January 12, 2016 | Posted By Bruce White, DO, JD

As is their publishing practice, the American Journal of Bioethics recently invited submissions for an Open Peer Commentary to an article they plan to publish in the next few months. The article is entitled “A Pilot Evaluation of Portfolios for Quality Attestation of Clinical Ethics Consultants” and authored by Joseph J. Fins, MD, Eric Kodish, MD, and the other members of the American Society for Bioethics and Humanities (ASBH) Quality Attestation Presidential Task Force (QAPTF). This paper is a sequel to their earlier paper “Quality Attestation for Clinical Ethics Consultants: A Two-Step Model from the American Society for Bioethics and Humanities” which was published in The Hastings Report. [http://www.ncbi.nlm.nih.gov/pubmed/24092588] The first paper described the ASBH plans to “attest” to the “quality” of self-identified, randomly-selected pilot clinical ethics consultants who submit a “portfolio” illustrating their consultation activities. When the article appears, all involved in clinical ethics consultation and the training of future clinical ethics consultants should read the paper. The QAPTF and the ASBH should be congratulated for doing this work and sponsoring the activity.

However, in thinking through this process again, one wonders how much of this is about the past and not about the future. Shouldn’t any process be more prospective and less retrospective? Maybe this is not possible? But how important is it really to show that people who are currently offering clinical ethics consultation services and recording their efforts in portfolios for other “experts” to review and compare do their consultations satisfactorily? Will this “attestation” somehow change their employment or practice circumstances or patterns? Will their employers dismiss them if they fail to obtain “attestation” status and hire clinical ethics consultants are meet the attestation standard? Will it add public recognition? In truth, is “attestation” really a quality standard that matters?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

January 7, 2016 | Posted By Wayne Shelton, PhD

Alzheimer’s is a progressive disease that over time robs the person of their selfhood. Eventually the advanced Alzheimer’s patient lives in a world of discrete, fleeting moments. The former self is obliterated and all of the personal connections to former loved ones are forever lost. The current self or the “now-self” is self-contained in each passing moment so there are as many selves as there are moments. From the onset of diagnosis a patient may live for as few as 3 years to as many as 10 or more. Much depends on the age of the patient and the comorbid conditions. But it is important to make clear: Alzheimer’s is a terminal disease for which there is no effective treatment to abate the progressive symptoms or to prevent or slow the mental and physical dying process. Though death does not occur until the whole human organism ceases to function, death must also, at least partly, be understood as the gradual dying of that unique personal self. This includes the higher brain functions that allow humans to be their uniquely personal selves, with personalities, habits, loves, careers, causes, values, characters, and so on. When these aspects of the patient begin to wane, there begins the gradual loss of “critical interests”—those personal aspects of one’s life one controls as an autonomous, social human being and moral agent.

Yet, the loss of critical interests or what we might call rational selfhood, do not necessarily entail the simultaneous loss of “experiential interests” that are connected to purely biological functions.  The Alzheimer’s patient may continue to have a robust interest in food, drink, music, social interaction (even without recognizing the person with whom she is interacting), sex, and so on. Patients with robust experiential interests but no critical interests may eat hearty meals and be social in very new ways, sometimes with intimacy, with people they never knew before. But at some point in the course of the disease, even those experiential interests begin to wane and eventually disappear. At that point, patients with Alzheimer’s no longer are able to feed themselves or care for themselves in any way. In fact they may be totally puzzled having food in their mouths, not knowing how to chew and swallow, or having to go the bathroom. They live in a world where they cannot comprehend what is happening to bodies. For many, the possibility of losing all of one’s critical interests as a human being and being left with only experiential interests is terrifying. So how does one plan one’s own medical care during this time?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

January 4, 2016 | Posted By Valerye Milleson, PhD

"I now know that if you describe things as better as they are, you are considered to be romantic; if you describe things as worse than they are, you are called a realist; and if you describe things exactly as they are, you are called a satirist." – Quentin Crisp

A theme that has run through many of my blog posts so far is the concept of eudaimonia. This New Year, which not only highlights the annual rituals of goal setting and actively plotting to become the best person you can be in the year to come but also is a reminder of the birth of famed raconteur and master of wit, Quentin Crisp, seems to me like the perfect time to discuss this concept in greater detail.

"If I have any talent at all, it is not for doing but for being." – Quentin Crisp

Despite his humble self-description, Quentin Crisp has been a hero to many, and in his vocation of being he was one of the strongest advocates of “living well” in recent times. Living well (or “good spirit”, happiness, human flourishing, etc.) is roughly what ancient Greek philosophers meant by eudaimonia. Aristotle’s definition in the Nicomachean Ethics of “living well and doing well” (Book I, Chapter IV) is apt and fairly uncontroversial; but it is far from self-explanatory. After all, “living well” can mean different things to different people. For Aristotle, living well basically meant living a life of excellence in reason (along with certain external goods necessary to keep this virtuous activity going smoothly). The Stoics agreed with Aristotle’s account on the role of excellence in reason, but disagreed with him about the importance of such things as wealth, family, friends, power, beauty, etc. in one being able to achieve eudaimonia. The Cynics and the Stoics held fairly similar views of eudaimonia, but in general the Cynics seemed to actively disavow these external things, and living well to a Cynic would have been more akin to the life of a virtuous ascetic. The Cynics also tended to be, like Mr. Crisp, satirists, cosmopolitans, and lovers of excellence and humanity.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 31, 2015 | Posted By John Kaplan, PhD

An enduring issue which has occupied ethicists and philosophers for decades is the so-called trolley problem. The trolley problem offers a hypothetical scenario in which a trolley containing several people is on a track headed towards a cliff. If the trolley goes over the cliff the trolley will plummet to the ground and the passengers will certainly die. A bystander witnessing this unfolding tragedy has the opportunity to switch the train onto another track, which is not headed over the cliff, and save the passengers. However, if the bystander switches the trolley to the alternative track the trolley will run over an individual on the track and that individual will certainly die.

The central issues in this scenario revolve around the utilitarian argument that dictates switching the trolley to kill the fewest number of people versus the consequentialist argument that if the trolley is switched to the other track the bystander is responsible for the death of the individual on that track. The proper choice in this scenario has been argued for decades and will, undoubtedly, be argued indefinitely into the future. I am pleased that I do not have to choose the outcome. However, the time has come that this decision has to be faced directly. The choice in this and many similar scenarios now needs to be made.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 29, 2015 | Posted By Claire Horner, JD, MA

“It is a disturbing consequence of modern biological technology that the fate of the nascent human life, which the Embryos in this case represent, must be determined in a court by reference to cold legal principles.”  Findley v. Lee, No. FDI-13-780539, 4 (Cal. Tentative Ruling Filed Nov. 18, 2015).

On November 18, 2015, the Superior Court of California issued a Tentative Decision and Proposed Statement of Decision holding that five embryos that were created and cryopreserved by a husband and wife, now divorced, must be destroyed in accordance with the agreement signed by the parties prior to beginning IVF.  According to the Court, the agreement contained, among others, a provision determining in advance the agreed-upon disposition of any remaining embryos in the event of divorce.  For this provision, both spouses initialed “thaw and discard.”  This “contractual approach” has been adopted by several jurisdictions that have had occasion to determine disposition of embryos in divorce.  In this analysis, courts will enforce an agreement signed by the parties prior to IVF as evidence of their intentions at the outset of the process.  

Courts in some states have decided such cases using different approaches.  The Constitutional rights approach (or balancing approach) looks at the interests of the parties, evaluating and balancing their respective rights, which seems to result in a comparison of the right to procreate and the right to avoid procreation.  This paradigm, in practice, has led courts to conclude that the right to avoid procreation typically prevails.  The contemporaneous mutual consent approach, on the other hand, attempts to reconcile the contractual approach with the current wishes of the parties by holding that pre-IVF agreements are valid and enforceable unless and until one of the parties changes his or her mind.  While this approach appears to recognize contracts, in practice a contract is disregarded where there is disagreement, and the embryos remain frozen until a mutual decision can be reached.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 24, 2015 | Posted By Paul Burcher, MD, PhD

I was surprised to read recently in the New York Times that a woman has undergone a cesarean section despite her refusal to consent to the procedure.  While the details of the case are not entirely clear in the article, so I do not want what follows to be understood as a specific comment on this case, my surprise arises because I thought the ethics of refusal of consent were not in dispute.  The American College of Obstetrics and Gynecology has taken a clear position of this: it is not justifiable to perform surgery on a patient with decisional capacity without her consent. ACOG’s committee opinion, “Maternal Decision Making, Ethics, and the Law,” strongly discourages even attempting to seek a court order for treatment when a pregnant woman refuses cesarean section, and concludes with a statement that:

Pregnant women's autonomous decisions should be respected. Concerns about the impact of maternal decisions on fetal well-being should be discussed in the context of medical evidence and   understood within the context of each woman's broad social network, cultural beliefs, and values. In the absence of extraordinary circumstances, circumstances that, in fact, the Committee on Ethicscannot currently imagine, judicial authority should not   be used to implement treatment regimens aimed at protecting the fetus, for such actions violate the pregnant woman's autonomy. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 22, 2015 | Posted By Zubin Master, PhD

The STAP stem cell fiasco still continues. In January 2014, Haruko Obokata in the Center for Developmental Biology at RIKEN in Kobe, Japan reported that she was able to convert mouse cells to a pluripotent state in a very simplistic fashion by exposing cells to stress. This procedure was called stimulus triggered acquisition of pluripotency (STAP). Soon after its publication, allegations of plagiarism, and figure manipulation and duplication were reported. Other researchers were unable to reproduce the STAP experiments and it seemed that the STAP cells were the result of contamination (Cyranoski, 2015). An investigative committee at RIKEN found Obokata had committed research misconduct while she defends her results admitting to sloppy science but not deliberate misconduct.

Shortly after the scandal was reported, Waseda University, where Obokata received her doctorate, revoked her PhD on a probationary basis. The concerns over Obokata’s thesis surrounded plagiarism and inaccuracies (Cook, 2015). The University however made multiple efforts to help Obokata redo her dissertation by providing revision instructions and required she take an online ethics training course which she completed. And while some revisions to the thesis were made, these were ins

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 18, 2015 | Posted By Lisa Campo-Engelstein, PhD
Last month I attended the Oncofertility Consortium conference and gave a talk titled “Ethical Considerations of Fertility Preservation in Adolescents.” The goals of this talk were to describe the common ethical considerations of fertility preservation (FP) for adolescent cancer patients and to explore the different medical and social considerations for adolescent females and males due to sex and gender.

Like any medical intervention for the adolescent population, there is the question of whether adolescents are able to assent or consent to FP. Should the decision to pursue FP rest in the hands of the adolescent or the adolescent’s parents/guardians? On the one hand, adolescents may choose to forgo FP because they do not understand the value of their fertility may have them later especially since, at their age, they are bombarded with messages about avoiding pregnancy. On the other hand, adolescents may feel pushed to undergo FP due to parental pressure (e.g. their parents/guardians want to be grandparents in the future).

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.
December 14, 2015 | Posted By Wayne Shelton, PhD

The role of family surrogates in providing a voice for incapacitated patients is of crucial importance. Usually, surrogates have the best interests of the patient in mind and try to work with the physician in charge to provide the best treatment possible for the patient. In most cases there is agreement between the surrogate and the physician about the treatment plan and the goals of care. But as those of us who do clinical ethics consultations know, there are some cases, maybe 5% or fewer, where there are serious conflicts between surrogates of patients lacking capacity and physicians. I want to briefly explore a type of conflict that we seem to be seeing more often—when the surrogate attempts to get too involved in the medical management of the patient. Let me use a couple of sample cases to illustrate the type of conflict I have in mind.

The first is the case of an elderly patient with dementia and with multiple medical problems, including severe pressure ulcers. This patient requires regular dressing changes for the pressure ulcers in order to keep them clean and well managed, requiring the patient to be turned, which causes her significant discomfort. When these dressing changes happen, the standard of care is to make sure the patient suffers as little as possible, so a small amount of morphine is given. But the family surrogate informed the nurse that she should not use morphine, as she wanted the patient to remain as alert as possible at all times. When the nurse tries to perform the dressing changes without giving morphine the patient groans, grimaces, and appears agitated and in pain. The nurse feels distraught that she is causing the patient to suffer unnecessarily.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 8, 2015 | Posted By Bruce White, DO, JD

On Friday, October 31, 2015, the chief medical officer of the Centers for Medicare and Medicaid Services announced a final rule which details how Medicare will pay practitioners to have conversations with patients about how they would like to be cared for at the end of life. Under the regulation, the patient is not obliged to have these conversations after a terminal diagnosis is made, or shortly before death is anticipated; the conversations may take place at any time, even before the patient becomes ill. The conversation may include discussions about life-sustaining treatments before they may be necessary, and about advance directives and the identification and appointment of a legally authorized representative to participate in the shared decision making progress if the patient were to lose decision making capacity. The rule, which will take effect in January 2016, creates new codes for reimbursement under the Medicare physician fee schedule.

It may seem remarkable that there should be any question about reimbursement for these often-time-sensitive, patient-directed conversations or discussions at all. But because Medicare payments have traditionally been tied to physicians completing and documenting finite “tasks” or “procedures,” these conversations have been “bundled” with other inclusive duties or responsibilities (such as taking a history or performing a physical or developing a treatment plan). The idea that Medicare should pay specifically for the service comes from the belief that if physicians received fairer compensation for providing the conversation and discussion, they would be better incentivized to comply. (Of course, this may or may not be the case, since many physicians clearly have been doing this all along as evidenced by the increased referrals to palliative care and hospice providers and services over the years.) But from 2013 Medicare data about terminally ill cancer patients, only about 47% of these patients receive hospice care, and the average length of stay in hospice is about 17 days. The statistics vary greatly from state to state with the better hospice and end of life care being provided in the Pacific Northwest and the worst in Alaska, Florida, North Dakota, and New York.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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