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
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