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Posted on July 26, 2017 at 2:57 PM
The 2017 ASBH conference in October 2017 includes over 400 workshops, panels, and papers in bioethics and the health humanities.  Here are ones that pertain to end-of-life issues.


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU - Limited English Proficiency as a Predictor of Disparities (Amelia Barwise)

Importance: Navigating choices in predominantly English-speaking care settings can present practical and ethical challenges for patients with limited English proficiency (LEP). Decision-making in the ICU is especially difficult and may be associated with disparities in health care utilization and outcomes in critical care. 

Objective: To determine if code status, advance directives, decisions to limit life support, and end-of-life decision-making were different for ICU patients with LEP compared to English-proficient patients. 

Methods: Retrospective cohort study of adult ICU patients from 5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 

Results: When adjusted for severity of illness, age, sex, education, and insurance status, patients with LEP were less likely to change their code status from full code to do not resuscitate (DNR) during ICU admission (OR, 0.62; 95% CI, 0.46-0.82; p

Conclusion: Patients with LEP had significant differences and disparities in end-of-life decision-making. Interventions to facilitate informed decision-making for those with LEP is a crucial component of care for this group.

THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and Communicating Risks at the End of Life (Janet Malek)

Clinicians sometimes decline to offer interventions even if their refusal will result in an earlier death for their patients. For example, a nephrologist may decide against initiating hemodialysis despite a patient’s rising creatinine levels if death is expected within weeks even with dialysis. Although clinicians can describe their reasons for not offering an intervention (often related to overall prognosis, suffering, and mental status) toward the end of life, their reasoning has not been explored in detail or described in a nuanced way. Anecdotal experience as well as published scholarship suggests that clinicians decline treatment if “the risks outweigh the benefits.” This facile explanation does not adequately address concerns of a family member who wants to give their loved one every possible chance, arguing, “But she’ll die if you don’t! What do we have to lose?”

In an attempt to bridge this impasse often encountered by clinical ethics consultants and critical care physicians, we conducted interviews with physicians (intensivists, oncologists, surgeons, and nephrologists) about situations in which they refused to offer CPR, chemotherapy, surgery, and dialysis. Our goal was to understand physicians’ perceptions of risks and benefits at the end of life and how they communicated those risks and benefits to patients and their families. This presentation describes clinicians’ reasons for declining to offer intervention when the end of life is near and offer suggestions for ways to describe this decision effectively to patients’ families.

THU 1:30 pm: Social Justice, Personal Choice and Medical Aid in Dying: Reflections on Canada’s Shifting Priorities on End-of-Life Care (Daryl Pullman)

In February of 2015 the Supreme Court of Canada declared unconstitutional section 241 of Canada’s Criminal Code that prohibited either assisted suicide and called on the federal government to introduce new legislation to permit medical aid in dying (MAiD). This new legislation was approved by Parliament in June of 2016.

Since then provincial governments, professional regulatory bodies and regional health authorities across the country have been scrambling to adjust internal policies and procedures to ensure compliance with the law, even as requests for this new “medical service” have been coming in. At the time of this writing more than 800 individuals from across the country are reported to have received MAiD.

Developing policies, and procedures and responding to requests has required a substantial investment of resources in an already over taxed health care system. Put otherwise, the relatively small percentage of terminally ill patients who request MAiD are consuming an inordinate amount of health care resources to receive a ‘medical service’ to which the Supreme Court has declared they are entitled. In this paper I discuss how this new law is unjustly shifting Canada’s priorities with regard to end-of-life care including an unjust allocation of resources. Indeed, given the manner in which this service is being introduced and how the criteria for it are being expanded, it could be argued that Canada is in danger of medicalizing suicide.

THU 2:45 pm:  Robbed of Life: A Thomistic Position on Terminal Sedation (Jessica Adkins)

Terminal sedation, broadly understood, is the act of administering high doses of sedative medicine to a terminally ill patient with the intent of relieving suffering. Death must never be intended, but a hastened death can be foreseeable. Many arguments in support of terminal sedation rely on Aquinas’ Doctrine of Double Effect (DDE). Such arguments say: the act of relieving suffering is not an intrinsically morally evil action; death is not the cause of the relief of suffering but rather the use of medication; and, foreseeable possible death is an unintended consequence of terminal sedation, but it is a consequence tolerated because the relief of suffering is of equal or greater value to offset that negative consequence of a hastened death. The DDE argument appears satisfying since it not only justifies terminal sedation but it also differentiates the act from euthanasia and physician-assisted death.However, I am not convinced applying the DDE is enough to show the moral permissibility of terminal sedation if one actually wants to take a Thomistic approach to the issue. The task of this paper is to approach terminal sedation from a Thomistic position but to avoid the typical reliance on the DDE. Instead, I wish to focus on Aquinas’ thoughts on justice, robbery, due care, and justice. I conclude that a Thomistic position would not find acts of terminal sedation as morally permissible, and that merely defending terminal sedation with DDE argument is not enough to offer a robust Thomistic argument on the matter.

THU 2:45 pm: Do Nurse Practitioners Have a Role in Physician Assisted Death? (Liz Stokes)

As the debate on assisted death continues, there are many physicians who refuse to participate, leaving the opportunity for participation by other members of the health care team, such as nurse practitioners. This presentation will discuss the historical role of nurses around the world in assisted death and the challenges that nurses face in caring for patients at the end of life. The discussion will be cased-based and identify the ethical and legal challenges that nurses may face with patients who have requested assistance in dying. Several nursing organizations and several professional Codes of Ethics expressly prohibit a nurse’s involvement in hastening a patient’s death because it is against the ethical traditions and goals of the profession, and its covenant with society. The International Council for Nurses is silent on the specific role of the nurse in assisted death, but advocates for a palliative care approach aimed to reduce suffering for patients at the end of life.

Canada is the first country in the world to allow nurse practitioners, rather than physicians, to administer lethal medication in assisted death. There will be an interactive discussion of the role of the nurse in assisted death and the ramifications of this significant shift in policy. The discussion will conclude with practical methods for nurses and nurse practitioners to utilize in caring for patients who have requested assisted death, including refusal, conscientious objection and withdrawal of care.

THU 2:45 pm: Medical Aid in Dying: Who Should Be Eligible (Catherine Rodrigue)

Since 2015, legislation allows medical aid in dying (MAD) in Quebec, Canada. The eligibility criteria include age of majority, end-of-life prognosis, suffering from a serious, incurable illness at an advanced state of irreversible decline, and experiencing constant and unbearable physical or psychological suffering. In 2016, a federal bill established similar criteria to those in effect in Quebec, however there are some important distinctions. For example, the federal criteria refer to being at a point where natural death has become reasonably foreseeable rather than at end-of-life. The definition of eligible medical conditions is also more restrictive in Quebec. Thus many are excluded in accordance with the provincial criteria, despite the broader scope set federally. For example, those suffering from degenerative diseases without a definite end-of-life prognosis, and those with Alzheimer-type dementia making an advanced request for MAD applicable when advanced stage is reached (can no longer consent) are not currently eligible. The media have recently reported on two such stories: one was killed by her husband wanting to abide by his wife’s wishes, and the other traveled to Switzerland to access euthanasia. The provincial government has now shown a willingness to open up discussions on eligibility to MAD. Broadening the criteria would support the autonomy and respect wishes of a larger number of people. However, it will also raise challenges considering the conflicting values of many, including healthcare professionals. This presentation aims to present the legal framework for MAD, and then to analyze the ethical issues related to broadening the criteria.

THU 2:45 pm: Pathways to Convergence: Sharing a Process that Aimed to Examine the Diverse Perspectives of Catholics on Advance Care Planning and Palliative Care in the United States (Robert Barnet, John Carney, Matthew Pjecha, Carol Taylor)

Pew Charitable Trusts recently funded a project to examine views among Catholics in the U.S. regarding end-of-life, palliative care and advance care planning. Center for Practical Bioethics (CPB) served as coordinator for the project. A six-member steering group representing ecclesial, Catholic Health, and ethical interests, along with CPB (a secular organization) invited three groups of eight Catholics from different disciplines and perspectives to capture conservative and progressive themes within American society and among practice settings. Roles and responsibilities within those realms were prominently featured in deliberations with goal of clarifying areas of divergence, convergence and possible paths forward. The groups examined: - Social responsibility derived from tradition (how the Church presents itself and speaks in the public square and what informs this presence) - Covenant and contract (roles of free and informed consent in advance care planning and decision-making between patients and providers) - Shared decision making (Church teaching that informs specific decisions faced in goals of care conversations and interdisciplinary care planning for palliative care patients)Identified as Pathways to Convergence the groups aspired to identify common values and principles and report on the results following a convening. Presenters will explore how ethicists can use the processes, methods and findings of this group when workings with patients for whom faith tradition may play an important role and among providers, and others who share different perspectives on end of life to facilitate optimal advance care planning and palliative care.


FRI 8:00 am: Parents’ Faith-Based Demands for Potentially Inappropriate Treatment and the Principle of Liberal Neutrality (Laura Guidry-Grimes)

When faced with the impending death of a child, parents will often exhibit wishful thinking and make demands for potentially inappropriate treatment. Behind these well-intentioned demands can be different forms of hope -- such as hope that he child will beat the odds, that a miracle will occur, or that divine forces will reward the parents' fight for life. It is widely acknowledged in the United States that physicians are not ethically obligated to provide futile or inappropriate treatment. But even if they are not obligated to provide this treatment, is it ever ethically permissible to provide it? Is it ever ethically prohibited? These ethical nuances are explored in two clinical cases, one from neonatology and one from pediatrics. The cases share many feature, but I argue that they call for different recommendations from the clinical ethics consultant. In one case, the mother's worldview was at stake, and she argued that she and her infant would suffer severe metaphysical harm if the medical team withdrew life-sustaining treatments. In the other case, the father's beliefs were closer to superstitions and unrealistic optimism, and he argued that the medical tests and physicians were all in error about his son's diagnosis and prognosis. I show that the principle of liberal neutrality, a concept from political philosophy, is applicable in clinical contexts and helpful for distinguishing these cases. I offer a typology of faith-based requests, showing how these requests can vary in their moral pull when the principle of liberal neutrality is applied

FRI 8:00 am: Community Neonatal Palliative Care: Preparing for Death or Helping to Support Life? (Paul Mann)

Palliative care specialists are increasingly called upon in neonatal intensive care units to optimize clinical outcomes for infants with congenital malformations, genetic anomalies and/or born extremely premature. In the inpatient setting, palliative care consultants enhance communication with families, providing prognostic and psychosocial support while alleviating suffering through advanced management approaches. Additionally, for infants who have achieved adequate clinical stability or whose families have elected for comfort care, palliative care is instrumental in coordinating transitions to home.Once at home, however, many families are confronted with the ambiguity of an uncertain clinical trajectory. There are few standardized approaches for ongoing care of medically complex infants, and time and experience limitations may preclude primary care providers from providing optimal care. Parents who continue conventional medical therapies must skillfully navigate a labyrinth of subspecialist visits and can find difficulties determining who has ultimate ownership for the medications and technologies that their infant is dependent upon. Other parents who were counseled that death was imminent may have no formal plan for follow-up with any medical provider. Some of those parents eventually elect to transition back to conventional medical interventions as the infant lives longer or does better than anticipated.In order to enhance outcomes for such medically complex infants and meet the needs of their families, a new transitional care approach is needed. This paper proposes a medical home led by palliative care specialists and centered on coordinating multidisciplinary care to support the ongoing life, and quality of life, of the infant and family.

FRI 8:00 am: Neonatal End-of-Life Decision-Making: Centering Bioethics Within an Anthropological Framework (Manya Hendriks)

In the past decades, a shared approach has become the ideal for neonatal end-of-life decision-making. We conducted an empirical study to explore involvement of parents of extreme preterm infants in decision-making through participant observation and twenty in-depth interviews in a level III NICU in Switzerland. In the face of the ideal of shared decision-making, our study shows that parents were not involved in the decision to continue or withdraw intensive care treatment. Despite not being involved, perhaps surprisingly, parents were satisfied with the decision-making process. This is consistent with other studies in neonatology, advanced cancer care and intensive care units, where the ideal of shared decision-making is not always portrayed in the empirical reality. The question in this presentation focuses on how researchers should proceed when apparent bioethical ideals contradict with anthropological observations. On the one hand, these discrepancies could be contingent on the context. Physicians could steer decisions towards treatment without outlining or explaining alternatives. Clearly, then, lots of improvements are still to be gained in establishing a shared decision-making approach. On the other hand, some bioethicists have questioned whether the mainstream bioethical approach to autonomy might lack the nuance of a complex empirical reality in which patients or surrogate decision-makers cannot and do not want to take part in the decision-making approach. It is part of our responsibility as bioethicists to critically reflect on and bridge normative ideals with diverging empirical realities.

FRI 10:45 am: Should the Law Permit Physician-Assisted Death for Dementia? (Rebecca Dresser)

As more of us live into our later years, more of us become susceptible to Alzheimer’s disease and other age-related dementias. Many people fear dementia, and some argue that physician-assisted death should be available to those seeking to avoid the indignity of life with dementia. The prospect of legalizing assisted death for potential or actual dementia patients raises distinct issues. In this presentation, I will consider whether U.S. law should permit physician-assisted death for: (1) at-risk individuals seeking to avoid a possible future with dementia; (2) individuals with mild or moderate dementia; and (3) individuals who make advance directives requesting assisted death if they develop dementia. I will describe concerns related to predictive uncertainties, decision-making capacity, changes in personal interests, and activation criteria for advance euthanasia directives. I will also examine the practical effects of laws permitting dementia-based physician-assisted death in the Netherlands and Belgium, as well as the ethical implications of those laws.

FRI 10:45 am: 'Never Tell Me the Odds!': Intellectual Virtues and Vices in Surrogate Decision Making (Alan Murphy)

In what respects (if any) do surrogate decision-makers wrong patients by insisting upon courses of action (1) that depart from medical recommendations, (2) that thereby expose patients to avoidable risks, and (3) that the patients might not have chosen themselves? While both the substituted judgment standard and the best interests standard of surrogate decision-making regard such behavior as aberrant on its face, I argue that neither standard alone nor both together can account in all instances for the standards’ shared intuition that there is something wrong about knowingly exposing patients to avoidable risks that the patients might not have chosen themselves. I suggest that the incompleteness of the account offered by these standards is due to their close focus on outcomes and to risk’s inherently uncertain contribution to outcomes. Albeit in different ways, both the substituted judgment standard and the best interests standard focus on outcomes: the substituted judgment standard focuses on securing a decisional outcome identical to what the patient would have sought, while the best interests standard focuses on the best available medical outcome. Neglected are the intellectual dispositions and habits of the surrogate, what under ethical analysis we might call the surrogate’s intellectual virtues and vices. I propose a virtue-based supplement to the substituted judgment standard and best interests standard for surrogate decision-makers.

FRI 10:45 am: Legal Update 2017: Top 10 Legal Developments in Bioethics (Amy Campbell, Arthur Derse, Paul Lombardo, Thaddeus Pope)

Each year brings with it important legal developments related to bioethics. This panel will discuss the latest legal trends of significance for ASBH members. This annual panel has been a well-attended and popular session. This year’s panel will be interdisciplinary and diverse both in terms of topics covered under the law theme, and in terms of the speakers’ geographic regions, areas of expertise, and institutional affiliations. In keeping with the conference theme, this year, the panelists will address legal developments in areas with a range of bioethical concern, with complex and strongly held perspectives from left, right, and center with a focus on how bioethics has fared in courts, legislatures and administrative agencies through their decisions and actions in bioethics-related law. Relevant recent legal developments will include those affecting individuals, health professionals, and populations at the state, federal, and international level. Panelists will cover thematic areas of interest to the diverse ASBH audience and within their expertise, representing a breadth of key areas in law and bioethics. Major legal developments addressed include: - reproduction, assisted reproductive technologies, and issues concerning vulnerable populations, e.g., individuals with disabilities (Panelist 1) - brain death (including unilateral withdrawal of somatic support), futility, and informed consent/unwanted medical treatment (Panelist 2) - aid-in-dying/physician-assisted suicide, and withdrawal and withholding of life-sustaining treatment (including DNR and POLST orders) (Panelist 3) - public health law and government regulation of behavior (Moderator). All ASBH attendees are invited to discuss these emerging legal trends.

FRI 10:45 am: Your Recovery Is Not MY Recovery: Testing the Shared Decision-Making Model (Olubukunola Dwyer)

In recent years, shared decision making has become the standard for medical decision making, with the goal of making treatment decisions that are medically appropriate and consistent with the patient’s values, goals, and preferences. Another perspective recognizes that when medically appropriate treatment options that have the potential to detrimentally affect a patient’s quality of life are being considered, the patient’s preferences are more heavily considered. Following the shared decision making model becomes rather difficult when medical providers are confronted with the refusal of beneficial treatment (e.g., refusal of intubation while treating pneumonia and chronic obstructive pulmonary disease).

Ethicists usually address the value laden conflicts that arise when families request possibly non-beneficial treatment, but what should happen when the unusual case arises of a family setting limitations for beneficial treatment before the medical providers? In our case, a family with complex dynamics requested limitations of treatment (removal of an external ventricular drain) that the team viewed as beneficial. The family’s request was informed by the patient’s previously expressed views of not living with a disability. Their goal was to spare the patient from living with a quality of life he would find unacceptable because it would likely involve some level of disability. 

Ultimately, our team decided to honor the family's request. In this presentation, by closely examining the shared decision making model, we hope to clarify when it is ethically acceptable for the values of the patient to outweigh what is medically beneficial to him.

FRI 10:45 am: Dying in America: Ethics in the Middle? (Richard Butin, William Colby) 

Dying in America: Ethics in the Middle? Right to Life Right to Die The right of self-determination, the right to refuse treatments, even the 'right to try' are all rather modern constructs created by fantastic advances in technology and information dissemination.Though seemingly disparate positions, the proponents of each feel a strong moral obligation to preserve and promulgate their view to ensure societal choice. The debate surrounds the finality of life and death which creates urgency. It often involves surrogate decision makers which heightens the emotion increases the complexity.Expressed preferences regarding end of life decisions both inside and outside of medical facilities are gaining traction but have their limitations and are not universally recognized or utilized.The clinical ethics principles of autonomy, both of the patient and of the clinician, clash when requests for potentially inappropriate treatments are received.Is there middle ground or does the ethics community even belong in the center on these issues?A lively discussion of the current state of dying in America, utilizing presentations by a seasoned Palliative Care clinician and a nationally renowned attorney and author both experienced with these issues will inform and challenge the audience. Included will be a historical and personal perspective of the landmark Missouri legal case of Nancy Cruzan and the subsequent constitutional imperative of self-determination. There will be exploration of the increasing longevity and shrinking caregiver support ratios which make the future of healthcare challenging to consider.

FRI 2:00 pm: Responding to the California End of Life Option Act: A State-Wide Ethics Initiative (Elizabeth Dzeng, Lindsay Forbes, Barbara Koenig, Neil Wenger)

Physician aid in dying (PAD) is legal in six U.S. states and many others are considering implementation. We argue that bioethics programs have an obligation to be at the “center” of the public response to PAD enactment. The End of Life Option Act (EOLOA) in California requires that we balance the values of choice and self-determination with other considerations. Tensions are not new to those who routinely care for seriously ill patients. Death and dying has been central to bioethics since its start. When California’s law passed, we asked: How can California’s bioethics centers promote thoughtful deliberation to create patient-centered policies? In 2015, we organized an emergency conference to help health care institutions develop policies to guide response, addressing varying degrees of participation, and managing conscientious objection. During the proposed interactive workshop, we will describe the next phase of our “response” to legalization. Based on one year’s experience, we will report on our efforts, including reconvening the multidisciplinary stakeholders who attended our original conference. Prior to the conference we will: survey key health care organizations, including the development and administration of a provider survey targeting physicians and social workers, often the key access point for patients seeking assistance with dying; create a set of common data elements to augment required reporting; and conduct and report the results of an ethnographic study of 20 Californians who sought PAD, as reported by their surviving family members and professional caregivers. We argue that bioethics must become the moral “center” of discussion and debate.


SAT 8:00 am: One Patient, or Two? Brain Death and the Pregnant Patient (Jacob Dahlke, Robert Macauley, Thaddeus Pope)

Death by neurological criteria and refusal of medical treatment by a pregnant patient are both complex ethical issues. The case of Jahi McMath highlights the complexity of the former, with competing clinical claims, questions of unprofessional behavior by physicians, and judicial and legislative deliberations with potentially revolutionary implications. The latter raises the question of the moral value of the fetus and the degree to which a pregnant woman's right to refuse treatment may be limited, as codified by law in several states. When both issues are relevant to a specific case, though, ethical decision-making becomes markedly more complicated. This session will examine competing rights and responsibilities toward a pregnant patient who is suspected to be-or has been declared-dead by neurological criteria, through analysis of two cases. One took place in a state where the family requested discontinuation of treatment but this was not legally permitted, prompting a comparison to the well-known case of Marlise Munoz in Texas. In the other case (in a different state), the family wished to continue the pregnancy with the hope of a healthy baby, prompting discussion of whether the patient should even be evaluated for brain death (both out of concern for the fetus's well-being as well for potential financial hardship for the family if brain death were confirmed), how long to continue the pregnancy to maximize fetal well-being, and how organ donation figured into the treatment plan (if at all). In both cases, clinical, ethical, and legal (both state and federal) considerations will be addressed.

SAT 8:00 am: Getting to the Heart of Ethical and Safety Concerns Surrounding Living Wills and POLST (Ferdinando Mirarchi)

Emerging research suggests ethical & safety concerns related to utilization of advance directives and Physician Orders for Life Sustaining Treatment (POLST). This session will equip ethicists and healthcare providers with tools to assess institutional practices, implement education/safeguards, minimizing patient safety risk and medical errors. The session will address operational efficiencies gained by utilizing resuscitation safety checklists and patient to clinician video testimonial in advance care planning. Advance care planning documents have a profound ethical and safety concern related to over and under-resuscitation. These medical errors can be fatal or continue the life of a person against their autonomous wishes. The ethical and safety violations occur when providers do not adequately understand the scope or application of documents. In most cases, providers believe the documents call for withholding or limiting interventions, when, in fact, they address the full spectrum of treatment choices. Research indicates medical professionals have no explicit requirements to assure competency in utilizing such documents. Current practices represent risk to patients and compromised medical ethics. This session will report the scope of the problem, identify differences between an effective versus enacted living will. The session will provide guidance on how to minimize patient safety risks, discuss easily deployable system safeguards, such as the Resuscitation Safety checklist. Finally, the session review the benefits of patient to clinician video testimonials as evidenced in the TRIAD VIII study. Advance care planning, when done “well,” utilizing time honored principals of medical ethics can safely improve patient care, reduce cost, and minimize liability risks.

SAT 4:30 pm: Pivoting Perspectives, Different Centers: Complicated Medical and Ethical Decision Making for an Infant with Trisomy 18 and Congenital Heart Disease
(Janice Firn, Stephanie Kukora, Naomi Laventhal, Christian Vercler) 

Despite increased provision of supportive interventions for infants and children with Trisomy 18, poor long term survival and considerable comorbidity continues to spur debate regarding which therapies are beneficial and should be offered to these patients. Using a case, this session will explore the diverse viewpoints, roles, and responsibilities of parents and interprofessional providers within and between centers to coordinate and determine ethically appropriate care.The moderator—a neonatologist/ethicist—will introduce the case: an infant with Trisomy 18 not offered surgical palliation for a heart lesion found to be more severe than anticipated. His parents wish to extend his life as long as possible and bring him home, and must choose between discharge to hospice or surgery at another center. The first speaker— a neonatologist/bioethicist with expertise in values conflicts and shared decision-making, will discuss changing approaches to Trisomy 18 care, families' perspectives on these children, how providers and parents view outcomes differently, and the conflict between goals of “going home” vs “trying everything.”The second speaker—a surgeon/ethicist, will weigh the obligations of surgeons to offer or not offer operations they feel are non-indicated. This speaker will discuss how to navigate conflicting perspectives from teams at multiple institutions using competing frameworks for medical/qualitative futility, and whether an operation not offered means 'ethically impermissible' or 'not possible.”The third speaker— a social worker/clinical ethicist— will discuss interdisciplinary disagreement between providers about the “right” course of action and external pressures on these decisions, including media publicity, parental support groups, and political influences.


SUN 9:15 am: Clinical Ethics and Medical Futility from Theory to Practice to Practicality: Framing a Conceptual Model (Michael O'Bleness)

As a matter of bioethics medical futility is a values judgment framed in the struggle of competing and oftentimes conflicting perceptions. The conflict over medical futility is an encounter between three competing authorities, patient-physician-institutional or more globally patients as a group, the medical profession, and socioeconomic forces each desiring to exert autonomy. Ethical problems within the clinical setting continue to develop with increasing complexity and variation. Complex adaptive systems theory and evidence-based practice are utilized to understand group dynamics while maintaining quality care. This proposed conceptual model emphasizes the patient-clinician-institution relationship identifying areas of independence and interdependence, based in assessing health literacy and capacity, adopting applied clinical ethics in resolving conflict. The ability of patients and families as consumers of healthcare to engage in a meaningful dialogue with healthcare clinicians is fundamental to the decision-making process and relies on accurate assessment of health literacy and capacity. Capacity is central to an operational definition of health literacy referring to an individual’s inherent capabilities and their established skills. This capacity is influenced by familial customs and values, education, and prior experiences with the healthcare system. This model capitalizes on the inherent strengths of human capital (clinical staff) in promoting health literacy and maintaining the relational autonomy of patient-clinician-institution. The implementation of this conceptual model can help operationalize and be instrumental in, establishing and maintaining open lines of communication within the multidisciplinary team and furthering relations with patients and family regarding end-of-life issues and treatment. 

SUN 9:15 am: The Happy Demented Patient and the Law of End-of-Life Surrogate Decision Making (Megan Wright)

When an incapacitated person needs medical treatment, surrogate decision-makers, such as family members, physicians, or guardians, make the treatment decision, which can be especially fraught in the end-of-life context. The surrogate decision-maker may follow directions indicated in the incapacitated person’s advance directive, if one has been completed, or may use the “substituted judgment” or “best interests” standards of decision-making.

This presentation considers the case of the happy demented patient, who when legally competent directed that life-sustaining or life-saving treatment be withheld should they ever develop dementia, later develops dementia, and then subsequently contracts pneumonia, which presents the question of whether they should be given life-saving antibiotics. The presentation first reviews how philosophers of wellbeing consider what is best for such a patient, and then considers how the law of end-of-life surrogate decision-making applies to such a case, demonstrating how existing legal guidance does not always lead to a clear answer about whether this hypothetical patient should be given antibiotics. The presentation concludes with a proposal to apply disability law, which emphasizes capacity and supported decision-making, to the case of the happy demented patient rather than existing end-of-life surrogate decision-making law. Such an application would privilege capacity over competence, and dignity over autonomy, and would in the case of the happy demented patient likely lead to giving the patient antibiotics.

SUN 9:15 am: Shared Decision Making in the ICU: New Empirical Evidence to Inform Best Practice (Jennifer Blumenthal-Barby, Marion Danis, Alexander Kon, Elliott Weiss) 

Shared decision making (SDM) is especially challenging—and important—in the high-stakes, fast-paced ICU. Panel members will present an array of new empirical data on SDM in the ICU that can inform best practice.We will delve deeply into the messy details by questioning what SDM truly means in the ICU and explore alternative models. The panel includes clinicians and nonclinician researchers from five institutions. Panelists have empirical and conceptual expertise in SDM and experience in clinical ethics consultation. - A philosopher will dissect what it means to share a decision, drawing from empirical work on the preferred decisional role of advanced heart failure patients. - A neonatologist will consider the role of decision-level factors (e.g. urgency, risk) in SDM preferences using surveys of parents of neonatal ICU patients. - An adult intensivist will consider the role of the surrogate using qualitative interviews of surrogates’ self-perception of medical decision-making. - A pediatric intensivist will explore informed non-dissent, an underappreciated and underutilized model of SDM in the ICU. - A bioethicist (and former ICU nurse) will examine how to approach SDM in the setting of unilateral clinician refusal, using data after implementation of a medical center-wide DNAR policy. - Attendees will be invited to participate in a moderated general discussion. Together, we will consider how these empirical data and conceptual models can and should inform SDM at the bedside. Further, we will consider how the clinical ethics consultant can be most effective in supporting patients, families, and clinicians through the SDM process.

SUN 11:00 am: Responding to Requests for 'Inappropriate' Medical Interventions: Critical Comments from the Clinical Setting (Sharon Gray, Kamal Kejriwal, Elijah Weber)

Responding to requests for so-called “inappropriate” medical interventions continues to be a significant challenge for both health care professionals and clinical ethicists. Recently, two groups of scholars have attempted to clarify this concept, with an eye toward offering practical guidelines to aid health care professionals in handling these sorts of requests more effectively (Bosslet et al, 2015; Kon et al, 2016). There has been a significant response to this work within the field of bioethics, with many professional associations expressing their support for this work. Our own local discussion, which has engaged with critical care nurses, intensivists, and Bioethics Committee members has been less enthusiastic. Utilizing clinical cases for illustrative purposes, we argue for the following criticisms. First, we contend that identifying certain interventions as “strictly futile,” and recommending against the provision of strictly futile interventions has almost no clinical impact, because the most ethically vexing cases for clinicians rarely involve strictly futile interventions. Next, we claim that this dialogue fails to capture several reasonable aims of ICU-level care, and thereby fails to adequately capture what constitutes an appropriate intervention in the ICU setting. Finally, we contend that this dialogue fails to acknowledge the significant role of patient values in determining what constitutes appropriate care. Instead, the account of appropriate medical interventions being defended here is itself implicitly value-laden, and is thereby subject to the same sorts of concerns that led us to question the frequently discredited notion of medical futility.

SUN 11:00 am: Mediating Disputes About Potentially Inappropriate Treatment (Jason Byron)

There is a broad consensus that physicians should not offer treatment that is physiologically ineffective or harmful, even when patients or their surrogates request it. However, the boundaries between appropriate and inappropriate treatment are often contested and unclear. Even when patients or their surrogates request clearly inappropriate treatment, it can be challenging how to communicate limits on care in a way that is compassionate and connects to the patient's interests, values, and goals. How do we center care around patient values when denying requests for inappropriate treatment? We present two recent ethics consults that illustrate the challenges of these types of disputes. In one case, an elderly patient is resuscitated in the field following cardiac arrest but remains comatose and vent dependent. Because of a cervical spine injury, he cannot be safely trached. Family insists on ongoing vent support, while the ICU team feels prolonged oral intubation is inappropriate. In the second case, a young woman with complex psychiatry history insists on total parenteral nutrition despite negative GI workup. In both cases, there are disputes about the patient's values and about the effectiveness of treatment options. We discuss strategies for exploring patient interests, values, and goals as distinct from patient preferences, as well as the importance of open, compassionate communication. We conclude with practical tips for resolving disputes about care in a way that honors patient values but that limits clearly inappropriate treatment.
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