Hot Topics: Clinical Ethics

Blog Posts (67)

May 31, 2017

He’s NOT a Ward of the State: Legal Significance of Words in Clinical Setting

As a lawyer by training and working as a non-lawyer in a clinical setting, I hear legal words of art tossed around without knowledge of their meaning.  In many cases, wrong terminology is the least of the healthcare team’s concerns and it is not an issue.  However, there are times when correct understanding of the legal significance of a phrase resolves an ethical dilemma all on its own.  

The phrase I have been hearing lately in the clinical setting is “ward of the state.”  This phrase has significance for the health care team because it determines who has authority to make decisions for a patient who lacks capacity, such as patients with development disabilities (“DD”). The legal meaning of “ward of the state” means that the patient has a public legal guardian (as opposed to a family member or friend as guardian). For those who do not understand its meaning, those using the term are usually referring to someone who is receiving health care services from a state agency or living in a group home.  The key misunderstanding is that receiving state services does not automatically deem one a “ward of the state” in the eyes of the law. A patient could be receiving services from Office for People with Developmental Disabilities without having a legal guardian. According to the New York Health Care Decisions Act, a 17-A guardian is the one who makes decisions for anyone with an intellectual or developmental disability, including health care decisions.  This is a legal process. It is common for a facility with patients with disabilities to begin a guardianship process for their residents who lack capacity as part of their admission process, but this is not always the case. This difference in understanding becomes an issue when the medical team is looking to make a major medical decision, such withdrawal of care, and no one understands with whom to discuss the plan of care. One may go down a rabbit hole of investigation to find who has guardianship only to learn that there was no public guardian at all. 

Another commonly misunderstood legal word is “proxy.”  Technically, proxy refers to the health care proxy form, a legal document, not the person. However, even lawyers sometimes call the appointed person “proxy,” even though the correct term would be “health care agent.” Proxy and surrogate have different legal meanings; proxy refers to a legal form and surrogate refers to someone who has health care decision making authority based on statute. If someone has health care decision making authority based on a proxy document, it means there was legal paperwork completed and it is evidence of the patient’s preferences. Both a health care agent and surrogate have the same authority; it just comes from a different source. Further, it is harder to remove a named health care agent’s authority than a surrogate’s authority. In order to remove a health care agent, one has to go through a legal proceeding, while removal of a surrogate would be an internal hospital process based on a series of factors, such as who is acting in the patient’s best interests. The difference matters in a clinical setting when there are multiple family members and the medical team is trying to determine who should be the decision maker. A health care agent would trump a surrogate, despite the familial relation. 

Language has meaning. This is not a new revelation.  Language has different meanings in different contexts.  A word in a court room means something very different from the same word in the clinical setting.  However, there are times when the legal meaning of a word has importance in the clinical setting as well. Understanding the legal meaning helps clarify conflict and in these two examples, who is the appropriate decision maker. It is important for health care providers to be precise in their language, as using such terms more carefully may result in better resolution of perceived ethical dilemmas.   

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 25, 2017

CPR and Ventricular Assist Devices: The Challenge of Prolonging Life Without Guaranteeing Health

by David Magnus and Danton Char

The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan.

December 1, 2016

Moral Distress in Clinical Ethics: Expanding the Concept

by Alyssa M. Burgart & Katherine E. Kruse

As physician ethicists, we often receive consultations where there is no clear ethical question, but rather, discomfort around value judgments.…

October 12, 2016

Clinical Ethics Consultation Services and Expectations: Is It That Much Different From Other Clinical Services?

Two recent presentations at the 2016 Annual Meeting of the American Society for Bioethics and Humanities in Washington, DC – offered within just a couple of hours of each other – had a similar theme but approached the issue from different angles. The first presentation was a case review by David Kappel, MD, a surgeon at the University of West Virginia, and Valerie Satkoske, MSW, PhD, a bioethics professor at the University of West Virginia Center for Bioethics and Health Law. The case involved a 75-year-old-man admitted for surgery. Unfortunately, following the surgery, he was delirious. The delirium continued for several days. He had to be restrained and fed with a nasogastric tube. The situation was very upsetting to his family; they were completely taken aback by this complication. The delirium was so unexpected and surprising that the family wondered whether or not the patient would have agreed to the surgery if he had fully understood that the extended delirium might result. The title of this presentation was: “You Should Have Told Me! Struggling to Meet the Spirit of Informed Consent.” As one can imagine, the presenters asked if information about the possibility of an extended delirium should have be included as a part of the informed consent process. The delirium was not part of the patient’s and family’s expectations. Of course, even with a more extensive, informed consent process, the family still may have not been fully prepared to deal with the complication anyway. Perhaps the answer turns more on the likelihood of the complication arising in this patient’s case given the particulars and context? Some complications are more probable than others given the circumstances?

The second presentation, titled “I Never Promised You a Rose Garden: On the Necessity of Not Meeting Expectations Regarding Clinical Ethics Consultation,” was given by Virginia L. Bartlett, PhD, and Stuart G. Finder, PhD, of Cedars-Sinai Medical Center. This presentation too dealt with expectations: the expectations those who ask for a clinical ethics consultation might have of clinical ethics consultants. The presenters suggested that the expectations might range from “ethics policeman” to “ethics superhero.” The presentation ended with the relatively unsatisfactory mechanisms available to evaluate the effectiveness or helpfulness of clinical ethics consultation services interventions. From the presentation, it was clear that clinical ethics consultants should be prepared for not meeting expectations of those who request assistance.

Regardless, both presentations highlight how important it is for clinicians – whether physicians or surgeons directly caring for patients or clinical ethics consultants offering advice or recommendations to colleagues or patients or families – to understand stakeholder expectations as well as they can. With doctors and nurses it may be a bit easier: mostly likely the patient wants to be restored to health or a baseline with the least discomfort and minimal aggravation. With clinical ethics consultation services, the expectations are often not this clear. Moreover, with both clinical medicine and clinical ethics consultation service interventions, there are complications and unintended consequences. One cannot always fully anticipate which way a case may turn, or which word or phrase at a particular moment may result in a worse situation rather than a better situation.

For good or ill, there is no informed consent equivalent for clinical ethics consultation services when stakeholders ask for a consultation. The various stakeholders – when they request a clinical ethics consultation – may or may not know exactly what they are asking for anyway. But, most likely, what they are asking for is help with a very troublesome or thorny issue that has ethical implications or dimensions. In this respect, clinical ethics consultants perhaps should worry less about meeting expectations than other clinicians, since the goals of clinical ethics consultation services often times are much less clear – at least when the consultation is requested – than restoring the patient’s health or previous baseline with the least discomfort and minimal aggravation. However, may always be better for the clinical ethics consultant to ask, “How do you think we can help?” and try to set or reset expectations as well as one can at the beginning of the process.

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.

September 12, 2016

“Humanists,” Academic Philosophers, Critical Distance, and Clinical Ethicists

The October 2016 Annual Meeting of the American Society for Bioethics and Humanities (ASBH) announced its theme for the Washington, D.C., convocation several months ago: “After over half a century of work, and as ASBH celebrates its coming-of-age, we have chosen to focus on ‘critical distance’ and our ‘insider-outsider’ status at our 18th annual meeting.” Some may be relatively unfamiliar with these notions of “critical distance” and “insider-outsider” status.

            In the early 1970s, when medical center and medical school thought leaders began hiring “humanists” to teach, round with teams, and attend morning reports and noon conferences, it was unclear what – if any - specific outcomes might result. However, the center executives and deans wanted to try something to help inject human values and humanistic thought into the educational process to offset the very strong influences of advancing technologies, specialization, and materialism, and to assure the outraged public in the face of recently revealed research scandals.

            These pioneer “humanists” were theologians, religious studies scholars, and philosophers. In just a few years, the philosophers were predominating in this growing field of applied ethics educators and scholars. In explaining this transition, Art Caplan wrote: “It proved very difficult to do bioethics in public in anything approximating a religious voice. ... [I]t quickly became clear that to command the attention of scientists and physicians, as well as policy-makers, a more secular voice was required. Philosophy, emerging out of decades of mainly futile wrangling about meta-ethical issues, was more than happy to oblige ... .” Caplan AL. The birth and evolution of bioethics. In Ravitsky V, Fiester A, Caplan AL. The Penn Center Guide to Bioethics. New York: Springer Publishing Co., 2009, p. 5.

            But, the philosophers who taught applied ethics or their philosophy colleagues in the academy challenged medical ethics in the classroom and at the bedside. The academic philosophers were concerned that the medical school philosophers might be losing their bearings. This difference of opinion was stated by Harvard philosophy professor F.M. Kamm in 1988: “[P]hilosophers should try to bring ‘real-life’ problems (and those that have them) up to the abstractions of philosophy, rather than just bring philosophy down to the level of the problems. [Emphasis in original.]” Kamm FM. Ethics, applied ethics, and applying applied ethics. In Rosenthal DM, Shehadi F, eds. Applied Ethics and Ethical Theory. Salt Lake City: University of Utah Press, 1988, p. 170.  To be even clearer, she continued: “[C]reative solutions to practical problems come only after a period of detaching ourselves from them to consider more fundamental concepts. ... [E]mphasizing the discovery of solutions to problems conflicts with a detached interest that goes wherever an illuminating, but not obviously or immediately useful, aspect of a questions leads one.” Ibid, p. 170-171. “If philosophers who do applied ethics do not maintain such attitudes, in common with academic philosophers, they run the risk of being bad philosophers and becoming merely the bearers of simplified, falsely reassuring news from the theorists.” Ibid, p. 171.

            In thinking back, it must have been a phenomenal trial for several medical school philosophers to attempt to satisfy the academic philosophers while taking a new path. For the academics the question must have been how does one comment upon the matters at hand without learning so much about related topics and processes or becoming deeply enmeshed in the milieu that one is no longer an “outsider” but an “ insider” without critical distance? This turf battle must have been particularly worrisome for some distinguished philosophers who gained national and international reputations as academic philosophers and who then moved to medical school and clinical settings. Of course, a good many philosophers and theologians thought doctors were too close to the problem  (that is, lacked critical distance) to be part of any solution. (And quite naturally, some of the doctors thought the theologians and philosophers lacked a sufficient clinical knowledge base to fully understand the contexts in which they were involved.) History has shown that many of the medical school philosophers transitioned and cared little about what the academic philosophers said anyway.

            By the early and middle 1980s, other professionals joined the philosophers and theologians in broadening the bioethics or clinical ethics base and voice: physicians, nurses, social workers, chaplains and pastoral care workers, and lawyers, just to name a few. For health care professionals, chaplains, and lawyers, this notion of “critical distance” as not an overriding factor. If these bioethicists gave any thought to “detachment,” they probably interpreted it as “objectivity.” Objectivity calls to mind: “impartiality,” “lack of bias,” “fairmindedness,” “neutrality,” “open-mindedness,” “fairness,” and “justice.”

            Today, as clinical ethics consultants move toward professionalization, the outsider-insider issue has lost its relevance. Few may even understand the context of the initial problem now. Clinical ethics consultants exist in great part to improve patient care and the patient care experience; they are undoubtedly insiders. And, whether one thinks in terms of critical distance or not, objectivity in providing service to others remains critically important.

August 12, 2016

Twisted Self-Deception

By: J.S. Blumenthal-Barby

 In his book, Self-Deception Unmasked, philosopher Ale Mele writes about two types of self-deception. There is the straight-forward kind, where a person falsely believes—in the face of strong evidence to the contrary—things that she would like to be true.…

July 13, 2016

Reason, Emotion, and Implanted Devices

by John D. Lantos, MD

Pullman and Hodgkinson present a case that, it seems, should have been an easy one. A competent adult makes a simple request to discontinue a medical therapy.…

May 27, 2016

Why America Needs Bioethics Right Now

by Craig Klugman, Ph.D.

From the title, you probably assumed I’m going to talk about the fast changing pace of medical technology, whether we should be working on human embryos, claims that scientists will be able to do head transplants within 2 years, or even whether the Olympics should be postponed because of Zika.…

April 26, 2016

BioEthicsTV: A night of consent issues on ChicagoMed

by Craig Klugman, Ph.D.

On this week’s episode of ChicagoMed (Season 1; Episode 15) issues of consent was the main focus.…

April 21, 2016

Clarifying the Rules: No media in patient treatment areas

by Craig Klugman, Ph.D.

In January, I wrote about the case of Mark Chanko, a patient run over by a truck whose death was recorded for a real-life medical show and was later viewed on television by his horrified widow who had never been asked for permission for the airing.…

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Published Articles (78)

American Journal of Bioethics: Volume 17 Issue 6 - Jun 2017

When Respecting Autonomy Is Harmful: A Clinically Useful Approach to the Nocebo Effect John T. Fortunato, Jason Adam Wasserman & Daniel Londyn Menkes

American Journal of Bioethics: Volume 17 Issue 6 - Jun 2017

Bringing Transparency to Medicine: Exploring Physicians' Views and Experiences of the Sunshine Act Susan Chimonas, Nicholas J. DeVito & David J. Rothman

American Journal of Bioethics: Volume 17 Issue 6 - Jun 2017

Shining Light on Conflicts of Interest Craig Klugman

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

The interactions of Canadian ethics consultants with health care managers and governing boards during times of crisis Chris Kaposy, Victor Maddalena, Fern Brunger, Daryl Pullman & Richard Singleton

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

Growing an ethics consultation service: A longitudinal study examining two decades of practice Christine Gorka, Jana M. Craig & Bethany J. Spielman

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

Adolescent oncofertility discussions: Recommendations from a systematic literature review Dorit Barlevy, Bernice S. Elger, Tenzin Wangmo & Vardit Ravitsky

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

Primary care physicians' views about gatekeeping in clinical research recruitment: A qualitative study Marilys Guillemin, Rosalind McDougall, Dominique Martin, Nina Hallowell, Alison Brookes & Lynn Gillam

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing Leila Jamal, Jill O. Robinson, Kurt D. Christensen, Jennifer Blumenthal-Barby, Melody J. Slashinski, Denise Lautenbach Perry, Jason L. Vassy, Julia Wycliff, Robert C. Green & Amy L. McGuire

AJOB Primary Research: Volume 8 Issue 2 - Apr 2017

Does experience matter? Implications for community consultation for research in emergency settings Victoria M. Scicluna, Mohammed K. Ali, Rebecca D. Pentz, David W. Wright & Neal W. Dickert

American Journal of Bioethics: Volume 17 Issue 5 - May 2017

Ethical Issues in Fecal Microbiota Transplantation in Practice Yonghui Ma, Jiayu Liu, Catherine Rhodes, Yongzhan Nie & Faming Zhang

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News (164)

July 12, 2017 9:00 am

h FDA chief to impose tougher doctor-training rules on opioid manufacturers (Washington Post)

Food and Drug Administration Commissioner Scott Gottlieb, stepping up the agency’s efforts against the nation’s opioid epidemic, announced plans Monday to require manufacturers of painkillers to provide more extensive education for physicians and other health-care professionals who prescribe the drugs.

July 6, 2017 9:00 am

Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being (AMA Journal of Ethics)

Supporting people living with dementia in maintaining selfhood, relationships, and well-being requires seeing beyond the common negative focus on disability. Furthermore, prioritizing the person rather than the disease requires rejecting the tragedy discourse, which is the negative lens through which dementia is typically considered.

June 29, 2017 9:00 am

111 people died under California's new right-to-die law (CNN)

One hundred eleven people died last year under California’s new right-to-die law, according to a report released Tuesday by the state’s Department of Public Health. The End of Life Option Act went into effect on June 9, 2016. It allows for California residents, age 18 and older, to request life-ending medication from their doctor if they are suffering from a terminal illness and want to set their own timetable for their death. Between June 9 and December 31, 2016, 258 people initiated the process, according to the report. One hundred ninety-one people were prescribed the lethal medication, of which 111 patients “were reported by their physician to have died following ingestion of aid-in-dying drugs prescribed under EOLA.”

June 14, 2017 9:00 am

Heaven over hospital: Dying girl, age 5, makes a choice (CNN)

Julianna Snow is dying of an incurable disease. She’s stable at the moment, but any germ that comes her way, even just the common cold virus, could kill her. She’s told her parents that the next time this happens, she wants to die at home instead of going to the hospital for treatment. If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die. But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
June 12, 2017 11:00 am

New clues to why a French drug trial went horribly wrong (Science)

Although Bial and Biotrial have been heavily criticized for the study, French authorities have concluded that the companies did not violate clinical trial regulations. In the wake of the case, the European Medicines Agency is developing stricter rules for “first-in-human” studies.

June 9, 2017 9:00 am

How Should Physicians Respond When the Best Treatment for an Individual Patient Conflicts with Practice Guidelines about the Use of a Limited Resource? (AMA Journal of Ethics)

Physicians might not be able to find a best solution or process for resolving more difficult ethical dilemmas, such as how they should best distribute limited resources. They could, however, pursue a path that most respects and benefits their patients and themselves.

June 6, 2017 9:00 am

Superantibiotic is 25,000 times more potent than its predecessor (Science)

The world’s last line of defense against disease-causing bacteria just got a new warrior: vancomycin 3.0. Its predecessor—vancomycin 1.0—has been used since 1958 to combat dangerous infections like methicillin-resistant Staphylococcus aureus. But as the rise of resistant bacteria has blunted its effectiveness, scientists have engineered more potent versions of the drug—vancomycin 2.0. Now, version 3.0 has a unique three-pronged approach to killing bacteria that could give doctors a powerful new weapon against drug-resistant bacteria and help researchers engineer more durable antibiotics.

June 5, 2017 9:00 am

Unsafe delivery of measles vaccine kills 15 children in South Sudan (CNN)

In a remote village in South Sudan, 15 children died from severe toxicity caused by contaminated measles vaccines, government health investigators said Thursday. The National Adverse Events Following Immunization Committee, supported by the World Health Organization, and UNICEF vaccine safety experts examined the cases and those of 32 other children who suffered fever, vomiting and diarrhea.

June 2, 2017 9:00 am

‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope (Washington Post)

Stefanie Joho was 22 when she was diagnosed with colon cancer. She has been in remission for more than a year thanks to an immunotherapy treatment aimed at a genetic glitch, rather than aiming at the disease itself like chemotherapy does.

May 24, 2017 9:00 am

Safety and immunogenicity of a live attenuated influenza H5 candidate vaccine strain A/17/turkey/Turkey/05/133 H5N2 and its priming effects for potential pre-pandemic use: a randomised, double-blind, placebo-controlled trial (The Lancet)

The emergence of highly pathogenic avian influenza H5N1 viruses has raised concerns about their pandemic potential. Vaccination is the most effective way of preventing influenza. In this study, we investigated the safety and immunogenicity of an avian H5N2 live attenuated influenza vaccine (LAIV H5N2) in healthy Thai adults and its priming immune responses with an H5N1 inactivated vaccine boost.

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