of surrogate decision making:

1) promote the patient’s clinical interests;
2) enable the patient to control how he or she is treated;
3) provide treatment consistent with the patient’s preferences and values;
4) respect the patient’s preferences for how treatment decisions are made;
5) respect and help the patient’s family and loved ones; and
6) promote timely decisionmaking.

They then contend that these goals are often not met in practice. As is now typical of the literature (see above article), several cognitive biases and external imitations are identified which prevent surrogates from making good decisions for patients. After briefly canvassing a few alternatives to current practice, such as having ethics committees make decisions for patients, the authors recommend joint decision making.

3. “Determinants of Medical Expenditures in the Last 6 Months of Life“, Amy S. Kelley, MD, MSHS; Susan L. Ettner, PhD; R. Sean Morrison, MD; Qingling Du, MS; Neil S. Wenger, MD, MPH; and Catherine A. Sarkisian, MD, MSHS,

Conclusion: Patient characteristics, such as functional decline, race or ethnicity, chronic disease, and nearby family, are important determinants of expenditures at the end of life, independent of regional characteristics.

Of particular interest is this finding:

These data suggest that patient preferences, as documented in living wills, are poorly correlated with treatment delivered, which is consistent with other published data (16, 46–48).

1. A new article from the Journal of General Internal Medicine, Hospital Do-Not-Resuscitate Orders: Why They Have Failed and How to Fix Them by Jackie Yuen, Carrington Reid, and Michael D. Fetters.

If you do not have access the the journal, read this blog post summarizing it, and offering some commentary, at the excellent Geri-Pal Blog.

This article and subsequent discussion of recent ethics cases has led our consult group to recommend to our ethics advisory committee that we explore the possibility of beginning a QI process around DNR orders — especially looking at when and how they are discussed, and by whom. What do we do well? How might be do it even better?

2. From Health Agenda, the John A Hartford Foundation blog, Can Good Care Produce Bad Health?, a moving and illuminating account by nurse Amy Berman of her diagnosis and treatment for Stage IV Breast Cancer. A snippet:

Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.

Many interesting responses, some addressing the question of what counts as overtreatment.

3. “ASBH Goes forward with Certification for Clinical Ethics Consultants”, a short summary of the move and what it means, from the 12/10 Medical Ethics Advisor.

The proposed certification process for ethics consultants could have a major impact on our hospital. Right now, we have five team leaders for consults, only one of whom — me — could be certified without further study or experience. Will folks have to pay out of pocket for certification or will hospitals pick up the tab? If the former, does this mean fewer nurse and social worker clinical ethics consultants and more doctors and administrators? Will current, experienced participants have the time and inclination to make this effort? Again, this could be disproportionately burdensome. I worry that certification will lead hospitals like ours which have a small team model to move to a single consultant model, and, noting how utterly dominated ASBH is by ethicists at large academic medical centers in urban areas, I worry about the implications for best practices of a one-size-fits-all national ethics training.

4. A case throwing out a MOLST (New York’s version of POLST) was recently decided in NY. Read the case summary at the Daily Record (Rochester, NY), January 25, 2011.

In this case, a judge threw out all MOLSTs* of a 93 year old woman suffering from advanced Alzheimer’s disease because it conflicted, according to two of the patient’s children, with her Roman Catholic beliefs.  Matter of the Application of Carole Zornow, Judge Polito:

The court provides the legislative suggestion that the FHCDA** be revised to set forth the sanctity of life as the main ethic and allow quality of life determinations be limited to those who have specifically indicated wish therefor, under the standard of proof required by the O’Connor case. In conclusion, the court cites to Justice Ritholtz in Borenstein, where he warned that [w]e must never forget that when the quality of life replaces the sanctity of life, society has done itself irreparable harm.

* MOLST
** FDHC

5. For fun: An Alternative Pain Scale.

Here is a snippet from Esther’s moving presentation:

So here is some language about death from poets. Poets have thought about death because that is their job to do so. They help us find words for things that are to difficult for us to say. They are, according to Shelley, the unacknowledged legislators of the world and we shy away from t hem at our peril. I have taught literature in colleges and universities. Literature is my area of special study and interest. I’m going to read some poems about dying and death with you. I ask that you take them with you, read them, reread them, and take them to your heart as you care for and watch with those who are dying. Words are living things. They enter into the stream of life and they go out of it, just as people do. The words in these poems have been selected and arranged to evoke participation by the reader. Do not expect them to surrender all of their treasure on the first or second encounter any more than you would expect a person to do so. Time and connectivity will allow them to release their special messages about dying and death. I offer them to you in special memory of a bygone day when people weren’t too busy to care for those they loved or believed themselves to be inadequate to the task; when they did not leave the last moments to professionals, and when death came as a lover, as friend; or, contrariwise, when death came as suffocating darkness.

As always, I go first to Shakespeare. In Act II, Scene 2 of Julius Caesar, Shakespeare causes Julius Caesar say to his wife, Calpurnia:

Cowards die many times before their deaths;
The valiant never taste of death but once.
Of all the wonders that I yet have heard,
It seems to me most strange that men should fear,
Seeing that death, a necessary end,
Will come, when it will come.

Esther shared three poems:

Do Not Go Gentle into That Good Night, by Dylan Thomas

Because I Could Not Stop For Death, by Emily Dickinson

And a third poem I had never heard, which was perhaps my favorite, When Death Comes by Mary Oliver:

When Death Comes

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measle-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement,
I was the bridegroom, taking the world into my arms.

When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument

Mary Oliver

My own contribution to the event was much less poetic, as you might imagine. As I thought more about communication issues at the end of life – the source of so many of our ethics consults — it occurred to me that the issue is that many of us are trying not to talk about death. So I organized my talk around a list of reasons why it is hard to talk about death:

1. Clinically: As a clinician it seems disrespectful to discuss the “meaning and value” of death. The preciousness of life underlies all clinical disciplines and preservation of life is a paramount clinical goal. Understandably, for clinicians death is the enemy to be conquered and when it occurs it represents defeat, failure.

2. Philosophically (from Ira Byock, see below for link):

Phenomenologically, death is non-being. The essential nature of life entails activity, purpose and making order from disorder. Death is the antithesis of life. Non-life is inactive and despite its stillness, death is chaos. Life generates it’s own meaning. In contrast, on its face death appears devoid of meaning and value.

3. Personally: It makes us sad (lose human relationships) and nervous (makes us think of our own death)

Heidegger’s inauthentic mode of being unto death is a closed, denial of death. A tranquilizing, putting off death. Not facing up to it as a possibility. Such a state is characterized and influenced by anxiety, conditioning, custom and habit, emotions, patterns of thought, attitudes, and conformance to the norm. Inauthenticity shows itself in an evasive flight from death, which is characterized by (1) concealing reality, (2) hedging or prevarication, (3) drawing to the ordinary, (4) using soothing cliche´’s, and (5) separating.

(From “Being-With-Dying: Authenticity in End of Life Encounters”,  Virginia L. Seno, PhD, RN,  AM J HOSP PALLIAT CARE September 2010 vol. 27, no. 6, 377-38)

4. Politically. Here is a perfect example, in an article from the NY Times, Obama to enact end of life care planning for Medicare, January 26, 2011

When a proposal to encourage end-of-life planning touched off a political storm over “death panels,” Democrats dropped it from legislation to overhaul the health care system. But the Obama administration will achieve the same goal by regulation, starting Jan. 1. Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit. Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.

While the new law does not mention advance care planning, the Obama administration has been able to achieve its policy goal through the regulation-writing process, a strategy that could become more prevalent in the next two years as the president deals with a strengthened Republican opposition in Congress.

In this case, the administration said research had shown the value of end-of-life planning.

Advance care planning improves end-of-life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives,” the administration said in the preamble to the Medicare regulation, quoting research published this year in the British Medical Journal.

The administration also cited research by Dr. Stacy M. Fischer, an assistant professor at the University of Colorado School of Medicine, who found that “end-of-life discussions between doctor and patient help ensure that one gets the care one wants.” In this sense, Dr. Fischer said, such consultations “protect patient autonomy.”

Opponents said the Obama administration was bringing back a procedure that could be used to justify the premature withdrawal of life-sustaining treatment from people with severe illnesses and disabilities.

Section 1233 of the bill passed by the House in November 2009 — but not included in the final legislation — allowed Medicare to pay for consultations about advance care planning every five years. In contrast, the new rule allows annual discussions as part of the wellness visit.

4. Culturally: death is defined differently in different cultures and subcultures. The following is from the article: ZEILER, KRISTIN, “Deadly Pluralism? Why Death-Concept, Death-Definition, Death-Criterion and Death-Test Pluralism Should Be Allowed, Even Though it Creates Some Problems”. Bioethics, Vol. 23, Issue 8, pp. 450-459, October 2009.

In 2008 12 year old Mordechai Brody, from Brookly was brain dead in a Washington D.C. hospital. Heart still beat, but docs wanted to declare him brain dead and remove supports. According to experts in Jewish law, there is no consensus within the faith on the medical definition of death. Some Orthodox Jews base it on the absence of brain activity; others focus on whether the heart is beating.

In New York and NJ there are provisions that allow a religious exemption from a declaration of death due to complete cessation of whole brain function:

death of an individual shall not be declared upon the basis of neurological criteria [. . .] when the licensed physician authorized to declare death, has reason to believe, on the basis of information in the individual’s available medical records, or information provided by a member of the individual’s family or any other person knowledgeable about the individual’s personal religious beliefs, that such a declaration would violate the personal religious beliefs of the individual. In this case, death shall be declared, and the time of death fixed, solely upon the basis of cardio-respiratory criteria.

As another example, the Japanese understanding of body and soul is different from the one in the West. In the West, the soul is thought to exist primarily in relation to the mind, whereas the Japanese understanding of the soul implies that the soul is dispersed throughout the body. In line with this reasoning, it was argued that the essence of human beings lies not only in one’s rationality and self-consciousness, but also in one’s body. The brain stem and functions of the brain are less relevant in the Japanese context. The 1997 Japanese Transplantation Law allows for two alternative death concepts.

Death and the meaning of life: The following is from The Meaning and Value of Death, Journal of Palliative Medicine Vol. 5, No. 2, pp. 279-288, May 2002, by Ira Byock, MD. Full text here.

Since, philosophically I cannot know anything with certainty about death, I must accept that death itself may (or may not) be meaningless. Nevertheless, it is apparent that the fact of death profoundly impacts our understanding – and experience – of meaning in life. Although it remains unknowable, death’s relationship to life is essential and as profound as the relationship of darkness to light. Death need not illuminate life;

Awareness of death confronts us with questions that go to the very nature of existence. What is the nature of life? Is there continued existence beyond life? Does life have meaning? What is the meaning of my own life? These questions, asked in an infinite variety of ways, are part of the human confrontation with death.

In a two-phase written survey, 214 university students enrolled in a course on death-related topics were asked to concisely express their feelings about living in a world without aging and death. The assignment was given prior to any readings or course work. Initial responses were 88% clearly positive. Typical written comments were, “You bet! Does it start now?” and “I love it! This makes my day!” Students were then given a written homework assignment with specific instructions to consider and list a) the “effects a world without death would have on other people and society in general,” and b) “the effects a world without death would have on the way you live and experience your own life.” The initial survey question was then repeated. The result was a dramatic reversal of frequencies with 82% giving negative responses and 18% positive. (Kastenbaum, R. A World Without Death: First and Second Thoughts. Mortality, 1: 113-123, 1996)

Expressed concerns about the absence of death on society clustered around issues of overcrowding, mandatory birth control, loss of rules governing human relationships, the conservative influence of massive numbers of elderly, the potential for economic systems to falter (“Kids wouldn’t get their inheritances…”) and the erosion of religious beliefs. Worrisome impacts on individuals’ lives included loss of ambition, loss of meaning, loss of heaven, and less need to be responsible.

Fundamental responsibilities of human beings toward one another are defined by the need to respond to the facts of illness and death and contribute to the meaning and value of individual and communal life. Acting on behalf of society, the clinical professions bear critical responsibilities for caring for those who are dying and bereaved. However, over-reliance on professionals as a means of denying or distancing ourselves from death and grief can diminish the fullness and richness of living and erode the experience of meaning and value in our lives.

The trauma surgeon and nurse, or course, added clinical perspectives, especially in talking with families. But I was too engrossed in listening to be able to write any of it down here.

Alves, SL. A STUDY OF OCCUPATIONAL STRESS, SCOPE OF PRACTICE, AND COLLABORATION IN NURSE ANESTHETISTS PRACTICING IN ANESTHESIA CARE TEAM SETTINGS. AANA Journal. 2005; 73 (6)

Bleakley. A. A Common Body of Care: The Ethics and Politics of Teamwork in the Operating Theater are Inseparable. Journal of Medicine and Philosophy, 31:305–322, 2006

Code of Ethics for the Certified Registered Nurse Anesthetist. Approved by the AANA Board of Adopted by the AANA Board of Directors in 1986. Revised by the AANA Board of Directors in 1992, 1997, 2001, and 2005. © Copyright 1986 American Association of Nurse Anesthetists
216 Higgins Road Park Ridge, Illinois 60068

Cyna AM, Andrew MI, Tan SGM. Communication skills for the anaesthetist. Anaesthesia. 2009; 64: 658–665.

Feldman DL. No room for disrespect: changing attitudes to reduce operating room risk. Infocus. 2006;2:14-15.

Hemingway, M, Freehan, M, et al. Expanding the Role of Nonclinical Personnel in the OR
AORN. 2009; J 91 (June 2010) 753-761.

Lingard L, Regehr G, Orser B, et al. Evaluation of a preoperative checklist and team briefing among surgeons, nurses, and anesthesiologists to reduce failures in communication. Arch Surg. 2008;143:12-17.

Pronin, E, Kugler, MB, Valuing thoughts, ignoring behavior: The introspection
illusion as a source of the bias blind spot. Journal of Experimental Social Psychology xxx (2006) xxx–xxx.

Rice, EM, Rady MY, Hamrick, A. et al. Determinants of moral distress in medical and surgical nurses at an adult acute tertiary care hospital. Journal of Nursing Management. 2008; 16: 360–373.

Rushton, CH. Defining and Addressing Moral Distress: Tools for Critical Care Nursing Leaders
AACN Advanced Critical Care. 2006; 17(2): 161–168.

Ulrich, CM, Hamric, AB, Grady C. Moral Distress: A Growing Problem in the Health Professions? Hastings Center Report 2010; 40 (1): 20-22.

Waisel D, Truog R. An introduction to ethics. Anesthesiology. August 1997;87(2):411-417.

You might be surprised to see a few articles on moral distress in the mix. I added material on moral distress to my presentation because it quickly became clear to me that many of the ethical dilemmas faced by nurse anesthetists and anesthesiologists are directly related to their role as “middle men” (or “middle women”).

One major issue that came through is the stress of timing, getting patients ready for the OR with great efficiency, and doing one’s best to make sure speed does not come at the sacrifice of genuine informed consent, beneficence, and personal integrity. Balancing demands of the institution with the needs of the patient is a paramount concern.

Here are a couple of case examples. These are composites not based on any one particular case:

Caring for a 3 yr. old. child- dental procedure for rotting teeth. The parents are angry at the surgeon for removing the child’s baby teeth even though they are rotten. The parents have not brushed the child’s teeth and give him high sugar drinks even though they’ve been instructed to avoid them. If the teeth aren’t removed, they could become infected and abscessed. You, the anesthetist are caring for the child and understand the dilemma. The parents meet you in the PACU and are upset with everyone in the room. They want the names of everyone in the room.

Caring for a 4 yr. old. child- dental procedure for rotting teeth. The mother is angry at the surgeon for removing the child’s baby teeth even though they are rotten. She has not brushed her child’s teeth and give her high sugar drinks even though they’ve been instructed to avoid them. If the teeth aren’t removed, they could become infected and abscessed. You, the anesthetist are caring for the child and understand the dilemma. The mother, along with a few other family members, meets you in the PACU and is upset with everyone in the room. They want the names of everyone in the room.

When patients is admitted to the hospital as the result of an attempted suicide, it can occasionally be difficult to know how to proceed. My own point of view is that, except in very unusual cases,  the patient should be treated regardless of the wishes of the surrogate decision maker or any advance directives. The reason for this is that most suicide attempts (all, according to some mental health experts who deny the possibility of “rational suicide”) are the result of mental illness. Of course, not everyone who is mentally ill lacks decision-making capacity (far, far from it!), but a person actively trying to end his or her life is very likely a patient who lacks DMC, and if the patient has an advance directive, we don’t know at the outset whether it was written with the suicide attempt in mind (i.e. under a state of suicidal ideation) or whether it is questionable for other reasons. In the moment of not knowing, it is almost always best to treat.

However, once the initial life saving has been accomplished, information can be gathered — via the patient him or herself, advance directives, family and friends, primary care physicians or other clinicians — that helps staff get a sense of who the patient is, what s/he wants, and what the goals of care for him or her should be.

This doesn’t mean there won;t be hard cases, or even tragic ones.

I briefly discussed the 2009 Kerrie Wooltorton case in the UK. Wooltorton attempted suicide, called an ambulance, and was allowed to die in the hospital because she had signed an advance directive. Doctors feared they would be accused of battery if they failed to follow the advance directive, while Wooltorton’s family was outraged the mentally ill woman was allowed to die with physician help.

Our panel included:

Sehar Khokher, MD, EMMC and Acadia Hospital, offering the perspective from psychiatry

Amanda Brock, RN, EMMC, offering the perspective of an ER nurse

Glenn Martin, Esq., General Counsel,  EMMC, offering the legal perspective

The following resources were helpful to me in preparing it:

• “Review: A Current Perspective of Suicide and Attempted Suicide”, J. John Mann, Ann Intern Med February 19, 2002 136:302-311
• “A theory to guide families and carers of people who are at risk of suicide.” Sun FK, Long A. J Clin Nurs. 2008 Jul;17(14):1939-48.
• “The Role of Substituted judgment in the Aftermath of a Suicide Attempt”, Robert Macauley, Journal of Clinical Ethics, 6/2007, Vol 18, No, 2, p. 111-118.
• “Suicide and Advance Directives: One Doctor’s Dilemma”, Gregory Kane, Journal fo MEdical Humanities, Vol 17, No, 3, 1996, p. 191-193.
• “Mediating Consolation with Suicidal Patients”, Fredricka Gilje and Anne-Grethe Talseth, Nursing Ethics 2007 14 (4)
• “Discovering the Truth in Attempted Suicide”, Michel, Konrad, et al, American Jrnl of Psychotherapy, Vol. 56. No. 3, 2002
• “A Current Perspective on Suicide and Attempted Suicide”, JJ. John Mann. MD, Ann Intern Med 2002;136:302-311
• “Suicide Attempts and Treatment Refusals”, Rebecca Dresser, Hastings Center Report, May-June 2010

Links:

Most Americans Are Still Confused About Health Care

Two short articles from the August 1, 2010 Medical Ethics Advisor,

“Physician-patient collaboration strategies” and “When the patient wants to go home to die”

Holding the Hand, by Jordan M. Gutovich in JAMA

Click on this NYTImes article and scroll down for free access

Konishi E, Yahiro M, Nakajima N, Ono M. The Japanese value of harmony and nursing ethics. Nursing Ethics [serial online]. September 2009;16(5):625-636. Available from: MEDLINE, Ipswich, MA. Accessed September 15, 2010.