1.  Cassel C, Guest J. Choosing wisely: helping physicians and patients make smart decisions about their care. JAMA: The Journal Of The American Medical Association [serial online]. May 2, 2012;307(17):1801-1802.

Once upon a time, I believed that we could solve our health care problems — by which I meant access and affordability — by reducing waste. This is no longer, if it ever was, true, but I still believe that when as much as 30% of healthcare spending is wasteful, there’s no reason not to make reduction in unnecessary (and often harmful), overused, and duplicative interventions one of our public health goals.

To take just one example, Consumer Reports’ 2010 survey of 1200 healthy 40 to 60 year olds with no known heart disease or risk factors revealed that 44% had received screening or tests for heart disease in which were very unlikely or unlikely to offer benefits outweighing risks.

To promote the reduction of waste, 9 medical specialty societies have joined the American Board of Internal Medicine Foundation and Consumer Reports in a campaign called Choosing Wisely. Each society has come up with a list of five things — tests, treatments, or services — that are commonly used in their specialty, whose use should be reevaluated by patients and clinicians. Adding up the clinicians in the nine specialties, as many as 374,000 clinicians are potentially involved. Of note, the idea of picking just five items comes from bioethicist Howard Brody’s article, “Medicine’s ethical responsibility for health care reform: the Top Five list” (N Engl J Med. 2010; 362(4): 283-285).

Consumer Reports’ role is to create and disseminate consumer-friendly versions of the lists, and partner with other organizations to reach the widest possible audience. Click on the Choosing Wisely link above to see the lists for each specialty. Here’s just a snippet from the American College of Physicians (click on the image to open a PDF with all five):

2.  Campbell A, Derrington S, Hester D, Lew C. Her own decision: impairment and authenticity in adolescence. The Journal Of Clinical Ethics [serial online]. 2012 Spring 2012;23(1):47-55.

This is a case study involving a 17 year old young woman, a recipient of a kidney transplant, who is noncompliant with her medications, using crystal meth regularly, and depressed but not suicidal. She is admitted to the hospital for intensive anti-rejection treatment.  Her grandmother is her guardian. She has been hospitalized for breast cancer.

The case is reviewed from bioethical, a legal, developmental/philosophical perspectives, which is great. I was a little confused by the legal piece. Amy T. Campbell notes that even if the state law says a 17 year old is a minor, there are cases in which she may be able to make her own health care decisions, relating to (a) the procedure (for example, family planning), or (b) her unique situation (perhaps she is “emancipated” under the state’s guidelines). So far so good.

She then adds that “it may be determined that an adolescent has sufficient maturity, as developmentally and contextually understood, to make certain decisions, or at the very least to take on a shared decision-making role.” I am fine with “take on a shared- decision making role”, because I think that’s what we should be aiming for with every patient, to the extent their cognitive capacities, maturity, and health allow it.  But my understanding is that if this patient is a minor under the law, we need to either identify a decision-maker and allow that person to make the decisions, or help the patient file for emancipation. Whether this patient is mature, whether she has DMC … those are important questions as we pursue shared decision-making, but they don’t go to the basic legal question of: does this minor have a legal right to make her own health care decisions.

Legalities said, it is going to be hard to get staff to force treatment on an unwilling 17 year old.

The third commentator, Cheryl D. Law invokes Hilde Lindemann’s notion of “holding someone in her identity” which I do think is very important in a case like this. We need to understand how this patient got to this place. We need more context and a richer narrative to understand her behavior. How did she go from being a compliant 15 year old for whom a transplant was approved to being a crystal meth user who doesn’t care about anything? I would also be curious to know how she came to our hospital.

The missing piece in putting together this narrative is not just the patient’s grandmother, but any associated whatsoever. I would be shocked if she had no boyfriend, no best friend, no roommate, no aunt or uncle or cousin, no coworker, no one with whom staff could talk to forge a better understanding of who she is and why she is making these choices. The assistance of social workers and case managers will be vital in this task, and the assistance of nurses will be vital in helping staff get to know this patient.

I appreciated this case discussion very much as it reveals the complexity of so many real ethics consult cases, a complexity of both the challenge and the tools needed for its resolution which is tool often missing in the literature.

3.  Robichaux C. Developing Ethical Skills: From Sensitivity to Action. Critical Care Nurse [serial online]. April 2012;32(2):65-72.

I liked this one because it focuses not on the big obvious ethics cases, the ones that come to us with the word ETHICS stamped on them (futile treatment, withdrawal of life sustaining treatment, etc.), but on the everyday ethical issues that crop up in critical care nursing.

One of the scenarios discussed is an 8 year old with a bullet wound whose distraught mother refuses to let go of him. The nurse figures out how to let the mom get on the bed with the child, moving things where necessary. As the author points out, the nurse in this scenario correctly identified an ethical issue and implemented a justifiable action. Moreover, she showed moral courage because there may have ben criticized by peers or by physicians.

Robichaux references The Four Component Model by James Rest, as presented in Moral Development: Advances in Research and Theory (New York: NY: Prager; 1986).

She also refers to “lateral hostility” a new-to-me concept: “unkind discourteous, antagonistic interactions between nurses who work at comparable organizational levels and commonly characterized as divisive backbiting” (that quote is from Alspach G., “Lateral Hostility between critical care nurses: a survey report.” Crit Care Nurse. 2008; 28(2): 13-19). Let me amend that: clearly, having been a health care consultant for a decade, I have encountered it, but I didn’t realize it was a phenomenon under investigation. Anyway, Robichaux presents a scenario of lateral hostility in the context of Rest’s four component that is very helpful.

Robichaux is maybe a little too optimistic about the ability of ethics education to actually make more morally sensitive, more ethically motivated clinicians, at least based on data I have seen. She also spends some time trying to offer definitions of “ethical” versus “clinical” and other types of dilemmas. Asa philosopher, my approach may be a little different, but the more I work in the health care setting, the more I think that what counts as an ethical dilemma depends less on some inherent feature of the situation than on whether clinicians believe they need ethics tools to address it.

Because I am constitutionally incapable of showing up for a talk without reading a bunch of articles first, I did some Medline surfing and found four journal articles, all from the American Journal of Hospice & Palliative Medicine, that may be of interest to folks who are or who work with hospice or palliative care volunteers. I thought I’d share a little bit from each one in this blog post:

1. Claxton-Oldfield S, Claxton-Oldfield J. Some common problems faced by hospice palliative care volunteers. The American Journal Of Hospice & Palliative Care [serial online]. April 2008;25(2):121-126.

Abstract:

This paper examines 4 common problems that many hospice palliative care volunteers in Canada (and the United States) encounter, namely, being underutilized, being placed with a patient too late in the patient’s illness, feeling undervalued by some members of the medical staff, and not being able to do more to help patients and their families. The implications of each of these problems are discussed along with suggestions for overcoming them. Finally, some ideas for future research are proposed.

One thing to note is that this article is written by Canadians, and the use of the term “hospice palliative care” is not defined. I am not familiar with that phrase, and my own understanding is that we still try to distinguish “hospice care”, i.e. a philosophy of care for the terminally ill who are seeking a meaningful, comfortable, and supported end of life experience, versus “palliative care”, which refers to a medical specialty in managing symptoms, especially pain, for the seriously, chronically, and/or terminally ill. Palliative care can be appropriate for a much wider range patients than the terminally ill, and Hospice covers a wider range of services than palliative care.

(a) Being underutilized: The authors note that Hospice training can take up to 30 hours. When new trainees are not used, they may become impatient. The authors note that feeling useful is important for volunteer satisfaction and retention, and suggest that volunteer coordinators pair up volunteers, have monthly meetings, and offer educational opportunities to help volunteers feel they are making a contribution.

(b) Being placed with a patient too late: Many referrals are made when the patient is days or hours from death. It has been my experience about half the time that the patient dies within a week of the referral, sometimes before I can even get in to meet them. The authors point out the many contributing factors: lack of knowledge about hospice programs, patients and families not wanting to be perceived as “giving up” on the patient, fearing death, physicians not wanting to stop looking for a cure, caregivers not wanting to be perceived as unable to care for their loved one themselves, etc.

(c) Feeling undervalued by other members of the Interdisciplinary Care Team: The authors say that feeling like a valued member of the team is important for volunteer satisfaction.  the authors cite a survey which suggests volunteers feel most valued by patients and families, and less valued by doctors, nurses, and social workers. My experience has been that I have felt very supported and valued by the team. However, when a patient is in a long term care facility, I have felt less appreciated.

(d) Not Being Able to Do More: This refers to a feeling of frustration volunteers have with themselves. It is worse among hospital-based volunteers, who are not allowed to do work others are paid for, such as making beds, feeding patients, and giving physical care. We don;t have an in-hospital hospice, but it has not really been my experience that I do less for patients in a long term care facility. I have had patients who hate the food, for example, and have brought them a dinner I made at my home.

2. Claxton-Oldfield S, Banzen Y. Personality characteristics of hospice palliative care volunteers: the ”big five” and empathy. The American Journal Of Hospice & Palliative Care [serial online]. September 2010;27(6):407-412.

Abstract:

The goal of this study was to examine the personality characteristics of hospice palliative care volunteers by measuring the so-called big five personality traits and 4 separate aspects of empathy. A total of 99 hospice palliative care volunteers completed the NEO Five-Factor Inventory (NEO-FFI) of Costa Jr and McCrae and the Interpersonal Reactivity Index (IRI) of Davis. The vast majority (84%) of the volunteers were females. Compared to the norms for adult females on the NEO-FFI, female hospice palliative care volunteers scored significantly higher on the traits of agreeableness, extraversion, and openness and significantly lower on the trait of neuroticism. On the empathy measure, female hospice palliative care volunteers scored significantly higher on the empathic concern and perspective taking subscales compared to the female norms, and significantly lower on the personal distress and fantasy subscales. The results of this study may have implications for the recruitment and retention of hospice palliative care volunteers.

I thought this one would be fun to share with the volunteers. the authors report that most hospice volunteers are white middle-aged or older females. Not that I would know any of those!

We know why volunteers do it: to help others, to be of service, to make a difference in people’s lives. And we know they possess certain traits that suit them for this work, such as compassion, caring, good listening and communication skills, etc. But the authors were curious about personality characteristics of hospice volunteers.

A few studies have been done on hospice volunteers using the Meyers Briggs Type Indicator, which sorts people by four separate dimensions of personality: extroversion-introversion, sensing-intuition, thinking-feeling, and judging-perceiving. The studies did not result in the same findings, although the authors agree they seem to “suggest that extroverts and feeling types are more likely to be drawn to hospice palliative care volunteer work.” It;s probably obvious what an extroverted type it, but a feeling type is sympathetic. I;m feeling lazy today, so here’s what Wikipedia says about this:

Thinking and feeling are the decision-making (judging) functions. The thinking and feeling functions are both used to make rational decisions, based on the data received from their information-gathering functions (sensing or intuition). Those who prefer thinking tend to decide things from a more detached standpoint, measuring the decision by what seems reasonable, logical, causal, consistent and matching a given set of rules. Those who prefer feeling tend to come to decisions by associating or empathizing with the situation, looking at it ‘from the inside’ and weighing the situation to achieve, on balance, the greatest harmony, consensus and fit, considering the needs of the people involved. Thinkers usually have trouble interacting with people that are inconsistent or illogical, and tend to give very direct feedback to others. They are concerned with the truth and view it as more important than being tactful.

Anyway, the authors decided to use a different personality indicator, the NEO Five-Factor Inventory (NEO-FFI). It measures the “Big Five” personality domains, neuroticism, extroversion, openness, conscientiousness, and agreeableness.

The survey was of 99 female palliative hospice volunteers. The results were that these females scored higher than typical adult females on agreeableness, and “perspective taking.” they scored lower on “fantasy” and “personal distress.” The authors suggest that these traits make sense. It is important to be calm in stressful situations, not easily frightened by advanced illness or death, have an easier time connecting with people, being cheerful and upbeat, being open to new experiences, and being more trustworthy, agreeable, and sympathetic.

The fantasy aspect is interesting: the women volunteers in the study were less likely to get “caught up” in others’ lives or identify strongly with others (eg fictitious characters in books, movies and plays).

The authors note that their sample is small, and that more study needs to be done on more volunteers but they suggest that volunteer coordinators might add a few traits to what they are looking for in volunteers, perhaps even administering the NEO-FFI and IRI.

My own question is how these volunteers would stack up against other types of volunteers. I would think many of these traits are important for being a volunteer per se, not just a hospice volunteer.

3. Claxton-Oldfield S, Gibbon L, Schmidt-Chamberlain K. When to say “yes” and when to say “no”: boundary issues for hospice palliative care volunteers. The American Journal Of Hospice & Palliative Care [serial online]. September 2011;28(6):429-434.

Abstract:

A total of 79 hospice palliative care volunteers from 2 community-based hospice programs responded to a 27-item Boundary Issues Questionnaire that was specifically developed for this study. Volunteers were asked to indicate whether or not they considered each item (eg, “Lend personal belongings to a patient or family,” “Agree to be a patient’s power of attorney,” “Attend/go into a patient’s medical appointment”) to be something they should not do and to indicate whether or not they have ever done it. On the basis of the volunteers’ responses, the authors distinguished between “definite boundary issues” (things volunteers should never do, for example, “Accept money from a patient or family”), “potential boundary issues” (things volunteers should stop and think twice about doing, for example, “Accept a gift from a patient or family”), and “questionable boundary issues” (things volunteers should be aware of doing, for example, “Give your home phone number to a patient or family”). The implications of these findings for training volunteers are discussed and the need for clear and unambiguous organizational policies and procedures to preserve boundaries is stressed. Without clear policies, etc, community-based hospice programs may be putting themselves at legal risk.

The authors note that hospice palliative care volunteers walk a fine line between being a patient’s and family’s friend and being a member of a professional care giving team. They thus serve a “dual role”, and in any situation of dual roles, boundary issues can arise. Issues include family not wanting the volunteer to answer the patient’s questions about his prognosis, family asking the volunteer questions like “don’t you think she should be eating more?”, confidentiality issues, as in, sharing patient or family information only with the appropriate parties, and compromised care, as when it seems the patient’s pain is not being managed.

The survey identified a number of boundary issues, such as accepting gifts, buying gifts, lending personal belongings, sharing personal information about yourself, attending a medical appointment, that the majority of volunteers recognized as boundary issues, but some minority of volunteers did anyway. So, for example, accepting a gift was viewed by 65% as something they should NOT do, but almost %38 had in fact done it.

I was glad to see “Attempt to ‘save’ or ‘convert’ a patient to your particular religious beliefs before he or she dies” as something 97% recognized as NOT to be done, and that 0% have ever done. I can’t hardly think of any behavior more intrusive and less respectful at the end of life.

This set of behaviors will provide an excellent base for our discussion this evening. I’m curious as to where our volunteers fall on some of these gray areas.

4. Berry P, Planalp S. Ethical issues for hospice volunteers. The American Journal Of Hospice & Palliative Care [serial online]. December 2008;25(6):458-462.

Abstract:

Health care professionals usually receive professional education in ethics, but the half million hospice volunteers in the United States may receive only brief training that is limited to confidentiality and the volunteer role. The purpose of this study was to explore ethical issues hospice volunteers confront in their work. Interviews with 39 hospice volunteers were conducted, audio recorded, transcribed, and analyzed using qualitative methods. Prominent themes were dilemmas about gifts, patient care and family concerns, issues related to volunteer roles and boundaries, and issues surrounding suicide and hastening death. Suggestions for training include discussions of ethics after initial training once volunteers had confronted ethical issues, with special emphasis on strategies for negotiating their uneasy role positioned between health care professional and friend.

The authors identified four ethical issues which hospice volunteers face:

(1) Receiving gifts: Volunteers report some stress trying to balance the need to follow hospice guidelines on accepting gifts with being polite and avoiding hurting the feelings of patients and families.

(2) Patient Care and Family Concerns: Volunteers sometimes witness what they believe is problematic or substandard health care, but are not professionals who can address it themselves and may even feel unqualified to comment or intervene in any way.

(3) Volunteer Roles and Boundaries: sometimes volunteers are asked to stay for longer than they planned, or do other boundary-crossing behaviors, like dispense medication.

(4) Suicide and hastening death: A survey of 500 Kentucky hospice volunteers revealed that 4% of them were asked to help a patient end his or her life. As the authors point out, with half a million hospice volunteers in the US alone, there may be tens of thousands of volunteers who face this question. The authors report that volunteers did not “anguish” over these requests, and that they listened empathetically. They often reported their concerns to other members of the hospice team.

One thing I especially liked about how this survey was framed, is that the authors asked respondents to “Describe a situation in which you were not sure about the right or wrong thing to do from a moral or ethical point of view.” This left open the question of what counts as a moral or ethical issue, and allowed the volunteers to define for themselves what those issues are.

The authors point out that although hospice volunteers have extensive training, content related to ethical dilemmas for volunteers is neglected in accepted guidelines or standards of practice for hospice volunteer training.” This is a big gap! Suggestions from the volunteers as to how to better prepare for such ethical issues included the use of simulated scenarios that volunteers could discuss and work through, which is a great idea, one that is regularly used in medical setting to train healthcare professionals.

My own presentation will focus, as usual, on the ethical values underlying the discharge process for all patients. These are beneficence, respect for patient autonomy, and justice. I then discuss the special ethical challenges posed by a patient whose safe discharge is under question.  I consider the difference between assessing decision-making capacity in the hospital setting, versus assessing the ability of a patient to be safely discharged. I also take some time to talk about the moral distress experienced by staff when patients are discharged to environments they consider unsafe.

Here is a list of resources I found helpful in preparing my part of the talk:

Swidler R, Seastrum T, Shelton W. Difficult hospital inpatient discharge decisions: ethical, legal and clinical practice issues. The American Journal Of Bioethics: AJOB [serial online]. March 2007;7(3):23-28. Available from: MEDLINE, Ipswich, MA.

Cooney L, Kennedy G, Hawkins K, Hurme S. Who can stay at home? Assessing the capacity to choose to live in the community. Archives Of Internal Medicine [serial online]. February 23, 2004;164(4):357-360

Psychiatrist’s Role in involuntary Hospitalization, AMA virtual Mentor, Commentary by Jennifer Bremer, MD, Roy Lubit, MD, and Robert Orr, MD, CM (October 2003, Volume 5, Issue 10)

Jencks S, Williams M, Coleman E. Rehospitalizations among patients in the Medicare fee-for-service program. The New England Journal Of Medicine [serial online]. April 2, 2009;360(14):1418-1428. Available from: MEDLINE, Ipswich, MA.

Medicare’s Condition of Participation for Discharge Planning (here’s a copy at Cornell Law)

Dill A. The ethics of discharge planning for older adults: an ethnographic analysis. Social Science & Medicine (1982) [serial online]. November 1995;41(9):1289-1299. Available from: MEDLINE, Ipswich, MA.

Project RED: Reengineering the Hospital Discharge Process, Slide Presentation from the AHRQ 2009 Annual Conference, by Brian Jack MD

Neuropsychological Evaluation in Primary Care, THOMAS C. MICHELS, MD, MPH; ALVIN Y. TIU, MD; and CHRISTOPHER J. GRAVER, PhD, Madigan Army Medical Center, Tacoma, Washington Am Fam Physician. 2010 Sep 1;82(5):495-502.

Mayo A, Wallhagen M. Considerations of informed consent and decision-making competence in older adults with cognitive impairment. Research In Gerontological Nursing [serial online]. April 2009;2(2):103-111. Available from: MEDLINE,

2. Questionable capacity and the guidance of living wills

VanderWalde A. Clinical ethics case report: questionable capacity and the guidance of living wills. The Journal Of Clinical Ethics [serial online]. 2011 Fall 2011;22(3):250-255. Available from: MEDLINE, Ipswich, MA.

3. From the Washington Post: Our Unrealistic Attitudes Towards Death.

4. From the New York Times Magazine: 60 Lives, 30 Kidneys, All Linked. A really wonderful story of “paying it forward.

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.