Case Study Discussion
Below is a list of the case study articles that have been published in NIB, each with keywords, a set of discussion questions, and further resources. To search page contents with keywords, select "Control-F" from a PC, or "Command-F" from a Mac.
- Accommodating Religious Beliefs in the ICU: A Narrative Account of a Disputed Death
- When Ethics Consultation and Courts Collide: A Case of Compelled Treatment of a Mature Minor
- Advance Directives, Preemptive Suicide, and Emergency Medicine Decision Making
- Healing the Physician’s Story: A Case of Narrative Medicine and End-of-Life Care
- The Efficacy of Ethics Discernment in the Organizational Context: The Case of Post-Offer Nicotine Screening
- Can We Talk About Sex?
- Should We Tell Annie?: Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy
- A Case of Deceptive Mastectomy
- Do Everything
- Responding to the Refusal of Care in the Emergency Department
- I Don’t Know Why I Called You
- Undocumented and at the End of Life
- Dax’s Case Redux: When Comes the End of the Day?
- Desperately Seeking a Surrogate— For a Patient Lacking Decision-Making Capacity
- What to Say When: Responding to a Suicide Attempt in the Acute Care Setting
- Conversation and the Jehovah’s Witness Dying From Blood Loss
- Caregivers’ Role in Maternal-Fetal Conflict
- The Surgeon as Stakeholder: Making the Case Not to Operate
- The Enduring Case
- Military Health Care Dilemmas and Genetic Discrimination: A Family’s Experience with Whole Exome Sequencing
- Conflicting Values: A Case Study in Patient Choice and Caregiver Perspectives
- Ethical Dilemmas Relating to the Management of a Newborn with Down Syndrome and Severe Congenital Heart Disease in a Resource-Poor Setting
- System Failure: No Surgeon To Be Found
- A Life Below the Threshold? Examining Conflict Between Ethical Principles and Parental Values in Neonatal Treatment Decision Making
- Ethical Challenges in the Care of the Inpatient with Morbid Obesity
- The Clinical Bioethicist’s Role: Should We Aim to Relieve Suffering?
- To Enroll or Not to Enroll?: A Researcher Struggles with the Decision to Involve Study Participants in a Clinical Trial That Could Save Their Lives
- Sometimes Those Hoofbeats Are Zebras: A Narrative Analysis
- A Jehovah’s Witness Adolescent in the Labor and Delivery Unit: Should Patient and Parental Refusals of Blood Transfusions for Adolescents Be Honored?
- Reframing Medical Appropriateness: A Case Study Concerning the Use of Life-Sustaining Technologies for a Patient With Profoundly Diminished Quality of Life
- "We Didn't Consent to This"
- Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online
- A Personal Narrative on Living and Dealing with Psychiatric Symptoms after DBS Surgery
- The Will Reconsidered: Hard Choices in Living Organ Donation
- Malleable Transplant Criteria: At What Cost?
- Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience
1. Accommodating Religious Beliefs in the ICU: A Narrative Account of a Disputed Death
Martin L. Smith, Anne Lederman Flamm
Abstract: Despite widespread acceptance in the United States of neurological criteria to determine death, clinicians encounter families who object, often on religious grounds, to the categorization of their loved ones as “brain dead.” The concept of “reasonable accommodation” of objections to brain death, promulgated in both state statutes and the bioethics literature, suggests the possibility of compromise between the family’s deeply held beliefs and the legal, professional and moral values otherwise directing clinicians to withdraw medical interventions. Relying on narrative to convey the experience of a family and clinical caregivers embroiled in this complex dilemma, the case analyzed here explores the practical challenges and moral ambiguities presented by the concept of reasonable accommodation. Clarifying the term’s meaning and boundaries, and identifying guidelines for its clinical implementation, could help to reduce uncertainty for both health care professionals and families and, thereby, the incremental moral distress such uncertainty creates.
Keywords: Brain death, clinical ethics, ethics consultation, reasonable accommodation, religious conflict
- How might have the nurses’ and physicians’ initial frank commentary about Sarah’s condition affected the family’s interpretation of the clinicians’ opinions later on in the care process?
- In what ways might the new hospital have provided support to Sarah’s family in order to avoid the religion vs. medicine standoff that eventually developed?
- How much patience are physicians obligated to have with family members who extensively question the medical decision-making process? Was the hospital staff correct in labeling Rebekah as “manipulative”?
- Is it ethically appropriate for financial considerations to affect the family’s decision-making? Why or why not? To what extent should the healthcare team discuss the financial impact of decisions with families?
- New York State Department of Health Guidelines for Determining Brain Death. (2011). Retrieved from: http://www.health.ny.gov/professionals/hospital_administrator/letters/2011/brain_death_guidelines.pdf
- Olick, RS, Braun, EA, and Potash, J. (2009). Accommodating Religious and Moral Objections to Neurological Death. The Journal of Clinical Ethics. Retrieved from: http://www.upstate.edu/bioethics/pdf/faculty/olick_accommodating-religious-and-moral-objections-to-neurological-death.pdf
- Breitowitz, YA. Jewish Medical Ethics: The Brain Death Controversy in Jewish Law. Jewish Virtual Library. Retrieved from: https://www.jewishvirtuallibrary.org/jsource/Judaism/braindead.html
2. When Ethics Consultation and Courts Collide: A Case of Compelled Treatment of a Mature Minor
Jeffrey P. Spike
Abstract: A fourteen year old is diagnosed with aplastic anemia. The teen and his parents are Jehovah’s Witnesses. An ethics consult is called on the day of admission by an ethically sophisticated social worker and attending. The patient and his parents see this diagnosis as “a test of their faith.” The ethical analysis focuses on the mature minor doctrine, i.e. whether the teen has the capacity to make this decision. The hospital chooses to take the case to court, with a result that is at odds with the ethics consultation recommendations. Ethics was never deposed or otherwise invited to be involved with the hearing. Thus the larger question of the relation of ethics and law was brought into stark relief.
Keywords: Adolescent, Capacity, Child Neglect, Decision-making Capacity, Ethics Consultation, Informed Consent, Jehovah’s Witnesses, Mature Minor, Religion, Religious Belief, Right to Refuse Treatment, Teen, Teenager
- What is the relationship between law and ethics? When they conflict, which should prevail?
- At one point, the author of this case study says, of trying to convince his young patient of the benefit of treatment: “…but that seemed coercive. In fact, far too many patients act out of fear and accept treatment that has virtually no choice of benefit.” In this case, where Luke would have greatly benefitted from treatment, where is the line to be drawn between thoroughly informing him and coercing him?
- Are there ever circumstances where it might be disadvantageous to have an ethics consultation?
- Anderson & Associates, P.C. (2015). Illinois Recognizes the “Mature Minor Doctrine” in Some Cases. Retrieved from: http://www.andersondivorcelawchicago.com/chicagodivorceattorney/2015/01/29/illinois-mature-minor-doctrine-states/ Pauley, M. (2011). National Health Care Decisions Day, Jehovah’s Witnesses & Mature Minors. Marquette University Law School Faculty Blog. Retrieved from: http://law.marquette.edu/facultyblog/2011/04/14/national-health-care-decisions-day-jehovahs-witnesses-mature-minors/
- Jehovah’s Witnesses: The Surgical/Ethical Challenge. (1981). JW.org. Retrieved from: http://www.jw.org/en/publications/books/blood/jehovahs-witnesses-the-surgical-ethical-challenge/
3. Advance Directives, Preemptive Suicide, and Emergency Medicine Decision Making
Richard L. Heinrich, Marshall T. Morgan, Steven J. Rottman
Abstract: As the United States population ages, there is a growing group of aging, elderly, individuals who may consider "preemptive suicide"(Prado, 1998). Healthy aging patients who preemptively attempt to end their life by suicide and who have clearly expressed a desire not to have life -sustaining treatment present a clinical and public policy challenge. We describe the clinical, ethical, and medical-legal decision making issues that were raised in such a case that presented to an academic emergency department. We also review and evaluate a decision making process that emergency physicians confront when faced with such a challenging and unusual situation.
Keywords: Aging, Autonomy, Advance Directives, Emergency Department, Preemptive Suicide
- Can we rely on the perspective of a patient to trust that a logical decision about preemptive suicide is being made?
- In this case, the family supported the patient’s decision, and thus gave it more credence. When the patient and family disagree, which view should prevail?
- What could the medical team have done prior to providing treatment in order to clarify their patient’s DNR wishes?
- Suicide is currently illegal in the United States. Does the fact that it is illegal mean that it is wrong? Is there an ethical right to suicide, despite the fact that it is illegal?
- Gabbatt, A. (2009). Doctors acted legally in ‘living will’ suicide case. The Guardian. Retrieved from: http://www.theguardian.com/society/2009/oct/01/living-will-suicide-legal
- Tolchin, M. (1989). When long life is too much: suicide rises among elderly. The New York Times. Retrieved from: http://www.nytimes.com/1989/07/19/us/when-long-life-is-too-much-suicide-rises-among-elderly.html?pagewanted=all&src=pm
- Appleby, J. (2014). ‘Prophylactic’ Suicide. The New York Times, Sunday Review. Retrieved from: http://www.nytimes.com/2014/11/16/opinion/sunday/prophylactic-suicide.html
4. Healing the Physician’s Story: A Case of Narrative Medicine and End-of-Life Care
Lori A. Roscoe
Abstract: Telling stories after a loved one’s death helps surviving family members to find meaning in the experience and share perceptions about whether the death was consistent with the deceased person’s values and preferences. Opportunities for physicians to evaluate the experience of a patient’s death and to expose the ethical concerns that care for the dying often raises are rare. Narrative medicine is a theoretical perspective that provides tools to extend the benefits of storytelling and narrative sense–making to physicians. This case study describes narrative writing workshops attended by physicians who care for dying patients. The narratives created revealed the physicians’ concerns about ethics and their emotional connection with patients. This case study demonstrates that even one–time reflective writing workshops might create important opportunities for physicians to evaluate their experiences with dying patients and families.
Keywords: Death and Dying, End–of–Life Issues, Healthcare Professionals, Narrative Inquiry, Stories, Storytelling
- This piece extensively discusses the effects that narrative medicine can have for a practicing physician. What potential effects can it have on the other side of the doctor-patient interaction?
- What does the Japanese physician’s story suggest about the role that culture plays in the doctor-patient experience?
- Is it possible for a physician to be truly empathetic with his or her patients? Why or why not?
- Should medical schools across the country include narrative medicine in their curriculum? Why or why not?
- Chen, PW. (2008). Stories in the Service of Making a Better Doctor. The New York Times. Retrieved from: http://www.nytimes.com/2008/10/24/health/chen10-23.html?pagewanted=all
- Geisler, SL. (2006). The Value of Narrative Ethics to Medicine. The Journal of Physician Assistant Education. Retrieved from: http://www2.paeaonline.org/index.php?ht=action/GetDocumentAction/i/25232
5. The Efficacy of Ethics Discernment in the Organizational Context: The Case of Post-Offer Nicotine Screening
David M. Belde
Abstract: This article examines the efficacy of an ethics discernment process in the organizational context, a practice referred to in the paper as "mission due diligence." This type of ethics discernment is a structured process intended to awaken the ethical concerns that a particular issue raises within moral agents and to give voice, directly and indirectly, to those who will be impacted by, and responsible for, strategic decision-making. The efficacy of this particular ethics discernment practice is contingent upon several realities, including, but not limited to 1) the timing in which it is undertaken, 2) the degree of importance and relevance attributed to it, and 3) the skills of the person leading it. This case report examines how this process was used to highlight and address the ethical issues related to a new hiring policy, namely, a mandatory nicotine screening test for prospective employees in the healthcare context. Framed by the Bon Secours Virginia Health System hiring process, the author explores the importance of diligently focusing on ethical considerations in the organizational realm while still maintaining true to the virtues of the network.
Keywords: Ethics Discernment, Nicotine Screening, Organizational Ethics
- The author says, “Virtually all organizational ethics programs have to grapple with their overall importance and relevance within an organization.” How much authority should an ethics program within a hospital be afforded?
- If an employer can show sufficient empirical results for why a drug test is necessary, is it warranted? Do the sufficient reasons have to be related to the patients’ best interests?
- What are the different ways that Catholicism affects the ethical considerations in this case? What role does religion play in ethical consultations in general?
- Why does the author say balancing advocacy and inquiry are so important?
- Tucker, M & Salazar, L. (2014). Cotinine testing may violate the American with Disabilities Act (ADA), the ADA Amendments Act (ADAAA), and state laws. Wells Fargo Insights. Retrieved from: https://wfis.wellsfargo.com/insights/clientadvisories/pages/cotininetestingmayviolateadaandotherlaws.aspx
- Our Values. Bons Secours Health System. Retrieved from: http://hso.bonsecours.com/about-us-our-mission-our-values.html
- Framework for Ethical Discernment. (2014). The Taylor University Center for Ethics. Retrieved from: http://ethics.taylor.edu/framework-for-ethical-discernment/
6. Can We Talk About Sex?
Mindy B. Statter
Abstract: A three–year–old female undergoes elective inguinal hernia repair and unexpectedly is found to have testes in the hernia sacs. A recommendation is made not to disclose the patient’s genotype to her mother. This case study addresses the ethical conflict of whether to disclose the patient’s male genotype to the parent that has been raising the child as female.
Keywords: Autonomy, Beneficence, Complete Androgen Insensitivity Syndrome, Disclosure, Informed Consent, Intersex, Nonmaleficence
- In what—if any—circumstances is it ethically acceptable to withhold medical information about a child from the primary caretaker?
- Now that disclosure of a CAIS diagnosis is mandatory, what responsibility would a parent potentially have to override a doctor’s recommendations for gender maintenance?
- This case highlights the ethical risks and potential consequences later in life of not disclosing a patient’s CAIS diagnosis and treatment. Conversely, what would the consequences be for disclosing?
- Ignoring the medical precedents set now, do you believe the doctor in this case should have felt remorse for not disclosing the full nature of the girl’s condition to her mother? Would her mother have been equipped to handle that knowledge at that time?
- Dreger, AD. (1998). “Ambiguous Sex”—or Ambivalent Medicine? The Hastings Center Report. Retrieved from: http://www.isna.org/articles/ambivalent_medicine
- Intersex Conditions, Human Diversity Resources. UConn Health Center. http://uchc.libguides.com/humandiversity/intersex
- Georgiann Davis. "Normalizing Intersex: The Transformative Power of Stories." Narrative Inquiry in Bioethics 5.2 (2015): 87-89. Project MUSE. Web. 8 Dec. 2015
7. Should We Tell Annie?: Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy
Erica K. Salter
Abstract: This case analysis examines the pediatric clinical ethics issues of adolescent autonomy and parental authority in medical decision–making. The case involves a dying adolescent whose parents request that the medical team withhold diagnosis and prognosis information from the patient. The analysis engages two related ethical questions: Should Annie be given information about her medical condition? And, who is the proper decision–maker in Annie’s case? Ultimately, four practical recommendations are offered.
Keywords: Adolescent, Decision-making Capacity, End of Life Care, Mature Minor, Parental Consent
- At what age do teens develop the ability to make autonomous decisions for themselves? What factors unique to adolescence might enhance or detract from this ability?
- What factors should be considered in deciding whether an adolescent should be given decision-making authority? Why?
- Is it ever appropriate for medical practitioners to lie to a child (or actively conceal the truth from a child)? Why or why not?
- Was it appropriate of the new attending doctor to call the palliative care physician? How could that miscommunication have been prevented?
- Hill, JB. (2012). Medical Decision Making by and on Behalf of Adolescents: Reconsidering First Principles. Faculty Publications. Retrieved from: http://scholarlycommons.law.case.edu/cgi/viewcontent.cgi?article=1081&context=faculty_publications
- Leonard, K. (2015). Case Sparks Debate About Teen Decision Making in Health. U.S. News and World Report. Retrieved from: http://www.usnews.com/news/articles/2015/01/22/case-sparks-debate-about-teen-decision-making-in-health
8. A Case of Deceptive Mastectomy
Rebecca Volpe, Maria Baker, George F. Blackall, Gordon Kauffman, Michael J. Green
Abstract: This paper poses the question, “what are providers’ obligations to patients who lie?” This question is explored through the lens of a specific case: a 26–year–old woman who requests prophylactic bilateral mastectomy with reconstruction reports a significant and dramatic family history, but does not want to undergo genetic testing. Using a conversational–style discussion, the case is explored by a breast surgeon, genetic counselor/medical geneticist, clinical psychologist, chair of a hospital ethics committee and director of a clinical ethics consultation service.
Keywords: Clinical Ethics, Deceit, Lying, Provider/Patient Relationship, Providers’ Obligations
- Do you believe that the patient-doctor relationship should be reciprocal? Does the Hippocratic Oath mandate that doctors uphold their duties regardless of patient behavior?
- This case study asks us to consider typical signals that the doctors relied on when initially deciding whether or not to trust the patient. They cite qualities like her attractiveness, her maturity, and her husband’s support in order to explain their initial trust. Should they have been more skeptical in the beginning? Why were they so willing to believe the patient’s story at face value?
- Aside from the guilt that the surgeon himself would likely have felt, what might have been some potential consequences for the ethics team and hospital in general if the surgery had been successfully performed? What if it had gone badly?
- Polta, A. (2014). Lying to the Doctor. Center for Advancing Health, Prepared Patient Blog. Retrieved from: http://www.cfah.org/blog/2014/lying-to-the-doctor
- Ludwig, M & Burke, W. (2013). Physician-Patient Relationship. Ethics in Medicine, University of Washington School of Medicine. Retrieved from: http://depts.washington.edu/bioethx/topics/physpt.html
- Observer Staff. (2000). What Should Plastic Surgeons Do When Crazy Patients Demand Work? Observer. Retrieved from: http://observer.com/2000/07/what-should-plastic-surgeons-do-when-crazy-patients-demand-work/
9. Do Everything
H. Rex Greene
Abstract: A 57–year–old with an incurable cancer suffered an abdominal catastrophe, putting him in the ICU, comatose with no chance of survival. His attending oncologist had only met him once and had no knowledge of his goals of care. Lacking an advance directive the staff turned to his family, who said, “Do everything.” This loaded statement was thought to be a demand for futile care even though it ultimately proved a reflection of their emotional response to a terrible, unanticipated event, not an irrational demand for useless care. A sympathetic exploration of the patient’s goals and expectations with his family using Buckman’s SPIKES format disclosed that their major concern was that he not die on his wife’s birthday. The family agreed to withdraw him from ventilator support the following day. Unraveling a medical conflict requires a sensitive process of shared decision–making based on a transparent process of clinical reasoning that synthesizes patient and family values with medical knowledge and ethical duties. Properly done, the outcome usually is a satisfactory experience for all concerned.
Keywords: Abandonment, Advance directives, Catastrophic Illness, Clinical Reasoning, Conflict Resolution, Decisional Capacity, Do Everything, Futility, Paternalism, Shared Decision Making, SPIKES, Substituted Judgment
- This case explains that responding appropriately to a request to “do everything” requires doctors to ensure that patients’ families “know the medical facts, delivered in a kind, caring fashion.” Sometimes, it can take many meetings over several days for the family to absorb the medical facts. How should decisions be made in the meantime?
- The conclusion of this case seems to reaffirm that emotion is more important than reason when approaching difficult conversations with patients’ families. Should emotion-based education and empathy training be offered in the modern medical school curriculum? Is it even possible to train physicians to be more emotionally intelligent?
- Why is the establishment of the goal of treatment so important to the unity of a patient, their family, and their doctor? What are the barriers to establishing goals of care?
- Baile, WF. et al. (2000). SPIKES—A Six Step Protocol for Delivering Bad News: Application to the Patient with Cancer. The Oncologist. Retrieved from: http://theoncologist.alphamedpress.org/content/5/4/302.full
- Medical Futility. (2007). ACOG Committee Opinion No. 362. American College of Obstetricians and Gynecologists. Obstet Gynecol. Retrieved from: http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Ethics/Medical-Futility
- Enhancing Communication and Coordination of Care. (2013). Cardinal Glennon. Retrieved from: http://www.cardinalglennon.com/Documents/Forms/AllItems.aspx?RootFolder=http%3a%2f%2fwww%2ecardinalglennon%2ecom%2fDocuments%2femergency-medicine&FolderCTID=0x0120000161C93D9B68B34BA6E74A98204CE2A1
10. Responding to the Refusal of Care in the Emergency Department
Jennifer Nelson, Arvind Venkat, Moira Davenport
Abstract: The emergency department (ED) serves as the primary gateway for acute care and the source of health care of last resort. Emergency physicians are commonly expected to rapidly assess and treat patients with a variety of life–threatening conditions. However, patients do refuse recommended therapy, even when the consequences are significant morbidity and even mortality. This raises the ethical dilemma of how emergency physicians and ED staff can rapidly determine whether patient refusal of treatment recommendations is based on intact decision–making capacity and how to respond in an appropriate manner when the declining of necessary care by the patient is lacking a basis in informed judgment. This article presents a case that illustrates the ethical tensions raised by the refusal of life–sustaining care in the ED and how such situations can be approached in an ethically appropriate manner.
Keywords: Decision–making Capacity, Emergency Department, Emergency Physician, Informed Consent, Treatment Refusal
- Does coming to the Emergency Department constitute implied consent to treatment? Why would a patient come to the ED if not to receive potentially life-sustaining treatments at a physician’s recommendation?
- If it is evident that a patient lacks decision-making capacity, is it paternalistic to administer life-saving treatment even if the patient refuses?
- In this case, would it be ethically appropriate for the physicians to consult the patient’s family, in order to bring in one more agent of authority?
- Cooper, S. (2010). Taking No for an Answer—Refusal of Life-Sustaining Treatment. AMA Journal of Ethics/Virtual Mentor. Retrieved from: http://journalofethics.ama-assn.org/2010/06/ccas2-1006.html
- ACEP Code of Ethics for Emergency Physicians. (2008). Retrieved from: https://www.acep.org/Clinical---Practice-Management/Code-of-Ethics-for-Emergency-Physicians/
11. I Don’t Know Why I Called You
Jeffrey S. Farroni, Colleen M. Gallagher
Abstract: This case study details a request from a patient family member who calls our service without an articulated ethical dilemma. The issue that arose involved the conflict between continuing further medical interventions versus transitioning to supportive or palliative care and transferring the patient home. Beyond the resolution of the ethical dilemma, this narrative illustrates an approach to ethics consultation that seeks practical resolution of ethical dilemmas in alignment with patient goals and values. Importantly, the family’s suffering is addressed through a relationship driven, humanistic approach that incorporates elements of compassion, empathy and dialog.
Keywords: End of life, Empathy, Relationships, Clinical Ethics
- How can healthcare providers and ethicists strike a balanced middle-ground between being too detached and too empathetic? Which side of this split should they err on? Why?
- In this case, how did the patient’s family’s expectations influence the decision-making of the ethicist and the doctors?
- How can an ethicist’s varied background bring new knowledge and insight to a collaborative ethical deliberation?
- Shelton, WN & White, BD. (2015). Realistic Goals and Expectations for Clinical Ethics Consultations: We Should Not Overstate What We Can Deliver. The American Journal of Bioethics. Retrieved from: http://www.tandfonline.com/doi/pdf/10.1080/15265161.2014.974773
- American Society for Bioethics and Humanities Clinical Ethics Task Force. Improving Competence in Clinical Ethics Consultation: A Learner’s Guide. Retrieved from: http://www-3.unipv.it/centrodibioetica/resources/Improving_Competence_in_Ethics.pdf
12. Undocumented and at the End of Life
Abstract: Three of the most contentious issues in contemporary American society—allocation of medical resources, end of life care, and immigration—converge when undocumented immigrant patients are facing the terminal phase of chronic illness. The lack of consistent, pragmatic policy in each of these spheres leaves us with little guidance for how to advocate for undocumented patients at the end of life. Limited resources and growing need compound the problem. Care for patients in this unfortunate situation should be grounded in clinical and economic reality as well as respect for the dignity of the individual to avoid exacerbating inequalities.
Keywords: Allocation of Resources, Dialysis, ESRD, End–of–Life Care, Undocumented Patients
- How does Henri’s lack of citizenship or permanent residence in the United States limit not only his access to, but his knowledge of, the full range of medical options available to him? Does this make him vulnerable, and therefore deserving of increased protections, in a way that other patients are not?
- Was it Henri’s right to refuse hospice, considering the lack of other options available? Why or why not?
- Should the ethics consulting team have made more of an effort to communicate to Henri that Lucia was no longer willing to be his caregiver? Why would this matter?
- Is a partial treatment of a severely ill patient worth the effort, or just a waste of time and resources? What is the apparent stance of the ethics committee on this question?
- Kimball, C. “End-of-Life Health Care Disparity: A Case Study”. Nursing Economics. Retrieved from: https://www.nursingeconomics.net/necfiles/news/End-Of-Life_Care_Kimball.pdf
- Ortega, AM. (2014). “Stay or Go? Terminally Ill Undocumented Immigrants Face Dilemma”. New America Media. Retrieved from: http://newamericamedia.org/2014/01/undocumented-and-dying-latinos-may-find-comfort-in-final-journey-home.php
13. Dax’s Case Redux: When Comes the End of the Day?
Ashley R. Hurst, Dea Mahanes, Mary Faith Marshall
Abstract: Forty years after Dax Cowart fought to have his voice heard regarding his medical treatment, patient autonomy and rights are at the heart of patient care today. Yet, despite its centrality in patient care, the tension between a severely burned patient’s right to stop treatment and the physician’s role in saving a life has not abated. As this case study explores, barriers remain to hearing and respecting a patient’s treatment decisions. Dismantling these barriers involves dispelling the myths that burn patients must grin and bear intense pain to recover and that a patient’s choice to discontinue treatment equals physician failure. Moreover, in these situations, sustained, direct engagement between physician and patient can reduce the moral distress of all involved and enable physicians to hear and better accept when a patient is calling for the end of the day.
Keywords: Dax Cowart, Ethics Consultation, Moral Distress, Palliative Care, Patient Autonomy
- Communication between a patient and his or her care team is crucial in cases like this. Why did the avenues of communication break down in this piece? What could have been done to improve the relationship between the patient and the medical team?
- What obligation did the physicians have to be visiting the patient and witnessing the implications of his wound care? If their behavior had been different, how might that have changed the course of treatment for the patient?
- Was the sheer number of people in the room for the patient’s first consult coercive? What could have been done differently to understand both the patient’s wishes and the team’s perspective earlier in the process?
- Does the possibility of a high quality of life post-treatment warrant or justify doctors’ prescribing painful treatment over a patient’s objections?
- “Dax’s Case” preview. (1984). Retrieved from: http://search.alexanderstreet.com/view/work/1630976
- Kavan, MG, Elsasser, GN, Barone, EJ. (2012). The Physician’s Role in Managing Acute Stress Disorder. Am Fam Physician. Retrieved from: http://www.aafp.org/afp/2012/1001/p643.html
- Requests to Die: Non-Terminal Patients. Mhhe. Retrieved from: http://novella.mhhe.com/sites/dl/free/0078038456/1037408/Pen38456_Ch02.pdf
14. Desperately Seeking a Surrogate— For a Patient Lacking Decision-Making Capacity
Martin L. Smith, Catherine L. Luck
Abstract: Our hospital’s policy and procedures for “Patients Without Surrogates” provides for gradated safeguards for managing patients’ treatment and care when they lack decision–making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in “rigorous efforts” to search for surrogates who can potentially provide substituted judgments for such patients. We describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates.
Keywords: Clinical Ethics, Decision–Making Capacity, End–of–Life Decisions, Ethics Committee, Ethics Consultation Service, Patients Without Surrogates, Rigorous Efforts, Social Work, Surrogate Decision Maker, Unbefriended Patient, Unrepresented Patient
- While this author cautions against using social media to determine a surrogate, do you think it could be a reliable method of determining a close relationship?
- Does your state allow non-family members to serve in the role of surrogate decision-maker?
- If there had been sufficient grounds for Sally to be Jacob’s surrogate, do you think she would have come to the same conclusions as Jacob’s brother? Could the process have been expedited, and yet be just as reliable?
- Stanford Hospitals and Clinics. (2009). Health Care Decisions for Patients Who Lack Capacity and Lack Surrogates. Retrieved from: http://www.thaddeuspope.com/images/Stanford_Health_Care_Decisions_For_Patients_Who_Lack_Capacity_and_Surrogates_7_09.pdf
- Varma, S & Wendler, D. (2007). “Medical Decision Making for Patients Without Surrogates”. Arch Intern Med. Retrieved from: http://ogg.osu.edu/site_documents/sage/course3/wk8_varma.pdf
15. What to Say When: Responding to a Suicide Attempt in the Acute Care Setting
Arvind Venkat, Jonathan Drori
Abstract: Attempted suicide represents a personal tragedy for the patient and their loved ones and can be a challenge for acute care physicians. Medical professionals generally view it as their obligation to aggressively treat patients who are critically ill after a suicide attempt, on the presumption that a suicidal patient lacks decision making capacity from severe psychiatric impairment. However, physicians may be confronted by deliberative patient statements, advanced directives or surrogate decision makers who urge the withholding or withdrawal of life sustaining treatments based on the patient’s underlying medical condition or life experience. How acute care providers weigh these expressions of patient wishes versus their own views of beneficence, non–maleficence and professional integrity poses a significant ethical challenge. This article presents a case that exemplifies the medical and ethical tensions that can arise in treating a patient following a suicide attempt and how to approach their resolution.
Keywords: Advanced Directives, Critical Care, Life–sustaining Treatment, Suicide, Surrogate Decision Maker
- Can suicide ever be a rational, autonomous decision? Why or why not?
- How can patient/family relationships pose a challenge for doctors trying to establish the best course of action for a patient?
- How did the family’s perspective affect the patients’ treatment in this case? Was the outcome of their input positive or negative?
- In the absence of both a clear patient advance directive and familial knowledge of patient preferences, how should medical decisions be made? What did the doctors do in this case?
- Carrigan, CG & Lynch, DJ. (2003). Managing Suicide Attempts: Guidelines for the Primary Care Physician. Primary Care Comparnion to The Journal of Clinical Psychiatry. Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419387/
- Sokol, D et al. (2011). Ethical dilemmas in the acute setting: a framework for clinicians. BMJ. Retrieved from: http://www.medicalethicist.net/documents/Tattoo%20BMJ%20PDF.pdf
- Forster, PL & Wu, LH. Assessment and Treatment of Suicidal Patients in an Emergency Setting. Gateway Psychiatric Services. Retrieved from: https://www.gatewaypsychiatric.com/pdf/Assessment%20and%20Treatment%20of%20Suicidal%20Patients%20in%20an%20Emergency%20Setting.pdf
16. Conversation and the Jehovah’s Witness Dying From Blood Loss
D. Malcolm Shaner, Jateen Prema
Abstract: Religious belief can complicate the usual management of seriously ill patients when the patient is a Jehovah’s Witness and the treatment is a blood transfusion. This narrative highlights critical points in a discussion of two cases wherein the process to promote an exercise of free will also becomes an exercise for the ethics consultant and healthcare team. Despite a medical care program’s carefully considered additions to an electronic healthcare record, additional conversation, investigation, preparation, and an open mind are required. Helping conflicted family members and considering whether and in what context to contact the Jehovah’s Witness Hospital Liaison Committee complicates the approach.
Keywords: Blood Transfusion, Jehovah’s Witness, Religious Rights
- Consider the differences between the two cases with regard to how the hospital handled the patient requests. What did the hospital do well, and what could it have improved?
- In Case 1, what was the effect of attempting the surgery once the patient had changed his mind? How did that change influence the perspective of both the doctors and the patient’s mother?
- In Case 1, was the medical officer’s frankness with the patient appropriate, taking into consideration the beliefs that the patient already expressed?
- How did the doctors in Case 2 actively facilitate moral decision making on the part of the patient?
- Panico, ML et al. (2011). “When a Patient Refuses Life Saving Care”. Am J Kidney Dis. Retrieved from: http://www.medscape.com/viewarticle/751273
- Robinson, BA. (2010). “Jehovah’s Witnesses’ (WTS) opposition to blood transfusions”. Ontario Consultants on Religious Tolerance. Retrieved from: http://www.religioustolerance.org/witness11.htm
17. Caregivers’ Role in Maternal-Fetal Conflict
Abstract: The case, which occurred in a public hospital in Turkey in 2005, exhibits a striking dilemma between a mother’s and her fetus’ interests. For a number of reasons, the mother refused to cooperate with the midwives and obstetrician in the process of giving birth, and wanted to leave the hospital. The care providers evaluated the case as a matter of maternal autonomy and asked the mother to give her consent to be discharged from the hospital, which she did despite the fact that her cervix was fully open. She left the hospital and gave birth shortly thereafter. Subsequently, the baby died two days later. In light of contemporary ethical principles, the mother’s competency could be debatable due to the physical and psychological conditions the mother confronted. Furthermore, protection of the fetus’ life should have been taken into account by the caregivers when making a decision concerning discharging of the mother.
Keywords: Ability to Consent, Autonomy, Beneficence, Decision Making Capacity, Ethical Dilemma, Fetal Beneficence, Fetal Rights, Maternal Autonomy, Maternal–Fetal Conflict, Pregnancy
- Did the mother have the right to demand to leave? Would your answer to this question change if discharging the mother endangered the fetus? Why or why not?
- Was the mother in a position to make an autonomous choice? Other than autonomous patient decision-making, are there models of decision-making that might have been considered in this case? How might they be applied?
- How could the care team have done better? Should a hospital have policies to help prevent or address such a situation? If so, what would these policies look like?
- Schetter, CD & Tanner, L. (2012). Anxiety, depression, and stress in pregnancy: Implication for mothers, children, research, and practice. Current Opinion in Psychiatry. Retrieved from: http://health.psych.ucla.edu/CDS/documents/DunkelSchetterTanner-2012COPsychiatry.pdf
- Post, LF. (1996). Bioethical Consideration of Maternal-Fetal Issues. Fordham Urban Law Journal. Retrieved from: http://ir.lawnet.fordham.edu/cgi/viewcontent.cgi?article=2171&context=ulj
18. The Surgeon as Stakeholder: Making the Case Not to Operate
Abstract: Surgeons are in a unique position, serving as gatekeepers to the operating room. They determine if operations are possible, are indicated, and have a reasonable risk–to–benefit profile. When an operation is indicated and the patient is amenable to it, the conversation between surgeon and patient is usually straightforward. On the other hand, when a patient’s co–morbidities substantially increase the risk of operative intervention, surgeons often question the utility of offering their services. These situations become immensely more difficult when patients have the expectation of being offered surgical treatment. This case describes the clinical encounter between an endocrine surgeon and an 83–year–old woman who has been incidentally found to have adrenal metastasis from melanoma. The patient wants an operation that the surgeon is reluctant to offer because of her frailty and high operative risk. The case focuses on the ethical dilemma that arises when a patient wants an operation that a surgeon does not want to perform.
Keywords: Metastatic Melanoma, Palliative Care, Respect for Autonomy, Shared Decision–Making, Surgical Ethics
- What reasons are acceptable for refusing to operate on a patient? Why?
- How should surgeons approach situations in which they are consulted for operative interventions that they do not want to provide?
- When surgeons think the risk of surgery is too great and not justified but patients think the risks are worthwhile, whose assessment should prevail? Why?
- Louden, K. (2015).“Risk Calculator Does Not Alter Surgeons’ Choice to Operate". Medscape. Retrieved from: http://www.medscape.com/viewarticle/852708
- Kasman, DL. (2004).“When is Medical Treatment Futile?: A Guide for Students, Residents, and Physicians." Journal of General Internal Medicine. Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1492577/
19. The Enduring Case
Craig M. Nelson
Abstract: In clinical ethics an enduring case takes on a life of its own and comes to closure over a long period of time. This essay describes the evolution of such a case over a 1–year period. The case involves a 90–year old male patient with multiple chronic medical conditions who lacked decision–making capacity, was a resident of a long–term care facility, and did not have known previously expressed wishes regarding medical treatment. The ethics consultation initially revolved around this question: What method or process must be employed so that medical treatment decisions could be ethically reviewed and could include a shared decision–making process for Mr. Smith? This case analysis describes the evolution of this case and argues that the good of the patient must remain paramount throughout an enduring case.
Keywords: Ethical Appropriateness, Ethical Process, Moral Community, Treatment Planning
- What kinds of processes might help an incapacitated patient’s voice be heard, especially when the patient’s values were never formally documented?
- Why might it be important to try to give voice to an incapacitated patient’s values?
- What went well with the process in this clinical ethics consultation? Might there be opportunities for improving the processes deployed in this case, and if so, what might they be?
- Ten Myths About Decision-Making Capacity: A Report by the Natioanl Ethics Committee Of the Veterans Health Administration. (2002). Retrieved from: http://www.ethics.va.gov/docs/necrpts/nec_report_20020201_ten_myths_about_dmc.pdf
- California Advance Health Care Directive Probate Code Section 4701. Retrieved from: https://leginfo.legislature.ca.gov/faces/codes_displayText.xhtml?lawCode=PROB&division=4.7.&title=&part=2.&chapter=2.&article=
20. Military Health Care Dilemmas and Genetic Discrimination: A Family’s Experience with Whole Exome Sequencing
Benjamin M. Helm, Katherine Langley, Brooke B. Spangler, Samantha A. Schrier Vergano
Abstract: Whole–exome sequencing (WES) has increased our ability to analyze large parts of the human genome, bringing with it a plethora of ethical, legal, and social implications. A topic dominating discussion of WES is identification of “secondary findings" (SFs), defined as the identification of risk in an asymptomatic individual unrelated to the indication for the test. SFs can have considerable psychosocial impact on patients and families, and patients with an SF may have concerns regarding genomic privacy and genetic discrimination. The Genetic Information Nondiscrimination Act of 2008 (GINA) currently excludes protections for members of the military. This may cause concern in military members and families regarding genetic discrimination when considering genetic testing. In this report, we discuss a case involving a patient and family in which a secondary finding was discovered by WES. The family members have careers in the U.S. military, and a risk–predisposing condition could negatively affect employment. While beneficial medical management changes were made, the information placed exceptional stress on the family, who were forced to navigate career–sensitive “extra–medical" issues, to consider the impacts of uncovering risk–predisposition, and to manage the privacy of their genetic information. We highlight how information obtained from WES may collide with these issues and emphasize the importance of genetic counseling for anyone undergoing WES.
Keywords: Genetic Discrimination, Genetic Information Nondiscrimination Act of 2008 (GINA), Genetic Testing, Incidental Findings, Military, Secondary Findings
- It is clear that this type of genetic testing is revolutionizing diagnoses, but it comes with ethical concerns. Do the advantages of WES outweigh the possible disadvantages? Why or why not?
- Do you agree that pre–test conversations should be required in every scenario? Why or why not?
- When the SCN5A gene mutation was found, should the father have told his superiors? Why or why not?
- The SCN5A mutation is probabilistic–not all individuals who have the mutation will develop symptoms. However for some patients, the only presenting feature is sudden cardiac death. What are some reasons patients might have for—and against—wanting this information?
- National Human Genome Research Institute. (2014a). Fact sheet: Genetic discrimination. Retrieved from: http://www.genome.gov/10002077
- Majewski, J. et al., (2011). What Can Exome Sequencing Do For You? Journal of Medical Genetics. Retrieved from: http://www.medscape.com/viewarticle/749695_1
- Collins, F. (2007). The threat of genetic discrimination to the promise of personality medicine. Testimony to the United States House of Representatives Committee on Ways and Means. Retrieved from: http://waysandmeans.house.gov/Media/pdf/110/3-14-07/CollinsTestimony.pdf
21. Conflicting Values: A Case Study in Patient Choice and Caregiver Perspectives
Margot Eves, Phoebe Day Danziger, Ruth M. Farrell, Cristie M. Cole
Abstract: Decisions related to births in the “gray zone" of periviability are particularly challenging. Despite published management guidelines, clinicians and families struggle to negotiate care management plans. Stakeholders must reconcile conflicting values in the context of evolving circumstances with a high degree of uncertainty within a short time period. Even skilled clinicians may struggle to guide the patient in making value–laden decisions without imposing their own values. Exploring the experiences of one pregnant woman and her caregivers, this case study highlights how bias may undermine caregivers’ ability to meet their obligation to enhance patient autonomy and the moral distress they may experience when a patient’s values do not align with their own. Management strategies to mitigate the potential impact of bias and related moral distress are identified. The authors then describe one management strategy used in this case, facilitated ethics consultation, which is focused on thoughtful consideration of the patient’s perspective.
Keywords: Bias, Ethics Consultation, “Gray Zone", Moral Distress, Perspective–Taking
- How can we distinguish between concerns that reflect bias versus concerns that reflect legitimate differences in values?
- Does it matter if a patient’s choices reflect bias, or do patients have the right to have their decisions respected even if they are based on potentially unsubstantiated biases or beliefs?
- Given the controversial nature of the patient’s viewpoint regarding life with disabilities, did the providers have an obligation to try to mitigate the patient’s bias? Why or why not?
- What are some of the ways that the providers could have tried to address the patient’s biases regarding life with a disability? For example, should the patient have been offered the opportunity to speak to parents of children with disabilities, specifically those disabilities more likely to be a result of complications from prematurity? Would it be ethically permissible to require that she do so?
- Are there other, more effective ways to support professionals who take care of patients whose values and choices differ so significantly from their own?
- Lyerly, AD. (2008). Reframing neutral counseling. Virtual Mentor. Retrieved from: http://virtualmentor.ama–assn.org/2008/10/ccas3–0810.html
- Guttmacher Institute. (2015). State policies in brief: An overview of abortion laws. New York: Guttmacher Institute. Retrieved from: http://www.guttmacher.org/statecenter/spibs/spib_OAL.pdf
22. Ethical Dilemmas Relating to the Management of a Newborn with Down Syndrome and Severe Congenital Heart Disease in a Resource-Poor Setting
Ama K. Edwin, Frank Edwin, Summer J. McGee
Abstract: Decision-making regarding treatment for newborns with disabilities in resource-poor settings is a diffi cult process that can put parents and caregivers in confl ict. Despite several guidelines that have helped to clarify some of the medical decision-making in Ghana, there is still no clear consensus on the specifi c moral criteria to be used. This article presents the case of a mother who expressed her wish that her child with Down syndrome should not have been resuscitated at birth. It explores the ethical issues at stake in both her misgivings about the resuscitation and her unwillingness to consider surgical repair of an atrioventricular (AV) canal defect. Knowing that children born with Down syndrome are able to pursue life’s goals, should our treatment of complete AV canal defect in such children be considered morally obligatory, even in resource-poor settings like Ghana?
Keywords: Atrioventricular Septal Defect, Down Syndrome, Ethical Duty, Newborn, Withholding Treatment
- What is the difference between a substantiated concern and one that reflects bias? How can providers assess the difference?
- The mother’s views about the relative lack of value of a person with disabilities are controversial and seem to reflect an unfair or unfounded bias. In light of this, did the provider have an obligation to try to address the mother’s bias?
- If health care providers had an obligation to try to mitigate or address the mother’s bias, how should they have attempted to do so? Should the mother have been required to speak to other parents of children with disabilities?
23. System Failure: No Surgeon To Be Found
Abstract: A woman admitted to the emergency room of a hospital died because no surgeon could be found to stop the bleeding from injuries she sustained in a farming accident. The case points to ethical shortcomings both institutionally and professionally. The call system is inadequate, and physician fears of being sued or insufficiently compensated contribute to the overall problem. Potential responses include the institutional equivalent of a root cause analysis and an understanding of the pressures brought to bear on physicians to treat emergencies.
Keywords: Emergency Call, Institutional Ethics, John Glaser, Organizational Ethics, Root Cause Analysis
- Do you think a physician has an ethical obligation to try to help a patient who will otherwise die, even when the patient’s problem is not within the physician’s specialty? If so, how do you ground this obligation? If not, why not?
- If physicians have such an obligation, what ought they to do when they face barriers to fulfilling it?
- People often see themselves in the best light; it’s very human to see one’s self favorably, and to try to explain away one’s own responsibility when an error occurs. In light of this natural tendency, what structures could be set into place to help physicians and other stakeholders take responsibility in these types of situations?
24. A Life Below the Threshold?: Examining Conflict Between Ethical Principles and Parental Values in Neonatal Treatment Decision Making
Thomas V. Cunningham
Abstract: Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision–making are the harm principle, the principle of best interest, and the threshold view. This paper considers how these principles apply to a case of a premature neonate with multiple significant co-morbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles help in understanding what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case; however, this case reveals that common bioethical principles for medical decision–making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism.
Keywords: Harm Principle, Best Interests, Threshold View, Neonatal Decision Making, Values, Medical Vitalism
- How should the ethicist think through the relationship between apparently competing bioethical views in particular clinical circumstances?
- Should there be a competency evaluation for parents, guardians, surrogates, or other proxy medical decision makers?
- Should society develop policies to limit health care in circumstances where there is an appreciable likelihood of extremely poor outcomes?
25. Ethical Challenges in the Care of the Inpatient with Morbid Obesity
Paul L. Schneider, Zhaoping Li
Abstract: Objective: To provide a thorough analysis of the range of ethical concerns that may present in relation to the care of the morbidly obese inpatient over the course of several years of care. Methods: A narrative of the patient’s complex medical care is given, with particular attention to the recommendations of three separate ethics committee consultations that were sought by his health care providers. An ethical analysis of the relevant issues is given within the Principles of Biomedical Ethics framework, highlighting the principles of autonomy, beneficence, non–maleficence, and justice. Results: The case study presents a patient with morbid obesity, obesity hypoventilation syndrome, and numerous ICU admissions. The first ethics consultation was requested regarding the permissibility of forcing bariatric surgery on him against his will. The second consultation was regarding a request by nursing staff to no longer attempt to mobilize him. The third was regarding the patient’s refusal to be discharged. Conclusions and Recommendations: The care of inpatients with morbid obesity presents a unique set of practical and ethical challenges to health care personnel. A disciplined approach to ethical analysis using the Principles of Biomedical Ethics framework may be helpful in dealing with these challenges. Recommendations for improvement are made for the individual and local settings, as well as nationally.
Keywords: Autonomy, Beneficence, Ethics, Justice, Morbid Obesity, Non–Maleficence, Paternalism, Professionalism
- Sometimes in health care there is a mismatch between a units’ ideal admission criteria and the actual patients admitted. Is it appropriate to try to help health care workers feel more comfortable with patients who are not ideal in some way? If so, are there limits to this approach?
- A “hard paternalism” approach in this case might have involved placing this patient on a locked unit so that he could not have restaurant deliveries. Given his dire clinical circumstances, could this have been ethically supported?
- Do you agree that providers were overly reliant on the principle of autonomy in allowing this patient to be poorly compliant with dietary therapy in the on–campus nursing home? If not, can you suggest alternate rationales?
26. The Clinical Bioethicist’s Role: Should We Aim to Relieve Suffering?
Deborah L. Kasman
Abstract: Bioethics consultants arrive at their profession from a variety of prior experiences (e.g., as physicians, nurses, or social workers), yet all clarify ethical issues in the care of patients. The integrated bioethicist’s role often extends beyond case consultations. This case presents a young person suffering a prolonged and gruesome end–of–life journey, which raised questions regarding the bioethicist’s role in alleviating suffering as part of the health care team. The case is used to illuminate forms of suffering experienced by patients, families, and health care providers. The question arises as to whether it is in the ethicist’s jurisdiction to alleviate suffering, and if the answer is “yes,” then whose suffering should be addressed? The discussion addresses one approach taken by an integrated bioethicist toward promoting delivery of ethical and compassionate care to the patient.
Keywords: Clinical Ethics Consultation, Healing, Meaning in Death, Provider Well–Being, Suffering
- Is relief of suffering part of a clinical ethics consultation? Should it be? Why or why not?
- How do you respond to suffering? What are your most productive responses? Unproductive responses?
- Should a clinical ethicist be involved in clinical care without maintaining direct patient contact? If patients/families refuse ethics involvement, what role can the clinical ethicist play in promoting ethical medical decision–making?
- When a clinical ethicist is also trained as a licensed health provider (e.g., physician, nurse, chaplain, or social worker), can prior clinical experience affect the ethicist’s role in responding to suffering? Can this be an advantage, a hindrance, or both?
27. To Enroll or Not to Enroll?: A Researcher Struggles with the Decision to Involve Study Participants in a Clinical Trial That Could Save Their Lives
Abstract: Hundreds of thousands of clinical trials are conducted annually around the world, working to further scientific knowledge and expand medical treatment. At the same time, clinical trials also present novel challenges to researchers who have access to large pools of research participants and are routinely approached by pharmaceutical companies seeking to recruit subjects for clinical trials. This case study discusses the ethical dilemmas faced by a community health investigator who received an invitation to enroll people who inject drugs (PWID) into a clinical trial of a drug that promised a new treatment option for Hepatitis C. The author elaborates on the ethical tensions that he confronted between “doing good” and “avoiding harm. The paper suggests that issues of distributive justice should also be considered, particularly when the drugs being tested might eventually command prices that place them out of reach of the population enrolled in the trial. This case does not attempt to provide an ethical road map to assist researchers in similar circumstances, but rather to illustrate some of the considerations involved in making a decision about whether or not to participate in clinical trials research.
Keywords: Beneficence, Clinical Trials, Enrollment, Justice, Non-Maleficence
- Since they were originally formulated a few decades ago, the principle of respect for autonomy seems to have gained priority in detriment of the principle of justice. With drug prices reaching exorbitant levels—more than eighty thousand dollars for a full HCV treatment—placing access beyond the reach of many, shouldn’t bioethicists reconsider the way we think about justice?
- The principle of beneficence establishes the requirement of a social good, as one of if its main criteria. But drug prices seem to benefit the pharmaceutical industry while depriving many of much needed drugs. With this in mind, how do you think we should interpret this principle?
- Imagine you or somebody you know has the opportunity to participate in a clinical trial. What elements would you need in order to make an informed decision? And an ethical one?
28. Sometimes Those Hoofbeats Are Zebras: A Narrative Analysis
Lori A. Roscoe
Abstract: The case of BB, an 11-year-old girl who was hospitalized because of sudden odd seizure-like symptoms and catatonic affect, highlights several ethical issues and communication problems. The correct diagnosis was initially missed, partly because physicians are trained to think of the most common explanation for a patient’s symptoms; the medical education truism “when you hear hoofbeats, think horses, not zebras” was not helpful in BB’s case. The common habit of medical professionals to not revisit a diagnosis once one is established also led to missed opportunities to provide appropriate care for this young patient. The difficulty nurses and/or family members have in questioning a diagnosis and treatment plan are also discussed.
Keywords: Clinical Ethics, Ethical Focus, Case Study, Communication, Medical Error, Moral Distress, Two-Challenge Rule
- Hospitals are generally reluctant to admit patients known to have problematic behavior or unknown diagnoses, yet in this case, having a new physician on her case was the key to making an accurate diagnosis. How might transfers between medical facilities be reimagined to improve patient care, rather than being seen as “dumping” of undesirable problematic patients and families?
- What interventions or changes in protocol might empower nurses and family members to productively question a physician’s diagnosis and treatment plan for a patient?
29. A Jehovah’s Witness Adolescent in the Labor and Delivery Unit: Should Patient and Parental Refusals of Blood Transfusions for Adolescents Be Honored?
Johan Christiaan Bester, Martin Smith, Cynthia Griggins
Abstract: A 15-year-old was admitted to the labor and delivery unit for induction of a 41-week-gestation pregnancy. Her parents, members of Jehovah’s Witnesses, and the patient, who had been studying the religion but had not yet been baptized, were adamant that no blood transfusions would be accepted even if a life-threatening hemorrhage were to occur. In our analysis, we examine the underlying ethical conflict and issues raised by this case. We considered two important ethical questions in analyzing the dilemma: first, whether adolescents are capable of providing autonomous and authentic refusals for lifesaving interventions; and second, whether parents can refuse such interventions for their adolescent children based on their religious beliefs. We provided justifications for not considering the adolescent’s refusal as autonomous and for overruling the parental refusal, concluding that there was ethical support for providing potentially lifesaving transfusions should they become clinically indicated. We also suggested strategies to avoid blood loss and the need for transfusions in order to respect the stated values and preferences of the patient and her family to the greatest degree possible. In order to protect the privacy of the patient and her family, details in this case have been changed and no identifiable information has been used.
Keywords: Best Interests, Blood Transfusions, Jehovah’s Witnesses, Principlism, Religious Conflict
- The authors have defended a principle that it should generally be presumed that adolescents lack the necessary decision–making capacity to provide autonomous refusals for life–saving treatments, unless convincing evidence to rebut this presumptionis present. Do you agree with this principle, and if so, why? What would count as convincing evidence? If not, what reasons can you provide for dismissing this principle?
- In the article a threshold is described for parental decision–making. Beyond that threshold, it is the duty of clinicians to challenge the parental decision, and the duty of the state to overrule the parental decision. Do you agree that the threshold to overrule parental decision–making was reached in this case? Why or why not? What might have changed your view?
- Different jurisdictions have reached different conclusions in cases regarding the authority of adolescents to refuse life–saving treatments. States also have different stances on the “mature minor” rule. How does the neurodevelopment and cognitive development evidence the authors briefly discuss in the article influence your thinking on these issues, and specifically on whether states should have a “mature minor” rule and how they should interpret and apply it?
30. Reframing Medical Appropriateness: A Case Study Concerning the Use of Life-Sustaining Technologies for a Patient With Profoundly Diminished Quality of Life
Colleen M. Gallagher, Elijah Weber, Nisha Rathi
Abstract: This case study considers the clinical ethics issues of medical appropriateness and quality of life for patients who are critically ill. The case involves a terminally ill cancer patient with a profoundly diminished quality of life and an extremely poor prognosis; his spouse desires to bring him home, where she will arrange to keep him alive for as long as possible via life-sustaining interventions. The analysis engages with the complicated notion of medical appropriateness, both in general and as it pertains to life-sustaining interventions in a critical care setting, and considers the ethical implications of the various ways in which one might understand this concept. It also addresses the significance of quality-of-life determinations, emphasizing the role of individualized values in determining the importance of quality of life for clinical decision-making. The discussion concludes with a description of the two strategies employed by the ethics team in helping to alleviate the medical team’s concerns about this case.
Keywords: Case Study, Method, Clinical Ethics Focus
- Is the goal of keeping a terminally ill patient, with a profoundly diminished quality of life, alive for as long as possible via life-sustaining technologies a medically appropriate goal of care?
- Is “medical appropriateness” a useful term for conducting an ethical analysis of a particular case?
- What is the ethical significance of a profoundly diminished quality of life for determining goals of care for a particular patient?
- Do quality of life considerations ever outweigh patient or surrogate decision-maker preferences regarding the ethical justifiability of continuing with life-sustaining interventions?
31. "We Didn't Consent to This"
Shalini Dalal, Jessica A. Moore, Colleen M. Gallagher
Abstract: Patients and their families have identified the need for ongoing and effective communication as one of the important aspects of medical care, especially when the cessation of disease–modifying therapies is being considered at the end–of–life (EOL). Despite recognizing that this communication is extremely important, clinicians are uneasy and find themselves inadequately trained to “break bad news” and manage emotional responses from the patient/family. The inherent difficulties in accurately predicting prognosis and discussing potential complications make these conversations even more challenging. In most circumstances, patients and their families want to know the truth about their disease and what will be done to make them feel better, and to receive enough information to help them choose a course of action. For many terminally ill patients and their families who have elected to transfer to the palliative care unit (PCU) for EOL care, the assumption is that most of these conversations have already been held, and the ongoing focus becomes managing these patients’ physical and psychological sources of distress, validating their and their families’ emotional responses and preparing them for what is to come. This case report illustrates the need for cultural understanding and clear communication among physicians, members of the clinical team, and patients and their family members.
Keywords: Communication, Cultural Competence, End–of–Life, Palliative Care
- What can/should one do to determine if communication of a poor prognosis has been provided in a manner and to the extent that the patient or surrogate decision–maker wants and allows him/her to make a fully informed decision? How can one go about exploring the extent of patient/family understanding and goals/expectations? What would you do if you discovered that the poor prognosis has not been explained in enough detail to facilitate informed decision–making?
- What resources are available in your institution to help health care providers improve upon their cultural competence with the patient populations seen most often in your area? What resources are available to assist in the care, real–time, of patients from various faith traditions and cultures in your hospital?
- Have you experienced a situation similar to the one presented here? What did you do in that case or would you do in future cases to improve communication and outcomes? Is this a personal practice, or has it been implemented as a “standard practice/ process” in your group, when applicable?
32. "Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online"
Marleen Eijkholt, Jane Jankowski, Marilyn Fisher
Abstract: Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.
Keywords: Care-Ethics, Ethics, Internet, Negative Comments, Online, Patient Blogs, Social Media
- What strategies does your institution offer to deal with publicly displayed negative comments from patients?
- To what extent should institutional support be offered to HCPs in interacting with negative eWOM?
- Should providers communicate their distress to a patient (or to family members) about negative expressions in narrative formats, and if so, how can this be done?
33. "A Personal Narrative on Living and Dealing with Psychiatric Symptoms after DBS Surgery"
Frédéricand Gilbert, John Noel M. Viaña
Abstract: Although deep brain stimulation (DBS) may result in dramatic motor improvement in people with Parkinson's disease (PD), it has been correlated with a number of postoperative psychiatric side effects. We report a case of a person with PD experiencing depression and hypomania following DBS surgery. We provide a detailed report of the patient's personal experiences dealing with and managing these psychiatric side effects for three years. Providing a personal narrative focusing on detailed patient subjective experiences complements reports that give insight into the short- and long-term effects of DBS on established psychiatric measures and neurologic activity. But, most importantly, such a qualitative approach provides prospective patients and clinicians with a broader ethical picture of real-life challenges faced and coping strategies employed by PD patients treated with DBS who are experiencing psychiatric adverse events. This case study reinforces the ethical need to disclose the potential risk of harm to prospective patients as well as the importance of establishing a multidisciplinary postoperative supportive group.
Keywords: Deep Brain Stimulation, Identity, Neuropsychiatric Effects, Parkinson's Disease, Self, Side Effects
- What obligations do DBS providers and researchers have to offer follow-up care aimed at addressing potential personality and behavior changes that can cause patients distress?
- What are the trade-offs between the motor ben-efts of DBS and the potential psychological harm induced by treatments?
- Should decision aids be developed to help patients weigh the pros and cons? What would you put into such a decision aid?
- Should family members have a greater voice in DBS decision-making than in ordinary healthcare decision-making given the potential impact of DBS on personality and behavior?
34. "The Will Reconsidered: Hard Choices in Living Organ Donation"
Robert M. Guerin, Elizabeth O’Toole, Barbara Daly
Abstract: In the following article, we illustrate an interview between a living donor advocate and a potential living organ donor in which the donor faced a hard choice: the reasons to donate and the reasons not to donate were equally persuasive. In the discussion that follows, we analyze the act of willing, what differenti-ates coercion and willing, and how the case study highlights a different, but by no means rare, instance in which donors feel paralyzed by the choice at hand. In such cases, we suspect that donor advocates either do not approve the potential donor for transplantation or simply remain neutral. But we think that this approach beneﬁts neither the donor nor the recipient. We conclude this study with recommendations for living donor advocates, providing questions that might solicit donors’ deeper values and suggesting that in these situations donors may beneﬁt from additional time for reﬂection.
Keywords: Coercion, Donor Advocate, Hard Choice, Living Donor, Self, Willing, Persuasive Communication, Shared Decision Making, Competing Values
35. "Malleable Transplant Criteria: At What Cost?"
Angel Alsina, Rebekah Apple, Nyingi Kemmer and James P. Orlowski
Abstract: An 18-year-old male who had been diagnosed at age 7 with a rare, progressive liver disease was referred to the transplant center and received a transplant, even though he did not meet the center’s criteria for a patient with hepatopulmonary syndrome (HPS). Complications required relisting the patient urgently, but he eventually fully recovered; total hospital charges for his treatment exceeded $5 million. Reflection upon the case resulted in analysis of two ethical questions: primarily, clinician obligation to balance the provision of actuarially fair health care to society against the healing of a single patient; secondarily, the effects of malleable transplant criteria on trust in the patient selection process. We affirmed that physicians should not be principally responsible for justifying financial investment to society or for upholding beneficence beyond the individual physician and patient relationship in order to contain costs. We concluded, however, that such instances, when combined with manipulation of transplant center criteria, pose a potential threat to public trust. We therefore suggested that transplant centers maintain independent ethics committees to review such cases.
Keywords: Beneficence, Organ Donation, Organ Transplant, Rationing, Transplant Criteria, Ethics Committees, Hospital Charges, Moral Obligations, Hepatopulmonary Syndrome
- The authors mention rationing and affirm the tenet that it is unethical to withhold care because of exorbitant costs. What are the ethical implications of this practice, given that the United States has acknowledged the current system as unsustainable? Would you defend providing heroic, expensive care to every patient, regardless of the effect such behavior would have on the future of health care?
- The authors noted the difference between the allocation of organs and patient selection. A number of ethical principles are applied to donation and transplantation, and they often contradict each other. Is it possible to reconcile utilitarianism and deontology? What other principles collided in this case, and how could these conflicts have been avoided?
- A recent study in JAMA found that “prices of labor and goods, including pharmaceuticals and devices, and administrative costs appeared to be the main drivers” of high health care costs in the United States (Papanicolas, Woskie, & Jha, 2018, p. 1024). Growing attention is being paid to the income of nonclinical health care professionals, and Commins (2018) noted that compensation for nonclinician chief executive officers in over 20 US health systems almost doubled between 2005 and 2015. How much of an issue is compensation for nonclinicians, given the rising amount of health care spending in the country? Would adjustments to administrative costs necessarily result in more money being spent on patient care?
36. "Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience"
Elizabeth R. Brassfield, Manisha Mishra, and Mara Buchbinder
Abstract: This case study illustrates the complex role that a physician’s conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state’s “Patient Choice and Control at End of Life” Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician’s engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.
Keywords: Conscience; End-of-Life Care; Medical Ethics; Nonabandonment; Patient-Provider Relationship; Physician Aid-in-Dying/Physician-Assisted Suicide; Terminal Illness
- How does Dr. Jones’s response to Mary challenge conventional bioethical views of conscientious objection?
- What are the limits of a commitment to nonabandonment?
- Given a more robust understanding of the role of conscience in medical care, what form, if any, should protections for conscience take?